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Friends United Meeting |
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June 1999
How do I Love Thee?
A Marriage Survives Alzheimer's
By Claude E. Lewis
I was a dentist in Central Point, Oregon, when my wife Joyce was diagnosed as having Alzheimer's Disease in1976.That was more than eleven years before her death. It was my decision to care for her as long as possible myself, which I was able to do, 24 hours a day. Until near the end of her life, I also worked full time, then sold my practice in order to be available to care for her as much as might be required. After selling the practice I continued working, which was possible because I was allowed to take Joyce to work with me and keep her close by, in what we called "Joyce's Room."
During the last few years, Joyce was blind, incontinent, had seizures of varying degrees, could not stand nor walk, could not speak, had difficulty in chewing and swallowing, in short, was completely dependent in every way, physically and mentally, with no discernible cerebration or thought processes whatsoever.
I suppose this is a ridiculous statement, but believe me, this was not the woman I married! Joyce had two college degrees, had been a teacher, and was a successful soprano soloist in religious broadcasting. I had no concept of what was in store for us when 40 years and three days before her death I stood before 500 people and said, "In the presence of God and these witnesses, I take thee, Joyce, to be my wife; promising with Divine assistance to be unto thee a loving and faithful husband as long as we both shall live."
Our ordeal began when, gradually, Joyce became more and more incompetent. She was often confused, did strange things (especially with her checkbook!), quit playing the piano, and one day said, "This may surprise you, but I can hardly read!" Having a history of cancer, I thought surely she must have a brain tumor and should get immediate treatment. A neurologist did a lot of testing but, frankly, told us very little. I picked up an insurance form, "Impression: Alzheimer's Disease" but, of course, I didn't know what that was. Almost no one did then. A psychologist brother-in-law sent me reprints from four neurology textbooks, and from them I learned the awful truth: Blindness, hallucinations, convulsions, personality disorders, loss of memory, eventually the loss of all mental functions, then premature death.
Unless you are involved, these are just harsh words; but if you are involved, they are absolutely devastating. I felt betrayed, frustrated, helpless, confused, frightened, and terribly lonely. I didn't want anyone to know, even my friends! (That shows how little I knew about Alzheimer's Disease.) Worst of all, my desire to share this horrible information with my wife was almost overpowering. I wanted to grieve with her, agonize with her, over this monstrous tragedy. However, I viewed this as a selfish desire which could only cause her unimaginable distress, so we revealed to her only a small part of what lay ahead.
Later, this decision, which we managed to keep, caused me much agony. Too late, I realized I had robbed her of the opportunity to expose and share her emotions and to plan, as many terminal patients do, how to use the time we had left, to the best advantage. Of course, one of the tragedies of Alzheimer's Disease is that in addition to losing his or her mind, the victim knows this is happening. The mental torture must be unbearable. I've wished a thousand times I had told her, when she could still understand, why she could no longer drive the car; why she could see people all around her we couldn't see, and be afraid; why even the junior high age children could dominate her when after all, she's mother, and on and on. I guess that mistake will haunt me forever.
It was a week after we saw the neurologist before I had the courage to answer the question Joyce kept asking. Finally, holding her close in complete darkness, I told her only that she had a brain disease, that it would shorten her life "somewhat," and that was all. She cried softly for a few moments, then said "I'm not afraid of dying, but I hate to think of living with my brain deteriorating!" Then silence; silence on that subject for eleven years. What a shame.
The late Senator Jacob Javitz, who finally lost his valiant struggle against Lou Gehrig's Disease, once said, "Life doesn't stop with the discovery of a terminal illness." Our family had not then heard this statement, but we must have shared that philosophy. So day by day, we looked for ways to keep life moving for us while at the same time making Joyce's downward progression easier for her. These were usually simple things like putting plastic garbage
bags under the sheets, or putting a bean on the right knob of the stove so she would know which one to turn off if the soup boiled over while I was outside. We had several near misses to burning the house down, like the time she tried to carry a flaming skillet full of fried chicken to the door but only made it
half way. Too often our ingenious
methods failed.
One of the scariest parts of Alzheimer's Disease is not knowing what is going on in the victim's mind. We would see some vestige of memory or reasoning ability and in our intense desire for improvement in our patient, latch on to that only to fall flat on our faces and increase the stress on our patient.
We learned to "cope" (the most overworked word in the caregiver's vocabulary) and lived what looked like fairly normal lives. The inevitable role-reversal between children and parents occurred earlier than it normally would. As the kids matured and married, they moved mercifully on into well-deserved better family lives, and my life evolved into a regular pattern of 17 1/2 hours a day work, 7 days a week. I could talk a long time about changes in social relationships, changes in life style, and especially about the frustrations, the tensions and the disappointments that became a way of life as weeks stretched to months and months stretched to years. Changes sneak up on you; you don't realize what's going on.
It's difficult to watch someone you love become completely dependent, physically and mentally. In order to survive you have to suppress your emotions. But we don't want to become callused, or hardened in our emotions, do we? Maybe, after all these years, I don't even know what kind of person I am! But I do know the most painful emotions are suppressed, because once in a while, in an unguarded moment, the curtain is lifted and for just a moment I understand how awesome is the destruction of a human life.
We made adjustments in our lifestyle, our emotions, our activities. Some friends drifted away, and we really understood that. Others were intensely loyal and helped in various ways. I tried hard to be self-sufficient, sometimes too hard, offending even our friends by rejecting their offers of help.
We learned to "cope." I'm beginning to hate that word. But after all, I have to cope! I'm a strong individual, right? My Christian faith demands it! People are always telling me what a great job I'm doing, how they just couldn't do it, etc... Great! Now I have to live up to their expectations.
Who says that "the fabric of one life unravels with another?" Not mine; I'm coping! In high school, did you have to read Invictus? This portion describes me to a "T" (or at least my image of myself!) Rugged, macho, independent; he must have been reading my diary:
In the fell clutch of circumstance
I have not winced nor cried aloud!
Under the bludgeonings of chance
My head is bloody, but unbowed!
Then how come...I walk into the house feeling good because I got the acre of weeds I call a lawn mowed, and it's just barely dark. As I start getting supper, I look at Joyce and there's something different about her expression, a wistfulness, a sadness...and I start to cry. What's happening? Is the fabric of one life unraveling with another? Where is the haughty head-unbowed? I bow my head, and ask for strength.
Finally it's midnight, my bedtime; my 17 1/2 hours of work are done. I maneuver the wheelchair into the bedroom with one hand, holding Joyce with the other so she won't fall out. "Oh crum!" When I washed the sheets, I forgot to make the bed.
I look at Joyce, her eyes half closed, her mouth grotesquely open, saliva drooling out the corners, which are becoming sore. Angrily, I say out loud to Robert Browning, "Is this what you meant?" in "Rabbi Ben Ezra," when you wrote the lines I said to Joyce on her 50th birthday?
"Grow old along with me! The best is yet to be...."
The bed made and Joyce tucked in, I fall into bed. My arm touches hers, so helpless, so dependent. Repentant, my mind turns to Elizabeth Barrett Browning and that beautiful sonnet, "How do I love thee? Let me count the ways...."
She counted the ways in language so beautiful it will live forever. My answer is neither beautiful nor poetic but just as sincere:
I love thee enough to sell my dental practice, which is my life, so I can care for you.
I love thee enough to ignore my hernias and aching back, so long as I can lift you from your bed.
I love thee enough to disappoint my friends (and frankly, myself) who think I should become a State Board member, or perhaps State President, so I can spend my time with you.
How do I love thee?
Enough to willingly soil my hands to make you comfortable. (You didn't hesitate to soil yours, to care for the children you bore me!)
I love thee so much I never want to dilute the memory of that love by loving someone else.
I love thee enough to honor, with all my strength remaining, the vows I said to you some forty years ago, ending with the words, "so long as we both shall live." And then, exactly as Elizabeth Barrett Browning said, "If God choose, I shall but love thee better after death."
I began this "better love" Sunday morning, June 14, 1987, as I stood beside her bed in our own home. I no longer have to cope.
I have fulfilled my covenant, but not without help. I really believe it was as we said, "with Divine assistance," and in spite of my reluctance and protestations, the help of wonderful relatives, friends, church members and neighbors who demonstrated love through their actions.
Not far away is an old couple, their life-long dreams shattered by an unexpected illness. There's a young couple who love Dad, but the time it takes for his care is driving a wedge into their marriage. There's a couple whose teen-age children are spending less and less time at home because Mom and Dad have to spend so much time taking care of Grandpa. They all feel increasingly isolated. Some have health problems, and it's not unusual for the victim to outlive the caregiver. They feel out of control. There are too many demands on their time, their energy, their money. Life is the pits!
If you are one of these, swallow your pride, recognize your limitations, accept help from others. Ask for it if you have to! If not, count your blessings and offer to help those who are. They are out there, and they need our help. Outwardly, they may struggle to be independent and seem hard to reach. Inside they are crying out, and when you understand, and help them, you are giving a part of your life to give them life, and they will love you for it. You, in turn, will experience the fulfillment that comes from obeying the command to "love one another."
Claude Lewis died in 1996, a beloved member of Medford (Oregon) Friends, Northwest Yearly Meeting. This article is drawn from a Quarterly Meeting presentation.
Copyright (c) 1999 Friends United Meeting