Edited by Beverly Bigtree Murphy
When the stars have lost their glitter
And the moon has lost its glow
When earth's sweetness turns to bitter
And the summertime brings snow
When the waves no longer hammer
At the rocks and shores below
When birds no longer sing their songs
And hobble to and fro
When dusk no longer follows dawn
And sea gulls shun the shore
When fables fail to warm the heart
And dreamers dream no more
When lilacs fail to bloom again
And eagles fail to soar
When children's laughter is forever stilled
Will I care for you no more
by John Rapoza for his wife Dorothy
Dear Caregivers,
The dictionary defines the word commitment as follows: "The act or process of consigning, delivering, or entrusting, as for safekeeping; committal."
I recently spent some time with John Rapoza and his wife,Dorothy. Dorothy is in the late stages of Alzheimer's Disease. She still lives at home with John and attends The Homestead Day Care Program in Longmont a few days a week which gives John needed respite. In spite of her advancing Alzheimer's Disease, she still seems to benefit from the interaction with others in her program and through the obvious love and devotion John provides. Her speech is now severely compromised, her language reduced to occasional words sprinkled here and there during the conversations of others. And she chats, but it's more like the sounds of conversation, than actual conversation. The inflections in her voice and the pauses are there where sentences and phrases once lived, but the string of words that make up content is now gone.
I found, during my recent visit, that the three of us were laughing and talking as if Dorothy understood every nuance of our conversation, as if she were participating fully in our conversation. And even though John and I knew she was probably responding more to our body language and intonations than to content, we allowed ourselves the consideration, that perhaps she was understanding more than we might have allowed in another time, another place, before Alzheimer's entered our lives, and before we allowed our suspension of disbelief to flourish more openly.
I was deeply touched by the tender almost poetic, quality with which John related to his wife. The connection was still there between them. We were sitting outside during the visit, when the clouds rolled in, and as happens in Colorado, the temperature dropped and it was time to move Dorothy indoors. Knowing that Dorothy was no longer able to walk without help I wondered what I could do to help, but before I could ask, John stood up, kissed his Dorothy on the cheek and announced... "Well my darling, it's time for the Wedding March." And as soon as he began to hum the tune, reaching for Dorothy's hands in order to help her stand, she broke into a wonderful smile. She began to laugh and her body movement telegraphed something that could only be described as flirtatious. For a moment, my imagination transported her back to when she was a young bride. And as John gracefully moved her out of her chair, over the threshold of their front door, and eased her into her wheelchair, it was as if she was indeed his bride.
Committment is not so cold as the dictionary definition quoted above. Committment is about giving and receiving love, and the phenomena is that both the giving and receiving happen simultaneously. This issue of Care Connections is about what the giving and receiving of love can do to help ease the loss of someone you care about.
I love the holidays. It doesn't seem to matter where I am in the world or if I'm alone or sick or well. It must be that the thought of these days comes with the renewed feeling that love and peace really are possible. It's an amazing thing that every year for nearly fifty years now, the feeling comes again.
A while back, I had to list the hospitals I had been in. I had never done that before. I didn't want to be reminded of the life I felt I had lost. I came up with twenty two hospitals for extended stays since 1964, and twelve for emergency care. Quite a few of those times were over the holidays, and I remember fragments of them: cut-outs of menorah candles and Jesus in a manger, Santa Clauses and snowmen taped to the wall in the day room, pressed turkey breast and watery potatoes on a plate, and patients who sat subdued, their eyes tearful from longing to go home. And silence... There was always silence everywhere...
Even so, there comes a time towards the summer's end when the days grow shorter and that soft, suffused light comes into the air, when I think, "The holidays will be here soon!" The holidays make me feel that no matter what, there is love in the world and I can be a part of it. I know beyond a doubt, deep down in my heart, that everyone, every living thing can find the love they want. The sureness of this message and the nearness of it is so exciting that I want to shout, "The holidays are Coming! Free love! Free love for everyone!" With my illness, I never know how long I'm going to be all right. The medication is not sure-proof. Sometimes my brain chemistry goes awry no matter what I do, or take, and I end up in a downward spiral that sends me back to the hospital. It's a long, hard road that may take a year or more to recover from. But I have been lucky, for many do not survive to get another chance.
I have a kind of schizophrenia. Along with major depression and manic-depression, schizophrenia is a neuro-transmitter disorder that lasts a life-time. It is often fatal. Even with medication, which in the past two years has become more effective, the wear and tear of the illness is so severe that it may render life unsurvivable.
I look at myself today, thirty-three years after my first hospitalization. I see how I have come step, by step, day, after day, and how a little at a time I have come to be more accepting of my life. Somewhere along the line, I think perhaps quite recently, I stopped seeing my life as failed and started seeing it as an incredible experience of the grace of God.
Today, I see the snow falling, and my little dog coming up to be loved. I see the orange-breasted finches feathering out to keep warm, and I hear a spritely harpsichord on the radio. I don't know about tomorrow, and yesterday is just yesterday. But today I have. I can be what I can be just for today. And do you know what I realize today? Today and I understand one another. We're both here just for now. It is not judging me and I am not judging it; we just happen to be in the same place at the same time. We are silently abiding, the day and I, and we are quite companionable after all.
Best of all, there's a present today has for me. It's a promise it has to share, that if I but come to it, and look and wait a while, it will give me something to love. It says that if I just notice, it will give me light on the slope of a hill, or the squeeze of my mother's hand, or the scent of the fire burning to help me remember that I am not alone and the thing I am not alone from is love.
All through the years, the present of the holidays has been given again and again. My heart sees it every time and jumps for joy, "Here it is, in here, it's me, it's love."
Rachel Corday has a Ph.D. in Expressive Arts Therapy. She heads the Corday Actor's Studio in Boulder, acted in, wrote, directed, and produced a film titled..."Losing the Thread, the Experience of Psychosis. Other published work includes "Essays on Major Mental Illness". She is a local teacher, writer, and poet.
Much has been written about caregivers for the elderly. There are equally numerous conferences and services designed for these same caregivers. They deal with coping, stress, and the importance of caring for oneself for if the caregiver neglects oneself and becomes ill, then what becomes of their elderly charge? It is not an easy situation, and the solution is not easy either. As one who has been a caregiver for two elderly parents, I have walked it and have earned the right to talk it. I am sixty-two years old and my mother died some nine days before her ninety-fourth birthday. My father passed away exactly two weeks before his ninety-sixth birthday.
There are a number of things about caregiver that should be addressed in depth. One of these is the commitment factor. I cared for my parents out of a deep seated commitment, even though I was single, with a full time teaching job. For years I worked at my job, and spent week-ends cooking, cleaning, bathing and all the other tasks needed to keep my parents in their home. All my summer vacations were spent being their caregiver. When I got tired and weary, all I had to do was to think of the alternatives to their care, and I perked up and forged ahead.
For several years prior to my mother's death, she spent most of the time in bed with severe arthritic pain. She could not feed herself and could no longer walk. Some nights she would call out and there would be no sleep for anyone. It took a lot of commitment on my part to think positively and hope for a better day tomorrow. Sometimes it was several days before that little better day appeared. Many people have told me I shouldn't be giving up my life for my parents, but their care and dignity was so important to me I just couldn't let go. I had made a choice and a commitment. One of my lowest points came when my father fell and fractured his pelvis. Because of his size, we could not lift or move him. We had to put him in a nursing home where he died some five months later. Financially, his stay in the nursing home depleted my parent's savings, and the care he got was not the care he would have gotten in his own home. That was absolutely the most stressful and depressing time for me in all the years I cared for my parents. After my father's death, I prayed even more than usual that when my mother's time came she could go peacefully, in her home, receiving the sacraments of her faith, and with me there. I called this prayer "The Gift," and I did receive "The Gift."
I have often sorrowed over good people who care for elderly parents or others in a family because they seem to have no choice. The job has fallen to them because they are the ones around. Many are filled with guilt because they wish they didn't have to be the caregiver and the decision maker. So they struggle with so many emotions while so much vital and needed energy is literally used up. If one does not have the commitment and the pervading attitude that accompanies it, the situation can be bad for all those concerned.
Now I have time to do many things I did not have time to do before. I still find it hard not to operate on a rigid schedule or put in a good day of work. My real consolation is that I know I did everything I could for my parents, and no thoughts of wishing I had done this or that better are present. I gave them love, care and time. My reward for this commitment manifests itself daily in the peace I feel and in the understanding I have for all caregivers.
Ms. Franch sent the above article to Care Connections in April 1995. She shared that... "caring for my parents was not always easy, but because this was a choice I made there were fewer negative feelings that hampered my efforts."
I also have found that statement to be true. One must learn to embrace the tasks at hand in the care of an elderly parent or disabled spouse, in exactly the same manner we embrace the care of our young children. The need for love and regard is equal for those at opposite ends of the life cycle, and the dignity of both, is truly demonstrated through the eyes of those who care for them.
My husband, Tom, died October 25, 1995. He died in his own bed, surrounded by the things he cared about, with the music he loved playing, and with the people he loved and who loved him near. And although greeting his death was fraught with emotions quite different from those I felt at the birth of my grandchildren, the joy and satisfaction at having been able to participate in Tom's leaving enriched me in ways I have yet to explore fully.
Beverly Bigtree Murphy, editor Care Connections
One day my Mom got in her car, put on her seat belt, and drove to the country club to meet her friends for dinner. She started to step out of the car but couldn't remember how to remove her seat belt. She was trapped in her own car. Another time, she drove to a place she had been many times before. It was a short distance and in a part of town where she had grown up and with which she had been familiar. She got lost that day and couldn't find her way home. My mother never drove again after that incident.
For awhile, Mom hid her forgetfulness well. Then one day I found that she wasn't balancing her checkbook and lots of unpaid bills were stuffed in dresser drawers. The house she once kept immaculately now was in disarray with dust all around. She forgot how to change the channel on the television. Her nails, previously kept so well manicured, were now chipped and in need of attention. She forgot appointments, names of common things, how to use a can opener and the microwave. I started doing Mom's accounting. It seemed so strange; after all, it was she who had helped me when I was struggling with mathematics in school. I made sure she had meals, when before it was she who had prepared so many wonderful meals for me as I was growing up.
She lived only an hour away from me, but I constantly feared for her safety so I moved her closer to me into an Assisted Living Home. There, I visited her daily and we went out to lunch every week, a time together that she really looked forward to. Then came the time when she forgot how to use her silverware, and one day she ate her napkin, and we stopped going out to lunch.
Next came incontinence and then the wandering. She was now trying to leave her building at night. I then had to move her into a more secure living arrangement in a long-term-care facility. It was a while before she adjusted to the new place. She walked and walked the halls until she was exhausted. One day, she fell and the broken glass from her eyeglasses imbedded in her face and I had to take her to the hospital to have the glass removed. She stopped walking after the accident. When I asked her why, she said simply, "Oh, I don't do that anymore." And that was the end of that skill.
The loses continued, as they do with Alzheimer's Disease. She began to talk about things that made no sense to me. She began to have another reality; her own reality. She would say things like...
"Then we went out, and we were out going, of course, making the course down, down further a little bit. I'd like to just September. Just 77,7, would be a good take for anybody. Because they are good on their things, on the bad things, and they won't get past sometimes. I would just as soon to home as to do that."
And it all seemed to make sense to her. I realized my mother's reality was now different from mine. But one thing is for sure -- she is positive that her's is real. So, I relate to her in her reality as best I can, and we seem to have a wonderful time together, "in her reality." I see that she's not scared any more and that's an immense relief for me. I've heard that life gets better with an Alzheimer's loved one as the illness progresses, and in a way it has. The greatest gift is that I see we are getting the love back.
I love my mother for who she was when she was taking care of me as a child. I love my mother for who she was when she was loving my children, her grandchildren, when they were babies. I love my mother for who she is today. She is happy again, and sweet, and in a very childlike way, open to love and affection. A new reality, but still the same Mother.
Karen told me she had tape recorded her mother's conversations in order to be accurate about the style of her speech for our readers. She found as she listened to the tape that her mother's conversation had a familiar ring to it even though the words didn't connect properly. It was still her style of speaking with inflections and pauses and phrases tossed in that were so recognizable that she heard herself responding to the essence of her mother's meaning instead of the words spoken. And in many ways it was as valid a conversation as any she had shared with her mother in earlier years. Many of us caregivers, who go through this stage with an Alzheimer's loved one, echo this awareness. And many of us, like Karen, see the charm and the return to love we feel by being able to enter their reality, instead of dwelling on the loss of yet another skill.
1. Adjust Expectations.
2. Understand the needs of the person.
3. Suggest gift ideas to others.
4. Don't neglect yourself.
Christopher is a senior at the University of Colorado, a Certified Massage Therapist, and is currently in the process of applying to medical school.
I spent the first twenty years of my life looking up to my Grandfather Stanley. He was a strong man. He made me feel safe no matter where I was. Nothing was too big for him to handle, to protect me from. He did what was best for me and never let anything or anyone take advantage of me. He was my role model. In my first college year, I still thought he was invincible, long after I had given up on Santa Claus and the tooth fairy.
I spent every summer with him and he taught me right from wrong. Taught me manners, and respect. I shared my deepest feelings with him and looked to him for guidance.
Slowly at first, things did not seem right. Stanley would do things you wouldn't expect. He'd forget things and act absent mindedly. Everyone said it was just old age and nothing to worry about. Those that were closest couldn't see the early changes, but I hadn't seen my grandfather in about six months, and when I did, I noticed the change in him. Alzheimer's took its toll quickly, not lasting years but only months.
My first feelings were of sadness and fear. The man that had protected me since I was born, who had taught me about life, could no longer protect himself. He needed my protection and my guidance. Alzheimer's left a continuous look of fear in his eyes. I wanted to comfort him, tell him it was O.K., but nothing we said or tried put him at ease. My champion was slowly and in a most disturbing way being destroyed and there was nothing I could do about it.
On television and in the papers, all I had seen of Alzheimer's was the very early stages; the forgetting of a meeting, or of where the car keys were. I heard the jokes in school when someone forgot something, "Hey you got Alzheimer's or something?" No one told me about the episodes of uncharacteristic hitting and violence. Nothing prepared me to deal with my grandfather wanting to go home when he already was. Walking in New York City, my grandfather taught me who not to mess with and when to keep my mouth shut. Now, he was not keeping his mouth shut and he was confronting the very people he had taught me to watch my step with. Many times, I feared that we were not going to make it home. My grandfather also had panic attacks, which I did not know how to handle. It was hard trying to reason with someone living in another world.
A lot of innocence I still felt for life was taken by watching the cruelty with which the disease affected my grandfather and his family, as we watched the looks of fear and despair in my grandfather's eyes, the look on his face when he stumbled or fell. And, our wondering if he knew what was happening to him, wondering if he was trying to communicate but couldn't, wondering what his eyes and ears were telling him. All of a sudden, life changes for the caregiver forever. This is one heck of a traumatic experience for anyone involved to go through.
After Stanley died, I felt guilty. I wished I had spent more time with him. I wished I had not tried to get my brother or sister to watch him when I did not feel like it. This man selflessly put up with me for over twenty years and I wished that I had given my best.
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But, he did give his best. All three of my children gave their time, their regard, their love and devotion to their grandfather, who was also my father. I was proud of how unselfishly they gave of themselves and how they belied the perception that exists about teenagers being so self-absorbed that they can't see the realities life imposes on families. I have more faith in this new generation, having watched my own children rise to the occasion of meeting the needs of my father when he needed them. Christopher will graduate as a medical doctor in May 2004.
Irene Trojanovich, Chair, Community Elder Care Coalition of Boulder County
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Here is a recipe for Life:
Take a determined middle-aged woman. Have her find the love of her life in a New York City church. Add this late love, Tom Murphy, a vital and charming man, sexy too, who has provided his engineering skills all over the world. Pour in irony, humor, joy. Stir with music and dance.
And what do you get? he used to be Somebody, a brave chronicle of a couple's struggles to keep Alzheimer's disease at bay long enough to have the sort of deep-rooted commitment about which most people can only dream.
Far from being morbid about it, Beverly Bigtree Murphy seldom mentions the dreaded word Alzheimer's. But the disease is there, very often lurking in the shadows, then out in the open stalking Tom as he makes his way down restaurant aisles, to bathrooms, to doctors' offices. Ordinary activities become overwhelming obstacles.
New York City finally becomes too much with which to cope. So the couple moves to a smaller American city, only to find more financial troubles, family problems and uncaring associations. (Doctors and lawyers do not come off very well in this book.)
A more settled life happens when Beverly and Tom move to Boulder, Co., with a more congenial atmosphere.
The most poignant sentence comes late in the book, when Beverly writes that "their" story has now become "mine" alone. The anguish is real. As are the more pronounced love and joy throughout he used to be Somebody.
Tom Murphy died on October 25, 1995.
reviewed by Bill McReynolds
Bill McReynolds is Retired Professor of Journalism C.U., Consultant Care Connections Newsletter
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