The Agony of Alzheimer’s; the Pity of Parkinson’s
“I used to have such a good memory”, my mother remarked. “Practically photographic, it was. And now, I have trouble remembering any little thing.” By the time she uttered these words, we knew that her troubles were more than just forgetting ‘any little thing’.
She was in her mid 70’s, and when I asked her to get the aluminum foil while I made dinner during a visit to my childhood home, she gave me a pair of scissors, instead. It was then that I realized that my fears about her condition had been confirmed. And I remembered that, two years before that, when I had made another visit back to St. Louis to help her out after a bout with pneumonia, she greeted my father and me with a blank stare when we picked her up from the hospital. At the time, that blank stare triggered a warning in my head. But I attributed it to the medications she had been taking, or just a general disorientation from the hospital stay. Since then, though, she and my father had made two of their annual ten-day visits to our home in Baltimore for the Thanksgiving holidays, and each time she had brought virtually no clothes with her, other than those she had on her back. Her suitcase was essentially empty, save for a nightgown and a bath robe. My mother was never one to spend a lot of money on clothes, but even with her predilection for thrift, bringing no clothes for a visit of ten days seemed not normal. And it became clear to all of us during those visits that she was neglecting her hygiene.
So my brother and I got in touch with a family service agency in St. Louis, and set up a plan for our parents’ care. (My father was 13 years older than my mother, and he was beginning to get a bit frail). As the years wore on, her mental health and his physical health continued to decline. By the time he passed away at age 94, she was deep into Alzheimer’s Disease. They had had round-the-clock help for years, and she attended an adult day-care program, which actually helped to improve her mental outlook and behavior immensely. Unfortunately, we discovered the day-care program too late to save our cherished family photo album, which she tore to bits while she was just sitting around the house.
When we went back to St. Louis for my father’s funeral, my mother greeted me at the door, saying, “Have you heard the news? Arthur died.” “Do you know who I am, Mom?” I asked. “Yes, you’re Arthur Baron’s daughter.” “And yours, Mom. And yours.” Only a blank stare was her response.
By the time my mother died in 1997, she had been lost to me for a decade and a half.
As the population of the USA ages, and as more and more people are living longer, the percentage of people with Alzheimer’s Disease is growing ever larger. It may seem that the disease is a recent phenomenon. But, in fact, it was identified as a specific syndrome in the early 1900’s. However, it was only in the 1970’s that the Alzheimer’s Association was founded. The purpose was to bring it to the fore of the national consciousness and to raise research monies to fund a cure. Monies have been raised, but no cure has yet been found for its victims. The search goes on.
Parkinson’s Disease is another affliction of the elderly. It is a movement disorder that is chronic and progressive. Although 15% of people with Parkinson’s are diagnosed before the age of 50, the incidence increases with age. It is estimated that around 1,000,000 people in this country suffer from the disease. The cause is unknown, and there is no cure at this time. But there are many treatment options, such as medication and surgery, to help manage the symptoms. Those symptoms include:
tremor of the hands, arms, legs, jaw and face
rigidity or stiffness of the limbs and trunk
slowness of movement
impaired balance and coordination
a mask-like look on the face
Our friend John has all of the above at one time or another, except for the mask-like face. In fact, John is movie-star handsome, and the smile on his face when he greets you lets you know that he is awfully glad to see you. He is also one of the sweetest, kindest, dearest gentlemen we have been privileged to call friend. No one deserves to be a victim of Parkinson’s Disease, but for John to be one of them seems like an especially cruel turn of fate.
His wife, Peg, a treasured friend and totally selfless mate, says that she doesn’t let herself dwell on the unfairness of John’s affliction. She feels sorry for him, of course, but she doesn’t let him see that, and she encourages him to continue to do as much as he physically can for himself. Sometimes she feels it would be easier just to let him sit in his electric chair, read his books and papers, but she knows that is not best for him, and his doctor agrees.
In addition to Peg, his caregiver, John has four children from his first marriage – all adults with children of their own. All four children love their father dearly, but not all four of them are equally able to cope with their father’s disability. In fact, only one of them is totally tuned in, sensitive and helpful. And only one lives in town. Unfortunately, that is not the sensitive, helpful child. And so the care for John falls on Peg’s shoulders. She says that the care of a Parkinson’s Disease patient is a delicate balancing act. You have to balance the dosage of the medications and the hours between the drugs; you have to balance the mental and emotional well being of both yourself and the patient; you have to balance empathy for him with the necessity of pushing him to maintain some semblance of independence; and he, himself, literally has to balance himself physically, lest he fall.
John is obsessed with his disease: with its progression and the coming breakdown of his body and mind; with the progress of research on the causes of Parkinson’s; with the potential for some new miracle drug that will give him some respite from the ravages of the disease. John’s obsession with his Parkinson’s affliction colors every moment of every day.
But spending an evening with him and Peg is the brightest moment of any day. We all laugh and smile and enjoy one another’s company to the max.
And we try not to think of what’s to come.