My mother has dementia. I’ve been a mother myself for a good quarter century, so I’m used to trying to help people who can’t express what they want. Or who don’t want what they should. Or who don’t understand what they truly want.
But this is different. In those cases I’d be trying to show respect and love for people who aren’t competent to handle things for themselves. They merit such treatment simply because they’re human persons, and especially entrusted to me. But there’s also an element of pragmatism and concern for efficiency.
When you’re making judgments for a newborn, toddler or teenager, you have in mind that someday they’ll be making them for themselves, and you’re training them for that moment. You’re treating them with suitable respect, in accord with their dignity, but also because you figure it will work better that way, for them and for you.
My mother’s case is different. She won’t be shouldering the task of judging or fending for herself again. All of us who are trying to give her the help she now needs without disregarding her dignity are doing it just because she is who she is. No present or future abilities at all have anything to do with her being deemed worthy of anything.
Efficiency would dictate a different approach: more coercion, less explanation, less attention to anybody as a person. But efficiency is overrated.
So, my children: My mother has dementia. Her mother had dementia. Her father’s mother had dementia. I feel fine so far, but if you run into me one day looking befuddled in your living room, or some nursing home somewhere, and you’re making decisions for me, here are some things I pray you’ll keep in mind:
- I hate ketchup. I love garlic. Until such time as I get so mixed up that I start demanding the one and refusing the other, please act accordingly.
- Although I like Bruce Springsteen, CCR, Otis Redding, Scythian, Jim Croce, blues guitar, and bluegrass (but not the frenetic kind, and just the instrumentals), Brahms, Schubert, and Beethoven’s piano sonatas, please watch me closely for cues about which one I’m in the mood for right now.
- I would like to have some art supplies handy. If I start smearing oil pastels on your face or taking a Sharpie to the curtains, you may of course use your judgment and protect your person and property as you see fit.
- Do what you like with my hair, but I get headaches if it’s up in a bun or back in a ponytail for more than a couple hours. Don’t cut it too short, or I’ll feel like I turned into someone else. Two braids will look silly on me but could be a good way to keep both tangles and headaches at bay.
- Eating will presumably be one of my last remaining pleasures, so please don’t get carried away with the health food. I have hardy peasant genes and a strong stomach. My father used to carry contraband fried dough sprinkled with powdered sugar into the nursing home for my mother. I wouldn’t complain if someone did the same for me, though probably not every day. I don’t want to get so fat that it becomes uncomfortable.
- The more you can manage to get me to Mass and adoration, the better. I need all the grace I can get now, and it’s a safe bet that that’s not going to change. If I wander around or start yelling at people, though, go ahead and get me out of there. God can figure out some way to give me what I need.
- If you can get me to the zoo or the beach or the aquarium or the planetarium, that would be nice.
- When I die, don’t start talking like I was some kind of living saint. You who have lived with me know better, and I want to put the preemptive kibosh on anything that might discourage people from praying (hard!) for my soul. Let your assumption be that I’m rotting away in Purgatory and need all the help I can get.
Signed this 30th day of July, 2019,
while still in my right mind,
as far as I can tell,
Jewish by heritage, Catholic by conviction, Hispanic by marriage, Devra Torres is a master of philosophy turned grand multipara, homeschool headmistress (St. Michael’s Academy for Wayward Torreses), editor, translator and writer. The second half of “If I should end up with dementia” appeared on her weblog “It Could Always Be Worse”. The first half is adapted from her Aleteia article, “In Praise of the Inefficient Care of Persons.”
Photo credit: A nurse holds the hands of a patient suffering from Alzheimer’s disease (Sebastien Bozon/AFP via Getty Images).
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