I have written in the past of the levels of pain that are integral to the diagnosis of Alzheimer's Disease. First is the pain suffered by the person with the disease that I have personally discovered is the least of the levels. My wife, with AD, was unaware of her disease. "I want to go home." "You are." "Who are you?" "Your husband of 62 years." She was unaware of most of the indignities that she personally suffered and were felt by her caregivers.
The second, notably greater pain, is that of the caregiver which I endured for over three years. But now this is gratefully resolved by her death.
In the past the caregiver pain was impersonal to me. I had witnessed it innumerable times and read a lot about it, but it didn't strike home until I was awarded that opportunity. It was grim. I am now intrinsically aware of the grievous burden that this task entails. I am so sensitized by the issue that I am suggesting beatification for all of those who have or are dealing with it; similar to my sentiment that I suggest for nurses who are next to godliness.
I have just been made aware that one of my major reference books The 30 Hour Day by Mace and Rabins was just redone as The 36 Hour Day.(1) I have used the prior book many times as a reference for patient's families, but now with a personal introspection I favor the new title 36 Hour Day or maybe even 48 Hour Day since the care of the person with AD is 24/7, no respite. Institutionalization was not an option for us. I would not expose my wife of 62 years to the depersonalization of any institution, no matter what the reputed level of care was. Therefore I stood guard almost constantly until the end.
Now that the curtain has fallen I derive immense personal satisfaction for my devotion to duty. Do I recall promising something on our wedding day, something about "until death do us part."?
But I turn now to the third level of pain that Alzheimer's exhibits. It is more pervasive and intrinsic than the first two. It concerns the grim image that it casts on the entire process of aging for all of us. Alzheimer's is not aging, and aging is not Alzheimer's. Unquestionably the prevalence of AD goes up as we age but it is not causative. A vivid case example is Mme.
Calment, prize-winning oldster, who at 121 had her psychological inventory measured, as she had at 120. She was actually better at 121 than at 120. But the general population unfortunately co-mingles aging and Alzheimer's Disease which is not valid. As a result it colors the whole issue of our later decades in dark hues. I prefer Brownings "best is yet to be" scenario. Many older people default to the unholy prediction that dementia and its indignities awaits them.
We must resist any notion that we all must have it as we enter our later years. Such a negative forecast forbids preventive strategies, most having to do with remaining intellectually and physically involved.
Please don't get Alzheimer's Disease. It hurts everybody. I know.
Reference
1)Mace NL, Rabins PV. The 36 Hour Day 1981. Johns Hopkins Press, Baltimore