Alzheimer’s disease is harder on the caretaker

I find such help from Kris’s blog Dealing with Alzheimer’s, because she can describe so clearly what it’s like to have it, beginning in her 40s. After three years of being turned down, Social Security finally granted her disability benefits. When she first began her blog in 2004, she was still working full-time, but now she spends time as a member of the Early Stage Advisory Group and makes handmade cards, and does other things that a wife and mother (and sports fan) like to do.

Kris says:

I cannot explain to someone when this is happening to me. Like for example, when I find that I can’t make dinner — at the time I can’t tell my husband why I can’t — I just tell him I can’t do it and he does it.

On my “foggy days” nothing seems to really be in focus. It is like I am a step behind things. I don’t think clearly…….not enough to really throw me off, but enough to know that I am not myself.

This disease is so much harder on the caretaker and I always feel guilty about that. It’s hard for us to explain what is going on and you’re supposed to know — it isn’t always that easy, is it!!!

My 95-year-old grandmother would often say, “Children, I’m just blank.” She said it without any visible strong emotion, and I would always reassure her that it was all right to be blank, as far as I was concerned. But I don’t think it was all right as far as she was concerned.

Still, I forget how important it is not to probe and add new confusions and distractions. With my grandmother, I tried to keep things in order, but I made a point not to do it at my grandmother’s expense. If something bothered me but didn’t bother her, why then, it needed to stop bothering me. Incontinence was one exception, of course. She may not have felt uncomfortable, but she would be healthier if she stayed clean.

One-tenth of those with Alzheimer’s disease – more than half a million in the United States alone – were diagnosed before age 60. Mary at the Alzheimer’s Awareness Source says she has had five loved ones with early onset. Early onset Alzheimer’s must be worse, because people can’t blame their confusion on their age. They still feel young, or at least middle aged – most commonly in their 50’s. I just saw a TV ad that proclaimed, “50 is the new 30.” But when you have Alzheimer’s disease, 50 is the new 80. I will be 50 next year.