THE ALZHEIMER’S LETTER
June 8, 2012 — There are times when I look back on Ken’s diagnosis and wonder if he went into immediate denial or if he just didn’t understand the full ramifications of Alzheimer’s.
I did write about Crohn’s a while back in “Okay, Give Me My Shot,” loosely defining it because it has been a major health issue with Ken for decades. Among the indicators of the disease is pain. To eliminate the pain and the accompanying symptoms of Crohn’s required an extreme change in diet. High protein, low residue: meat, potatoes and white bread. “That’s all,” the doctor said.
At first Ken was willing and cooperative, but he was always hungry and longed to eat what we, as a family, were eating. Following a good effort to obey doctor’s orders and the strict regimen, I noticed he often helped himself to a bit of cottage cheese saying, “This won’t hurt, will it?” Then some cooked vegetables, and soon a smidgeon of salad, a few bites of corn on the cob or meatloaf with onions, and within a matter of time he had moved completely away from the bland diet. Furthermore, he was feeling okay.
Crohn’s never goes away. Wherever the disease is present in the digestive system food becomes an irritant. The diseased area was described to us as similar to a rope burn; sensitive to the touch and when food brushed by the affected area the “walls” pulled back causing the partially digested food to shoot into the next section. Yet, even with Ken’s return to “normal” eating he was able to “manage” this disease for a very long time before surgery required removal of a bad section of intestine in his mid-60s. Perhaps it was mind over matter, his positive attitude, good living and lots of exercise. However, mind power over the body is one thing, but it’s something else again to have mind power over a diseased mind especially when the mind forgets what it’s doing.
SHOOT THE MESSENGER
Seeing symptoms of AD as early as the late 90s I was still devastated by the diagnosis. “Your husband has Alzheimer’s,” stated the neurologist. He was so detached – so seemingly unconcerned. I was stunned by his casualness, but then I don’t know what I expected him to say – or how. Nevertheless, it was a prime example of wanting to shoot the messenger. We started Ken on the Aricept and lived life as we always had making adjustments as the disease silently progressed. With each slip down the slope I said to myself, “It’s okay, together we can do this.” I was also amazed at how well Ken was taking this terrible news. He had always said that he didn’t want to end up being like his mom and dad. Perhaps his plan of defense was to just be positive
My husband was a very generous man donating to many worthy causes. I often thought he was, perhaps, too generous. We know charities sell the names of donors to other charities, and it’s understandable because it is another form of funding for them. However, our list of good causes grew and grew as Ken expanded his donations and continued to read every lengthy request letter responding accordingly. We had been donating to some Alzheimer’s researchers, but our mail box began to bulge with more and more letters coming to us from every direction.
One afternoon as he had been perusing the mail he came into where I was working and handed me a letter. His face was as serious as I had ever seen, and then he asked, “Is this what I have?” I took his letter and read it from beginning to end. It was thorough and left no stone unturned about the disease beginning with Dr. Alzherimer’s first brain autopsy followed by his first paper about the strange, unusual findings of the autopsy published in his 1906 research paper.
The letter continued listing each deteriorating step, each section of the brain that would be damaged and then let the reader know there was no cure, no future and no hope; adding that a victim could live with AD’s destruction for up to 20 years or more in various stages of debilitating cognitive and physical loss. For a plea letter it was excellent, but for someone stricken with the disease it was a bitter pill to swallow. I suppose I was like the neurologist; in all honesty what could I say to his question other than, “Yes.”
INTO THE FOG
We didn’t talk about it ever again. Did he remember the clinical description of what he had or was AD a blessing which allowed him to forget the horror that lay in wait for him. Within a few months he misplaced his checkbook and I said I would pay the bills and make donations with mine. He handed me the stack of envelopes and never looked back. An easy battle won is a battle never fought. Instead we just continued living our normal life with him slipping away. My husband never seemed to notice his advancing memory loss, changes in his personality, mood swings, confusion, paranoia, fear and anger. Nor did he realize he was not remembering me, his children or anyone else.
After all of these years Ken is now drifting into another place – going down — but in a slow-moving elevator. His interests are nil. There is little activity or conversation, although it’s encouraged, but he is open for company. He beams with a radiant smile for his young and beautiful granddaughter, Liz, who is staying with us. She chats with him and he does respond with unattached words and rambling sentences. I am not as tall as Liz, nor so beautiful, but I can’t help wonder if in his confused mind he might see me in her, igniting a flicker of memory of who the two of us were in a different time and place: our youth which was a very long time ago.