It is difficult, and perhaps pointless, to attempt to answer the question, “What is the worst thing about Alzheimer’s?” But I think the saddest part–and one which many people don’t even consider–is how aware a person can be of their failing abilities. This awareness does vary greatly from one person with Alzheimer’s to another, but I think all are more aware, to one degree or another, than most people suspect. To my thinking, if you don’t realize you’ve lost something, that will soften the blow of the loss. On the other hand, if you remember very well how you used to be able to walk, use the toilet, and feed yourself–that memory makes the loss of such things all the more painful.
For me, I can bear Grandpa’s increasing loss of his abilities well enough. It is life, and you live with it. But it is when he, on rare occasions, articulates an understanding of what he has lost, and how miserable that makes him, that I feel very sad.
A few days ago I was sitting in the living room with Grandpa, practicing my guitar playing. Grandma was moving about the house doing stuff. Whenever Grandpa is aware that someone is doing something, he wants to know what they are doing. So he attempts some form of the question “What are you doing?” or “What is going on?” . . . and often doesn’t understand the answer he gets, much to his frustration. Such was the case this time. Grandpa insistently queried Grandma about what she was going, Grandma gave brief and perhaps somewhat vague answers, and Grandpa said, “What? What did you say?” (It is his understanding of words that is failing, not his actual ability to hear.)
After a bit of confused sputtering Grandpa settled back with a disgusted sigh and said, “I don’t even know why I try. I can’t even remember my own name anymore.”
That may not be (quite) literally true, yet, but the plan statement by Grandpa himself revealed a self-awareness that was very saddening. It is bad enough to not remember your name, and not remember you ever had one, or what one is. It is worse to remember that you had a name, know it is important, and know you once remembered it, and know that you no longer do.
I know it is not the only thing Grandpa realizes he has lost, but it is always a sad to hear him recall his own condition.
In other, unrelated, news, I am of the firm opinion that nutrient drink feels vile. I buy the “plus” version for Grandpa because he needs the extra calories, and maybe because the manufacturer crams more nutrients into the same amount of liquid this contributes to the vile texture. In any case, as Grandpa spills his drink more and more, I am becoming intimately familiar with the sticky slimy, slippery, gooey feeling of nutrient drink. Given how it feels on my hands, I don’t know how anyone can stand to drink the stuff. The texture on my hands is nearly enough to make me gag–I can’t imagine choking it down my throat.
That said, I’m glad Grandpa seems to be of a different opinion. He drinks the stuff happily enough, and with 350 calories per 8 oz. it is probably the one thing keeping him from starving himself to death.