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Last LightStaying True Through the Darkness of Alzheimer's
By HAROLD E. BURCHETT
NAVPRESSCopyright © 2001 Harold E. Burchett
All right reserved.
Chapter OneEntering the Dark Tunnel
"Well, you see I am not falling apart." -Jane, on hearing the doctor's diagnosis
Rushing to its fearful destination, the dreaded train passed our way. Against our will, my wife and I were hauled aboard and are now being forced to pay for the ride again and again. That is how it is with Alzheimer's.
Married couples who have pledged to stand together until death parts them know that at some time all husbands and wives must enter the dark tunnel and experience that parting. But I never expected the tunnel to be so long and so dark, or the parting to be so continuous! Each new day I go to the cemetery and leave there another part of my wife of nearly fifty years. That is how it seems. Try as I might, I can't stop the process. It goes on and on and on, as it has for ten years.
Slowly It Dawned: "It's Getting Dark!"
More than eight years ago, Jane began having difficulty with our friends, and especially with me. This experience tossed me into a period of soul-searching. Was I troubling our marriage? No, it wasn't that (though I could be difficult at times!). Jane was changing. It seemed as though something was wrong with her mind. Reality was sometimes confused with fears and imagination, andher memory was failing noticeably. This situation left her agitated and at times angry. Not knowing what the developing dementia was doing to her mind, Jane assumed that people around her were fouled up.
For about a year, I joined Jane in thrashing about in this unexplainable turmoil. Slowly, however, the dark truth became clear. My strong and steady life partner was becoming unstable and unpredictable. I finally concluded that it had to be Alzheimer's or some other form of dementia.
Then I Went Underground
Any suggestion that the problem was hers put Jane on the defense (or the offense!). In this early stage, I felt guilty even at the thought of telling our two sons and two daughters that something was wrong with their mother. Furthermore, I was then senior pastor of a very active church in Virginia Beach, Virginia, and we were just getting nicely settled into the ministry. How could I tell the people that their pastor's wife was afflicted with dementia? I'll just sit on the problem until I know what to do, I reasoned.
But how do you hide Alzheimer's? Relentlessly, its grip tightened. Names of friends went first from Jane's memory. Soon even family members could not be recalled by name. As months passed, she lost her ability to read and write, to tell time, to remember the day, month, or year, or even to say where we live.
Alterations in the routines of our lives were coming fast. Jane must not drive anymore. Changes came in household and personal matters. Decisions had to be made. Then came the medical and psychological testing that confirmed my fears.
On a Friday, our neurologist asked to see us, but I was to come alone first. "I wish I could tell you that your wife has a brain tumor," he began. Hearing the diagnosis-"Alzheimer's"-both shook me and relieved me. All worrisome wondering was over, but a numb grief, followed by a giant loneliness, wrapped me in its shadows as I walked to my car. I turned on the ignition and the radio came on. Amazingly, a voice from the radio spoke these very words from 2 Corinthians 12:9: "My grace is sufficient for you, for my power is made perfect in weakness."
Next I brought Jane into the doctor's office, and we sat side by side in front of his desk. As kindly as he could, he informed her. All she said was, "Well, you see I am not falling apart."
Outside, I proposed that we not think or talk but go get an ice cream instead. Then we spent the rest of that Friday and Saturday weeping. Literally our tears pooled together as we held one another. All thoughts of being brave were overwhelmed by our anguish over what we were to endure and what we were losing. Words no longer worked. We just cried with each other before God.
Then we began to function. The family was told everything. But what about the church? Jane decided to tell the congregation herself, publicly. I encouraged her. By now Sunday was upon us, and I chose to speak on Psalm 84, using the simple theme of trusting in God. I think God helped me through it. Then I added these words, "Jane and I soon will have been married forty-five years. As many of you know, she has been undergoing medical tests. She is here to tell you personally of the results, because what we heard from the doctor was heavy, very heavy indeed."
Standing at the pulpit, Jane opened with a simple poem she had selected bearing the theme "He holds my hand." Her next words brought many audible gasps and sobs from our dear church friends.
A little more than forty hours ago, Harold and I sat in the doctor's office to get the report on all the tests. Already we have told our four children. Now I want you to know. The doctors say I have the beginning of Alzheimer's disease. We need your prayers as we prepare for difficult days. I love you all. Thank you.
The outpouring of hugs and tearful words of encouragement immediately and forever erased any doubt about going public so early. Now we could set ourselves to figure out how to cope. Shadows were already gathering at a fearful rate.
Staggering but Still Standing
The next months became a blur of mixed staggering and standing. Having never done much in the way of household duties and still less of serious caregiving, I staggered from one day to the next as these responsibilities claimed an ever-increasing amount of my time. Much practical assistance from the church, including three hot meals a week delivered to our table, enabled me to continue active ministry for four more years. But there was a heavy price.
Without warning or preparation, I was being ushered into new experiences, such as choosing my wife's clothing for each day and, eventually, having to dress her. As time went on, bathing, as well as dental and toilet care, then became my responsibilities. Often these tasks were made excruciatingly tedious by Jane's stubborn refusal to cooperate. "What do you know about these things?" she would demand, to which I would respond, "But you can't go out like that; you haven't finished dressing!" or "No, you can't wear that in the bath!"
How does one go about brushing another's teeth, especially when that one adamantly says no? Someone should write a book on how to do that task, being sure to include a few lines on how to get the dentures out and then back in when the "victim" insists that she has no such thing as a "tenure" or a "pate of teef" in her mouth.
Meaningful communication becomes increasingly difficult as a loved one hears you say what you did not say and forgets what she has just said. For example, "Harold, please come and sit here; listen, it's important."
"Okay, what is it?"
"Uh, well, you know, don't you? I forget."
"That's okay. We'll think of it later."
Often "hot" meant "cold," and "strong" indicated "long" or "big" or "heavy." Even her "no, no" often meant "okay." The names of colors were forgotten or interchanged. I came to see that the loss of memory was invading every dimension of life. Unrelentingly, this specter reached especially into areas of relationship, devouring everything.
Earlier, while she was still able to schedule medical appointments for herself, considerable difficulties arose from her unexpected cancellations, confusion of dates, and suspicions of those in charge of her treatment. Once a concern turned to worry, paranoia was sure to follow.
I felt I had to make a daily, hour-by-hour effort to hold open the closing door of Jane's memory bank, but I continued to lose the battle. At this writing, the past is almost erased. Now the eraser swipes out the past five minutes, or even closer. A special restaurant meal is forgotten before we arrive home: "I'm hungry; could we get something to eat?" is the regular theme of our return trip. (Before this book was finished, Jane's memory span could not support even a brief sentence; after uttering several words, she no longer could recall what she started out to say. Now much of the time she gives out a stream of disconnected, meaningless words and phrases, or only sounds.)
Which Way Is Up-Does Anybody Know?
Mixed in the swirl of confusing developments were my own years of training and experience in teaching and counseling others. Home now provided a humbling contrast. I no longer sat in calm charge of everything. Instead, I longed for an 800 number to some customer service where I might appeal, "Anybody there know which way is up in my latest crisis?" Being locked in all these experiences with Alzheimer's trimmed me down-from feeling "professional" to "puny."
Utter devastation. Often I was like a lonely survivor of an intense bombing raid climbing out from a crater, asking, "What hit me?" Even this question I had to amend to, "What's going to hit me next?" because inevitably I could hear the "bombers" returning for another round.
Precisely right there was the big test, that of getting up again from the overwhelmingness to face yet more absolute impossibilities. Of not abandoning hope, though I knew the situation would only worsen and could never improve. Concerning his great burden as a gospel herald, the apostle Paul once asked, "And who is equal to such a task?" Then he answered his own question, "Our competence comes from God" (2 Corinthians 2:16; 3:5).
To give the reader an idea of what Jane's disease presents, I list here a sampling of experiences regularly faced in the years before the final phase, which brings a more complete loss of intelligent speech and of physical mobility.
Unable to get her own cup of tea, even with help. Carrying about the house frozen food from the refrigerator. Endless questions, repeated and re-repeated: "How old am I?" "What time is it?" "What day is this?" "Where do we live?" "Is this our home?" "Where are you?" Often said when I'm within sight, if not reach: "Are you still here?" Spoken with anxiety: "Is everything all right?" "Am I doing something wrong?" (This last question pains me, and I keep trying to release her from carrying such concern.)
Clutter collecting and clutter carrying. This habit has continued into the disease's more advanced form, though not as intensely as at first. Both hands and arms are loaded with stuffed animals, clothing, shoes, paper towels and napkins, postcards, photos, personal mail new or old, colorful scraps of paper or cloth or plastic, clothespins, bobby pins, curlers, magazines, dish towels, placemats, much of which she dutifully carries throughout the day. Having to unload her arms for meals, for each trip to the bathroom, for going anyplace outside, or when dressing and undressing is no small challenge. Every night before retiring, she carefully arranges her belongings on the bed-up to twenty articles-all in a definite pattern. I have learned that if I don't protest this inconvenience but rather show respect for these things she values, then she will allow me to stack them nearby, until she begins another day carrying about what I have not in the meanwhile hidden or smuggled out to the trash barrel.
Eating the dog's food.
Problems with clothing, such as wearing a woolen sweater in sweltering heat, climbing into bed fully clothed and resisting any pressure to change, or making an appearance before guests or even in public not fully clothed.
Losing things regularly. This problem sets up some unusual search expeditions, if she helps. "Now, what is it we are looking for?" Followed by, "Is this it?" as she produces a wide assortment of unrelated items.
Accomplishing anything out of the house such as shopping or dining-any activity that involves the unsuspecting public provides endless challenges, humor, and embarrassment.
With a strong finality it dawned on me that many precious experiences would never again be part of our lives. Vacations. Even a day off. A meal prepared and served by Jane. Or any further use of our dinnerware, at least in a proper manner. Holding a garage sale brought a peculiar sadness-as if I were a grieving widower breaking up the home.
In the dark tunnel, Alzheimer's strong arm begins immediately to destroy every vestige of hope and sanity if self-pity comes along for the ride. My way of coping is to pray and refocus on Jane's need. Often I have looked into her anxious eyes and promised as I did at the wedding altar (this time with tears and many years of growing up), "Jane, you are the dearest on earth to me, and with God helping me, I will never, ever leave or fail you."
Excerpted from Last Light by HAROLD E. BURCHETT Copyright © 2001 by Harold E. Burchett. Excerpted by permission.
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