My Future With Dementia

Yesterday, a friend posted on FB a link to a news story about Alzheimer’s disease (which you can see here). The reporter experienced a simulation created to give you an idea of how life is for victims. It was fascinating to watch.

My father died in 2001 after a 21-year battle with Alzheimer’s. His three sisters have all been diagnosed now as well. (His three brothers haven’t shown any symptoms that I’m aware of.) Since there is a genetic component to this, I've known for quite a while that there’s a chance that I may be afflicted one of these days.

I think that should disturb me more than it does. Maybe if I watch more videos like this one, it will. And maybe as I get older (Dad was diagnosed in his mid-50s), it will. But right now, I surprisingly seem to take this in stride.

I've made it clear to my family that I want them to have no hesitations over putting me in a nursing home when it is time. Please do the work to be sure it’s a good nursing home (I may even do some care-shopping myself while I’m capable). And please keep an eye on me and visit me frequently. But don’t think you’re being heroic or loving by keeping me in your house when I reach the point of being dangerously debilitated. Put me where I’m safe and you’re safe, too.

I've also made it clear that I want them to appreciate the humor in the situation whenever they can. Seriously. I remember once visiting my dad in the common room of his care center when a fellow patient wandered into the room. She looked around curiously, and then announced loudly to everyone present, “I gotta pee!” And she dropped her sweatpants and undergarments to her ankles. The four care workers in the room came diving from their various corners, calling in unison, “Noooooo!!!!”

I tried SO hard to stifle my laughter. It was hilarious. Please don’t judge me – if that had been my dad, I would have laughed, too. It was funny, people! If I get to where I’m doing crazy stuff like that, I want my family to feel free to find some enjoyment in it. Life will be hard enough at that point; you gotta see the humor where you can.

The editor of World magazine once wrote about his mother's Alzheimer's experience. She had apparently had a miserable, difficult life and was generally a very unpleasant, miserable person to be around for most of it. Until she got dementia. Then she forgot all the old resentments and hurts -- every day was new and bright. He said her last three years of life were probably her happiest. Sometimes there is a blessing in forgetting.

I don't expect that to be me -- I don't think I have horrible resentments that will bring bliss when they are forgotten. But I have been making a point of trying to change my general mental state. What I have noticed about people as they age (including my parents) is that they don't really change in personality; they just lose their ability (or desire sometimes) to put on the mask that they are expected to wear in polite society. They say what they really think. They act how they really feel. They stop playing the "nice" game, and usually not by choice. 

This being the case, I want to be sure that I'm genuinely nice, that my thoughts and feelings are full of grace and love, so when my filter is gone, I'm not spouting venom to the world that serves to isolate me from the world. My best preparation for old age, I think, is submitting myself wholeheartedly to God changing me from the inside out, so I'm as much like Him as possible. 

Which, really, should be my goal in life anyway, right?