COURAGEOUS PATSY 1931-2006

PATSY DISSEN GRADUATION PICTURE 1948

patsy

THIS BOOK IS DEDICATED TO MY MOTHER, PATRICIA, WHOM, SHINED SO BRIGHT WITH HER LOVE, STRENGTH AND COURAGE THAT I HAVE NAMED A STAR IN THE HEAVENS TO HONOR HER AND GUIDE ME FOR ETERNITY, “COURAGEOUS PATSY”.   ALSO, TO MY SISTER, BEVERLEE, WHO HAS SHOWN ME THE WAY TO PATIENCE AND VIRTUE, THAT NOT ALL PEOPLE ARE BAD AND THAT IT IS POSSIBLE TO CHANGE.  MAY THEY BOTH FOREVER GRACE ME IN LIFE AND DEATH.  

AND….TO MY BEST FRIEND, DEB JUR, WHO DIED OF STOMACH CANCER, BEFORE I COULD FINISH THIS BOOK.  YOU LIVE ON IN ALL THE PLANTS, FLOWERS AND INSECTS OF THE EARTH THAT BROUGHT YOU HAPPINESS. FOREVER, AND IN MY HEART, FROM NOW UNTIL WE MEET AGAIN.

 Our father who art in heaven, hallowed be thy name

Thy kingdom come thy will be done, on earth as it is in heaven

Give us this day our daily bread and forgive us our trespasses

As we forgive those who trespass against us

Lead us not into temptation, but deliver us from evil

 …..The evil of cancer.  Amen.

 Prologue

First of all, my writing of this book was not intended to tell others how they should feel, what they should do or what their course of actions should be while coping with a loved one’s illness.   It merely is meant to help you know that you are not alone, that others understand your fears, your sorrow and the heart wrenching difficulties of coming to terms with what you will have to face during the process.

 This is my story, taken directly from my daily journal during my last days with my mother.  I suggest writing, for anyone going through a tough ordeal, even if you’ve never kept a journal before.  I think you’ll find it helps with clearing your thoughts, as well as keeping your sanity.  I chose to share my story as therapy for myself, and possibly a comfort to others.  I hope to create an understanding that the feelings you have during this process, though some may seem cold and uncaring, are not, they are human.  That’s one thing we all share, we are human beings and that’s all we can be.  I believe some human beings are better than others, not in the sense that any one person is better than another, but that some people have a better sense of what it is to be a human being, accepting all weaknesses and vulnerabilities as human nature.  There is only a small but very important part of us, that separates us from the animals.  That’s what my loving mother is still teaching me in death, I will never forget and I will never stop learning from her.  May her strength, courage and wisdom live on in me forever.  I love you mom.

   “Mother’s Lesson”  A Short Story

  Silently…..she prayed for a quiet, painless and yet, thankful end, as she obliviously wandered down the long, sterile white hallway towards the big glass doors.  She didn’t want it to happen this way, but the rapid progression of the inevitable passing of time had made it so.  She understood what could happen, and even worse, what was going to happen, it had all been explained to her.  Still, as she stood, nervously waiting for the elevator to descend, the passing of time that had so rapidly brought on the hardship of the last few months, now, hovered around her like a whirlwind.  “I know to expect anything, she thought, I’m prepared for anything!  Aren’t I?”

      As the elevator doors swished open, they released the familiar stench that had become the introductory element of what lied ahead.  “That smell…how I hate that smell.”  The nauseating odor of dirty linens, chemicals and sickness.  Though it had been several weeks since her last visit here, the pungent odor was one of the lingering experiences that always invaded her senses at Mt. Washington hospital.

     She stood in the elevator in dreaded anticipation of the nightmare that faced her.  Each time the elevator rose and then stopped, she could feel what felt like a yo-yo in her stomach, weighted by a large steel ball.  Several people rushed out of the elevator at once, shuffling around her, but she did not notice them.  She stepped out and slowly proceeded down the hallway, which was congested with strange looking apparatus and a few hurried nurses.  It was all a blur, as if she were walking in slow motion, merely observing, but not a part of it all.

     The door was just ahead and stood ajar by a few inches, feeling apprehensive, she approached and slowly pushed the door open.  There were several people in the room and she could hear them whispering.  Entering quietly, she looked up to see it was her young brother, Bobby and her three younger sisters, Betty, Margaret and Lillian.  All four were hovering over the bedsides, as if praying at an altar.  She felt her stomach wrench into knots as she moved towards them.  She could hear Betty crying, not sobbing but just weeping softly, perhaps so as not to upset the others.   “Patsy!” exclaimed Bobby… the sudden outburst caused everyone to turn their heads swiftly towards the door.  Patsy didn’t know what to say, after all, she is the oldest and she hasn’t been able to be here as much as she feels she should have been.  She has a family of her own now and had to take care of them, not to mention, that she now lived nearly seven hours away, but the guilt continued to plague her.  All of her siblings happily engage in hugs and cleansing displays of tears, as they welcome Patsy into the room. 

     Patsy walks slowly to the bed and looks down at her mother, whom, has continued to deteriorate over the last several months.  She doesn’t even look like my mother, Patsy thought, She’s just a shell of the woman I remember.  Patsy felt somewhat guilty for thinking such thoughts.  There were so many needles, tubes, tape and attachments, that the woman she had known to be her mother, now more closely resembled some kind of science fiction cyborg, half human and half machine.  Just the sight of it made her cringe with sadness, disbelief, pity and most of all, that dreadful feeling of helplessness.

      “She’s doing well, considering” Voices Bobby.  He was always a momma’s boy, though now, at the ripe age of fifty-three, he has been the one taking care of her, before her terminal condition forced the decision to move her to the hospital.  He has been the one full of optimism and unrealistic hope, though his efforts are futile, the siblings realize his denial of the truth and they continue to humor him.  They know it will be especially hard for him, he was her only son, as well as her caretaker for so many months, their father, now too ill himself to be of any use in her caretaking.  Now, at this advanced stage, there was nothing more they could do, but to keep her comfortable and try to appease her requests.

      Patsy breaks the silence by speaking, “Mom?  How are you feeling? Do you need anything?”  Her frail, weakened eighty-four year-old body lay still, looking up her, she could not answer quickly….but then, suddenly, she spoke.  “Oh!  I’m so glad all my friends from school are here!  We are all going out to lunch.”  “Yes mother,” Patsy answers with the tears swelling in her eyes.  “And you’re such a nice girl,  I’ve always liked your mother.”  “Thank you…yes…she’s wonderful”, Patsy replies, as she unknowingly steps backwards from the bedside, overwhelmed by the blow of reality that her mother does not know her.  It would have felt the same, if her mother had reached up from the bed and slapped her hard, across the face, forcing her backwards.  Not only had her mother’s body gradually abandoned its services to her, but also had the mind, that could give them their last desperate attempt to communicate their lifetime love for her.  Though she had periods of lucidity, which allowed her to recognize Patsy and the others, it was always for a very short time.  They hoped those moments would be enough to help them retain a small connection to the mother they loved so dearly.

      Patsy stood over her mother, grasping her hand and remembering her as she had been, loving, vibrant, self-sufficient, active in the community and church and full of life.  Now, she was so fragile and listless.  Patsy prayed the end would come quickly.  Time…that terrible tormentor of souls.  They wanted her to live forever.  Still, if God could just relieve her suffering, they could be thankful.  Patsy remembered telling herself that she was prepared for anything, she knew what would happen, still, there’s no way to prepare, how do you prepare yourself for this? How?  She didn’t anticipate her mother’s sadly weakened and skeletal body any more than hearing her speak so ludicrously.  Why?  Why must she have lost control of her mind?  Patsy felt robbed of the opportunity to say, I love you and that she was sorry for anything she may have done to upset her.  Patsy had to remind herself that her mother did not do this on purpose and it was not her choice to go this way.  In fact, if her mother knew what was going on, she would be appalled at what she had become and embarrassed that so many strange people had to help her do the every day menial chores, now necessary for her continuing less than full existence. 

      Just the thought of this being her last efforts to speak to her mother made Patsy want to tell her everything and anything, though her mother didn’t understand, she reserved some relief from trying.  Maybe, just maybe, some of it would get through.

      Tired…we’re all so tired, we’ve been here everyday for hours and hours and nothing, no change, Patsy thought.  The stress, the long hours at the hospital….waiting….had taken its toll on everyone, including Patsy’s ailing father.  He is so distraught knowing what’s going to happen, he just sits quietly in a chair in the waiting room, his head down in distress, he remains silent for hours.  They had just celebrated their sixty-fifth anniversary and now they were all here, waiting…the waiting….Patsy can’t help but think about how morbid it is that they are all sitting around waiting….waiting for their mother to die….and none of them can do anything to stop it.  Her mother was experiencing kidney failure and it was only a matter of time.   On one hand, the end could not come soon enough to end the suffering, on the other, there hasn’t been enough time, if only there were more time, but not like this. 

     Suddenly, a foreign presence enters the waiting room, the doctor had been in mother’s room for what seemed like an eternity.  “Dissen family?”  Fearful of what the doctor was going to say, no one responded, until Bobby hesitantly answers, “yes”.  The doctor looked as if he was going to go on, but couldn’t find the words, as if he had done this a hundred times and still didn’t know where to begin. Patsy’s father finally looked up, but only for moment, he knew what the doctor was trying to say and put his head down, covered his face with his hands and began to sob.  As everyone’s attention shifts to their father, they only hear the doctor say, “I’m sorry”, as he slowly turns and exits the room.  He’s sorry?  He’s sorry!  What the hell is he sorry for, he didn’t even know her!  Feelings of anger, grief, relief, loneliness, helplessness, regret, selfishness for wanting her back, even in that sad and sickly state, just one more minute,  please God, not yet, I’m not ready!  Just a little more time, more time….more time….more….Patsy felt as if she had been hit in the face with a medicine ball.  Her face became flush, she felt like her body temperature was rising rapidly, suddenly, her eyes were foggy…she couldn’t hear…only muffled noises of the others sobbing with grief.  Her legs began to feel weak and collapse, her vision went black and she fell backwards onto the couch.  She was only passed out for a few minutes.  When she awoke, she found the others standing over her, Betty, was holding a cold rag to her head and calling to her, “Patsy? Patsy? Come on, it’s over, we all need to get some rest.”  Patsy gradually raised herself up off the couch and at the moment she regained all her senses, there was that smell, that horrible sickening smell of illness….and death.

      The funeral service was tormentingly long, a typical Catholic service that lasted the better part of three hours.  I sat two rows back, directly behind the immediate family.  To the right, rested the casket of the woman whose passing we mourned, my grandmother.  The service went on for what seemed like and eternity, with my aunt reading passages to assure my grandmother would be raised to her place in heaven.  Occasionally, sounds of grief could be heard from the front row.  Truly, one of the most heart wrenching and emotional experiences I have ever felt.  As I reached out to put my hand on my mother’s shoulder, I thought how awful it must be for her.  I couldn’t help but think how painful my mother’s death will be for me.  The thought of it weighed heavily on me, and as I was consumed selfishly with my own future tragedy, just then, I felt my mother’s hand touch mine.  She had reached up to acknowledge that she knew I was there, I clenched her hand tightly, as if to say, I love you mom, you’ll never die, never.  In spite of myself, my mother managed to again teach me a lesson, as she sat quietly in the pew that day.  In lieu of the pain and grief she suffered from her mother’s passing, my own great mother, Patsy, portrayed a mature, accepting, dignified lady, who was silently devastated by her mother’s departure.  She understands it was God’s will and she will no longer suffer.  God, give me strength, when I sit where she did that day.    (Tracey  L. Hyde, 1993).

CHAPTER ONE

     My plane was to leave at 6:30 am and with all the hype at the airports now, that meant being there by at least 5:00 am.  I made it by 5:45 am.  I checked my two large bags, which were supposed to be only one when I started packing, funny how that works out. I stood idly by, as the bags were rummaged through by two oversized men, whom, looked like they might be more aptly suited to plumbing.  After discovering that I had not planted sharp objects, guns or explosives in my bags, I was excused to proceed to the next security area before boarding.

     Though the airport is international, it doesn’t seem international at all, it is very small.  It’s refreshing to be in a small airport where carry-on bags don’t have to be lugged to another zip code to reach your gate.  Very few travelers wandered to their gates, waiting to leave on flights bound for who knows where.  I’ve always thought it was interesting to wonder where people may be going.  A tropical island, where the water is such a cool, clear blue, you can see the soft white sand at the bottom? Paris, the city of wine, cheeses the Eiffel Tower and fashion?  Or maybe the mysteries of Egypt, to view some of the most beautiful wonders of the world, found only in the great pyramids and behemoth statues of the gods.  Who am I kidding?  They’re most likely all on boring routine business trips to Pittsburgh, Chicago, New York and the like.

     Now, to save time and the embarrassment of a possible body and/or cavity search, I have dressed myself in the least amount of clothing possible and have put nothing in any of my pockets.  I am wearing a grey sweat suit, which includes a hoodie, pants and sneakers and at the last minute, I put a white tee shirt on under my sweatshirt, which I was about to find out was a good idea.  I am carrying the black leather bag that contains my laptop and other personal affects, wallet, book, tickets, etc.  I pass on the free paper booties that are offered and continue on to the first employee in a uniform.  His first request is that I remove my sweatshirt, it’s never enough is it?  I remark that he is lucky I had decided to put a tee shirt on this morning or he may have been blinded for life.  I gladly remove the sweatshirt and lay the bag containing my laptop on the belt, then confidently proceed through the EAS (electronic article surveillance) with ease.  Good planning so far, I did not set off the alarms at least. 

    While waiting for my bags to pass through the x-ray process, I hear someone yelling to me about my bag, as if I have not been forthcoming enough and dressed as carefully as possible, including removing an article of clothing.  Now they wish to remove my laptop from its leather carrier.  I gladly consent and the machine is removed and sent through to me in a square container.  Satisfied my laptop was not programmed to explode while on board, I am free to proceed to the gate.

     While putting my laptop back in the bag and grabbing my sweatshirt to move on, I notice a well-dressed businesswoman being detained by security.  Her bags are meticulously being taken apart, from what I can tell is a result of a small pair of manicure scissors in her bag.  I am not sure if I am supposed to wait for them to finish with her, lest I be next, or move past them.  So, I stand there, like an idiot, watching intently and listening to their conversation.  Her gentleman friend is merely escorting her to the gate and has offered to take the foul, alarm-causing object to the car if it will help.  It was about this time that I received a “have a problem?” look from one the female security guards and I realized it was not necessary for me to wait.  I moved with quiet embarrassment past the gathering and proceeded to my gate. 

     Please don’t think that I am against airport security, because I am not, I am entirely for it, though I do believe that it is sad that our country has come to this.  I also believe, they should save their interrogations and demeaning personal violations for more threatening subjects than a businesswoman with manicure scissors.  But, that is another story entirely and I digress.

     I have a problem sitting in middle or window seats, it is not that I am afraid to fly, just slightly claustrophobic.  I cannot stand to feel trapped and unable to move my arms and feet.  I let my psyche get the best of me and wind up with hot flashes and on the verge of hyperventilating.  Once and only once, I vomited, not a pretty sight and not too comfortable for the travelers on either side of my cramped middle seat, I still feel it was probably worse for them.  

     Therefore, I have directly requested an aisle seat on this flight.  Upon entering the plane, I noticed that there were two seats on my left and one on my right.  I am already hoping that I am the seat on the right, as I wander down the narrow aisle looking for my assigned seat, where I will nest for the next couple hours.  BINGO!  I am happily taking my seat on the right for the first part of my journey.  I can move my right arm and leg freely and move the left side as well, a little less freely, but I won’t be hitting anyone next to me.  I feel comfortable and have safely stored my carry on bag and sweatshirt in the overhead storage bins, I am ready for take-off, now hurry up and get me out of this thing.

     I have safely arrived in Dallas, Texas, home of the longhorn and more importantly, great barbecue.  The view from the sky was beautiful as we passed over this great state, I have not traveled this route to California since I was in high school, I had forgotten how gorgeous it was.  After disembarking from my comfortable aisle seat, I headed, well, scrambled swiftly to my next departure gate.  I could have done without that, but naturally I would have missed my connection, so onward I go, across half the state to reach my gate. 

     Surprising how heavy a laptop can become after several miles, I thought my arm would dislodge from my shoulder when the moving walkways came into view.  I stood erect, as if the long haul had not beaten me, as the walkway carried me effortlessly closer to my destination.  Finally, gate 3C, now I can eat, I’m starving.  After a quick snack, which I’ll have to work at least a week to pay for, I found a place to rest.  My layover was about two hours long and I figured I’d get out the laptop and maybe play some solitaire to waste time, which I did, waste time that is, I never win.

    Funny, I don’t think I’ve ever seen this many people in big belt buckles, cowboy hats and boots, looks like the Ponderosa exploded.  No, not the restaurant that serves great steak and shrimp combos, but the ranch.  You know, from the old wild west TV show, Bonanza.  You know the one, the series ran for 15 years, a man, his sons, ranch, hats, horses, etc, oh never mind.   Anyway, if you haven’t seen it, you should, again, digressing.

        Now, let me get out of this place and on to the second half of my journey.  I asked an airline representative if this plane was structured like the last, with two seats on one side and one on the other, she told me no, there were three seats on either side. Lovely, that should be comfy, steady now, I still have an aisle seat. Then came the announcement, the gate for departure was changed, not down one or two gates but eleven gates, to gate 14C, at least I had a rest period and it is supposedly still departing on time.

     I boarded, secured my bag and sweatshirt again and sat down in my preordered seat.  There was a young girl in the window seat, already beginning to arrange herself for a nap, there was still no one seated between us and I hoped it would stay that way.  I lifted the armrest to the middle seat for a little more room, buckled up and stretched out, what I could stretch anyway.  Again, the flight gods were upon me and no one took the seat between us.  The girl was already near sleep and curled up in the confines of her chair space, in a position only the young could achieve without bone breakage or severe muscle strain.   I was afraid she would spin a cocoon.  I grabbed my book in hopes of getting through a large portion of it before landing and began to consume the words with determined abandon.  I would love to mention my favorite author as a plug for her, but Miss Cornwell may not like that.

     Then, the movie started, it was Christmas time and the movie was representative of the spirit of the holiday.  I heard the stewardess coming down the aisle with headphone offerings and looked up from my book to say I’d take one.  I should have known, my outrageous airfare wasn’t enough, now the capitalist pigs wanted five dollars more for me to be able to hear the movie, but I guess I could just read lips.  Reading is better for me anyway.  Let me clarify, it’s not that I didn’t have five dollars, or that I was mad at the stewardess, it was obviously not her fault and I’m sure it was not her idea.   It’s just that they simply were not getting it.  Remember all the begging the airlines did for people to fly again after the 9/11 tragedy?  You’d think they would give us reasons to be happy to comply, but I haven’t seen one yet.  High rates, horrible food and free movies, that is, if you pay for the privilege of hearing the soundtrack.  For those who don’t read lips, I suggest you pretend it is silent and make up your own dialogue as it goes along.  Obviously I’m kidding, or am I?  Or you can be a big spender and pay for the headphones, but I don’t recommend it.  Five dollars more or less to a major airline; not worth bothering their high priced accountants, five dollars to a middle class traveler; priceless.

     The remainder of my flight was okay, except, the passenger behind me had ordered a drink, which is fine, if you drink it like you have lips.  This guy obviously did not.  With each slurping, sucking perversion, I heard him literally sucking the liquid up out of the glass.  Now, I never saw this gentleman, and maybe I am wrong to criticize, maybe he didn’t have lips, but there were several times that I could have accommodated him by punching him in the mouth hard enough to create some.   Anyway, as I said, the remainder of the flight was, well, okay.

     Sacramento airport is familiar to me, as I have visited my sister here at least a dozen times over the years, so I just headed directly to the C carousel to collect my luggage.  Ah, the luggage carousel, there’s a special group of friendly people always gathered there.  You would think that the local asylum recently had escapees and they heard there was free lithium offered at the carousel.  Nobody will move and bodies are crowded over the belt as if it were delivering everlasting life.  A simple, “excuse me”, is unheard of, as well as letting an outsider through to claim what is theirs.  

     Children run amok, in the way, uncontrolled by parents, while they play, as if they were waiting for their turn on a ride at an amusement park.  If you are lucky enough to get an arm through to grab your bag, better pull it back quick, as others are all grabbing at it to check the tag, it might be their bag you’re stealing!  I managed to get my two bags out safely with minimal damage to myself and couldn’t wait to hit the fresh Sacramento air and wait for my ride. 

     This would be the first time I have been honored by being picked up by sister instead of taking a shuttle because she was working.   Oh wait, that’s right, a friend of hers is getting me today, well, still not the shuttle, twenty bucks and twice as long to get there. 

     Oh good, there’s my ride, now onward to see my mother.  I’m getting excited, as well as apprehensive, she has been ill a long time and I have been to Sacramento three times this year.  My sister has done a wonderful job of taking care of her thus far, doctor appointments, medications, companionship etc.  I grab my bags and make my way to the truck, after throwing both in the back, I enter the shotgun seat and attempt to avoid any immediate conversation about mother.  It’s not that I don’t like to talk about her, it’s just that I understand how ill she is, I hardly know this person and I’m just exhausted from the long flight.

      I make my remarks general and intend to keep it that way until she says, “your mother and sister are both glad you are here”.  Which was okay until she added, “your mother is doing well, she’s in a good place.” For some reason, “in a good place”, was translated by me to mean, “in lieu of the impending doom that lies in wait to claim your mother’s life, she’s doing, eh, okay”.  I immediately embraced my explosive personality and began ranting about what worthless pieces of crap my brother and other sister have been, not only through mother’s illness but father’s, when he died two years ago of liver cancer.  A minute later, I found myself apologizing to this poor woman, who thought she only had to transport me to my destination, not listen to the rantings of a mad woman as well. 

     I’m going to take this opportunity to say, that everyone should at least CALL his or her mother.  Just a phone call, seven to ten lousy numbers that make up the digital umbilical cord to someone who loves you.  If you haven’t done this for a while, put this book down now and go do it, spare yourself the regret when it’s too late.  I’ll wait . . .

    I entered my sister’s home and dropped my bags behind the blood red couch.  I headed immediately for the golden paisley recliner that cradled my now weak and skeletal mother.  I hugged her hard, twice, ignoring the reality that she felt as if I could snap her in two and added a kiss to her cheek each time, refraining from any display of tears.   She has changed drastically since my last visit here two months ago.  Her short, snow-white hair, which was always perfectly styled, now, was simply combed back from her worn and withered face.  Many years of hardship and illness are reflected in that face.  She is sitting in the chair, reclined,  with her feet up, only slightly, legs crossed, in the ladylike position of her generation.  Her hands are on her lap, one on top of the other, she has always sat this way and I will always remember her sitting like a lady.  The watch I bought her only two years ago for Mothers Day, was on her left wrist. I remember having to help her put on, because it just fit and it was difficult to clasp.  I bought it for her because it had such a delicate, feminine band and she loved it, now it was slid all the up her arm to her elbow.  Her once beautiful blue eyes were gone, one has been permanently closed and blinded from all the facial surgery and the other is barely open from fatigue.  The abundance of stylish clothing that once filled her closet are now no longer necessary, she sits in sweatpants and a tee shirt.  Her voice has changed from what was once the soft soothing voice of comfort to the rough, gravely partially indistinct sound of a woman dying.  She has had horrible coughing and choking for some time and no one seems to be able to find where the mucous that settles in her throat is coming from, as they say her lungs are clear of fluid.  After trying every possible medication to clear the fluid, it still remains a serious problem, making swallowing anything nearly impossible and talking for any length of time out of the question.

      It is now Sunday, December12, 2004 and I have arrived nearly two weeks earlier than my original scheduled flight of December 23rd, due to her condition.  My return flight is set for January 5th, one day after her 74th birthday, but I have family medical leave paperwork with me, just in case.  Looking at her now, I know it is a good thing I brought them.

PATSY AND BROTHER BOBBY 1936

patsyandbob

CHAPTER 2

MOTHER’S CONDITION

    I will not attempt to go into the detailed particulars of my mother’s condition, it would be lengthy and clinical and would require extreme research and medical consultants to get it right without a lawsuit.  I will attempt to explain what has happened, in short, over the years, so that you may begin to understand my circumstances.  Please note that I am not a doctor, nurse, LPN orderly or candy striper, I am just a daughter who loves her mother. 

     Outside of the countless non-cancer related surgeries mother has had, as well as having a tumor removed from her eye when she was very young, my mother, Patricia, has been ill for years.   It started years ago, as skin cancer and she has suffered having cancer cells, frozen, burned and surgically removed from the upper regions of her body, most notably, her face, for many years.  The surgery on her face has left her disfigured, despite some reconstruction and the right side of her face is paralyzed.  Now, mother believes her younger years of fun in the sun have contributed to her condition and she may be right, but there is something else.  Something in her make-up, something that predisposed her to a very aggressive disease, nobody knows why, but I think it is evil, it has to be, it’s cancer, the disease that eats you alive.

     The cancer rooted itself near her brain and deep in her face, requiring radiation. I do want to mention, that when I was not here and my sister was working, volunteers for the cancer society took her to the hospital, waited for her treatment and returned her safely home.  These people are remarkable and should be commended for their efforts to help others.  I was amazed to learn there was such a service and I am very thankful for it.   I had the pleasure of meeting some of the drivers, one of which was nice enough to show me the way, by allowing me to ride along.  That kindness enabled me to get mother to treatments myself, during both previous visits here. 

     Before I could begin to complete my fantasy that mother was going to get better and the tumors would shrink and not enter her brain, blah, blah, blah, I received a call from my sister.  I haven’t had a call from my sister that was good news, since my mother moved in with her nearly two years ago and this time was no different.  Mother had breast cancer, the tumor was small and was immediately removed but had spread to one of her lymph nodes.  This meant, at the same time she would be receiving radiation on her breast, she would be starting the radiation on her face and head.  The radiation was to be intense, every single day, five days a week for sixteen weeks on five points total on her face and breast.  I was horrified and spent the remainder of my evening crying like a baby. 

   It was after this news and my other two trips here to help mother I decided I would spend Christmas, New Years 2005 and mother’s 74th birthday in California with her.  I had not spent a holiday with my family in many, many years due to the nature of my occupation, holidays are a no-no for vacations.   I firmly requested this time off and let it be known that I was going to be with my mother, I had served the company faithfully and deserved it.  Luckily, I pulled it off without a pink slip. 

     I had only briefly talked to my sister about my plans when she was making reservations.  I came up with some dates that I thought were suitable and she sent me tickets via e-mail.  I was very excited and couldn’t wait to see mother again, especially for the holidays, though it was in my mind that this very likely, would be the last Christmas I could have with her. 

     Both mother and dad loved Christmas, dad used to use so many lights on the outside of the house you could see it in the next county.  I believe there were probably just as many on his tree.  The house was a veritable fire hazard during the holidays with all the plugs for lights and moving ornate decorations of all sorts.    Now that I think about it, it’s a wonder the tree never went up in blaze of Christmas glory, I’m sure it was pretty dry by New Years, especially since it always went up the day after Thanksgiving.  I don’t think father could bring himself to take it down, it meant the end of the holiday season and if it were up to him, it would always be Christmas.

     Mother had been falling often and having what appeared to be seizures but were diagnosed as “something else”, but they didn’t know what.  She said that she could see and hear but not respond or move during these incidents, it must have been terrifying for her.  My sister added an emergency medical response alert to her home alarm system and mother was to wear a necklace with a pendant that she could push for help.  Of course, being the stubborn woman she was, she would not wear it.  The only reason I can come up with, is that it was a symbol to her that she needed help and I guess that bothered her.  She was always a strong, dignified, independent working woman, now, she needed a pendant to call for help and was reduced to using a walker.  It was an admission of aging and loss of control, I can’t blame her, but we begged her to wear it anyway.    

     I received another call from my sister, she just doesn’t know when to stop, or least when to throw in some good news.  Mom was to have a full body MRI, as well as other tests in an attempt to diagnose what was going on with the trouble she was having with her legs giving out and the pain occurring in her left leg particularly.  I was terrified at what they would find, because with mother, it seemed, the news was always bad..  

     No matter how much positive energy I attempted to send her way, it wasn’t enough, a second phone call brought the horrifying results.  The cancer had metastasized into her spine and neck and apparently had been there for a long time, there was nothing they could do.  They could not tell where the origin of the cancer was, they guessed it was her breast, but I have my own reasons for disagreeing.  So, mother was sent home, at her own request, on Hospice. . .to die.

  That was the deciding factor in the change of my flight plans to sunny California for the holidays.  It was important to me to spend as much time with mother as possible, after all, you only have one, well, at least I do and she’s been fantastic.  Call your mother.

PATSY’S FATHER AND HIS MOTHER 1929

PAPANDMOM

Officer Robert Dissen (VonSchwabedissen) with his mother in the backyard in Mount Washington, Pittsburgh, PA

CHAPTER 3

ODE TO A SISTER

   To protect my sister’s privacy, I will speak only briefly about her incredible qualities.  As you have probably noted, she lives amidst the hustle and bustle of the city of Sacramento.  I personally like Sacramento and have contemplated moving there every time I visit.

     My sister, Beverlee, was in the Air Force for seven years, I still remember her leaving home at seventeen and the desertion I felt from I what believed was her betrayal of me, but that issue would probably be better served in therapy.  She was last stationed in California and loved the weather, as well as the people, so, she stayed and has been there for the last twenty plus years.  She has been very successful in business and I have always been proud of her achievements as a corporate executive. 

     She is a lighthearted person, who loves to laugh and enjoys the company of her friends.  Her two silly dachshunds, Samee and Sydney, are the light of her life and she spends a lot of her time talking, playing and singing to the little hot dogs or “beaners”, as she calls them.  Sometimes I’d swear she hears them talking back.  She spreads laughter with her antics and little stories she makes up about the beaners, like, “wonder if they ever want to blow their nose?” Or, “if they got mail, their mailbox would say, Bean and Bean”.  Not exactly indicative of a sound mind, but it works for her and entertains the rest of us, who have to sit and watch her ridiculous display.

    Her home is modest, but beautifully decorated. The burnt orange tile that makes up the patio is warm and the ambiance restful.  It has a small pond and a lot of lovely plants and flowers, as well as a trellis, which leads to a small-secluded area with more plants, climbing flowers and a chair for contemplating the world.  This was a perfect spot for mother to spend the rest of her days and I am thankful to Beverlee for taking mother into her home for her last year and a half on this earth.

     I’ve been here three times this year, because Beverlee paid for the tickets, all three times.  I stiffed her on half the price of one ticket because I had seventeen hundred dollars in vehicle repair bills, still she never said a word and she bought two additional tickets. She made it possible for me to spend the last days of mother’s life with her, I will never forget her for doing this, what a wonderful gift.  I am afraid, the only way I can repay her, is to share this story of her generosity with all of you. 

     That is the story, in short, of my big sister, whose heart is without measure and love for her mother is obvious to all.   We have always been close and I appreciate her being in my life.  Thanks Miss Bev, for all you did for mother and all you continue to do for me.

THE AUTHOR

     Fortunately for you, I’ve never been one to talk about myself.  I could tell you the truth about me right here and now and risk having you put my book down before you have been fully gratified and enriched by it or…I can let you piece me together later from the distraught ramblings of my journal.  Yes, I think I’ll do that…a little mystery never hurts a story, other authors make millions on mysteries.   I will tell you this much . . . call your mother.

 SEGWAY

If you haven’t gone through this, you could never know what I have been through.  If you know someone who is caring for a loved one who is on hospice, and you haven’t done it yourself, please don’t tell him or her that you understand what he or she are going through, because you don’t.  Your heart may be in the right place, but your head is not.  I don’t say this to be a smart ass, offensive, cold-hearted, a bitch or any other negative interjection you can think up to call me.  It is important to understand that this experience is so totally unique and different than anything else in this life, that all I can say is, that it changes you.  It changed me, and I know it changed my sister.  That said, please, tell them you are thinking of them, ask if they need anything, send them your prayers, but never say you understand, that is, unless you have been there.  

     Neither my sister nor I are endorsing the use of Hospice as opposed to other avenues of health care as the way to go, but it was our choice and it was mother’s choice.  I’d do it again and I have absolutely no regrets.  I’m sure my sister would agree when I say, that if you choose Hospice, please, please, make sure you do your homework.   It is important that you make an educated decision and fully understand what Hospice responsibilities are through this process, and more so, what yours will be.  If possible, we recommend that you speak to someone who has had this experience outside of Hospice representatives.  For the record, my sister and I have established that “Hospice is not for wimps”.

     The following pages are taken from the day-to-day journal I wrote while spending my last days with my dying mother.  I have done my best to change my disconnected ramblings and rantings, to complete sentences for easier reading, should you dare to read on.  I hope that sharing my thoughts from this experience will help someone, anyone, to understand that they’re not alone and that other people have been where they have been, seen what they have seen and loved like they have loved.

MISS BEV AND ME 1967

bevandme1

Beverlee (left) and I with Santa, I was three and she was eight…aren’t we adorable?

DAY ONE                                                                                                    12-12-04

     I survived another long but at least fairly comfortable flight to Sacramento.  Beverlee is happily arranging her Christmas decorations in the living room in anticipation of starting to decorate her perfectly shaped tree.  Mother notes its perfect shape several times.  I am glad the tree will make her happy.

     The lights are all meticulously placed on the tree by Beverlee.  This had to be done first, before the ritual applying of decorations could begin, creating the multi-colored symbol of the season.  She asks if I am going to help, but it has been years since I have been exuberant about Christmas and I tell her “no”.  She replies, “no?” then reads the reluctant look on my face and adds, “it’s okay, you don’t have to if you don’t want to”.  I remained on the couch….I know….Merry Christmas….blah blah blah ……but, already I can’t stop looking over at mother and I am consumed with sorrow and wondering what she must be thinking….I sit quietly most of the day….

 DAY 2                                                                                                         12-13-04

   Woke up early, it is four thirty in the morning and I can’t sleep. I Feel a little hungry.  I grabbed some cookies from the cabinet as quietly as I could and returned to Beverlee’s office, now transformed into my bedroom.  Bev purchased a futon, which serves as my bed, it was very thoughtful of her and is much more comfortable than the air mattress from my last visit.

     Sitting at her desk, I hooked up to the internet to check my mail, ebay account, etc.  It’s Monday and Bev is staying home one more day.  She has things to do, including a trip to the funeral home to sign papers.  I can tell she is distressed at having to do this and I want to tell her that I would go with her, but one of us has to stay with mother, and that’s me.

      Mother and I sat quietly watching TV while awaiting Beverlee’s return.  Mom has been constipated for a long time and I gave her two tablespoons of a laxative and a small glass of prune juice to “encourage” the issue.  Suddenly, the silence is broken by mom’s urgency to get to the restroom, noted by her getting up quickly and grabbing her walker.  I swiftly rushed to her aid and assisted her to the restroom, unfortunately we were too late.  

     I handed her a warm rag to wipe her legs, as I removed her pants and rinsed them for washing.  Upon walking past the kitchen, I noticed Beverlee pull into the driveway.  I opened the door as she was removing handfuls of small plastic bags from the trunk of her sparkling black Beemer.  I held the door for her and briefly explained what happened, requesting that she clean the small spot on the chair, as I continue to assist mom, she agrees.

   Despite the small amount of diarrhea, she was still constipated and we left her, at her own request, to sit on the pot.  We discussed what to get to help her.  Suppositories?  Enema?  As I convince Beverlee to contact a nurse for advice, we hear mother yell.  We rush to the restroom to discover that mother is okay, just relieved that she had passed a difficult part of the blockage.  She requests to sit longer in an attempt to pass the rest and we leave again, instructing her to call when she is ready.   Mother’s medications include some narcotics, which we have learned, tend to constipate by hardening the stool.

     Upon hearing her call for us, Beverlee grabbed some clean clothes for her and I got a warm soapy rag.  It is at this time that I am smacked in the face with the reality of my mother’s limitations.  She stands over the sink to brace herself and allow me access to wash regions of her body that were once private only to her.  This strong but modest woman, is now, bent over a bathroom sink to allow her daughter to clean off the excrement, I know this must be extremely hard and emotionally painful for her, I want to cry now, but I know I can’t.

     I helped mother back into her room to sit on the bed and dress.  Beverlee finishes cleaning up the bathroom and we all return to the living room in hopes that the sudden unpleasant disturbance has been resolved, for today.  I can tell mother is embarrassed, she shouldn’t be, I want to say something to her to let her know it’s okay, it’s not her fault and I love her unconditionally, but  I realize it is best to just let it go, her pride has been damaged enough.

     Beverlee receives a call from the social worker, she wishes to come speak to mother and she will be here shortly.  Upon her arrival, she is friendly and full of smiles, an attitude the room probably needed.  She spoke to mother for a while and mother did not seem as agitated as usual when bothered by visitors.  When she asked if I had any questions, I explained that I had only been here a day and was still trying to catch up with everything.  Therefore, I did not have questions…yet.  Then, she asks me if I understand what is going on with my mother.  I was annoyed by what sounded like a stupid question to me, as well as an insult to my intelligence and I answered rather shortly, “Well, yes!”  Did she think just because I had not been here every day, that I was not speaking to mother and Bev constantly and keeping up with her condition?  Was she kidding?  I am not a child for Christ sake.  Aware of my defensive tendencies and angry demeanor, I stopped there. 

     Outside of the delivery of a wheel chair and suction machine, the rest of the day remained uneventful.  The fact that mother did not need these items yet, only secured the reality that she would soon, but how soon?  Thoughts of how rapidly mother may start to decline terrified me.  Will I be robbed of my time with her today? Tomorrow? The next day?  I can’t stand it already, this can’t be happening.

COURAGEOUS PATSY STAR CHRONICLE

chronicle2

This is the certificate from the star I named with the star registry, it was my Mother’s Day present to her a year before she passed away.  The paragraph to the left, is my silly attempt at making it personal for her.  I selected this star from the Capricorn constellation, her birth sign

DAY 3                                                                                                         12-14-04

     Still trying to adjust to mother’s morning routine.  I checked on her a little after eight and she looked so cute lying here with her hands behind her head, staring at the ceiling in wait for one of us to get her.  Beverlee has returned to work this morning, so, I’m on my own.

    I sat her up and she moved to get on her port-a-potty by her bed.  She no sooner sat down, than she appeared dazed, her eyes dialated and she was swaying a little.  I was afraid she was going to pass out and I grabbed her by wrapping my arms around her, while attempting to get her to tell me what she was feeling.  After a few moments of suffering my own silent terror, she told me that she was dizzy.  I held onto her until it passed and then sat her back on the bed.  I thought she would rest there a minute, but, being the incredible determined woman she is, she asked for her pants.  She got dressed and we moved on into the living room, as if nothing had happened. 

     I retrieved her coffee, prune juice,  laxative and made myself some toast.  Though eating felt like a mockery with her barely able to finish a spoonful of cereal.  Hospice called early and I thought it was the nurse on the other end asking to stop by, so I agreed.  A woman appeared at the door fifteen minutes later, only it wasn’t the nurse, it was the home health representative from hospice.  She introduced herself and began saying that she could bathe mother and change her bedding.  I told her that was not necessary, as my sister and I were doing that.  She continued on about how some people can’t do it because they are working or it is too hard for them.  I replied that maybe she did not understand, my sister and I want to do it, we are fine with it and mother wouldn’t want anyone else doing it, nor do we.  She responded by saying that she did not know why she had an order to come here, I told her that I didn’t know either.  I explained to her that we would call if we needed assistance in the future, thanked her for coming and escorted her to the door.

     I got the beaners from Bev’s bedroom, where I had put them, after the knock at the door and their incessant barking response in excitable anticipation of a stranger entering their domain.  I was attempting to return the household to silence when the phone rang.  This time, it was the chaplain with hospice, he wished to stop and see mother.  I agreed, knowing that mother wanted to make arrangements to see a Catholic priest.  He arrived very shortly after the call and the crazed beaners were once again incarcerated in Bev’s room under extreme protest and I returned to the living room.

  The chaplain was nice and told mother that he would contact a priest at a nearby parish to visit her.  He told her that he would not keep her talking and left after a few minutes.  Mother was agitated and refused to finish her cereal and coffee, saying that she can’t eat with someone here.  Reluctantly, I took the cereal and coffee to the kitchen.  I let the dogs out and I couldn’t believe it, the phone rang again.  This time it was the nurse, thinking a nurse was a good idea after the mornings “incident”, I agreed to her coming, later I would find out this was a mistake.  She said she would be here shortly and routinely, I gathered the dogs to take them to their temporary prison, and again, I prepared to disrupt mother.  This would be mother’s regular nurse for the duration of her illness and this was to be her first visit.

  The nurse was pleasant and introduced herself, asking mother how she was feeling today and of course, the queen of pain minimization said, “fine, everything’s fine”.  We discussed her medications, pain, cough, etc, and then the nurse looked at mom’s file and said, “So, it’s in your lung.”  Both mother and I were shocked, as we replied in unison, “what?  Nobody ever told us that.”  Mother immediately said, “no, my lungs were clear”.  The nurse opened mom’s file again and reiterated, “yea, it’s right here”, then reading something about her right upper lobe.  The nurse immediately explains that her lungs were clear of fluid, but there was a spot in the upper right lobe of her lung.  I noticed the horrified look on mother’s face and my stomach shriveled up to a prune, I thought I would vomit.  I wished I could do something to change what had just been said, but the damage was done.

   Thank god, right then the phone rang and I prayed that it was Beverlee, that prayer was answered.  I told her what the nurse was telling mother and Bev told me that she and mother had already agreed at the hospital that they didn’t want to hear anymore.  They were aware that the situation was terminal and that the cancer was through her body.  Bev requested immediately to speak with her.  I brought the phone in and said, “it’s my older sister, Beverlee, and she wants to speak to you”.  I listened intently to the responses on this end of the conversation, for a quiver in her voice that would be a result of Beverlee’s reprimand.   I only heard the nurse say, “she said she wanted to know”, then adding that she knows doctors, and some of them have a hard time telling patients everything.  It was my thought that it was not her place to come in here and read mother’s file to us, she merely was to take vitals and make sure we had the necessary medications.  Anyway, the conversation became friendlier and I knew that Beverlee’s laid-back demeanor had conceded that it was a miscommunication. 

     The phone was returned to me and Beverlee and I had words about our difference of opinion.  I believed it was not the nurse’s place to discuss the details of mother’s condition and Beverlee agreed, that point anyway, but dismissed the incident as a “mistake”.  To me, knowing all the horrid details was not going to change the outcome, it would only upset mother and us and the result would be the same with or without it being in the lung, so why bring it up?  As our words became slightly more heated, I reminded Beverlee that we have two completely different personalities and that I had to recognize that she was normally calm and collected.  But, she also had to recognize that I am explosive and volatile and extremely protective of mother.  We are what we are and we can’t change it, but we can agree to disagree.  This helped us to note that fighting was not going to solve anything nor help anybody.  We terminated our conversation and I returned to the living room. 

   The nurse was going to get something for the pain in mother’s legs.  She had been taking darvocet, which targets muscle pain, mother’s pain was now believed to be caused by nerve damage.  The medication would come later today via courier, dexamethasone, mom would receive one tablet every four hours.  The pill would be small and hopefully easy to swallow, since swallowing has been difficult without choking.  The nurse also ordered something for her incessant coughing, which had been going on for months and nothing worked to suppress it.  Now we would be giving her, dilauded, 1 ml every three to four hours.   The nurse told me I would get the medications later today, said her goodbyes and left.

     For the third time, I released the hounds and attempted to restore the peace, but it was too late for mother, she did not speak the rest of the day.  I still believe the lung thing upset her, I know it did me.    It breaks my heart that she had to hear that, I can’t imagine what must be going on in her head.  I continue to beat myself up for allowing this happen and it’s eating me alive inside that I cannot protect or save her.  Why God? Why my mother? Why like this and why now?  So many questions and all without answers.

HALLO-WEENIES

halloweenies3

Dachshunds, Sydney (left) and Samantha (Sammy-right), the crazy beaners that light Bevelee’s days, and yes, they are dressed for halloween….it was this, or them on Christmas morning in their ducky bath robes….I know, I wish I were kidding, but I’m not.  Sammy’s left ear has stuck straight up since birth, a feature that has earned her the nickname “left turn”.  Both dogs are adorable loving companions.  You can view a watercolor of left turn, done by my artist friend Leslie White, by clicking on her link under my blogroll.

DAY 4                                                                                                         12-15-04

     I got up right after Beverlee left, a little after six o’clock.    I already did the other disturbing thing that has become a ritual, standing in mother’s doorway to be sure she was still breathing.  Funny, I used to sneak up to her doorway on Christmas morning when I was little, coaxed by my siblings, to see if she was up yet, so we could go downstairs and get our presents.  Now, it was to make sure she was still breathing, what a twisted world.

     I attempted to spend some quiet time in Bev’s bedroom, so as not to disturb mother yet, it’s too early. The phone rang a little after seven, it was the nurse, inquiring about the effectiveness of mother’s new medications.  Knowing we hardly had a chance to administer them after receiving them so late, I just agreed with everything to end the conversation.  I was afraid the sound of the phone ringing had awakened mother, so I went to check on her again.   She was still lying on her side, so, I assumed she was still asleep, and yes, breathing.  I checked on her two more times before finding her awake, she asked me what time it was and I told her eight-twenty.  She exclaimed, “oh, I like to be up by eight or eight-thirty”, and threw off the covers in a hurry, as if she had somewhere to go, I wish she did, I miss her energy.

     I assisted her to sit up, but made her sit there for a minute, to avoid a repeat of yesterday’s dizzy incident.  I put her pants on over her legs as she sat on her pot and she requested her “don’t bug me” sweatshirt.    Her favorite sweatshirt, which is now huge on her and she is practically swimming in it.  The sweatshirt white with a big smiley face with two eyes, a smiling mouth  and a little ladybug for a nose.  It says, “don’t bug me” on it, she kills me, I think she’d wear it everyday if I let her.  Anyway, she finished dressing and I gave her the walker, I always walk directly behind her, just in case.   I watched her get safely into her recliner and I turned on the Today show for her.  I went to make her coffee and get her prune juice and laxative.

     Following my developing routine, I returned to the bedroom, emptied and cleaned the potty bucket, and put the port-a-potty over the commode.  I carried in her Kleenex and plastic “spittoon” to prepare for the coughing up of mucous that happens every morning now, shortly after she wakes.  I made her a very small bowl of cereal and I returned to Beverlee’s room for a bit.

     A short while later I heard mother coughing, I rushed to the living room to be sure she would not choke.  It wasn’t long, before the choking and gagging became fierce and she managed to tell me that she was choking on the cereal, it was too thick to go down with all the mucous.  I grabbed the suction machine from her room and assisted her in getting it out, by putting the tube in the side of her mouth and carefully and only slightly moving it down to the top of her throat.   We did this several times before she began to calm down.  It was becoming more apparent that solid food was pretty much out of the question.  I re-heated her coffee in the hopes that the hot liquid would feel good on her throat and maybe help to clear what menacing sludge remained.

     Beverlee made her routine phone call from work to check on our activities, I try not to upset her while she is working, but it’s hard not to tell her everything or call her on my own, so I know I’m doing the right things and because I feel like I am absolutely devastated every moment.  Mother and I proceeded to watch TV together, as she did her crossword puzzle, I’m so glad that she can still see to do her puzzles, she loves them. 

     Mother went on with her day unaffected, but I was still horrified over how she had coughed and gagged on a small spoonful of cereal, after all, she has been using a baby spoon to eat.  While assisting her, I felt helpless, even though I was helping .   “Stuff” kept building up in my throat, my psyche fooled me into thinking if I cleared my throat or coughed it up and spit, I would get it out for her.  I literally found myself clearing my throat and wanting to spit it out, as if it would help her, it was a bizarre psychological experience and one that I know will repeat itself whenever I have to help her with this.  Persistent figure that she is, she tried a couple more bites of cereal, but she just couldn’t get them down, she asked me to take it away.  I replaced it with a nutrition drink, which I cut with 2% milk to thin it and hoped I could get several down her before the day was over, she’s supposed to have four, I think she drank two.  

     We had another accident today, just a small one, so after mom was done on the pot, I asked her if she wanted to just get in the shower, she did.  I moved her potty chair into the shower for her and assisted her inside, then left her to her privacy, telling her to call when she was finished.  Of course she didn’t have to call because I was so nervous I kept checking on her, but she did well by herself.

    We watched TV all day and Beverlee came home around dinnertime.  She made pork chops and I made salad.  I could barely stomach eating dinner with mother having nothing all day but drinks and I was still sick over the cereal incident. 

     I could hear her stomach growling and gurgling from across the room, so I knew she had to be hungry.  I asked her if she would like a dish of vanilla ice cream and she said, “yea.”  I gave her two small spoonfuls, yet she still managed to leave some for the beaners.  It kills me that she can’t eat, I went through the same thing with dad, I wanted him so desperately to eat something, that I brought him his favorite foods into the hospital every day, he never touched them.  It’s the disease and I know it, but knowing doesn’t make it easier to watch.  Anger, that’s what I feel and I can’t……angry that she’s not trying and angry that he didn’t try.  I know it’s not about that, but emotions get pretty mixed up when you watch someone you love die, twice.  Everything seems so out of control, it pains me that I can’t help her, I can’t stop looking at her, scared about what it will be like to not be able to see her there.  I can’t keep myself from asking, “Why?”…  “Why her God? Why?”  I know that’s an age old question from everybody who has ever lost anybody, and I also know, there is no answer.

     Mom went to bed after we watched scrooge at eight-thirty, I had terrible cramps and retired shortly after we got her settled.  Another day down, only four Days in and this is pretty frickin’ hard . . . but, I wouldn’t change our decision for anything.

PATSY IN A RESTAURANT WITH FRIENDS

momeating

Mom out with friends, she is happy, having fun and above all, eating.  This is a favorite picture of mine, which,  stays by my computer, so I can remember her this way.

DAY 5                                                                                                         12-16-04

     I woke up late, it was eight-fifteen, so I went directly to get mom.  After our routine, I asked her about breakfast.  She has ruled out oatmeal, as well as the flake cereal that caused the “incident” the previous morning.    I brought her a bite size cinnamon donut, cut into pieces, as well as a small dish of peaches.  There I go, attempting to make her eat again, it’s messed up, but I can’t help it, I have to try, I guess it’s more for me than her, it makes me feel better, it’s evident she doesn’t want to eat.  Either she eats it or she doesn’t, there’s always nutrition drinks.

     The day was uneventful and there were no visitors.  We watched the regular stuff on TV, The Today Show, Hunter, Bonanza, Golden Girls.  While changing channels, she discovers the movie, “weekend at Bernie’s”, is on and asks if I have ever seen it, I told her no.  Mother was never one for comedies, so I am shocked when she tells me, it’s hilarious.  It is half over, but I want to watch it and share it with her, so we do, I’m glad I did, I enjoyed watching it with her, it was one of the few times I knew I would hear her laugh again.  Each time she chuckled or remarked how silly the antics were, it warmed me for a moment, we both needed it.  Still, some sick part of me was disturbed about the dead body through the whole thing and I wondered if mother thought about it….I know, morbid…..but I can’t help it, the whole thing is freaking me out.

      The day went well and I went to bed shortly after mom again, at about nine or nine-thirty.  I thought Beverlee and I would talk more in the evening, but we haven’t, it’s been like sitting with mom, just watching TV in silence.  I feel like I should be talking about anything and everything with mom, but what to say?  Well, that and she can’t talk much without coughing profusely.   I’m missing out and losing precious time with her.    I hope she knows how much I love her, I hope she understands how this is killing me and that I wish I could save her, I still have questions about this life, I still need a mother….I’ve had her for forty years, but it’s not enough, I’m not ready . . . I’ll never be ready …..                   

 DAY 6                                                                                                         12-17-04

     Friday, pretty uneventful day, thank God.  Nurse called and left a message, but mom didn’t want to see anybody and I figured it could wait until Monday.  When Bev asked if the nurse called, mom said that she didn’t hear anybody call, so I left it at that, but I felt guilty for bullshitting Beverlee.

    Bev brought some fish and chips home for dinner, it was as thoughtful as it was tasty.  Mom ate a few small tid-bits I pulled from my filet, but it was hardly enough to feed a mouse.  I just can’t imagine an entire meal being less than a mouthful, it breaks my heart.  I have been bringing nutrition drinks to her one after the other, attempting to get at least three of the four in her.  You would think that I thought these drinks were a magical life-saving elixir, the more she drinks the more she gets better… not.   She has done well drinking them, but I think she only does it for me.  Just like all the other sacrafices she has made in this life, doing without for us, never doing anything extra for herself, lest it cause us to go without something.  How does such a loving selfless mother come to this end?  What forces are at work that brought about this terrible plague?  I want to tell her I had a good childhood, that I was happy and played a lot and that I always had a good Christmas and fabulous toys and plenty to eat and I appreciate her sacrifices to give me this.  So why don’t I say it?   I guess because….. it feels like, “goodbye”.

 DAY 7                                                                                                         12-18-04    

 It’s Saturday, so Miss Bev’s home, but she’s busy cleaning house, it’s her Saturday ritual, after reading the paper.  Mom is doing okay, I have already sucked the unwanted mucous from her throat with what has become a close friend to me, the suction machine.  Beverlee looked disgusted as she watched me use my machine, she has not had to remove the vial congestion from mother’s mouth and throat yet.  Mom removes her upper plate while we do this and I have added cleaning them and bringing them back to her with her bottom plate to my routine.  She sleeps with the upper plate in because she believes it helps reduce the mucous in her throat during the night.  Upper plates, bottom plates, what makes the difference, she can’t eat. 

    Beverlee is going shopping and she comments that she feels I should be going because I have not been out of the house.  I’m not in the mood to attempt to navigate my way through Sacramento, so I tell her that I will be fine staying here.  Mom took another shower and it went well, Bev keeps teasing her telling her that she doesn’t want her to stink.  I think mom likes to get in the shower, she says the warm water feels good on her.   I thank God for that small moment that she feels “good”.

     Bev made a nice dinner of stuffed salmon, roast potatoes and asparagus.  Of course, mother could not eat any of it.  Knowing how she used to love salmon, it kills me that she can’t partake of even a small portion.  I noticed her looking at our plates with soulful eyes, I know she wishes she could eat again, though she tells us she is fine and not hungry, I can see she is bothered by it.   If only she could eat what she wanted in these last days, it seems like such a small request in the scheme of what is happening to her in this twisted piece of hell.  I hate this.

     Christmas movies were the theme of the evening again, though Bev and I watched Spiderman 2 after mom went to bed.  This is the third time I have seen it, but what the hell, it’s spiderman . . .at least he can save people….

HERE’S LOOKING AT YOU….1966

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Me at 2 1/2 on our porch in Neville Island, Pittsburgh.  Remember, how at this age, our moms are invincible and live forever?  Too bad we have to grow up and find out that fantasy isn’t true.

DAY 8                                                                                                         12-19-04

     Today was calm, nothing really happened, same old routine.  More Christmas movies through the night, Beverlee’s all about them.  I went into the office to use the computer during one, but Bev and mom felt the need to call me out and ask me why I don’t like Christmas movies.  I came out to appease their inquisition.  I replied that it is not necessarily the Christmas movies that I despise, it is the quality of the ones they are watching.  I sat down and rejoined them anyway.  The Christmas spirit eludes me with my mother sitting next to me dying, but I can’t hide from it, it’s happening no matter what I do.

     Mom went to bed at her regular time and Bev and I went shortly after her, around nine.  Today marks the end of the first week, damn, I’ve seen a lot and I’m beginning to learn a little about this horrible disease.  I can’t believe this is happening, at times it seems so surreal I think I’ll wake up and everything will be fine….just a bad dream…..a nightmare…..mothers are always there to console you and keep you safe when you wake up from a nightmare….right?

DAY 9                                                                                                         12-20-04

     What a screwed up day.  Mom and I started out great, it makes me feel good when she says she feels good.  Her eyes were bright, she was sitting up straight and she looked happy.  We had left over chicken noodle casserole for lunch and she ate it, well most of what I gave her, and it was quite a bit for her.   We watched TV until Beverlee arrived, then it happened…

     One of Beverlee’s friends thought it would be a good idea to send mother a choir to sing Christmas carols to her.    The choir was attempting to raise money to go on a trip, there must have been at least twenty of them.  I was so glad that Beverlee arrived at the same time they did, because I knew what would happen.  When I saw them all piling out of their black SUV in their tuxes and evening gowns, I knew it wasn’t going to be good and the disturbance would not sit well with mother.

   First, Beverlee explained to mom that they were out there and she was already uncomfortable just knowing that much.  Beverlee was trying to decide how to do it, as mother had a hard time walking and she was sitting with her back to the window.  It was decided, by Miss Bev, that they should all pile into the house.  The house is very nice, but the rooms are moderately small. 

     We moved mom from her chair to the couch and piled the little squawkers inside in front of the perfect little tree.  They presented her with a card and small box of candies that she could no eat.  Mom was horribly embarrassed and sat sideways, holding the side of her face that had been mutilated during countless surgeries.  I was by the door and my heart was broken as she looked toward me to save her with a look on her face that tore my heart out, she held out her left hand to me and I walked over to her.  The choir began singing, “fa la la,  fa la la” and as the chorus volume rose, I took her free hand in mine, as her right hand remained clamped over her face.  I noticed her eyes close and her breathing become more rapid, so I asked her, “you’re really uncomfortable aren’t you?”  She replied, “yes, very” and I thought she would cry.  As the chorus debated a second song, Beverlee realized it was too much and noted to them that it was enough, then thanking them and wishing them a merry Christmas.  All wished mom a merry Christmas as the crowded back by her to get out of the house.  They meant well, but merry Christmas to a dying woman?  What so fricking merry about that? 

     We got mother back comfortably in her chair and she was furious, embarrassed and completely negative about everyone’s motives.  She believed the woman that sent them, did not do it for her, but for her son, who was in the choir, so he could go on a trip. Then she was upset that they were singing to a “sick woman who’s dying” like they were saying “farewell” and that they were all staring at her face.   I tried to discount these claims to calm her down, but I understand how she felt.

      I know mother’s emotions have got to be all over the place, I can’t imagine knowing that you are sitting there dying, that you are going to die and nothing can stop it from happening.  You will never see your children again, laugh at a joke, watch the sunset, smell the flowers, see a good movie, party with friends or anything the living take for granted.  What a horrible thing to have to live with knowing.  If she is quick to anger or unreasonable in any way, who cares? She can be what she wants to be, when she wants to be, she deserves it.     Beverlee and mother argued and I tried to stay out of it by going into the office on the computer.  A little bit later, all was quiet and I heard Beverlee in the kitchen.  She had decided to go ahead and cut and bake the santy cookies from the dough she had made the previous day.  She cut the cookies with mom’s vintage cutter, which has been glued twice already.  I came out to assist her by putting the raisin eyes in and placing the trays in the oven.

     About the cookies, they are a very important part of the holiday for Beverlee and I.  Mother used to make these cookies when we were kids and we would have a ball decorating them.  We gave the santy’s bright red hats with a big white ball, white eyebrows and mustaches, after which, we added my favorite part, the fluffy coconut beard. They were lucky they got eyes then, as I was always dipping into the container and eating the raisins. 

     These cookies were tradition with us and mother and it is important to us to continue making them.  When I was little mom also made stars, trees and stockings, then set us loose to go crazy with all the decorative fixings, those silly silver ball bearing candies, sprinkles and colored icings she supplied for us.  Let it be known, that there was quite a sisterly feud over which one of us would get sole possession of the ritualistic cutters.  Needless to say, my sister, or “lefty”, as she is known in some circles, managed to secure the entire set several years ago.  I am happy to report that while staying with her, I found the cutter on a website and ordered one for both of us.  I thought it would be nice, since mother’s had been glued so many times and had broken into three pieces, as we attempted to complete the ritual this year.  I figured she could keep mom’s cutter in the box and use the new one for cookies next year, so thoughtful of me, don’t ya think?  I’m not bitter. Yes I am.

     Anyway, we attempted to include mom in the cookie baking by asking her questions about the thickness of the cookies, how long they should bake, etc.  Unfortunately, she was still upset and was a little smarty-pants with her answers, adding that it was none of her business.  We finished the cookies despite her mood and lack of participation and watched TV with her until she went to bed at nine o’clock.  We went to bed shortly after her and I am hoping a new day will bring a new attitude to us all.  I laid down to sleep, but I keep seeing mother when the choir came in and how she held the side of her face in shame and embarrassment, feeling like a pitiful old woman.  I understand how she felt and it is destroying me that she feels that way, it’s so sad, watching her deteriorate and lose herself is too much for me to take.  I’m falling apart, becoming depressed and I have no where to turn but into my pillow to cry and sob my heart out in silence.  All these emotions and I’m still angry…..

MOM’S SANTY COOKIES

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Mother always made these when we were kids, we loved to decorate them and it was a great mother and daughters activity.  These cookies are the result of Beverlee and I making them on our own on the last Christmas we would share with mother.  Not bad if I do say so myself.

CHAPTER 6

That’ll Teach That Dough!

     Mom was a great baker of all kinds of goodies.  My father loved her baking, and she always made such an abundance of cookies, breads, cakes and pies, especially during the holidays, that we couldn’t eat it all.  Most of it would find its place in the large chest freezer, to be enjoyed later.  

     Mom always made her own bread when the menu required it.  All her breads were delicious and I can remember when I was little, loving to watch her knead the dough.  I would climb up on the kitchen chair, which was more like a comfortable bar stool, sit on my knees, elbows on the counter, leaned over to watch her.  Mom would deliberately exaggerate every smacking, punching motion, thrusting her hands in full assault of the dough, to imitate a good thrashing.  This silly method of making bread would leave me laughing and giggling so hard at her actions, I would almost wet myself.  Who knows, maybe I did, I was little after all.  She never said a word, but slightly snickered at me for laughing so hard.   Every time she would pick the blob of dough up, nearly over her head, and throw it back down to the counter with a bang, I would howl and squeal with pleasure.   I admire her more for it now, because I know the exaggerations were solely for my amusement, but she always acted like it was nothing, saying, “why are you laughing?  What is so funny?”   I never missed a chance to watch mom make bread, I loved that time with her and I think she got as a big a kick out of me as I did her.

     I loved making cookies and cakes with mom, especially when I received my oldest sister’s hand me down Easy Bake Oven.  Mom would always let me take some of her cookie dough or cake mix for use in my oven and I would “bake” them in the kitchen with her.  She always shared her frosting when we made cakes together . . . funny, I was probably a better baker then, than I am now, I certainly know I did it more often back then, I didn’t want to miss that time with her.

     I remember dad always wanting her pineapple upside-down cake for special occasions, including his birthday and insisting she take it to social gatherings.  I always requested her rum cake, it was so moist and delicious and I know I will miss it with each passing birthday.  Mom had special things to bake for most holidays of the year.  On Easter, she always made me a “rabbit cake”.  It was so cute and I am glad that one year, I thought to take a picture of it, because she made it for many years in a row.  I loved that cake, she spent so much time and effort in making that cake.  The rabbit had a round head and she a used second round cake to make the ears.   The ears were attached to the top and all was covered with white icing and coconut, to make it “furry”.  Mom used red licorice to make the whiskers and added a mouth, nose and gum drop eyes.  I think even she was proud of her creation and I know that she enjoyed making it for me and loved to see my face when I saw it.  I never wanted to cut into it and it became a ritual that I would start consuming it from the ears down.  Mom automatically always took one part of the ear off and gave it to me to enjoy. 

     On Halloween, Mom always let us make puffed rice balls.  I thought making these was better than mud pies.   I could cover my hands in soft, warm butter and reach into the warm puffed cereal and corn syrup mixture to grab a handful.  Forming the balls with my buttery, slippery hands, was a blast.  I don’t know why, maybe it was the kid thing about getting grubby, but I enjoyed getting sticky and messy while making these treats.  We’d wrap them in colored plastic wrap and toss them in a bowl, what percentage managed to make it through without being eaten anyway. 

     My favorite Halloween treat began with crispy rice cereal spread on the bottom of a pan, which had already been mixed with melted peanut butter chips and other delicious ingredients.  Then, she would put on a layer of melted semi-sweet chocolate chips, followed by more of the peanutty rice mixture.  When they hardened, she would cut them into yummy sized bars.  They never lasted long, I still don’t know exactly how she made them, but, sadly, it was only at Halloween.

     Naturally there were Thanksgiving and Christmas goodies that are too numerous to mention, but they included the Santy cookies created by the cutters Beverlee “acquired”.  I know, let it go.  Anyway, allow me to assure you, all mom’s goodies were incredibly delicious and appreciated.  My mother, the baker, sadly, neither Beverlee nor I acquired this talent and we will be doing without fresh baked goods for eternity.

 DAY 10                                                                                                       12-21-04    

     Winter begins!  The day started out better, but mom has more pain today than usual, I gave her the morphine she has been refusing to take, she didn’t want to feel groggy or “not with it” while spending her days with us.  Mother never, ever complains about being in pain or even says that she is uncomfortable, the only way I knew she was having a bad morning, was because I caught her rubbing her left leg.  I’m glad I gave her the morphine, she was fine with it and remained alert, most importantly, later she felt better.  The fact that she agreed to let me give it to her says that it was hurting her.    She is a remarkable woman who remains silent for us, incredible, but unnecessary, we do not want her to be in pain and it is hard to help her when she consistently says she’s fine.  Courageous Patsy, she wants her suffering to be her own and not her children’s, her efforts are valiant yet futile, nothing could keep us from hurting through all of this.

     The Priest came today and gave mom the “anointing of the sick”.  He gave mom communion and Beverlee and I both participated in saying the Our Father prayer.  The priest then said individual prayers over us, placing his hand on our heads as he recited the prayers in Latin.  Mom liked the Priest immensely and he was very pleasant, speaking softly and with an accent.  After he left, mom became a different person.  Not different than herself really, just different than the night before when she was so upset and angry.  She said that she felt relieved, adding, “I feel so good and at Peace”.  I was happy for her and glad something made her feel good.  Mom was funny when she started saying that she couldn’t be mean or sarcastic anymore now, adding that she had to be “good”.  I laughed at her and said we would see how long the sarcastic thing lasted, she laughed too, she knows she’s a smarty pants.  Like mother like daughter.

      The day was uneventful but pleasant.  I received an email that meant a lot to me this day and I want to remember today as good and full of love and contentment.  Mom is still able to take a shower on her own, that is, after you get her in there.  The usual events took place, TV, dinner and bed.  Sounds boring, but any day that is uneventful and peaceful, is a good one.  Good or not, still crying myself to sleep.  I have to make up for when the priest was anointing her and how I could barely keep myself from uncontrollable sobbing, at the realization that this was the ritual for her last rights, normally performed at one’s deathbed.   Again, this is happening to my mother, why?

EASTER BUNNY

rabbitcake

After adding today’s chapter, I realized I still had this picture of mom’s cake and thought I had to use it as the photo for the day.    I forgot all about the chocolate chips and dyed green coconut grass around it…silly, the simple things that can make you happy,  I still smile when I see this photo and think of her.

DAY 11                                                                                                       12-22-04    

     I am ashamed to say that I have fallen behind, today is actually 12-26-04, but I will attempt to catch up.  It is Wednesday and Beverlee is at work, mother kept asking if she was coming home early, which worries me.

     I decided to decorate the santy cookies, well at least get the hats and beards done before Bev got home.  Mom is upset when she sees me doing this because she thinks Beverlee started it, then left me to decorate them on my own.   This is not the case, but I understand that she is irritable about Christmas, since dad was ill all through Christmas and new years and died on January 11, 2002.    I just explained that it was I, who decided to start them on my own, she did not look like she believed me.  Mom has a way of crossing her arms and legs while rapidly shaking her top leg and squinting at you, to let you know she’s “not buying it”.  Though she appears to be mad, she cracks me up, you just have to understand her.

     Beverlee did come home early and mom was nasty to her for no reason, makes me mad when she does that, but I know it’s the Christmas season that makes her this way.  She misses dad terribly and has said several times that she wants to be with him.  I understand how she feels, they had fifty-five years together, losing him was devastating for her, she has never recovered.

     I had taken the trays of cookies, with the hats and beards finished, into the kitchen.  After Beverlee changed her clothes, she started the mustaches and eyebrows.  I helped her finish them and we left them on the trays for the icing to dry before putting them in a container.  I’m glad that Beverlee and I share this memory of mother and the days when she was happier.  I wish I could say when she was healthier also, but mother has never really been healthy, there has always been something, doesn’t seem right, or fair. 

 DAY 12                                                                                                       12-23-04

     Days are beginning to run together, even though Christmas is coming. Beverlee’s home now for the weekend and I’m glad, sometimes I feel lost without her here.  The day is uneventful and we are awaiting the coming of Christmas Eve and Christmas, though mother awaits the passing of them.  It’s so sad to see her this way, both her and dad always loved and embraced the holiday season, his death has destroyed her.  Beverlee tells her that she thinks it is disrespectful to dad to hate Christmas and proclaims that she loves Christmas and always will, because they did, mother had no comment.  I’m sad for her that she has lost that, most all the Christmas decorations mom and dad owned were purchased by mother, including a rather valuable Hallmark Santa statue collection.  Now, to see her just wanting it over is unbearable, I love her more than anything and I can’t help her now…I’d give anything to see her happy, if only for a short while.

 DAY 13                                                                                         CHRISTMAS EVE

     Thoughts of this being my last Christmas with mother are haunting me.  The day is okay, but mom is depressed, as she has been, the nearer it gets to Christmas day.  I’m sure she’s looking forward to it being over.

     Beverlee had septic trouble and we could not use mother’s bathroom until the guy got here to check it out.  I had been outside and noticed that there was water on her patio and in her yard, I’m glad I went out there, you can do that in Calilfornia during the winter season.  It was discovered that it was the front bathroom, near mom’s room.  I felt sorry for Beverlee, having to call someone on Christmas Eve to fix it, that can’t be cheap.  Mom was going to take a shower, so, we had to take her to Bev’s room.  Her shower is much narrower and has a glass door, maneuvering mom inside was difficult for all of us.  I think this is probably the last shower she will be able to take, we will have to change our plan and start giving her sponge baths.  Not because of the structure of the shower stall, but it appears mother is having increasing difficulty maneuvering.  So, the decline continues.

   Beverlee made some nice snacks and grilled salmon and pasta later in the day, it was all very good, sadly mom could not eat any of it.    I feel horrible being able to eat with her like this, yet I eat anyway, why?  How can I eat when she can’t?  I know I have to eat to survive, but it doesn’t feel right.  I swallow each bitebut it is  hard to get it down.  Food feels like a glob of clay in my throat, and I am eating less.  Like that will hurt me, who am I kidding?

     The evening is uneventful, Christmas movies and bed.  Tomorrow is Christmas, and for the mother I love immensely, the last one she will ever have to suffer through without dad.

WHEN CHRISTMAS WAS CHRISTMAS

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This is collage of  Christmas’  past, where mother was happy and the house was decked out in Christmas paraphenailia of all kinds.  As you can see, even the dog, Muffin, was encouraged to participate, think she liked that?  We’ll never know.   The scene under the tree is a small village, dad made this and when I was smaller it was composed of many large sections that included moving parts, cars racing in circles and a giant ferris wheel,  all made of wood and painstakingly constructed by him.  He had train stations and a train track around it all, with running trains, streets and street signs, houses, etc, it was quite noisy when everything was running.  Dad would go down stairs first on Christmas morning and turn all his gadgets on, as well at the tree lights before we could come down to open presents.  Now if that is not a love of the Christmas season, I don’t know what is…so sad, that losing both my parents at this time of the season, has dampened it for me.

DAY 14                                                                                         CHRISTMAS DAY

     Morning started out lovely. Mom got onto her port-a-potty, but could hardly get up again to use her walker.  As she sat back down I yelled for Beverlee, I thought it would take both of us to get her up.  Determination beat all and mother got up again when Bev walked in.  She took her walker and we slowly made our way into the living room to deposit mother in her chair.  This was the last time mother would be able to use her walker, we have to switch to the wheelchair in the morning.  Only two weeks and she has gone from zipping around with the walker, comically yelling, “outta my way!”, to barely standing without a great degree of effort.  I know she is going downhill fast and there is nothing I can do to stop it. 

     I was going to get her laxative when she told me that she did not want to take it and then wind up having an accident on Christmas.  We skipped it for today, but I am worried about her bowels, it has been seven days since she has done anything but urinate, but again, she hasn’t been eating anything.

     Bev was ready to start the gift giving and mom told her to start with me,  because I’m the baby, they kill me calling me that, I’m forty years old after all.  Beverlee and mom had gotten a gift for me a while ago and kept it.  I was surprised to find that it was a retro “Mr. Potato Head”, very cool.  It came in nice display box with a book on the front that explained the history of the famous spud and his friends and family.  Sounds stupid to some maybe, but I love nostalgia and toys and I am a collector of some of it, and I believe Christmas isn’t Christmas, if you don’t get at least one toy.       

     Beverlee opened the ink drawing of her patio that I did in August, which, I had framed for her.  Unfortunately, the throw I had made for her, with the pictures of the beaners on it, was shipped on the 23rd overnight, but still did not arrive on time.  I was anxious for her to see it.  Bev gave mom some prizes and then handed her the watercolor I did for her, of  her family home in Mount Washington, Pittsburgh.  I thought she might like the memories of her family and growing up, dating dad, etc.  To my surprise, she cried with joy.  I did not expect her to react like that, but I couldn’t be more pleased that I made her that happy, she loved it.   I pointed to the porch and said, “this is probably where dad came up on the porch to get you for a date”, she replied, “Yep, right through there”, pointing to a break in the bushes which leads to the steps. I put it directly across from her chair against the wall, so she could look at it whenever she wanted to.

     The rest of day was spent preparing dinner, mostly on Bev’s part.  She made a fabulous pork roast, sweet potatoes, mashed potatoes and gravy.  I contributed some beans to the holiday feast, but that was all.  Mother wanted to try to eat some of it, so Beverlee prepared her a little plate, with a couple baby size bites of pork, as well as some very small spoonfuls of mashed potato and sweet potato. 

     The day immediately went sour for me, as mother began choking and coughing on her first bite of pork.  We ran to her and I grabbed my trusty machine and assisted her by sucking the foul piece of pig from her throat.  She was very upset and put her plate down, asking me to leave it, as she wanted to try and eat her potatoes.  A short while later, she asked me to take it away, it was heart wrenching for me.  I ate what I could without gagging on it, as I suffered the silent trauma of it all.  Christmas 2004, could have done without it, but I’m glad I didn’t…if that doesn’t sound mixed up, I don’t know what does.  I’ll do some top quality balling tonight, might need an extra pillow to bury my face and quell the roaring sobs.

 DAY 15                                                                                                       12-26-04

     It was a quiet day, so nothing much to report.    Mom enjoyed looking at her picture, I’m so glad she likes it.  I’ll wait to hang it in her room, she likes looking at it from her chair, makes me feel good, feeling good is a nice change.  She claims she can see a light in the corner of the living room window of the picture, I cannot see it, but she seems happy it is there and mentions it to me a couple times.  If I were a spiritual person, that would scare me, okay, it does scare me.

VonSCHWABEDISSEN FAMILY HOME

BOBBY'S

This is Mother’s family home in Mount Washington, Pittsburgh, PA.  I did this in watercolor, pen and ink and colored pencil.  Some of you, who have visited my Dissen Gallery blog site  have probably already seen this one.  I  had it customed framed for her and shipped to Sacramento ahead of me for her Christmas gift.  I was pleasantly surprised that she loved it.  I loved this home as well and have many, many wonderful memories of my visits here with her.  I always slept with her,  in her childhood bedroom, which, she then shared with her three sisters.  The house is historic and enormous, with three stories and a huge basement.  I loved to play here, walk here with my grandfather  and spend time with mother’s family.

PATSY’S FIRST COMMUNION 1939

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This is mother’s First Communion picture, she was eight years old.

CHAPTER 7

About God

     My mother was raised Catholic and went to Catholic schools.  She has never forced us children to abide by her religion, but she has always followed her own way.  Mom knew how to say the rosary and said it every night when she went to bed, to herself.  Sometimes I would hear her say the “Hail Mary”, but I never mastered how it goes.   It was important for her to see a Priest before passing, receive communion and participate in a confession.  I’m glad that we were able to arrange those things for her, since she was unable to leave the house.  I know it brought her great comfort and that makes me happy.

     For myself, I have never been a religious person, I have not been to church since I was very small.  I am afraid putting my feet upon hallowed ground would cause me to burst into flames due to self-combustion. My father was Methodist and never spoke of his denomination, so I’m not even sure what he did or did not believe.  I have had my own personal struggles with whether there is or is not a higher power.  My realistic views have always held me back, to place the burden of proof on the believer.  Obviously, no one can prove to me that God exists.  Through the use of the five senses that tell me something is real, I cannot see him, hear him, smell him, feel him or taste him.  However, I have had my moments, and many of late, where I have turned to God because I was desperate, with nowhere else to go.

     I am ashamed to say that I am a “fair weather” friend to God, and only praise his glory when I am in need of assistance no human could possibly supply.  I had an incident, which I will describe in a later chapter, where I carried a rosary with me, wrapped around my wrist,  everywhere for many days.  During this time, I made a promise to God that if he helped mother, I would no longer voice any negative opinions of his existence.  I did not promise to believe, to go to church, to pray more or to spread his word, only that I would no longer be negative to others who did.  Miraculously or by chance, mother was okay, for the time being.  I have kept my word, though sometimes it has been difficult. Several years later, I still watch how I respond in religious circles, just in case.   I remain neutral.

     Spirituality is another story and can mean many things.  Believing in the spirit world and the after-life is something I want to do, but find difficult when I’ve never had the fortune or misfortune, of seeing an apparition.  The light in the window of my mother’s painting may be interpreted to mean that she is being called from the other side, that it is a sign to her that she is going home soon.  Or, it may be just a reflection I can’t see from where I am sitting.  I want to believe that it is true and that going home will take her to gram and pap as well as dad.  Damn philosophical mind, what I want and what is, most likely, are completely different things.  So, I will continue to pray and speak to God, if he is there, he is probably laughing at my half-assed attempt to believe, if he is not, it’s cathartic to speak to the wall.

DAY 16                                                                                                       12-27-04

     Nothing much going on, mom’s liquid intake has cut in half and she has stopped asking for anything else, ice cream, cookies, etc. and she says no if I offer it to her.  I still attempt to get at least three nutrition drinks in her, but it’s futile, she is down to one and a half.  She still asks for her coffee, but I’m only making her half a cup now and it takes her all day to drink that.  I am still giving her the bite size cinnamon donut, but she has it all day as well.  She gets a quick sponge bath every morning and a more thorough one every other day, as it takes a lot out of her and she still wants to do it herself.

     I feel like her goal was just to get through Christmas for us and now she has quit.  But her birthday is coming up on January 4th and she has mentioned it, like it had some significance for her.  She has mentioned that the light in the window of the picture is further down on the window, she called me to her chair to see what she was talking about, I couldn’t see it.

      I don’t want her to quit, I want her to keep trying, but I guess she can’t, she’s tired, very tired . . . now it’s like we are all sitting around . . . waiting . . . f— this.

 DAY 17                                                                                                       12-28-04

     Screwed up mom with her medication today, she was supposed to have it, but she didn’t react well to it.  She normally is in bed and going to sleep when she gets this one, the nurse suggested we give it to her more often for anxiety.  I gave her the lorazepam and was weird all day, disoriented and slurring, thank God I didn’t do the three doses suggested by the nurse. Mom kept looking at  photographs of my nephew over and over.  She was turning them all around as if she could not make them out, then asked me, “what is this, what is this thing?” I looked at the photo of my nephew leaning against a fallen tree and she asked me what my brother was doing.  I told her that it was not him, it was his son, leaning on a tree.  She then responded, “he’s a tree?” I said, “no, he’s leaning on a tree mom”, she still could not see it and put the pictures down, saying, “those pictures are weird, I don’t know why he sent those”.   I called Bev because I didn’t know whether I caused it or not, she was already on her way home.  The larazepam can cause hallucinations, so, I was a little weirded out.   Mother has had no problems with knowing what was going on around her, hell, she still reads the paper every day and does the crossword puzzle, even though I know seeing is becoming very difficult for her. 

     Mom was acting better when Bev got home, so I figured it was the drug that made her loopy for a while.   She went to bed early and so did I.   It terrifies me to think what would happen if mom would lose her mind, as she has remained very sharp and alert throughout, which amazes me since she has not been eating.    But that’s her, amazing.  I am still a little disturbed about the day’s behavior when I go to bed, but I convince myself it was only the medication and finally fall asleep after the evenings cry fest.

 DAY 18                                                                                                       12-29-04

    Eighteen days, I have been here eighteen days, I am feeling like I want to go home now, but I know that I must remain here with mother.  Emotions are mixed up, I am worried about getting back to work and paying bills, I have been out of my element for nearly three weeks.  It’s hard.  All the responsibilities necessary to run my own home are being neglected and are plaguing me.   I feel guilty, mother should be my only concern.  I know they are forged from a selfish human emotion that requires us not to have our lives disrupted and out of control, but I wish I didn’t feel that way.  I have to let it go.

  Checking on her breathing still, in the morning, several times at night and every time I go to the bathroom.  I’ve always envisioned myself going absolutely batty when something happened to mother, I know there’s no room for that, I have to stay sane for her.  Mom says the light in the window of the painting is completely lit up now, then adds, “Bobby (her brother) is in there watching TV”, I still don’t see it, but I don’t doubt that she does.

     The day was uneventful, I made barbecue sandwiches and Bev made fries.  We are supposed to go to the stage production of Peter Pan tomorrow.  It stars Cathy Rigby and should be cool, the only other play I have ever been to was Cats, and that was many years ago.  There is a ticket for mother, but of course, she can’t use it and she has expressed that she doesn’t want to go.  I think she does, but she is embarrassed by her condition and would never been seen in a wheelchair in public.  Makes me mad that she can’t experience something like that now, she would have enjoyed it and it would saved her from the disease for a short while.  Bev wants us to go anyway, maybe we should, but it doesn’t feel right.  That means getting someone to stay with mom and Bev has a friend in mind that mom knows and likes.  Still, I don’t know her and I don’t like leaving mom with strangers, we brought her home to avoid that situation.

     Why is this happening to her?  She never hurt anybody, just the opposite, she spent a good part of her life helping.  She volunteered with the Red Cross and several Hospitals while holding a full-time job.  I was so proud of her being a coordinator at an employment service, where she was the boss at sixty years of age.  She assisted troubled young adults to get jobs, GEDs and to just plain straighten out their lives.  She was a friend to the absolute dregs of society and liked it, because she believed she could reach them.  Seeing her like this now makes me sick.

CHAPTER 8

Mom’s buddies, ugh!

     Mom made a lot of “friends” while doing her work to uplift the dregs of society to a stable place in life.  I was in my early twenties and naturally, like most, was still hitting the bar scene on weekends, so I knew many of them.  I remember voicing my opinions on those she thought were, “so nice” always saying that he or she was “a nice kid”.  I could never convince her that some of them were not worth “saving” and that my opinion was, they would never help themselves and you can’t help someone who won’t help themselves.  Still, she remained positive and insisted on doing what she could to help young pregnant girls get assistance, drop-outs to get GEDs and just plain lazy losers, alcoholics and drug addicts to get work.

   The funny thing is, I was always called out in public by these dregs, telling me how wonderful my mother was and that they loved her.  I have to admit, even though I believed they were trash, it made me feel good that they respected her, because I know they didn’t respect much.  One particularly dirty guy she insisted on helping, used to bake for her, making her brownies and cookies and bringing them into her office.  She would happily munch on the treats through the day, but her co-workers would not get near them, asking her apprehensively, “you gonna eat those?” Mom would proudly say, “Yes, I am, there’s nothing wrong with them”.  I had to agree with her co-workers, because I knew this guy and he was dirty, but she liked him and expressed that he was “very nice” and we were being “ridiculous”.

     Mom had a little pair of foil, baby booties on her desk, when I asked what they were supposed to be, she told me that one of the guys made them out of gum wrappers for her while he was in jail.  I thought “whoopee”.  At the same time she had a wooden rabbit that stood about ten inches high, nicely carved, sanded and stained a light brown, on her file cabinet.  Of course, it was explained to me that a different guy, carved this for her when he was in prison, I couldn’t say anything but, “uh, okay”.  Naturally, she believed they were “nice boys”.  By the way, she still has both works of art in her bedroom.

     Mom was late coming home from work one night, she always walked everywhere she went, but she always walked swiftly and was still considerably late this night.  I was getting very concerned about the time she finally wandered home.  Upon asking her what happened, she replied that she had gone into a bar with a couple kids she was helping to get jobs.  I knew the bar, knew it was a dirty, cock-roach infested hole-in-the-wall, and I asked her why she would go in there.  She simply answered, “Because I wanted to see what it looked like”.  I was horrified, because this bar was known for drug dealing, housing the town alcoholics and bar fights. Okay, I had been in there a few times, but that’s beside the point.  I knew the guys that took her in there and when I saw them next, I asked what the hell they were thinking.  They responded, as mother did, “she wanted to see what it looked like”.  They weren’t bad guys and I knew that they would not hurt her, but what the hell?  They told me that they really liked her and wouldn’t let anything happen to her, claiming they sat on either side of her.  I believed them, but still, were they nuts?  Update, that bar was condemned and burned to the ground years ago.  The owner?  Well, she’s in prison. 

     That’s how much she liked and trusted the excrement of society, the losers that would never change, never hold a job and never stop drinking or smoking dope.  She believed they would change, she believed she could help, she liked them and treated them as human beings, she lived her life to help them live theirs, for the better.   Wonder if any of them heard her?  Wonder what their lives are now because of her?  Never know, she may have been right, maybe they could change.  I hope they did.

 DAY 19                                                                                                       12-30-04

     Nearly New Year’s Eve, big deal, I’m sure I’ll be in bed by ten.  The day was uneventful, I remember when that was a bad thing in my life, now I am grateful for an uneventful day.  Mom is taking in less and less liquid, I am afraid this is the beginning of the New Year, but the end for mother.   I was right, mom mentioned that she wanted to go to Peter Pan, but knew that she couldn’t, makes me sad that she can’t do what she wants.  Pissed Bev off a little that I changed my mind at the last minute and stayed home with mom.  I know she understood, but I’m sure the tickets were costly to her and she did not have time to give it to someone else.  I couldn’t help it, if mom wanted to go and couldn’t, then I didn’t want to go either, I just wanted to be with her.

     I want to remember this night, mom and I watched Monk in her room for three hours and then turned it to an old movie mom had already seen, “Night Must Fall”.  She was so cute, telling me how this guy carries a “hatbox around everywhere he goes”.  I said that there was probably a head in it and she said, “yea, this is a weird one”.  She was funny telling me that she couldn’t wait for me to see the end, we didn’t, I got sleepy.  We stayed up until eleven-thirty, and that’s because I got tired, she was still sitting up in her bed.  She is something else, a will of steel and a heart of gold. 

 DAY 20                                                                                         NEW YEAR’S EVE

     Beverlee’s planning a nice dinner for New Year’s Day.  After hearing me mention that I did not eat a lot of beef, she thoughtfully bought me a nice lamb steak.  No matter, mom will not be able to eat anything, she’s wasting away to nothing, I can’t stand it.  She barely looks like my mother anymore.  She asked if it was New Year’s Eve and Bev told her “yes”, she remarked that she thought that last night was New Years Eve.  Bev and I concluded that may have been why she stayed up so late, I don’t care why, I’m glad we did.  I‘ll never forget it and I’ll probably never be able to watch that movie again, that was our time together and I want to leave it that way.

     Bev put out some snacks, crab, cheese and crackers, truffle mousse, shrimp cocktail, brie, etc. It was very nice of her to go all out like that.  Mom had a piece or two of cheese and a cracker, but that’s it.  We watched movies and I went to bed shortly after mother, at nine-thirty or ten.  No positive change in her for the New Year, of course, none were expected, but a daughter can hope and pray can’t she?  Well, she can when that’s all she’s got.

CONGRATULATIONS PATSY–TWICE!

promoted

employee of the year

First picture above  is a clipping from the Bluffton News-Banner, Bluffton Indiana, in December of 1992, when mom was promoted to Wells County Jobworks Coordinator, replacing a much younger male coordinator for this position.  Quite an accomplishment at her age, she would have been 61, and obviously had no intent on retiring from helping others.  I worked for the News-Banner when this was printed and was quite proud of her.

Second photo depicts that Only ONE year after being announced new Coordinator, she is awarded Employee of the Year in 1993.

DAY 21                                                                                        NEW YEAR’S DAY

     A new year, 2005, funny, but all it signifies to me is the end of the last year I have been able spend time with my mother.  Mom came out for only a little while today, she is not feeling well, I thought it might partially be due to the constipation, all the narcotics have taken their toll on her bowels.  She wanted to go back to bed about mid-morning, something she has not done since my arrival three weeks ago.  I took her to her room and she asked to just sit on the potty for a while, so I left her alone.   It has been two weeks since she has had any bowel activity, obviously the laxative and prune juice were not that effective anymore.  Poor thing had to sit there so long, we turned her potty chair around, with her in it, so she could watch her TV.

     Beverlee and I decided she could not keep sitting there like that and we went in to check on her.  Mom asked to just get into her bed and I lifted her up to get her there, when I heard Beverlee yell, “wait!, wait!”.  Beverlee had been standing behind mother and immediately said, “that has to come out”.  Bev left the room and came back with rubber gloves on, she asked me to call Hospice and have the nurse call us back, so I left the room after laying mother on her left side in bed. 

     When I returned, Beverlee was just finishing removing the rock hard clump that had been tormenting mother’s bowels.  Beverlee was afraid that she hurt mother by removing it, but the nurse comforted her when she called, by saying that it was hurting mother more in, than out and she did the right thing.

     We cleaned mother up and got her comfortable in bed.  We administered a dose of the lorazepam to help her calm down and rest, could have used some of that myself this time.  I looked at Beverlee differently after this, not that she hadn’t already amazed me, but it took a lot of love and special effort to do what she did to help mother.  Mother and I are lucky to have her.  Mom began to feel better in a little while, but she spent the rest of the day in bed.  Happy frickin’ New Year.  For all accounts and purposes, Christmas and New Years are pretty much destined to the markers of my time in hell for the rest of my time on this earth.

    DAY 22                                                                                                           1-2-05

     Mom wanted to get up today, she said that she felt better.  So, the morning routine began, including the laxative and prune juice, in hopes of a new start to controlling her bowels.  Though, mother understands that if this still does not work, we will have to use an enema or suppository to help her.

     Mom stayed out with us in the living room all day and remained in good spirits, but still takes in little more than nothing for nutrients.  “Part of the process”, regardless of the “process”, I can’t stand to see her eating nothing and drinking even less every day.  She doesn’t drink her coffee at all anymore and I have reduced it to half a cup.  It takes her twelve hours to finish a nutrition drink and at least six hours to finish a six ounce glass of prune juice, which I’m sure renders it ineffective.

     Other than my own personal struggles with watching my mother get closer and closer to death, the day was uneventful.  The previous days events should hold me for a while, making an uneventful day welcome.  Any day I still have my mother is welcome…..but how many days can I endure with her like this?  God help me….

DAY 23                                                                                                           1-3-05

     January 3rd, mom’s 74th birthday is tomorrow.  Beverlee still believes her birthday holds some significance, I’m afraid she’s waiting till the anniversary of dad’s death, January 11th.  They say it is not uncommon for long time partners to pass away on the same dates.  But, who knows, other than God, maybe she feels that there is something she has to do.  I don’t know what it would be, other than it has become increasingly apparent that she is worried about Beverlee and I being okay.  We continue to re-assure her that we will be, but she can’t stop worrying about us.  I don’t dare tell her that I am terrified to have to go on without her, but I don’t have a choice and as mother keeps telling us, “whatever will be, will be.  We can’t do anything about it.”.

     Mom said that she felt really good today and was talkative.  It warms my heart and makes me pray that it will continue, but I know that it can’t.  Drinking anything, even small sips have become very difficult for her as well as taking her miniscule pain pills.  The nurse had mentioned that we may have to go to a pain patch, when she could no longer swallow the pills.   But, mother told her then, that she wanted to stay with the pills.  I have quit making her coffee all together and she is no longer drinking the nutrition drinks, she is barely sipping on her glass of water.  Beverlee and I both fear that the cancer has reached her throat, as no one has ever had an explanation for the increasing mucous.  I use my suction machine much more often, we used to be able to skip several days in a row, not now.  The laxative is thick and milky and has become impossible for her to get down, I usually end up sucking it back out, as she gags and chokes on it.  We will have to stop giving it to her.  Again, I have the choking, thick feeling in my throat and want to spit it out for her.  The paralyzation on the right side of her face makes it impossible for her to use face muscles, to work the mucous up into her mouth and spit it out, thank God I have the machine to suck it out for her.

   Such a proud woman, strong and amazing and determined in her will to stay up, alert and participating in each day with her girls.  She refuses to let anything keep her from doing it her way.  I will never forget her strength, thank you God, for making this a “feel good” day for her, I know they will be few.

MOM AND BEV

momandbev

This is an old picture of Beverlee and mom, as you may be able to tell by Miss Bev’s hair style, sheesh.  But, I like how healthy and happy mom looks in this one, though if the doctors were correct, the disease had already started to destroy her at this time.  It also makes me think of my best friend Deb Jur, who passed away from stomach cancer, she told me at the beginning of her disease, “I’m the healthiest sick person I know”, because she still felt good, I ‘ll never forget her saying that.

DAY 24                                                                                       MOM’S BIRTHDAY

   Happy birthday mom.  Went into mom’s room and she was already up.  I gave her a big hug and kiss and told her happy birthday.  She was funny, she just said, “yea, I’m getting’ up there”.  She said she felt good, that always makes me happy.  Beverlee was home today, but she worked in her office most of the day, save the minute we spent giving mom her birthday card.  One of Bev’s friends had left a card for her and it had a necklace in it, with a pewter dove.  Mom appeared to like it and she put it on directly.

     I went out to return some movies Beverlee had rented and took some time to breathe.  I stopped by the local grocery to look around and bought mom a beautiful bouquet of wild flowers.  I returned home with the flowers, mom loved them and Bev came out of her office to put them into a vase and place them where mom could see them.   I felt bad that we really hadn’t done anything for her and Bev was working in her office all day.  A nice dinner anywhere, at home or out was out of the question, the poor woman can’t walk or eat.

     The nurse called about 10:30 a.m. and asked if she could see mom today, I asked mom and she rolled her eyes and replied, “I guess”.  I told the nurse that was fine and she said she would be here around 11:30 a.m.  I had just finished another session with my “friend”, the sucking machine, when the nurse arrived at the door, an hour after her estimation.  Mom immediately tells her, “I’m fine, I’m perfect”.  Beverlee came out of her office, which I was grateful for, because I had been dealing with the nurse’s visits alone and I was afraid I had not asked all the right questions or relinquished all the necessary information on mother’s worsened condition. 

     Mother had nothing today but some water and a couple spoonfuls of the ice cream she requested, which, brought about the use of the sucking machine.  We explained to the nurse that it was getting harder in the past few days for mother to swallow anything including the small pill she took for nerve pain.  Mother said it was not the pill, it was the water, I’m sure she was correct.  The nurse again suggested the patch for pain, it would be changed every three days.  Mother insisted on remaining on the pills, and the drops of morphine were not an issue, because they are placed under her tongue.  Mother again insisted that she was not choking on the pills, so I had her take one in front of the nurse. Mom agreed and tried very hard not to cough or choke, she was killing me, she can be so stubborn and silly.  She couldn’t hold it and was making a face, finally letting out a little puff of air in the form of a muted cough.  I commented that she was trying not to cough in front of the nurse and Bev agreed, mom let loose with a couple good hard coughs after that.  It’s not funny, but I couldn’t help chuckle at her for trying.

     The nurse suggested that mom go to sucking on ice chips, an idea Bev and I had already discussed.  At one point, mom told me that she was so thirsty, she just wanted to hang her tongue into a glass of water and leave it there, I felt so sorry for her.   How sad is that?  The poor woman cannot even ingest small sips of water without coughing and gagging profusely.  Damn, this is hard.

     The nurse checked mom’s vitals, reporting that her blood pressure was really good today.  We were all happy at this least little tid bit of good news.  Her lungs were clear of fluid and her stomach soft, suggesting no hardened bowels were present. Mom reiterated that she, “felt good” today and the nurse replied that she believed she did, adding that if she ever didn’t feel good, it was okay to tell her.  Mom nodded in agreement, but I knew that mother would never admit that she felt bad, at least not to the nurse.  They chatted about books and movies and the nurse left a short while later.  It’s nice that she adds some casual conversation to her visit that doesn’t concern mom’s condition and it gives mom someone else to talk to besides us.  Beverlee commented, “boy, she’s chatty isn’t she?” I told her that she could be, but that was okay.  In my mind, she said more to mom in the few minutes she was here than I probably say all day.  Not that I don’t want to talk to mom, but she usually isn’t much for conversation anymore and I find myself not knowing what to say.  It’s hard to get passed what is happening and just talk about anything, I know I should be able to, but this is so fricking difficult.

     The rest of mom’s day was uneventful and she retired at her new earlier bedtime, eight o’clock.  I think she was sad about my brother and other sister not even bothering to call her on her last birthday, though she would never say anything.  I know I felt horrible for her about it, I’d like to say I can’t believe they would do that, but I can, I almost expected it, the losers.  It’s evident mom’s aware of how they are, when she constantly refers to her children as “the girls”.   Once, she told the nurse, when asked how many children she had during idle chatter, that she had two daughters.   Mom loves those two losers very much, only a mother could, but she understands the reality of their incredibly selfish and disturbingly uncaring behavior.

     We took her in and she went potty, we medicated her, tucked her in with her remote control and glasses, then hugged and kissed her and told her that we loved her, as we do every night.  We left her to watch her TV, as has become the nightly ritual.  Goodnight mother, happy birthday, I love you.  Now, I’ve got more blubbering to do in my room until my face puffs up and my eyes swell shut.

 DAY 25                                                                               1-5-05

     I don’t know how much truth is in the theory of mom’s birthday being of some significance, but it is only the day after and she is too ill to get out of bed.  I had to move my “machine” to her bedroom, which required a trip to the hardware store for a three-prong plug adapter.  Her coughing and hacking is incessant, and something new, dry heaves.  Of course, there was nothing in there to come up, though the heaving persisted.  It was devastating for me to watch her go through this and I prayed to God through the only prayer I have ever mastered, “Our Father”.  I begged God to make it stop, even if it meant taking her today.  After several sessions of sucking mucous and standing by her bedside, as her body attempted to forcefully expel nothing, she finally calmed down.  We gave her a dose of lorazepam to help her relax and Bev called Hospice.  They confirmed that the lorazepam was a good idea and that we should have given it to her sooner, as it also helps with nausea.  We may have done it earlier had someone told us that before.

     Mother stayed in her bed all day, lights out, either sleeping or lying there solemnly, looking at the locket around her neck that she never took off.    I watched her from her doorway.  Inside the locket are pictures of her and dad, her on one side, he on the other, from when they were young.  It was a gift from Beverlee years ago, and a good one, mother looked at it often.

     Beverlee and I took turns checking on mother that day, then meeting in another room of the house to share our tears.  We must have cried together a dozen times this day.  We both thought that she would pass on today and I think, silently, we prayed for it, if it would set her free, send her to father and release her from the tortures of this horrible disease.  Right around dinnertime, I heard her TV come on, as well as the light.  I went to her and jokingly asked if she was tired of staring at the walls, she replied, “yea”.  The coughing and heaving had subsided and she sat herself up to watch one of her favorite shows, Law and Order.  I refreshed her ice chips and left her alone.  Mother did not seem to want Beverlee or I in the room with her all day, saying that she didn’t want us looking at her.  We left her alone, except for the periodic trips to her doorway to check on her.

     She fell asleep early again after her meds and slept soundly as we continued our checks late into the evening.  When we were agreed that mother would sleep soundly for the rest of the night, we both went to bed in an attempt to sleep ourselves.  We both left our doors open to be able to hear mother, should her present condition change.  We are all very tired, especially mother.  It’s amazing how much worry, stress and periodic bouts of sobbing will take out of a person.  I think Beverlee and I fell asleep with the same fear that night, that by morning, mother would be gone.

   Funny, still not a complaint or negative remark to be found from mother.  She has been remarkable, telling us, “Please don’t cry girls, there’s no crying, not until we have to” and always adding, “what will be, will be, we can’t change anything.”  That’s my mother, “Courageous Patsy”.

PATSY AND UNCLE BOBBY

mombob

Mom and her brother on the front porch of her family home in Mount Washington, Pittsburgh, PA.  We were leaving from a visit here, as indicated by mom’s purse in the doorway.  I like this picture and Bobby is my favorite uncle, I visit him once or twice a year, I feel it is important to stay connected to mother’s family.  One of mom’s sisters does not live far from here, my Aunt Betty, mom’s favorite sister, so, I always take the opportunity to visit her as well.  Neither are in fabulous health and could not be there when mom passed away.  However, just shortly before she became extremely ill, her youngest sister, Sister Monique (Aunt Lillian), visited with her for five days at beverlee’s home in Sacramento, a time mother appreciated dearly.

CHAPTER 9

Fortress of Solitude

     I spent time on the computer to reply to emails or talk to friends via instant messaging to stay in contact with the outside world.  Beverlee’s office door looks out to mother’s chair, so I always kept a watchful eye on her.  She humorously remarked to the nurse one day that when she is coughing and looks over at me, I always have at least one eye on her.  She was cute as she explained it, squinting at me with one eye closed.  She can be funny, I love it when I see her old self come through, I know I am going to miss her immensely.

     I was afraid to go onto the patio, in case I would not hear mother coughing, so I went as far as I could go for moments of peace and quiet, Beverlee’s room.  It is at the far end of the house, but not far from the living room.   The room is huge, warmly decorated and comfortable.  I began to call it my “fortress of solitude”, and spent time in there by myself whenever it was convenient.

      I used this time to collect my thoughts on what was happening and try to relieve some of the stress that had become a constant throughout the days and nights since my arrival.  I also used this time to keep up on my journal.  Occasional phone calls from friends helped, though I ignored a few messages from them, because I knew I could not talk without crying.  Some of them left messages while I was helping mom with something and I couldn’t get to the phone, but it was nice to hear their voices.

      I also had my artwork.  A friend, whom I can’t thank enough for her support, sent me art supplies because she knew my watercolor paper and certain other supplies would not travel well in a bag, and were too big to carry on the plane.  After only a couple days of being at Beverlee’s, I received the gift box full of artistic goodies.  Pens; pencils; drawing board; paints; brushes; watercolor paper; books and a CD of relaxing Jazz music.   It was so thoughtful, I was astounded at her dedication to our friendship.  She lived through the same thing several years ago, that I was going through now, and understood how I felt and how important it was to keep your sanity.  She playfully labeled the box, my “survival kit”.  Every time she called she made sure that I was taking “time out”, I will never forget her for not forgetting me during this time. 

     I have learned that it is important when dealing with a loved one’s illness that you have some time “away”, even if it’s just in another room reading.  Don’t allow yourself to lose contact with the outside world, it will help you stay together and strong.  It took me a several weeks to be able to do little things for myself, but I was becoming very tired, stressed, on edge and felt like I was falling apart.   I knew that wouldn’t help anybody, especially mother.

     Find your “fortress of solitude” and visit it whenever it is convenient, don’t lose touch with friends who care about you and allow yourself to know that it is okay to take a “time out”.

 DAY 26                                                                                                           1-6-05

     Mom’s back.  She was ready to get up around nine or nine-thirty.  When I got her onto her pot, she said she wanted to go to her chair.  We gave her the morning meds and Beverlee assisted her with a sponge bath.  Mother had been doing it herself, but she was feeling very weak and said she did not think she had the strength.  She could not lift her legs anymore without using her hands to lift them.  She asked for her powder and deodorant and we assisted her in getting dressed.  Beverlee had given her a pair of grey sweatpants that she loved and she wanted to wear those.  We proceeded to her chair and she started her day by doing okay drinking water instead of sucking ice chips.  At first, she barely had enough strength to suck the water through the straw, but it got better.   Imagine, not having the strength to suck water through a straw…this is killing me.

     After a while of making sure the water was going down okay, I asked if she wanted a nutrition drink, I told her that I would add milk to thin it down, she replied, “yes”.  This was the first thing she has had other than water and ice chips for several days.  I put about three quarters of the drink in a glass, added milk and a straw.  She immediately took what would be considered a big drink for her and it went down okay. I guess I’ve fooled myself into thinking this liquid nutrition was the elixir of life.  I always felt better when I was successful getting something into her, though I knew it was still not enough to keep a mouse alive.  Anyway, she eventually drank it all but continued with her water for the rest of the day.

   To my delight, she requested, “three ginger cookies” in the late afternoon.  The small, thin, round, melt in your mouth wafers were part of a Christmas gift from one of Beverlee’s friends and mother has enjoyed them as often as she can.  Beverlee made chicken and cheesy rice for dinner, I thought the rice was soft enough for mother, so I gave her a bite of mine.  Before I could offer to get a spoonful, she told me that was enough.   I don’t know why seeing her eat drives me, the cancer feeds off of everything she puts in her mouth and only helps it to grow.   What else would the devil’s disease do, but deplete its host of all and any nutrition.  Still, I feel like she’s better if she eats, how stupid is that?

     Beverlee had a hair appointment at six-thirty and left the house a little after six.  Mother had her eyes closed and I asked her if she wanted to go to bed, she remarked that she thought I might not be able to do it alone.  Since we had gone to using the wheelchair, I had been the one lifting and moving her, so I told her that it was fine.  I took her to bed, helped her to change into her sleep shirt and administered her meds.  When she got in and sat up against her soft feather pillows, she was in ecstasy, telling me how wonderful it felt, groaning in relaxation.  She was already closing her eyes when I bent over her to give her the routine kiss and hug goodnight and to tell her that I love her.  She said, “I love you too honey” and closed her eyes, then added, “I love you very much”.  Through the welling tears in my eyes I told her, “I love you too mom, you’re a good mother”.  Her eyes closed again and she was falling asleep when I left her alone.  I proceeded to the living room, to cry my eyes out in solitude.   All the this crying….and it’s only just begun.

PATSY AND RASCAL

momrascal

Mom and her little dog, Rascal, a miniature poodle, so he was a little bigger than a toy but still a pee-wee.  You can’t tell by looking at him, but that’s exactly what he was, a rascal!  He was sometimes a vicous little mutt that only liked mom, and try to get near her when he was on her lap wrapped up in one of mom’s  afghan blankets (she loved to make these), sheesh, what a psycho.  But, she loved him and he loved her, the little freak.  Rascal passed away shortly before mom did while in my care, he was very petite and getting old.

DAY 27                                                                                                           1-7-05

     Mom remains determined to leave her room and come to the living room with us.  Everybody involved in her case has admitted that they are amazed that at her determination and strength.  The nurse cannot believe that she is not in a hospital bed in diapers, and has mentioned her surprise at mother’s control of her bladder, still going on her own in her port-a-potty.  I have seen her hold it from the time she gets up in the morning until she goes to bed at night, saying, “I might as well wait until I go in to go to bed, so I only have to move once”.  Even I couldn’t do that, I go several times a day and I’m healthy,  as far as I know anyway.  

   The nurse called early this morning, but she told Beverlee that she was ill and didn’t know if she could come today.  Beverlee requested that she send another nurse to check mother because it was the weekend.  The nurse changed her mind and agreed to come.

   The nurse’s visits are always the same, mom rolls her eyes and is unwilling to participate in questions, insisting she is fine.  The nurse checked her blood  pressure, which was up again.  She listened to mom’s lungs and bowels and made sure we had enough medications for the weekend.  She checked mom’s ankles for swelling and talked about her grandchildren, books and movies.  She always gives mother a hug and kiss when she leaves and by then, mother has warmed up to her, thanking her for coming.  Today, mom apologized for being rude to her, the nurse said that she understood and did not take it personally, then left.

     Anyway, the remainder of the day was fairly uneventful.  Mother was tired and she went to bed at six o’clock, though she thought it was eight o’clock, we just let her believe it.  This was a bad sign to me, as each night became shorter and shorter and she has lost track of time.  She fell asleep quickly, in spite of her request to watch her TV.   Beverlee and I both checked on her breathing often through the night, ironically, I held my own breath, each time I made my way to her doorway.   I am obsessed with checking on her and my sleepless nights are becoming longer and longer.

 DAY 28                                                                                                           1-8-05

     Mom got up and came in the living room.   I am no longer getting her anything but a glass of water.  She claims that she is not hungry and doesn’t want anything.  Just like dad.  I can’t help but think this is the second time I’ve had to watch a parent go through the horrible changes brought about by this evil disease.  Still, she is in good spirits and wishes to stay with us.  I noticed that she was “in and out” more, between napping and watching TV, she had her crossword puzzle on her lap with her hands resting on top of it,  but never looked at it.  Again, she is ready for bed at dinnertime and we oblige her. I can see she is getting weaker still and tired, very tired.  The days are shorter the nights are definitely longer and I fear my time with mother is nearing its end.   I am powerless to stop it, help her or do anything but wallow in my own sorrow.

 DAY 29                                                                                                           1-9-05

     Sunday morning, mother is weak but determined to join us in the living room.  Beverlee assisted her with a thorough sponge bath, but mom still washes her own face and upper torso.  Beverlee washes what she calls, mom’s “areas” when we stand her up off her potty to get her in the wheel chair. 

     Mom was in good spirits again, but you could tell she was very tired, napping through the day again.  Still nothing but water entered her system and now, very little of that.  I went out for a while to breathe.  I had lunch at a nearby restaurant, stopped at a video rental place and returned home around three o’clock.  I thought Beverlee would want to get out too, as she had mentioned it, but I guess she changed her mind.

     Mom was tired by five o’clock, though she thought it was seven thirty, again, we allowed her to believe that.  We took her to bed, she looks so tired, I’m afraid it won’t be long.   Days are shorter and shorter for her…..this is the hardest thing any living human being ever has to do….and since I can’t save her, but only be here with her….I would not change it…..

 CHAPTER 10

Hi-ho, hi-ho it’s off to work we go.

     As far back as I can remember, mom has always worked.  I don’t know what she did while the other kids were growing up, but when I went off to kindergarten, mom went off to work.  I’m guessing, since I was the last one, she got us all into school and went to work, can’t blame her for wanting to get out of the house after four children.

    Mom worked full-time and spent time volunteering at the local Hospital, I loved when she would do that, because she always brought me toys from the gift shop.  She was a “Jill” of many trades, working for lawyers, doctors, insurance agents and the like.  During this time, mom had to take a lot of dictation, and being the creative, efficient woman she was, she invented her own shorthand.  It was remarkable, she had developed the standard shorthand into something, well, shorter.  Only she could read it, but what the heck?  Only she had to read it. I took a couple years of shorthand in high school and couldn’t imagine how she managed to evolve it into her own version, I couldn’t read it either.  Just another remarkable notch in her, uh, well, wherever women put notches.

     Mom always got home before dad, but not early enough to keep the squabbling from going on between Beverlee and I.  Bev had grown up, was in junior high and wanted to watch soap operas.  I was still in grade school and wanted to eat carrots and watch Bugs Bunny.  Needless to say, mom had a lot of after school calls to her office.  Mom was so calm about it, naturally, I was the one calling and squealing that Bev wouldn’t let me watch cartoons. Beverlee put in her two cents, yelling her side of the story from the background.  Mom solved it, by sending me to her and dad’s bedroom, to watch their TV, making it appealing by saying I could lay on the bed.  I always complied, but didn’t go without a few more comments to Miss Bev on my way up the stairs, I can’t repeat them now, even as an adult.

     For many years before we moved from Pennsylvania to Indiana, mom worked for a couple of insurance agents at a major company.  Her office was not far from my grade school and way back then, you went home for lunch.  Not me, I went to mom’s office, I thought I was so cool for being able to do that.  Mom took me to the conference room, where she had the lunch she had brought us, tucked into a desk drawer, as well as my favorite snacks.  I remember always looking for the “Nutter Butter” cookies, I loved those silly things, still do.  If mom didn’t bring lunch, we would walk to the small grocery on the corner by her office and get something, I liked it when we got yogurt.  We’d eat in the conference room and I would always go to the bathroom, before I skipped my way back to school, okay maybe I ran, I’m sure I wasn’t the skipping type.

     I took a little teasing for walking to school with mom in the morning, but her office was in the same direction.  After a few threats to get well, physical with my little tormentors, most of it stopped.  I liked walking with her, I didn’t care.  I could have done without the spit lacquered Kleenex to remove any evidence of my breakfast as we were walking, but mom’s do that.  Never understood why that was cleaner, but evidently mothers do, and mothers know best.

     Mom’s office was also privy to the direction I traveled on my bike to the local public pool all summer.  So, I made frequent stops to see mom, oh, and of course, pimp her for money to get in the pool, as well as money for the vending machines to get snacks.  I was all about the snacks with mom.  Anyway, I thought I was cool because I usually had friends with me and I had to stop at “mom’s office”.  The dirty scums usually wanted me to plead for money for them too, it felt like I was collecting protection from her, but she was always generous and glad to see me.

     Looking back, I realize how much fun going to mom’s office was, having lunch or just passing through.  Something I continued to do as an adult and our offices were only a couple of blocks apart, she was working for Jobworks and I worked at the local newspaper down the street.  I’m glad we had that time together, even while she was working, she was never to busy for us kids.

WHAT’S LEFT OF A ONCE GREAT WOMAN

MOM6

You  have seen mostly the young healthy, happy photos of mother and I thought strongly about  avoiding posting photos of mother late in her battle with cancer, she would  not have wanted to be seen or remembered this way.   But,  my story is about the devastation of this disease and this photo depicts how cancer has destroyed a once great woman.  I could barely get this posted without crying, actually I did cry a bit, every time I see her like this it absolutely tears me apart.  I sat on the couch every day, which is the direction this photo was taken from, and spent alot of time just looking at her and not being able to conceive what it was going to be like, without being able to look over and see her there.  I found out the hard way, a short time after this photo was taken.

DAY 30                                                                                                         1-10-05

     Both Beverlee and I went into my mom’s room to get her this morning.  I helped her to sit up and got her on the port-a-potty.  Beverlee was in the doorway as I set mom down and I heard her exclaim, “what’s wrong with her face!” I looked at mom and noticed that she had a large lump on the left side of her face, protruding out below her left ear, down to her neck and into her face.  Both Beverlee and I stood horrified looking at her, as Beverlee yelled again, “what the hell is that on her face!” Mom reached up gently to touch the protrusion and immediately said, “ouch!”  I don’t think either Beverlee nor I knew what to do, we were stunned and frozen with horror at how this could happen over night.  How the hell did this appear over night, how is that possible, what the hell is it?  I knew in the pit of stomach that it was a tumor, probably the one that had been causing all the trouble with her swallowing.  I told mom not to touch it and then told Beverlee to call hospice.  I leaned over mom and told her quietly, that she would have to get back into bed for now, she couldn’t get up today.  She answered like a little girl, it tore me apart, she simply, softly said, “okay”.  I helped her into bed and we waited for the nurse to call, which was moment later. 

     The nurse said that it was most likely a tumor and told Beverlee that sometimes they appear like that.   She explained that it probably had been growing under the skin for a while, but the skin gets weak and it couldn’t hold it back anymore, allowing it to protrude out.  We were both still flabbergasted as well as terrified.  The nurse said she would be there shortly.  I started to think about one of my greatest fears since this has began with her, that it would now go to her brain.

     The nurse arrived and looked at the monstrous invader, telling mom that it was a tumor and that she would have to remain in bed, then asking mom if that was okay with her.  Still, in the guise of a little girl, she answered softly, “okay”.  The nurse then explained that she would not be able to get up and go to the bathroom anymore and that maybe we should start using the diapers now, then asking mom again, “is that okay with you?”.  Mom again answered, “yea, okay”.  Her answers were killing me, as I know they were her and as the realization that my mother would be gone soon overwhelmed me, I started crying.  Then, Beverlee was crying and mother was holding her hand out to us, still asking us not to cry and telling us that we were her, “big, strong girls, you’re strong girls”.  I told her that she did that, because she was a good mother.  The nurse left a little while later and after walking her to the door, we returned to mother’s room.

   So much for the “big strong girl”, I started wailing and blubbering uncontrollably, falling to my knees at mother’s bedside and laying my head at her shoulder.  Mother reached over and rubbed my head, petting me and telling not to cry, saying it was okay and that “what will be, will be, crying won’t stop it”.  Her courage made me cry harder and I remained at the mercy of her petting for a while. 

     Mother never cried about her own demise or the fact that she was damned with this horrible disease.  It’s not that mother is against crying, it just makes her sad and upset to see her girls like that, still, on her death bed, she was the perfect mother, worried about her children’s well being instead of her own.  She hated to see us upset, about anything and always held us close to her when asking us to please not cry because she didn’t like to see us that way.  I know in heart, she wanted to fix everything that upset us, but this time, she couldn’t, though her strength made it easier, she knew that.

     The Father came from the church and gave mom her “last rights” or “anointing of the sick” for the second time.  I was glad it was the same Father that came before, mom likes him. I remember mom was worried that you could only have this done once and she had it done when she was young, during a miscarriage when they thought she would die.  The Father explained that the church had changed it, because many people think they will die for some reason or another and don’t, so it is okay to receive the anointing more than once. 

    We all said the “Our Father” prayer together and I found some relief in knowing that he was using my only prayer in this ritual, allowing me to easily participate.  Mother was saying it so fast, she was ahead of the Father, but he reserved himself to saying it slow, and finished shortly after mom.  He anointed her with Holy oil and gave her the body of Christ, I could tell that she was holding it in her mouth because she could not swallow.  Funny my concern was watching her to be sure she wouldn’t choke on the “body of Christ”, as she received her anointing.  Like last time, a couple weeks ago, when he came and performed the anointing, I cried like an idiot through the whole thing, barely able to recite the prayer.  This time I think I was worse, as I watched mother lying there in bed, with that tumor pertruding from her face, I knew it was going to be very soon.  The wafer dissolved in her mouth and mom swallowed it okay, she expressed after the Father left that she as afraid it would not go down, I told her that I was watching her because I was afraid of that too.  We both hugged and kissed her and told her that we loved her before leaving her alone to rest.

     Mom remained in bed all day and fell asleep at around three o’clock or three thirty.  Unfortunately, her breathing was worse and her throat rattled with every breath.  We could hear struggle to get enough air through the entire house and it haunted us all evening. We stood in her doorway constantly this night, praying for her and watching our dying mother struggle for each breath as she slept.  

          The night sucked.  Beverlee went to bed and I drove myself absolutely insane listening to mother’s raspy, gurgling breathing.   I couldn’t stand it, I stood in her doorway at least a dozen times tearing myself apart over the fact that I could not help her.  I felt like my body would explode from the overwhelming feeling of helplessness and I paced up and down the hallway and finally started crying.  I walked into Beverlee’s bedroom and found that she was still up, she asked me, “what’s wrong?” I told her that I couldn’t stand not being able to help her and that I thought she was going to asphyxiate herself on the mucous because she was lying on her back.  I felt that we needed to do something, anything.  Beverlee said that there was nothing we could do and to go to sleep, I could tell she was agitated.  Bev said that she could hear mother too, I told her that it was nothing like being in the room next to her.  I laid down in bed with her for a few minutes to calm myself down and quit crying, Beverlee didn’t say a word.  I left a few minutes later and went to my room.  After crying some more in bed and saying at least a hundred “Our Father” prayers, I finally fell asleep.  I have no idea what time it was, but it had to be early morning.   I’m terrified she’ll go without me in the room with her…I love you mom…. I’ll never leave you…..this is the first night, I honestly thought I was going insane….

DAY 31                                                                                                         1-11-05

     Today is the third anniversary of dad’s death, I’m afraid that this is what mom has been waiting for, to go on the same day he did.  I went directly to mom’s room when I got up, she was still sleeping and her breathing was loud and raspy.  Beverlee had administered her morphine while she was sleeping before I got up, so I left her alone and proceeded into the living room, it was weird without her.  I guess this is what it will be like, it sucks. 

   Mom slept all day and we kept up with her medications, putting the morphine underneath her tongue.  We continued our usual ritual of checking to be sure she was breathing more often than normal, though now you can hear her from the hallway.  I think we are both worried the time has come. 

     It was mid-afternoon and I was sitting in Beverlee’s room, while she was in her office.  She suddenly appeared at the door and told me that she thought, “it was time”, I rushed to mother’s room.  Her breathing was horribly erratic and there were long pauses between breaths sometimes.  Beverlee sat on top of the port-a-potty and I pulled the wheelchair up to her bedside.  We sat and watched her for a while, as I held both of her hands in an attempt to comfort her, but she didn’t know it.  It was becoming increasingly clear that mother was probably not going to wake up again, she was completely out of it.  We sat with her for a while before Beverlee returned to the living room, I had to stay with mom, I was afraid she would leave without me.  Beverlee said that she just couldn’t sit there and hear her breathing like that any longer, I understood that, but I couldn’t leave.  I sat with her for quite a while with no change and I finally reserved myself to the fact that she was probably going to stay this way, I went back to Bev’s room. 

   I heard Bev on the phone in her office to the nurse, telling her that mom has been sleeping and that she thought it was some kind of coma, the nurse evidently told her that was correct, and the breathing was indicative of someone’s “last hours”.  Bev hung up and said, “you were right, she said we need to turn her on her side.”  We went right to her room and attempted to figure out how to do it.  Beverlee got up on the other side of the bed beside her and pushed her forward, as I pulled her to me and held her, to allow Bev to place pillows behind her to keep her that way.  It was obvious she was not coming back to us.  Her left eye would open only slightly when we were moving her, but she appeared to be looking at nothing, just gazing straight ahead, then closing it again.  Her arms and legs were like that of a rag doll, staying wherever we positioned them, it was scary for me, but we did what we had to do to make her comfortable.  Or, at least we thought we were making her comfortable, but we will never know that for sure.   Mother’s breathing did become easier for her and the noises stopped.  Thank God.  I didn’t say, “I told you so”, but I wanted to.

    Mom’s breathing was better all day, I kept going into her room, but I don’t think she knew I was there, at least, it didn’t seem like she could.  I hope I’m  wrong, I don’t want her to think she is alone, I never want her to think she is alone.  Obviously there was no change all day and we continued to give her the morphine under her tongue every few hours.  I know it could be any moment now and I can’t forget that dad died three years ago today.  I pray that God takes her soon, she can’t go on like this and she wouldn’t want to, she’s too proud and would not want us to see her like this.  I think this is the hardest thing I have done or ever will do in this life, including facing my own death.

    If the following experience with mother, doesn’t explain what a remarkably strong willed and incredibly miraculous woman she is, then I don’t know what else I can say about her.  Three times while checking on mom today, she had her legs off the bed and I had to put them back up under the covers.  Beverlee was with me all three times and the third time, though half in coma, she tried to move her upper body forward as well.  Mom was saying something that we could not understand, she was so weak, she could not form her mouth to say the words.  The last time she said it, I finally understood her, she said, “I have to go to the bathroom”.  On her deathbed and in a state of coma, her will to remain in control her faculties and urinate where a person should urinate, in the toilet, not on yourself in bed, is incredible.  I will never forget this about her last moments, what a strong woman she was, she would not be beaten, even by death itself.  Beverlee and I got her situated back in bed and Beverlee leaned over her to explain that she could no longer get up, that it was okay and that she was wearing a diaper and she had to go where she was, then reiterating, “it’s okay mom”.  A few minutes later, she finally relinquished herself to the horrible realization that she could not do this on her own and she urinated in a diaper, for the first time since her illness.  We immediately cleaned her up and changed it for her, which is not as easy as some might think, but I was glad to do it for her, after all, how many times did she change mine?

     At least, for now, I know that she is aware when we talk to her and that she knows we are here, it is a comfort for me to know she’s aware we are with her.  Mom did not move the rest of the day, staying where we positioned her after changing her diaper.

      I was up late, checking on mom often and pacing the hallway again.  While checking on her, I discovered that moving her on her side, allowed the mucous to pour from her mouth.  I got a warm rag and wiped her mouth, cleaned up her pillowcase and put a towel under her face.  Upon checking her later, more had spilled from her mouth and run down the towel to her arm, she was still in the same position as this afternoon, on her right side, with her arms in front of her.  Something made me examine the mucous on the towel, because it looked so foreign, I could not believe it came out her, it was horrible.  The mucous was a greenish brown color and very thick, I see why it was making it so difficult for her to swallow and I feel sorry for her to have that in her throat and mouth, it’s very, well…. Yucky and I wished I had not examined it now, I will never forget the sight of it.

      I washed her up and got a clean towel, I was attempting to figure a way to get the clean towel under her better than the last one when Beverlee appeared.  She was short and irritated, asking me very sharply, “what are you doing!!” I ignored her at first because if I answered her, it would have been a fight, as I felt like she was talking to me like I am an idiot and I had no right touching mother.  She said it again, even more irritably, I answered that I was putting a clean towel under her face, then added, “since you are here, you can help me lift her”.  Beverlee did not say another word, but helped me and then gave mom her morphine.  This was not a time to be fighting, but I could have turned around and knocked her out for talking to me that way.

     Beverlee went back to her room, still one piece, lucky for her and I returned to the living room. I can still hear her in my head, speaking to me like that, I thought we were closer than that, I thought she trusted me, I thought she knew I loved mom as much as she did.  Apparently, this is all about her and her last moments with mom, no one else’s.  Having mom here the last year and a half has made her act like she is mom’s only child.  I thought it was decided by more than just her, that being here was the best place for mom.  She makes the most money, has the nicest home and is closest to the best medical facilities, it was the wisest choice for mother.  I would have loved to have her, but I live in a po-dunk town in the country, my finances are limited and the medical care sucks.   That’s why I’ve traveled three times this year to be with her, because I love her too, I love her more than anything.   “Our father who art in heaven . . . “

BEACH BLANKET PATSY

mombeach

Mom at the beach on one of her previous visits to Sacramento to visit Beverlee.  She loved the water and especially the ocean, this was a very special event for her.  I’m glad she took the time to go on this trip, she almost didn’t go, because she was concerned about leaving my father home alone.  We convinced her that he was a big boy and could take care of himself, with some initial regret she went, but I think this time at the beach was all it took to make her see it was the right decision.  She is happy and content here and obviously shielded from the sun that she believed was the catalyst to her skin cancer.  But, she loved to be in the sun and near the water for as long as I can remember, she always said she wanted to live near the water.   I’m sure this was a good day for her.

DAY 32                                                                                          WEDNESDAY, 1-12-05

A day of silence.   

 

 DAY 33                                                                                                         1-13-05

     Mom passed away yesterday, one day after the third anniversary of dad’s death.  I have left the day blank, as a silent memorial for her, which I can fill with all the wonderful memories of her, memories that I will cherish forever.  They are too many to write about and it would be too hard to choose a few.  So, this is how the tragic day went, I knew it was coming, in fact, I prayed for her release, but still, we don’t really want them to die, do we?  That’s the selfish part of death.

   I woke up and went to check on her, Beverlee was already in there and told me that she wanted to give mom a sponge bath today, so we prepared to do that.  Beverlee held mom in a sitting position and washed her back and arms and then handed me the rag to wash her front, under her breasts, etc.  We put a clean tee shirt on her and washed the rest of her.  This is how we discovered, that overnight, since we had positioned her on her side just yesterday, she had developed horrible black bruises on the pressure points where her legs touched each other and where certain points of her body touched the bed.  I was horrified and did not know that this could happen overnight, I had always thought that this was something that happened when dying people were neglected and left lying in bed for long periods of time.   Evidently, it comes from poor circulation and lack of oxygen in the blood as the body begins to shut down, and it can happen overnight.  Seems a lot of horrible things can happen “overnight”.   It tore me apart to see her with these terrible looking marks, I’m thankful she doesn’t know and can’t see them. 

   The nurse called and came over mid-morning.  She dressed her sores, changed her diaper and talked to her, though mom could not respond.  She told us that the hearing is the last thing to go and that we should still talk to her, because she can hear us.  We did, telling her over and over that we loved her and Beverlee whispered to her that it was “okay to go” and that we would be alright. I stood in the background, as the nurse did her thing and Beverlee helped her, crying like an idiot, not sobbing, but just crying, I couldn’t stop. The nurse told us that mother probably had, at the most, twenty-four hours.  Of course, that didn’t help my crying. 

     The nurse got around to leave, but as she exited the bedroom, she asked me to come with her, as she wanted to talk to me, I followed her to the living room.  She began by saying that she was worried about me and as I asked her, “why me?”, Beverlee entered the room.  As is the usual concern of people, she said, “Because you are the baby”.  I informed her that I was forty years old and hardly a baby, but Beverlee and the nurse answered in unison, “you’ll always be the baby”.  She then began to tell me that she was worried because I don’t express myself and that I, “hold everything in”, telling me that my sister says how she feels.  I told her that I did not feel it was necessary to talk to strangers about my personal feelings, it was none of their business.  To me that’s why I have this journal, it’s my feelings, isn’t it?  They’re out aren’t they? And I didn’t have to tell a stranger, did I? 

     Anyway, Beverlee joined in and she was a bit of a smart ass, saying that she thought it was great to express herself and she loved to talk, suggesting that it is has helped her to find a better relationship, one that was open and honest and void of fighting.  All the sudden, of course, it is about her.

     I felt all kinds of feelings welling up inside me:  sadness about mother; anger at the nurse and Beverlee; embarrassment from being singled out, as well as, being “the baby”; exhaustion from lack of sleep and stress from the current conversation.  I’m sure there were more, but they were all jumbled up, I didn’t know what was going to come out of me first, but I knew it wasn’t going to be good.  

     I finally made a comment that I was scared that I would not be with mother when she left and the nurse said that, most likely, I wouldn’t be.  I stupidly expressed my personal struggle that it was killing me that I could not save her.  Beverlee snapped and told me how stupid that was and why would I think that I could save her.  The nurse, on the other hand, told me that it was a normal emotion.    Exactly why I don’t need to express myself, obviously that only opens the door to persecution.  My feelings and why I have them are my own.

     So, anger it was, Beverlee pushed me over the edge with the “why would you think that?” comment, then adding, “that’s stupid”, with a snicker no less, then not listening to me, as I tried to explain that obviously, I did not believe I could actually save her, but that it was just killing me that there was nothing I could to do to help her.

  Then it was on.  I belched out to Beverlee that this whole thing was about her and her last moments with mother till she took her last breath, no one else.  I brought up how she came into the bedroom while I was changing the towel and said, “what are you doing?!” so shitty, like I was stupid and shouldn’t be touching her.  Of course, Beverlee denied that she said it this way in front of the nurse, telling me that’s “bullcrap”, then adding all I said was, “what are you doing?”, using the inflection in her voice to lead us to believe she was calm and gentle and sang the question out like a damn bird.  I called her out, revealing that she was only saying she said it that way because the nurse was here and she wouldn’t want to admit she was nasty in front of anybody.  She replied that was, “just the way you took it”, I told her, “no, that’s the way you said it, I know what I heard!” We continued for a moment in a childish sibling way, as she denied it and I insisted she was crappy about it. 

     I changed the subject to when she was bent over mother earlier, telling her it was okay to leave and that I could not get near her if I wanted to, adding, that she wanted herself to be the last thing mother saw before she went.  Beverlee yelled back that was “bullshit” and wasn’t true at all, reminding me that I had been at mother’s bedside the previous day, holding both her hands and she couldn’t get close then either.   I mentioned that she was obsessed with believing that mother, “kept looking at her”, whenever she went in the room, adding that she wasn’t looking at anything, she’s in a coma and can hear, that’s it.  Beverlee’s next argument was to attack my distraught wanderings in the middle of night, “walking back and forth and opening and closing cabinets all night, what’s that gonna do?”   I told her that the only cabinet I opened was the one I needed to open, to get a towel for mom’s pillow and then I asked her, what going to bed and staring at the ceiling was going do. 

     Beverlee began ranting that I had mentioned that I wanted to go home after two weeks, then adding, “Well, excuse me, I’m sorry you had to come here for two-weeks, whoopee, I’ve been doing this for a year and a half”.  I told her that I did not say that in the context she was inferring and I thought she understood what I meant, when I told her that I missed home.  It angered me more that she said it so sarcastically and suggested that I really believed it was an interruption in my life to be with mother.  I told her that I could not believe that she kept throwing it my face that she has had mother in her home for a year and half.  Personally, I thought yea, but mother wasn’t this sick for a year and half, she was doing everything for herself, just merely living here, but I didn’t say anything.  She got to enjoy mother’s time and conversation, I only watched her die.  I reminded her that I thought we both had agreed it was the best place for mom and that I had defended her on many occasions to our brother and other sister, telling them that she was pretty wonderful for taking mother into her home.  She got up from her chair to walk to the kitchen, muttering,  “well, excuse me, you had to come here for two weeks! Two weeks out of your precious life, sorry!”  I reiterated that wasn’t the case at all, but she didn’t want to listen, she sarcastically replied, “whatever”.  In the heat of the moment, I said something I’ve never really said to Beverlee, I said, “F*#@ YOU!”  I said it loud and I meant it.  In fact, with the rage I was feeling at the moment, every time she giggled at her own smug comments, I could have punched her in the face and felt no remorse for doing so.

   About this time, the nurse brought us back to what was important, by saying, “let me go see if your mother can hear this”, and she went to mom’s room.  Beverlee and I just looked at each other and shut up, of course we hadn’t thought of that, but then I realized that she probably did hear everything, it was by no means a quiet discussion.  Beverlee and I joined the nurse in mom’s room. 

     A few minutes later, we walked the nurse to the door and as she gathered her belongings, I said firmly, “and we don’t need grief counseling either!”  Beverlee said something, but I wasn’t listening, probably a good thing.  The nurse left and Beverlee and I remained in silence for a while, she went to her office and I stayed in the living room.

     Beverlee appeared at the living room door a short while later and asked me to help her change mom again, I got up to help her.  We found a few more sores that the nurse had not dressed, thankfully the nurse had left the ointment she was putting on them.   I went to dig through the bathroom drawers to find some gauze and could only find the gauze eye patches mother had for right eye.  We put a couple together on the sores to cover them entirely and used the tape the nurse left us to secure them.   We re-positioned mother and left her alone.  Bev returned to her office and I went back to my place in the living room. 

     Late afternoon, Beverlee came out to me and said that she believed that our emotions were just high and we were stressed, adding that she was not mad.  I told her, “alright”, but added that she pissed me off when she was nasty about me changing the towel on mom’s pillow, she denied it again, at first, but then changed her attitude. 

     She told me that she had not been asleep previous to getting up and that I may not know it, but when she goes to bed, she doesn’t sleep, she just lies there.   She confessed that the lack of sleep and hearing mother’s abnormal breathing for hours, was driving her crazy and had made her irritated.   She admitted that she was irritated and tired when she got up and came into mother’s room that night and she may have said it that way, but didn’t mean it that way.  I told her that I understood that, but that she pissed me off by acting like she was nice about it in front of the nurse, because she wasn’t.   All I wanted her to do was admit she was crappy about it.   We agreed that we both had adapted to different ways of dealing with mother dying and that the ways we chose were irritating each other. We didn’t really apologize to each other directly, but we did agree that the tensions were high and emotions were many, then admitted that we loved each other and were not mad.  We returned to our separate corners again.  A short while later, of course, the counselor called, Bev took the call to her room and they chatted for a while.  Whatever, it’s still not for me.  I’m hurt about the “two weeks” thing, but I didn’t want to talk about it now, it’s over and other things are more important than dwelling on anger.

     We continued to check on mother, tell her we loved her and give her the morphine.  I was in the living room at approximately six-forty in the evening when I heard Beverlee, giving mom her medication and walking behind me back to her office. 

     A few minutes later, Bev got a phone call and I was on the couch, writing in this journal, when I felt something strange.   I don’t know what it was, but it made me turn my head around and look to the hallway for a moment, then it possessed me to get up and go to mother’s room. Something was telling me to go to mom, and that she was gone now.  I was scared and very apprehensive, as I slowly rounded the corner from the living room to the hallway.  Before I turned on the hall light, I was overcome with a tight chest and it was hard to breathe.  I stood there for a moment, just looking at her open doorway.   I held my breath, as I proceeded the additional ten feet to mother’s room.  I don’t know how, but I knew this would be the last time I would be checking on her.  I entered her room and could not hear the light raspy breathing that had oddly become a relief to me each time I went in there.   Weirder still, I didn’t expect to.  I walked to her bed and bent over her, then immediately turned on the light at her bedside table.  She was still, the room was silent and mother was gone. 

      I don’t know why and it sounds crazy now, but I put my hand on her back to see if she was still warm, she was, I knew that it had just happened, when I felt funny and had to check on her.  I think that I had to know that we didn’t leave her there, that we had just been with her, or at least Beverlee had, when she gave her the morphine a few minutes before and I know Bev always talks to her when she goes in there.   Although, I did think that Beverlee probably told her again, that it was “alright to go”, and it was, but at the same time, no, it wasn’t.  The nurse was right, she left without me, I was devastated and horrified and I screamed for Beverlee from the hallway, she came immediately. 

     She walked into the room and I stepped out the doorway, backwards, looking at mother, in shock and fear, telling Beverlee she was gone, but then asking, “is she?”  I knew she was, I don’t know why I asked that, I sounded like a little girl I’m sure, but I just couldn’t believe it, this couldn’t have happened, my mother was supposed to live forever.   I couldn’t take my eyes off her, as if we were wrong and any moment she would take a breath.  We both exploded into fits of tears, as I fell to her bedside and wailed like a baby, holding her lifeless hand in mine and kissing her, still telling her that I loved her, in hopes she could hear me, wherever she was now.   I recited my trusty prayer over and over to myself, as if it would help her ascend into heaven with dad, that is, if it is possible for her to be with him.  I continued to wail uncontrollably until I thought I would pass out.  So much for the quiet dignity lesson mother gave me at grandma’s funeral. 

     Beverlee left me to my sobbing and did what had to be done, calling hospice and telling them that mother had passed away.   I still couldn’t believe it when I heard her say it on the phone, it sounded so bizarre.    We had to wait for the nurse to arrive first, the “others” wouldn’t be here for a while.  I stepped in mom’s room a couple times while we waited, crying and talking to her, but it became too much for me and I couldn’t see her that way anymore. The image of her lifeless expression was burned into my mind, I knew it would haunt me forever.  I went to Beverlee’s bedroom and cried in solitude, she joined me for a short while, but left when the nurse arrived.

     I heard them talking and disposing of mother’s medications in the bathroom. Every once in a while, I heard Beverlee laugh, I wondered how she could laugh at anything right now, but again, we are different people and I don’t know what was being said.  I never left her room, during the whole process.  The “others” arrived to take mom and neither Beverlee nor I could stand to witness them taking mother away from us, so she joined me in the bedroom and asked the nurse to tell us when it was over. 

     I heard Beverlee coming to the bedroom and knew it was time, then heard her exclaim, “no, wait, wait a minute”.  I knew that she was going to return to mother’s room for one last time to say goodbye, she did, then came into the bedroom.  She asked me if I wanted to say goodbye again, I was so distraught, I could only say, “why? She’s not in there”.  Beverlee replied, “I know, but I had to kiss her and tell her I love her one more time”.  I understood that, but I couldn’t do it, I couldn’t see her like that anymore, I just couldn’t, mother knew how I was, she would understand. 

     I remember mom yelling at Beverlee while at my grandmother’s funeral years ago.  It is important to note, that I am speaking of my mother’s mother.   I was younger, well, not much younger, I was in my mid-twenties.  Beverlee had the idea that we should go to the casket and say goodbye to grandma, I thought otherwise, because I don’t deal with death very well and I had been in my own corner attempting to avoid having to see grandma that way.  It was not the last image I wanted to have of her.  Well, we did it anyway, holding hands like children, as we approached the casket.  I stood there for a moment and became over-whelmed.   I began sobbing and rushed away to another room.  Mother witnessed this and as I passed her, I heard her sternly say to Beverlee, “why would you do that?  Why would you take her up there like that?”  Mother came in the other room directly to check on me and offering Kleenex.   I had already begun re-collecting myself and I told her I was okay.   Wonderful mother she was, understanding her own children, she told me not to go up there again, reassuring me that I didn’t have to, it was okay.  Imagine, it was her own mother, but she remained strong enough to console me and worry about my feelings and how grandma’s death as affecting me.  What an amazing woman, she always put herself last to us children.  I will miss her more than anything in my life. 

     The nurse came and knocked on the door a while later.  The time span between Beverlee joining me in the bedroom and that knock on the door seemed infinite.  I tried not think about what they were doing to her. Both Beverlee and I heard the wheels of the gurney rattle across her hardwood floors.  We both thought the same thing, confirmed when Beverlee verbalized it, “I could have done without that”. That was exactly what I thought when I heard it, followed by the door slamming.  I knew right then, I would hear that rattle of the wheels against the wood floor forever.  That was it, with the slamming of a door, she was gone.  My poor mother was alone and taken away by people who didn’t even know her, strangers who never cared about her, to be left in cold dark place until she would be cremated.  I needed a drink, and I had it, I had several.

     Beverlee and I sat up in the living room pretty late, just looking at each other, dumbfounded.  We could not believe that she was not in the other room, watching her TV or sleeping.   We both had a couple drinks in an attempt to calm our nerves, but it didn’t work.  We just kept sitting there, until some time, I don’t know what time it was, it had to be very late, Beverlee decided to go to her room.  I stayed in the living room by myself for a while, until sleep overcame me, then wandered to my bed.  That’s it, that’s all that can be said about the horrible event that occurred at 6:50 p.m. on January 12, 2005, mom’s gone and just like she told us, “we can’t change it”. 

     Today, Beverlee suggested that we get out of the house and go to lunch at mom’s favorite restaurant, I was hesitant because it was only yesterday that she left us, but I agreed.  I’m glad we did, we had a nice time talking about her while sharing a place mom enjoyed.  We met a friend of Beverlee’s for drinks after lunch and returned home fairly early.  The rest of the day was quiet, and we sat up late, as usual, trying to get to a place where we could go to sleep and at the same time, trying to convince ourselves that this was real.

“LEAD US NOT INTO TEMPTATION, BUT DELIVER US FROM EVIL”….

rosary

Goodbye mom, may you find peace in a painless, cancer free world with dad.  We will miss you immensely.  Love forever, your daughters.

DAY 34                                           1-14-04

     We still wander around the house, lost and in disbelief.  I even came out of my room earlier and suddenly thought, “I have to check on my mom”, then was actually heading toward her room, before catching myself.  It has become habit after checking on her so often throughout the day.  I have been doing it for six weeks, it is hard to realize I don’t have to anymore.

     Beverlee asked me if I was staying for a while or if I was going home right away.  Somehow, going home didn’t seem to be an issue anymore, I couldn’t have cared less.  I told her that I would make my flight arrangements for the following week, when she returned back to work.  I didn’t want to be in the house alone every day while she was working.  She asked me if I wanted to move into mom’s room, I told her no, I did not.  She wanted to know if I would have a problem sleeping in there whenever I came back to visit, I just looked at her, thinking, “well, yea, probably”, but I told her, “I don’t know”.

     I called the airline and obtained a reservation for Tuesday, January 18th at twelve-thirty in the afternoon.  I decided that I would take another week at home to pull myself together before spending ten hour days at work, hounded by people’s condolences and questions.  I called work and told them I would be back to work on the following Wednesday, adding that I did not want any phone calls at home.  The secretary asked me about a memorial and I told her that we were not having one in California, but most likely would have one later, in Pittsburgh, at mother’s family home.  I told her, that if anyone felt so inclined, donations could be made to the Cancer Society in mother’s name.  She asked me in which state, Indiana, Pennsylvania or California.  I told her any state, as long as it went to the Cancer Society or breast cancer research. 

     I asked Beverlee if we could go get sushi for dinner, one of the best restaurants for sushi is right here in Sacramento.  Bev agreed that would be a good idea and that mom would not want us to stop living, reminding me that mother had told us, “you live your life, live every day to the fullest”.  We went to dinner and we had a good time, though at moments, I felt guilty for “living my life”, I have a feeling that guilt will plague me often and for quite a while.  

 DAY 35                                                        1-15-05

     The days all run together, Beverlee has found some solace in working via her laptop in her office to catch up.  I still have my journal and have decided to continue to transfer it to my laptop, in hopes that I can write a book on our experience.  I want to document our last days with mother, so that it may serve to help others in dealing with a loved one’s illness.  My plan, should I be successful, is to contribute a percentage of the sales, if any, to the Cancer Society.  I have discovered through mom’s illness, as well as dad’s, that there are vast amounts of knowledge about this disease that remain undiscovered.    It would be a comfort to me to know that I could help, if only a little.  I know it is a big dream and one that I had not considered until now, but I would like to try and it helps me to write about it.  I have shared my insane idea with Beverlee and she likes it, more importantly, she believes in me and has been positive about it, even when I think I may be crazy.  Funny how something like donating to a cause, doesn’t seem important until it touches your life.   I guess it’s sad too in a way, that it takes being directly affected by the disease, to get involved in actively working toward a solution.

     I have collected a bunch of crap that I need to mail back home, it will never fit in my luggage.  I have packed two rather large boxes and asked Beverlee to take me to ship them, it was more expensive than I anticipated, but I did it, are they crazy?  Thirty some dollars for a frickin’ box, ground, to be delivered in ten days!  My bill was nearly sixty dollars, maybe I should have checked ‘em, no, baggage claim sucks, it was worth it, I guess…the thieves.

     Beverlee has a friend over, I told her to get out of the house today and not worry about me, I’ll be fine with the beaners.    I love those little dogs, they continue to give me a reason to laugh.  Sydney has noticed that mother is missing and goes into her room often, it is touching how sensitive to change and distress an animal can be.  I feel sorry for her that we can’t explain what has happened, but I have a feeling that she is aware it’s not good. 

     Through mom’s illness, Sydney was always connected with her, sitting on her lap and lying by her on the floor, whimpering, whenever she fell.  There were many nights when mom went to bed to watch TV and Sydney wanted to get up and lay under the covers with her, so we put her up and allowed her to crawl down by mom’s legs and take a nap.  Mom was cute when she’d sit with her, always with one hand on her back and head.  Mother was never a huge dog fan, but it was evident that she liked the beaners.  Toward the end, poor Sydney could not sit on mom’s lap, she was too heavy for her sore legs, but Samee, being much smaller and lighter than Sydney, had been taking the vacancy on mom’s lap.  Beaners, ha, I think I love the little critters more knowing how they loved mom.

        We have each been having a couple drinks every night, in an effort to relax enough to go to bed.  Beverlee only drinks wine, but is afraid that we have become alcoholics.  She kills me, I told her that was ridiculous and that neither one of us were drinking to excess, I only have two and so does she, for now, it takes the edge off.  I have also begun to use sleep aids, unfortunately, they don’t put you to sleep, they just help keep you asleep.  I considered using them while mother was alive, but I was afraid that I would not hear her at night or that I would not wake up to check on her, so they were not an option then.  Still, now it is a blessing, if I wake up for any reason during the night, I am up until morning, thinking about mom and crying, no, sobbing, the pills help me avoid that, at least for most nights.  For me, the initial getting to sleep, still goes on into the late hours of the night and early morning, I continue to feel exhausted but I use these hours to work on my book.    I have to laugh when I hear myself say that, “my book”, what an idiot, but I’ll keep writing, if nothing else, it keeps mother alive for me.

CHAPTER 11

Hey mom!  What’s this mean?

     My mother was a walking dictionary.  If I ever came across anything that eluded my range of definition, mom could quickly explain it to me.  I loved our time playing games, in specific, scrabble.  Mom loved to play scrabble and she made me love it.  I learned so much from her with every game we shared.  She was always making words from combinations of letters that many other people would have found useless.  Of course, from childhood to adulthood, I was always asking her what they meant. 

     At a game several years ago, I regretted my decision to allow Beverlee to join us.  We had a few drinks by the time she convinced me to allow her to use the acronym, “FAQ”, some people just don’t get it, do they?  But, it was funny at the time and allowing her the score wouldn’t have saved her anyway, so I agreed.  Of course, several plays later, mom questioned it and it became my fault that an abbreviation was placed on the board.  Of course, we just all laughed at Miss Bev and her attempt to pad her score.   Beverlee has a way of eluding reprimand, can’t knock her for that I guess, easier to just have another drink.

     I wanted so much to be like mom, have her knowledge and wisdom and to flaunt the mastery of vocabulary I obtained from her.  She was a good and gracious sport, never caring if she won or lost, though she always won.   Armed with the expertise she has left me, I challenge friends to online scrabble often.   I’m far less gracious than mother, funny how we pick up some traits from our mothers but not others, isn’t it?  I taunt and torment my opponent, as though they were not a challenge to me.  I know, mother would be appalled but not surprised at my actions, after all, her baby was always a bit of a brat.

     I have tried to complete a crossword with the same ease as mother did, but it’s simply out of the question, they’re hard!  She always threw the paper down with the puzzle completed, I always just throw it down.  She went through countless crossword puzzle books over the years, not a one beat her, simply amazing.

 DAY 36                                                     1-16-05    

     Sunday, my departure date is getting closer, I feel funny, like when I leave this house, I’m leaving mother.  After a year and a half, it feels like her spirit and energy lives here.  We both are still having a very hard time, breaking out into tears at the sight of mother’s belonging’s, some left in the living room on the table by her chair.  The shawl she got for Christmas still hangs over the back of her recliner.  She was so cute when she got it, wrapping it around her self and petting it, because it was soft.   It was especially made for her by one of Beverlee’s friends, it is pink and very soft to touch, she loved it.   It has pockets on each side and she put the beanie angel bear I put in her stocking in one of the pockets, so just its head peeps out.  In the other pocket, she put the worry stone, with an angel inside, that Bev bought for her stocking.  I often saw her rubbing that stone or holding that silly bear on her lap.  I have told Beverlee that I want to take the bear with me.

     One of Bev’s friends called, she thinks I should get out of the house and offered to come get me, I agreed.  It was a nice afternoon, we went to some antique stores, which is my favorite activity, had lunch and proceeded to go wine tasting.  I love doing that when I come here, so I’m glad she thought of it. It’s not a trip to California without wine tasting.  I have learned to enjoy fine wines from Beverlee and actually, I have become a bit of a snob.  A wine snob that is, I certainly don’t have anything else to be snobby about.  Anyway, we continued our day into the evening and did the dinner and a movie thing.  I’m glad I went, she is a fun person with a positive and happy outlook on life.  The day was refreshing, after all the crying and sadness that have consumed me these past days.

     When I came in, Beverlee and a friend were watching a movie, I joined them in a glass or two of wine.  Unfortunately, I was still sitting on the couch, wide-eyed and doomed to be awake for hours, after Bevelee went to bed.  What can I say? I may never get over this.  No, right now, I can safely say, I will NEVER get over it.

DAY 37                                           1-17-05

     Monday, I’m leaving tomorrow, I’m starting to think I should stay longer.  I’m worried about Beverlee having to come home to an empty house and an empty chair, where mother used to be.  She has the dogs at least, but it’s going to be hard for her.  I feel guilty removing myself from this element and into my own, three thousand miles away.  Still, I have to leave some time and she will have to adjust sooner or later.  I know it will be harder for her than me.  I won’t be around mom’s stuff, in her empty room or sitting in her recliner every day.  I asked her if she wanted me to help her go through some of mom’s stuff, she has made it pretty clear that she wants to do it alone.  She has told me that I can take what I want, but I have only taken a few items, it is too hard for me to worry about taking her stuff right now, it seems like it’s still hers.  I have decided to take only four items with me, mom’s Christmas angel bear, a stuffed dog I gave her in the hospital during her facial surgery a few years ago, the watch I gave her for Mother’s day and a glass rose, that I remember was always on her dresser since I was a small child.

     Beverlee keeps trying to re-assure me that she is not going to touch mother’s stuff for a while, saying that she may just go through her clothes first and donate them to a women’s shelter.  I have told her that I am not worried about what she will do, whatever she wants is fine.  I always thought that when this day came, we would never fight about anything that belonged to mother.  Bev said she wants to keep mom’s room like she had it, then asked me if I thought it was weird, I told her no, that whatever she wanted to do was fine and that when I returned, it might be nice to go into mom’s room and remember her.  Maybe then I can do it without sobbing like an idiot. 

     I haven’t been in mom’s room since she passed away, I can’t do it, I want to, but I can’t.  I asked Beverlee to shut the door right after she passed and she did it for me, for a couple days, then, opened it again.  She said she felt like she was shutting mom out, I thought she was probably right and just dealt with it, though using the restroom right outside her doorway, is hard for me.  It’s horrible, but I try not to look in there when I pass the doorway.  It’s not that I want to forget mom, never, ever, that, or that I don’t want to see her stuff, I just can’t do it without blubbering and wailing like a child and I don’t want to do that all the time, mom wouldn’t want me too.  Dad would tell me to cry all I want, it cleans your eyes out.

   The day was uneventful, Bev is still working at home, she returns to work Wednesday.  I know she is apprehensive as well as worried about getting back to work.   She has been afraid through the whole process of being home with mom that she would lose her job, despite positive feedback from her office that it was okay.  I can’t blame her, she has a great job that she enjoys and she doesn’t want anything to take it away from her, she has worked hard to get where she is.  On the other hand, my leave has kicked in and this is only the first week of it, another reason why I feel I should spend some more time with her, but she’s probably ready for me to leave anyway.  I am still “the baby”  and a pain in the ass as well.  I figure once we are apart, we can grieve in our own ways, as often as we need to and without conflict.  I haven’t cried much, just little spurts here and there, I don’t want her to see me wailing all the time.  I have refrained from any displays during the day but cry every night when I finally get to bed.  Sometimes I feel like the crying will never stop.  I know that every day for the rest of my life, I will be mourning the loss of my mother, I hope that every day doesn’t bring me to tears.  So much for mother telling me, “there’s no crying”.

     Time to get packed….

     I’m back. I did it.  I went into mom’s room.  I knew it would be my last chance before I left.  I didn’t go in until a while after Beverlee went to bed.  I thought about sleeping in there to be close to her and I slowly made my way to her door.  I stood in the doorway, no breathing now, just an empty room, I hesitantly stepping inside.  I sat on her bed and looked around, then laid down with my head on her pillow.  I did not get under the covers, I didn’t want to disturb anything.  Before a minute passed, I was balling like a baby, talking to her, telling her I loved her and that I missed her and wanted her back.  Sounds crazy now, that I see it in print.  I cried for quite a while, until I was almost asleep from the strain of sobbing.  I calmed down a little, still sniffling and sat up again, then left her room to go to my own.  Funny, but It felt good that I did that, I was scared but I did it and now I’m glad.  I don’t know what I was scared of, crying or being faced with the fact that she was not in there, that she’s gone and I couldn’t pretend that she wasn’t anymore.  I thought about the few mornings when I went to get her up and ended up lying in bed with her for a while to allow the medications time to kick in before moving her.   I miss her immensely, I will always miss talking to her, what a rip off. Life sucks, oh wait, it’s death that sucks.

SCRABBLE QUEEN

scrabble

I’ll forever enjoy playing this game because of mom, and, I’m good at it because of her.  I thank her for stretching my mind and making me think and learn.  Regardless of how some feel about this game being lame, it is a thought and strategy game and exercising your mind is never a bad thing.

CHAPTER 12

Go back to bed

     Like a lot of other children, if I awoke during the night, I grabbed a pillow and headed for mom and dad’s room.  Mom was always reserved, but okay with it, allowing me to crawl up between them.  Dad, well, he was a different story, rolling over to his side of the bed with a low, sleepy growl.   Kids are annoying sometimes aren’t they?  Moms would never think so, but they are and we know it.  Dad and I had our thing too, I would wait outside their bedroom door each morning for him carry me downstairs, I loved the smell of his cologne.  He’d always come right out the door, see me standing there, scoop me up and carry me to the bottom of the stairs, I loved that.

     I remember when joining them in bed stopped and mom told me that I had to go back to bed, she got up and took me herself, tucking me back under the covers.  I was devastated, as I lie there awake, staring at the dark ceiling that sealed my fate.  I did well for a long time, that is, until mom and dad went out one night and decided to leave me under the safe, watchful eye of Miss Bev and my brother. 

     At that time, they were fairly close and Bev was growing away from me.  The five years between us became decades and playing outside in the woods was becoming a memory.  Anyway, they thought we should watch an extremely scary movie on what was then called, “Starchannel”.  Starchannel was a box, which, sat on your TV and with a flip of a switch became a movie channel utopia.  The great thing about Starchannel, was that you could lock it, to keep your pretentious children from viewing inappropriate material.  Since the electronic age was many years away, it took a simple key to lock the box.  Of course, it’s not a great thing, when the parents are to trusting and put the key underneath the box.  It took my brother and Beverlee about five minutes after mom and dad left to get the key and switch it on, the brats.  It was very early in the evening and not quite my bed time yet, of course, being a kid, I wasn’t going until it was time.  So, Bev, my friend and sister, who had already seen this particular movie, decides that she will tell me when “not to look”.  That worked out well . . . no it didn’t, since she got involved in the movie and forgot about me.  It’s important to remember that the sound doesn’t stop just because you don’t look. The wild screaming and demonic voices emerging from the TV were not helping.  Naturally, due to some of the sounds generated by the soundtrack, and because all children are curious and have to look, I looked.  Oops.   The demons were reaching from the depths of hell to toss a bed around in a young girl’s bedroom, with her still in it mind you, and everybody was screaming.  Okay, yea, I want to go to bed after that, which was Beverlee’s next bright idea, “just go to bed then.” Uh huh, okay, uh, no.

     Mom and dad came home and I was still up in my room, refusing to get into bed, lest it rise to the ceiling and toss me out the window to a painful death.   Mom and dad went to bed a short while later and naturally, I figured I could just join them and the bed would remain on the floor.  I was completely wrong, mom was not going to have it and escorted me back to my room, as I ratted out my siblings for supplying me with an evening in the house of horror.  Mom told me that it was just a movie and it was ridiculous that I was afraid of my bed, then making me get in and tucking me inside what might have been my end.  Mom paced back and forth at the bottom of my bed for a long time before telling me that she was not going to stay in there all night.  She stayed a while because she knew I was genuinely scared and she’s a good mother,  but I know she wasn’t happy about it.  I grabbed onto little handfuls of sheets and mattress, in hopes that it would help keep me anchored, should anything go awry and the bed would begin the twisted, rocking, flying dance of death.  I hope Bev and my brother got theirs later, for interrupting mother’s sleep that way, but they probably didn’t.  Eluding punishment even then, Miss Bev?

    To this day, I remind Beverlee of that fateful evening of terror she subjected me to, she still maintains that it was not scary and that I should have just, “gone back to bed”, humph, “to bed”, is she kidding with that stuff?  For the record, I have seen that film a couple times since then and it’s fine, I’m good, it’s only a movie…..isn’t it?

 DAY 38                                                       1-18-05

     Beverlee drove me to the airport, we didn’t speak much until we got close to the airport.  Beverlee tearfully thanked me for coming out to help, I replied that she didn’t have to thank me, it was mom.  We both we’re beginning to cry, when, distracted in our sorrow, Beverlee nearly made a wrong turn into a curb and we had to laugh, as she quickly corrected it. 

     The flight home is vague, I felt numb, as I moved on auto-pilot through the airport to my gate.  I felt like everyone was looking at me and that they knew what had happened.   I was consumed with all the “stuff” in my head and any outside noises seemed muffled and unobtrusive, as I thought about what had just happened, as well as being saddened at having to leave Beverlee.  The thought of her being all I have now seems so strange, it’s not a bad thing, I love Beverlee, but it’s still weird, I feel like an orphan.  I fit the criteria, no father and no mother.   Reminds me of how mom used to tease me when I was little, upset and crying about not getting my way.  She’d hold me, hugging and kissing me and say, “aw, poor little thing, don’t have no mommy and no daddy…ahhhh” as she swayed me in her arms, of course this would upset me more and I would begin wailing, now, it was true.

     Leaving Sacramento for my destination to Dallas went smoothly.  Of course I can’t say the same for my connection from Dallas to home.  I had a thirty-five minute delay because, and I couldn’t believe it, the coffee maker was broke.  Come on, let’s see, flight on time, no coffee, hmmmm, I can see their dilemma, no I can’t. Coffee drinkers can drink something else or do without for a couple hours.  Thirty-five minutes sitting on the plane while maintenance “figured it out”.  I can just imagine what a collection of pants hanging off the butt geniuses were trying to solve that puzzle.    Anyway, the maker of the caffeine delivering elixir was restored and all was well with the world, allowing us to finally be cleared for take-off.  Hey I love coffee too, but come on, I can go off it if I have to.

     I got off the plane and was greeted by a high gust of freezing cold wind and snow that prompted me to want to climb right back on the plane to anywhere, but here.  Quite a change in the weather from sunny California, it had been in the sixties for most of my stay, I had almost forgotten it was winter, until I got here.  I guess I’ll finally put on the sweatshirt I have been carrying through both flights, but even that is not enough, in this tundra we call Indiana.

     Back home, it’s weird, I feel strange and I don’t know what to say to anybody.   I feel like I have left mother behind, but that’s not right, because she isn’t there either.  Still, I wish I could feel her with me, I wish I knew that she was okay, but I know I never will, not until it’s my time to go, and then it will be too late to matter. 

     Right after mom passed, okay, the night mom passed away, Beverlee mentioned that she was with dad now, as well as gram and pap.  As I usually have bad timing with my inappropriate remarks, I told Beverlee that this belief is something that is made up by the living to make themselves feel better.  Beverlee was upset and firmly asked me, “why do you have to be so negative all the time!!  It doesn’t make me feel better.  Well, it does make me feel better, but what’s wrong with that?” It was hard not to laugh at the way she said that, but I didn’t.  I told her nothing was wrong with that, I was just saying that the premise that deceased loved ones are with other deceased loved ones was made up by the living to make themselves feel better about the loss.  I told her that I am a realist and that no one really knows what happens when you die, we won’t know until we die.  I did add that I hoped she was right.  Needless to say, she didn’t like that and had nothing else to say.  I told her later that I was sorry, it was bad timing to express my “negative” views at that particular time.  But what can I say?  That’s how I am and I can’t change it, at least I don’t think I can, or is that, I don’t want to, anyway, as mom would say, “it is what it is”.

   Now that I’m home what do I do?  I feel like I should be doing something, but at the same time, I feel like it isn’t right to be doing anything.  I reserved myself to cleaning the house, starting tomorrow, it’s late, I’ll take my sleepy pills and go to bed.    I am so exhausted…..

DAY 39                                        1-19-05

     I have decided to keep the journal up, at least for a few days, it is obviously still hard for me and even weirder now that I am home, continuing to write will keep mother close.  I have not unpacked, I don’t want to look at the stuff of mom’s I brought home, at least not yet.  I have started with the house cleaning, it will take me several days, I am rather anal and cleaning every room in one day is out of the question, plus, what’s the hurry? 

     I received a call from one of Bev’s friends, the one that spent this past Sunday with me, it was nice of her to think of me and check to see how I was doing.  It’s cool that she called, but I remain adamant that I do not want calls from friends here.  I’ll deal with them Iater, I don’t want to talk about it.  Then again, I may be thinking to highly of myself, maybe nobody intends to call me, that’s fine too.

     I have several photos of mother in my living room, all from when she was young and beautiful.  I have two on my fireplace, one of her first communion when she was ten.  The other was taken with my uncle bobby, when he was five and she was seven, they are so cute together in their little winter coats and hats.  The third picture hangs over my computer, it is her graduation picture, so pensively posed looking from her right side over her shoulder toward the camera. She is beautiful, I can see why dad had to have her.  Funny, the side she so proudly displays to the camera then, was the same side that would be disfigured by cancer later, we never know, do we?  It is very hard for me to look at this photo and not cry, but then, when don’t I cry lately?

     It’s funny that Bev and I have become opposite of our characters, we were known to mother as being the ones who never cried.  It took a lot of crap, and I mean a lot of crap, to make either of us cry, ever.  I think that was why mom got so upset at seeing us cry with her, she knew how we were and was torn apart by seeing us cry, knowing how much it must be hurting us.  Now we have been reduced to nothing but cry babies and we have called ourselves that several times.

     Other than cleaning and crying, this day was uneventful.  Note to self:  Get kleenex.

 DAY 40                                                  1-20-05

     I unpacked some of my clothes and did some laundry, there is still stuff in the bags and of course, mom’s stuff is still in there.  Except for her watch, it was in my laptop bag and I have placed on the hand of my statue of the Virgin Mary, given to me by mother years ago, for safekeeping.   The rosary, I carried for days on end during her facial surgery is there also, I wish I had taken that with me, I meant to, but forgot it, not like it would have saved her anyway, right?   Nothing could have saved her, not me, not God.

      When I carried it then, I thought it would save her, I had it wrapped around my wrist and never took it off, after several days, I was afraid to.  I don’t even know how to say the rosary, I always just repeated my one and only prayer over and over and over.  When they checked her heart before the reconstructive surgery on her face, they thought it was irregular and made her do a stress test.  I must have said the Our Father a hundred times if I said it once during that test.  She did fine and her heart was in good shape, I remember thinking, “what if my rosary and prayers really helped her?” 

      I remember getting that rosary, I got in the chapel at the hospital in Pittsurgh.  Beverlee and I stayed there with mom and slept in chairs at her bedside for several nights.  The hospital staff was very nice to us, poking their heads in at night to see if we needed snacks.  Funny, the things you remember with a little thing like an old rosary.  To this day, no one even knew I carried that rosary but me, not even mother, it was private tome and I didn’t want to seem silly to anyone.  I Guess I owe Beverlee another apology, I believed in something once that made me feel better too. So, what’s wrong with that?

 DAY 41                                                  1-21-05

     This is the third day since my return and I have not run out of reasons to cry about mother.  I have continued the slow process of my cleaning ritual and have still not removed everything from my bags.  It’s like I don’t want to be reminded I ever went there or that it ever happened.  It has become harder for me because when I think of her, I can’t imagine she is not sitting in her recliner doing her crossword puzzles.  It’s surreal and difficult for me to accept that she is gone.  I have to talk myself into realizing the truth.  I am left asking myself, “did this really just happen? Is mom really gone? Or sitting in her chair with the beans?”   I don’t want to fool myself into thinking that she is still here.  I don’t want my disassociation with everything that was her, to misguide my mind.  I know I am not crazy, I know she is gone, my head tells me that she is gone, but my heart wants to feel otherwise, my heart wants to believe she is at Bev’s, watching TV, reading and doing puzzles.  Okay, maybe I am crazy.  Yea, I’m definitely crazy.  Therapy anyone?

DAY 42                                                    1-22-05

     Saturday, it has been only ten days since mother passed away.  I wonder what a normal grieving period is supposed to be?  I have thought about her every day since it happened.  I am still cleaning and I am still partially packed. I know, get over it and unpack ya loser.  The house isn’t that dirty, but there is always something that could be cleaned better. I just want to stay in and not talk to anyone just yet.  I want to get back into my normal habits and take time for myself to straighten out my head and accept what has happened. 

    I believe that part of the reason this is so hard, is because taking care of her through the worst part of her illness left me privy to things that I never thought I would have to see happen to mother.  I would do it again without question, but I think it makes it harder than say, just getting a phone call that a loved one has passed.  I do not mean to downplay anybody losing a loved one in any way, because no matter how it happens, it’s horrible.  Still, I can’t explain how I feel about having been a caregiver, actually watching someone I love dearly die, getting rapidly worse day after day after day and being powerless to help.  I went from seeing her racing around with her walker and eating fairly well, to not even being able to stand and having difficulty just sucking ice chips, in a very short period of time.  What the hell?  It may not have been so much the care giving, because I did not mind that at all, maybe it was just the disease.  Maybe it was watching what a horrible thing cancer does to a human body.  Maybe it was living everyday with the evil that is cancer.   God Bless anyone who has ever been through this ordeal, as well as anyone, who are patients and their family members, that are living with cancer.  It is a very difficult task and I know I will look differently at those I know are connected with this disease in any way.

     Anyway, I’ve been home only four days and obviously I still have very strong feelings about what has happened, I will continue to write this journal at least until I return to work.  I’ve come to believe it helps me, something has to, before I go nuts.  I have more time to think about it now, when I was doing it, there was no time to think about anything, you just did whatever needed done and that was the end of it.  Now, being in the solace of my home, thoughts, ideas, beliefs and memories are flowing from my mind.  I keep seeing her lying there, remembering feeling the warmth of her back after she passed and the horror of realizing she was gone.  Now I’m starting to scare myself, this is very hard for me, is it this hard for everyone?

DAY 43                                                  1-23-05 

         It is Sunday and fairly quiet.  I have been working on my “book” and I think I’m doing okay, I don’t know if anyone would read it, but it’s hard for me to judge since it’s my own experience, who knows.  I am down to just catching up on laundry, I didn’t bring much that needed washed back, but I left some here and I wanted to wash my sheets.

    I have gone grocery shopping and picked up additional sleep aid supplies while I was out.  I tried to go without them, but it didn’t work out very well, I’m not ready.  I don’t think I’m an addict, unless I’m addicted to sleep, ha.    In any case, I will continue to allow them to bring me uninterrupted slumber.  It has been nice being home with my own dog, he was just a puppy when I left, I missed his whole “puppyhood”.  He is at least twice as big, but still a cutie pie, I think I will always have a schnauzer, but Beverlee’s beans have made me think, maybe I need a little wiener dog too.

     My fish tank needed cleaning when I got home, but I figured the easiest way to fix that, was to go buy a new one.  For some reason, I have always related buying things with feeling better, don’t know why, God knows I don’t have a bunch of money.   The two small koi and fantail goldfish have been trapped in a ten-gallon tank since the end of summer, when I had them outside, they deserve something bigger, so I tell myself.

      I got lucky, the local pet shop had clearanced some of their tanks and I managed to secure a nice oak cabinet, hood with light and twenty-nine gallon tank for a more than reasonable price.  Setting it up gave me something to do for the afternoon and by evening I could tell they were happy little fish, zooming from one end of the tank to the other in clean, clear water.  I’m glad I did it, it’s cool and they look nice.  Why don’t I feel better?

 DAY 44                                                    1-24-05

      I have only two more days off before I return to work.  I am starting to fear the onslaught of co-workers approaching me and reminding me all day long that I have lost my mother.  Now that it’s so close, I want more time off, but I have to go make money, there are bills to be paid and I have to cover the crazed expenditure of my new aquatic wonder world.

     I have cried today more than I have in the last couple days, I think I feel like I need to get it out.  Sometimes I just start crying out of the blue, with no provocation, I don’t want that to happen while I’m working.  I guess I have this silly idea that if I cry a lot now, there won’t be any left.  I still feel like I haven’t had enough rest, I can’t seem to catch up. 

     I have talked to Beverlee several times to be sure she is okay, she says she’s doing alright, but of course it is weird without mom there.  She is used to calling mom throughout the day to check on her, it hits her when she realizes she doesn’t have to.  Bev’s friend has called me three times since I have been home, I appreciate that she remembers to think of how I may be doing and it’s nice that she makes me laugh.  She says she checks on Beverlee too, I’m sure that she does and I’m glad someone that lives near her can do that.

     Not much to report today, stress about going back to work and trying to get last minute chores done.  Yes, my bags are still packed, I guess I’ll have to take care of that too, sometime, today, tomorrow, I’ll get to it.  It has been twelve days since mother passed, it seems I have been crying forever, but twelve days is not very long, I still have a right to cry, don’t I?  How will I know when it’s been too long, when I’ve passed the normal grieving period and into insanity?  What is normal?  Is there an amount of time associated with grief or is everyone different?  Why do I burst into tears when I’m left with any moment of silence?  Is something wrong with me?  I keep remembering Beverlee telling me that mom told her, I “love too much”.  What does that mean?  I love too much.  How does a person do that?  Is that what is precipitating my days to begin and end in showers of tears?  Can’t be, that would mean I was nuts, and I know I’m not nuts, I’m sad and have suffered a horrible loss.   Right?  I’ll be fine, I have to be, I told mom I would and life gives us no choice, that’s what the living do, they go on living.    

 DAY 45                                              1-25-05

     Tomorrow I return to work, it’s probably a good thing, I might be driving myself crazy with grief staying at home alone all day.  I need to go channel my energies on something else, work is good for that.  I know I thought I wanted more time off, but I’m good, it’s time to go back.  I have been lucky, a standard bereavement period is three days, I’ve had nearly two weeks.  If anyone had wanted to call, they respected my wishes and did not call me at home, that helped a little.

     I cried only once today and am beginning to toughen up to make ready for moving on and going back to work.  I will continue to call Beverlee, I know she was afraid that we would not keep in touch with mother gone, but that won’t happen, I love her and I enjoy hanging out with her, besides, mom told us to “take care of each other” and we will.  Weird to think we’re all we have now, but I couldn’t ask for a better sister if that’s the way it is to be.  I’m sure we will never hear from our other two siblings again, their only link to us has passed and it’s not like they called mom much anyway, my brother never called her.  I will not forgive either of them for not calling mom on her last birthday, I’m sure she was saddened by it, they suck.  I wish they saw in mom what Beverlee and I have, they lose, they missed out on a wonderful woman and mother, because they are thoughtless and selfish.  That said, I will never mention them again, except to say, may they rot in hell.

 DAY 46                                                       1-26-05

     First day back to work, it is Wednesday and the two-week anniversary of mother’s passing.  I was beginning to feel that this day may not have been the smartest choice for returning to work, but starting today would give me a full week’s pay.   I pulled onto the lot in my chili pepper red Wrangler and secured a descent parking space, then hopped out, somehow smacking my right hand on the edge of the door frame, but I ignored it.  I was more focused on getting inside and on with this day.

  Upon entering the building and getting clocked in for day before six, I realized that I had blood all over the front of my sweatshirt, nice.  As I searched for the origin of my wound, I discovered that I had taken a layer of skin off my thumb when I hit my hand on the Jeep.  How I got it all over my sweatshirt in the short walk to the time clock, I still have no idea.  Knowing I couldn’t go through the day looking like I had just committed an ax murder, I acquired a new sweatshirt before beginning work.

     It went okay, I really felt like I was moving on being back and having all these other people around me.  I still found a way to get caught up in myself and thinking about mom, fortunately my job allows me the freedom to spend a few minutes alone in the office if I need to.  I feel like I need to get acclimated back into my routine slowly. 

   Nobody overwhelmed me and everybody was polite, approaching me inoffensively, quietly expressing his or her condolences and moving on.  Some, I didn’t know very well, asked how my mother was doing, that was hard.  I thought, “What do I say?  How do I answer that?”  How is she doing?  She’s dead, that’s how she’s doing!  I know they were trying to be nice, but it made me mad, I was polite to them, saying, “she passed away”, then watched their embarrassment at having asked and apologizing, adding, “I didn’t know”.  Well, you didn’t know, because I don’t know you and it’s not your concern.  I couldn’t help but think, if you don’t know me, or my situation, don’t say anything to me and save us both the bullshit.  Obviously I am still angry at having lost her, can’t see that stopping too soon.

    Outside of my twisted anguish, not only at those who were unaware of what they were saying, but at the world, because I was forced to say out loud that mother had passed away, I guess being back to work is a good thing.

     After six o’clock this evening, as has become a new ritual on Wednesdays, I found myself watching the clock for six-fifty to come.   The moment I felt mother’s energy leaving us, possessing me to go to her room and discover that she was gone.  I will never forget that night, that feeling or the image of mother lying there, gone, without me.

DAY 47                                                 1-27-05

      Today was pretty much like yesterday, I’m glad my position gives me plenty of opportunity to be by myself.  I still don’t feel like talking much and I don’t want to be reminded constantly about what has happened.  I did what I needed to do and couldn’t wait to go home.  I’m sure this will get easier eventually and my life will get back to normal sometime, but for now, it’s hard to believe that will be any time soon.

     I returned home to discover a package from my aunt.  I opened it to reveal a porcelain statue of an angel, her hands stretched straight out in front of her, holding a star.  Immediately I began to cry, I knew what she was trying to tell me.  I am including her note to me on this day, because it is so incredibly touching and thoughtful, I will cherish the present as well as the card she sent forever.  She wrote the following in her card to me:

“Dear Tracey

     Your mother shared with me the joy she felt when you gave her the gift of the star . . . when I saw this, I thought it would be a little reminder . . . mothers and fathers do the best they can . . . love never dies . . . your mom and dad live on . . . in you.”

      My aunt prefers to be called by the name given her when she so selflessly became a nun and made the choice to live her life to serve God as, “Sister Monique”, it made me feel good that she added, “Aunt Lillian” in parenthesis, to her signature.  I have always thought a lot of her and have been proud of her work with mentally disabled children and the elderly.  She is a wonderful human being and I’m glad that mother had her as a sister.   I am forever grateful to her for spending five days with mom in Bev’s home this year, as well as, all her calls and letters to mother. 

    Kind of funny I should remember now, how when I was little I was terrified of her when she was in full habit.  I remember the poor woman, bending down to my level with her arms outstretched for me to come to her, and what did I do?  I cried and grabbed mother’s leg, refusing to allow this monster to swallow me up in her giant spread black and white flowing wings.  I think I thought I would disappear in there.  Despite encouragement from mom to go to her, I refused.  What an idiot, I hope now that I didn’t hurt her feelings, but I probably did, kids are mean. Sorry Sister, I didn’t mean it.

     I purchased a star in the Capricorn constellation, mom’s astrological sign, for Mother’s Day this past year.  I wrote her a poem that was printed on the plaque that depicted the name of the star, “Courageous Patsy”.  I named it courageous, because she is and has been full of courage through all the hurdles of her life, some of those hurdles would have been to high for other people to cross, but not her.  Patsy, because this is what her family called her and I always liked it, because I believed it revealed their fondness for her.

     So in short, she was courageous and special and now she will shine forever from the heavens to watch over me.  It was very thoughtful of Sister Monique to let me know that mom had mentioned the star to her, it meant a lot to me to know that, and it means even more now, that Monique has sent this symbol of my gift. 

      I have to work two more days before I get another day off, I’m looking forward to it, I know, it’s sad after being off for so long, what a loser.  I still feel tired and aloof, I want to be left alone.  I know after bursting into tears at the sight of Monique’s gift that I have many tears to go before I will be relieved, if that day ever comes.  The old adage, “cry me a river” comes into mind.  It sucks to be an orphan.

CHAPTER 13

The tears continue

      I have discarded my journal, I will keep it forever, but have added nothing else.  My days are all the same now, they run together and I lose track of which day it is, there were so many days that I didn’t care what day it was that I have forgot to keep track.  Crying has become a ritual on the long drive home from work, I don’t know what it is about solitude and silence that makes me cry.  I guess I have too much time for my mind to wander and eventually something brings me back to mom.    I’m crushed by thoughts of thinking that I should have called her more, I should have said I love you more and I should have finished my college degree before she passed, so she could see I had accomplished something.   Oh, well, I should have done a lot of things and I can’t fix them now.  Probably even if I had done all those things, I would have found something else I felt I should have done.   I guess it’s a normal emotion to feel we could have done more when it’s too late.  My mother’s brother, also my favorite uncle, has a saying about things we think we should have done….”we can’t live in shoulda, coulda, woulda”, sounds silly, but he’s right.

     My nights are still filled with sleep aids and I have cried on many nights in the dark silence of my room, as I remember how mom once slept in this bed when she stayed with me. She’d tell me how much she loved that room and felt like she had her own “suite” of rooms with a reading room, walk-in closet and her own bathroom attached.  She loved my Egyptian motif throughout the room and liked that I had an interest in ancient Egypt.  So, for me, this room will always be a connection to her, she slept here for only a couple months, I wish it had been longer.

     I’m sure this summer I’ll cry again, when I walk the yard.  I’ll remember her sitting in the swing I bought her so she could be outside.  She’d take her little crossword puzzle from the paper and a book out there and just swing, enjoy being outside and reading.  She was happy out there, sitting alone for hours, when I’d go check on her, she’d say she was fine, she liked to just sit there.  I didn’t realize then how much she was bringing to my life, being here with me. 

     I remember thinking I would have her here with me again after the winter, after she felt better from her radiation treatments.  I wanted to wait till spring, so she could be outside and not in the harsh weather of winter.  How could I know then, she wasn’t going to get better after treatments?  I will never have her swinging in my yard again and I won’t need to save the puzzles from my paper, even seeing them makes me cry.  

     I will be reliving everything all over again at her memorial in Pittsburgh, at her family home in Mt. Washington.  I know that wandering the rooms of the house I have visited so many times will be heart wrenching for me and every part of it will be reminiscent of mother.  I always have slept in the room where she slept as a child and I will be doing that again, still, this time, sleep will probably not come easily.

     It isn’t that I think my experience is any different than others throughout history, everyone who has ever lived has had a loved one who has died.  Why should I be any different?  What I do hope is different, is that I have documented what I could of my experience and I hope that the next person who has to go through this, will find some solace in knowing that you are not alone.  It’s hard not to feel like you are alone when it’s happening.  It’s difficult to decide if you are doing the right thing, thinking the right thing or reacting the right way.  I have news, there is no right way, there is only your way.  The way that you chose to deal with something like a loved one with cancer, is the right way, you’ll know what your way is when the time comes.   Don’t feel badly if your way is different than others that will be involved, you are you and your ways of coping will not be the same as a surviving parent or sibling.  It’s okay, it’s human and it’s part of being an individual. Though, as I discovered, different ways of coping within the family, may also eventually cause conflict. It’s okay and you’ll hopefully find yourselves apologizing later.  Don’t forget, you still love each other, accept your differences.

     I am not a psychiatrist, psychologist, therapist, counselor, or psychology student, I am just a daughter who loves her mother.  All I can offer, is that I have lived and continue to live, through the ordeals of the black death, known as cancer.  

     Two months after the death of my mother, my best friend of fifteen years revealed to me that she had a rare form of stomach cancer, called “signet cell”, and was told she had three to six months to live.  She was forty-six years old and a grade school science teacher.  I’ll always remember her saying, “I’m the healthiest sick person I know”.  Sadly, it’s not the “silent killer” for nothing.  She was another brave and courageous soul fighting the devil, whose last suggestion to me was this, “Be the best you can be, so I will see again”.   I’ll never forget her saying that, I keep it written down by my computer, to remind me daily, to “be the best I can be”.   She was forty-six . . . when I think of all the people I know in their forties, including Beverlee and I, that’s still so young.  This disease is definitely not discriminatory, it doesn’t care who you are, how old you are, what good things you’ve done during your life or how healthy the rest of your body may be, it will destroy you and if it has it’s evil way, it will kill you.  

     ………”I clenched her hand tightly, as if to say, I love you mom, you’ll never die, never.  In spite of myself, my mother managed to again teach me a lesson, as she sat quietly in the pew that day.  In lieu of the pain and grief she suffered from her mother’s passing, my own great mother, Patsy, portrayed a mature, accepting, dignified lady, who was silently devastated by her mother’s departure.  She understands it was God’s will and she will no longer suffer.  God, give me strength, when I sit where she did that day.”    This strength never came to me,  I continue to have periods of crying years after her death.  There was only ONE Courageous Patsy.

     CALL YOUR MOTHER and be true to your friends, you never know when either, or both, will be gone.  “Our father who art in heaven . . .”

This is the end of my story, though I will miss her,  love her and cry about this loss forever in my heart.  I thank all those who shared my experience and,  I have hope,  sympathy  and understanding for all those who will go through this type of personal tragedy in their lives, good luck and may your strength come to you.  Remember,  you are not alone.

UNTIL WE MEET AGAIN….                   

 patsy