Lately every time I begin to read an article on Alzheimer’s, I get a queasy feeling in my gut. The article may offer an obvious suggestion, like how a caregiver should avoid arguing with the caregivee or how a caregiver should avoid making a caregivee anxious by giving too much information; these are behaviors I am already pretty good at except when I’m not. Or the article may suggest that caregivers should create more social experience for caregivees or should make sure caregivees get enough exercise, behaviors I have begun to slack off on. The article may suggest activities in which the caregiver should involve the caregivvee or suggest home improvements the caregiver should make to create a better care environment. The article may even be a kindly reminder that the caregiver should take better care of her own needs.
These articles are clearly well meaning. They are meant to smooth our lives as caregivers and caregivees. I never finish them or follow their lists.
In fact, I kind of hate them.
My hackles rise as soon as I encounter the word should. Or rather when the words should or could or might want to consider appear and I read in the verb SHOULD. As in I, ALICE, SHOULD do whatever is being benignly suggested. Even if the article suggested I should eat an extra piece of chocolate cake, I would probably react this way.
Part of the issue is my own stubborn rebellious nature. The know-it-all in me who bristles at instruction and aphorisms, looks at the organized lists and perky understanding prose and shouts inside, “I know, I know. Stop reminding me.”
But part of the problem is something else because when Ralph was first diagnosed I gobbled up these kinds of articles like, well like chocolate cake.
And I have had the same change in reaction to the never-ending slew of news pieces about Alzheimer’s research. Recently a friend sent me the link to a study about the role of a specific gene linked to Alzheimer’s, but what stood out to me was one clause in one sentence: “…among people with late onset, nonfamilial Alzheimer’s, which accounts for 95 percent of all cases…” I don’t doubt the statistic but it shocked me because Ralph—like most of the people with whom I personally come into contact—is in the leftover 5% (earlier onset and probably familial). I’m sure the study was well conducted and offers hope, but to be honest it didn’t hold my attention, any more than the range of research coming out about Alzheimer’s.
It is a matter of overload. There is the unusual overload of information that we all are suffering through lately as we struggle to sift through the day’s never-ending political and societal news, a chaotic, contradictory onrush that leaves so many of us exhausted and depressed whatever opinions we hold. My general distress over world events does trickle down and make me less patient and less trustful of what I read about dementia. But I also think that having wandered deeper and deeper into the forest of Memoryland, I feel a bit of been-there-done-that about most of the advice offered about the early stages of Alzheimer’s. So maybe I’m experiencing a bit of burnout too.
As for what lies ahead, I have read almost too much advice about issues I know are coming (while I’m deeply moved and driven, like the proverbial moth around the candle, to read every story I find about others coping with the final chapters of Alzheimer’s ), but I realize there are no answers to the questions that keep me up at night (like Will I have the patience to stick this out? Is Ralph’s condition going to deteriorate soon or later? What if my memory is going too?)
I find a bit of escapism is more helpful than advice these days.
So, for those who may have missed it, here is my “advice” for the day: this video of a karaoke car ride with Paul McCartney and James Corden I don’t care where you fall on the Alzheimer’s spectrum as caregiver or caregiver, or on the political spectrum for that matter; you’ll be smiling by the end.
PS. Because my own reaction to advice is not necessarily the best one to have, here are some links to how to some of the advice articles bugged me but that might be helpful to everyone else:healthy life style ideas; stimulating activities to try; disease tips; and a range of subjects from the Alzheimer’s Reading Room;