An Alzheimer’s Association newsletter item this morning got my hackles up: “Caring for a person with Alzheimer’s means making adjustments.”
But then, we were having a bit of a grumpy morning anyway — my happy sunny boy – my 79-year-old going on 5 — seems to have disappeared under a cloud of ouches and suspicions.
The piece talked about research on and care for the caregiver and ended with the usual: “…Caregivers are often the casualties, the hidden victims, of Alzheimer’s disease. “No one sees the sacrifices they make,” she said. It is vital for caregivers to take good care of themselves, she added, by exercising, eating and sleeping properly, and getting respite care when needed.”
That’s the kind of sentence that used to make me rage, “WTF? How?”
Things have been slightly better lately but it doesn’t change the fact that my entire life – the last of my working years and the vaste majority of my energy – is being sacrificed on the alter of someone else’s disease. There is no alternative, and yes, I love the guy, BUT I don’t like it one bit.
It’s true – fate is like that – bad things happen to people all the time, but you know, sometimes I think those who suffer the devastating consequences of a relatively quick disease or accidental death are luckier …they do not have an unending, unceasing theft of their lives – they can grieve and slowly move on. I see it all the time among my widowed friends – they can make a lunch date – they can go on trips, they can take a course, they can walk around their house without someone asking insane questions all the time…..while my soul is being sucked slowly right out. By the time I am free of this 36-hour-day, I fear I will have no will or joy left to explore the rest of the world.
Fear of the future I think is the biggest debilitating problem in dealing with this disease. The gap between diagnosis and eventual death is so vague and varied we are all left spinning in the wind of fear.
But then the caregivers weighed in on the article, and I was somewhat comforted to find that the vast majority of them had the same reaction as I did. As in, what a useless bit of advice!
But one person’s words did offer some comfort.
“There are NO FAILURES when working with an AD person. You just do your best and endure.”