Recently, another friend got in touch because she heard of Mom’s diagnosis. She was telling me that a friend of her Mother’s recently died with Alzheimer’s, but that no one really knew what was going on until the woman was too lost within herself to visit effectively.
When my Aunt Jane was diagnosed, I didn’t stay away on purpose, at least not at first. Her disease progressed rapidly, though, and she was dead three and half years after a diagnosis of frontal lobe dementia. My Dad kept me abreast of her decline and I realized fairly early on that the chances that she wouldn’t recognize me were pretty high and that wasn’t a reality I was prepared for. Not visiting her was a shitty thing to do, to her and myself and, especially, her family. But as we’ve learned, I don’t always make the right decisions, more frequently the selfish ones.
I think I’m learning, though, that dementia and, especially, Alzheimer’s (the word seeming to make all things worse) make selfish normal. People hear of Mom’s diagnosis and call me, not Mom, because it’s easier and they’re afraid of how they might find her. Mom doesn’t want anyone to know because of pride, which is a selfish emotion. So in the end, she is more alone. No one visits, no one offers help, no one brings casseroles.
Slowly, people will, of course, find out. Alzheimer’s is too big a secret to contain. But I suspect by that point, she will be past the need for casseroles and into the need for Mom-sitting. She will need less conversation and more listening, more simple companionship. And that’s a shame. Because now is the time when people could wring out their last memories of her. Now is the time for coffee and shopping, for singing with her at church, for a glass of wine in the afternoon, even if a little guidance is required. Now is the time to say, “Hey, I know your mind isn’t what it used to be, but that’s ok, I’m here and I’ll continue to be.” She won’t remember that for long, not when you’re bringing casseroles to her husband for a little respite care. I just wish that everyone, perhaps Mom especially, could put aside selfish long enough to make room for gratitude and love and friendship and all the good we could be doing now to give us things to hold onto later.