Today would be the anniversary of my mother’s birthday, but she’s been dead for some time now. Alzheimer’s killed her. She lost the ability to swallow, so she couldn’t eat or drink. Since she had left an advance health care directive that no feeding tubes would be used, essentially she starved to death. She was only 66.
Mom was diagnosed with the disease when she was 52. She’d been having troubles for a good while before that, so hers was a very early onset. You lose people twice when they have Alzheimer’s: once when their mind goes and they are no longer themselves, and then when the body finally dies.
Early onset Alzheimer’s may be genetic, and even dominant, according to a number of studies, such as this one. There are lots more studies, but many are very technical and not worthwhile to link here. Essentially, some forms of early Alzheimer’s are inherited about 25% of the time. So my siblings and I have a big shadow lurking: which one of the four of us will be the one that develops the disease?
I know that isn’t statistically true. Just because there are four of us, and if the rate of inheritance is 25% doesn’t mean one of us will develop the disease. And we also don’t know if that is the type of Alzheimer’s mom had. Nonetheless, everytime I misplace my car keys, I wonder if the signs are beginning, especially since I am older than my mother was at her diagnosis.
Intellectually I know that misplacing car keys, or forgetting my cell phone number (I never call myself!), is not a sign of Alzheimer’s. It may be a sign of getting older, of having too much on my mind, or any number of things. I didn’t forget what the car keys were for, which is really what Alzheimer’s is about. Mom forgot what keys were, not just where she left them.
I think there are a several ways of dealing with this fear. I could tamp it down forcefully every time the thought crosses my mind, and do nothing. I could watch continually for signs that I’m losing it, and spend lots of time sorting out my affairs, planning for my eventual mental demise. But not believing in a heavenly hereafter has made this fear much easier to deal with, at least to me.
I live each day to its fullest. This life is all I’m going to get, and if it is cut short by the loss of my mental faculties, or the loss of my entire body and consciousness, the issue is the same. We only have the life we have, no matter how it ends (or how many times, which as I said at the onset, it seems like 2 ends with Alzheimer’s). I work at a job I love, one that gives me great satisfaction. I spend time with people and family I like (and avoid those I don’t). I don’t spend much money accumulating things, but rather accumulating experiences like travel, education, entertainment, doing things for my children and grandchildren.
You know the old joke, something about when I die I don’t want people to look at my corpse commenting on how good it looks, but rather, that I arrive at the funeral home all used up. That’s my goal, to use every minute and every cell I can before I take my last breath. I think I have my mom to thank for that.
Devi: Thanks for sharing. It's amazing and distressing the number of times I've heard middle age adults talk about the deteriorating condition of their parents to the point that they can no longer take care of themselves. It seems like I hear another incident every few weeks. They (and we) are all on life's big slow moving conveyor belt. And even if it is slow-moving, it's always moving in the same direction and none of us will be here in 150 years to talk about it.
So what choice do any of us have anyway, other than live good and decent lives? Not that anything I have had to say would lessen the pain of losing a parent (or a parent's mind) well prior to old age.