High school graduation, 1950
My mother was diagnosed with Lewy Body Dementia in the fall of 2012—living at home (with in-home care) for the next two years, then spending the last two years of her life in a care home. This diagnosis was unprecendented in our family—my grandmother had a mind like a steel trap—so there was a lot of shock and awe on my part before the 4 years was over. I realize now that half the people in this town (if not more) have intimate knowledge of dementia and its particular rude surprises: these include both the traumatic emotional aspects of watching your family member disintegrate before your eyes, and negotiating the Kafkaesque "system" that can only be learned and mapped by dealing with each new crisis that comes your way. It's a voyage of horrifying discovery.
Lewy Body dementia differs from Alzheimers in that it involves hallucinations, certain characteristics of which are shared by the people who suffer from it. My mother saw people with cardboard faces and squarish features, wearing suits made of oatmeal or cottage cheese. Those were the adults, and they were larger than human size. The children were different— they would create their own bodies by stealing rungs from a chair to use as their legs, and maybe stealing someone’s sweater to make up their upper torso. They would also apparently steal food, money, and my mother’s house keys, as well as let the cat and dog out the back door when she wasn’t looking. My mother would also see faces coming out of the floor, or grass growing from her hand. She apparently had a three-day tryst with her doctor and his wife; at the care home she slept with "an eight-foot virgin" and regularly had children jumping from her window. To name but a few of the visions she shared with us.
Amazingly, my mother kept her sense of humour until very close to the end. Once, on leaving a musical performance she was watching in the care home where she lived, she shook her head and said to us, 'I had ONE indiscriminate in my life, and he's sitting right beside me!". I knew what she meant—she meant "indiscretion"—and she was referring to the elderly man seated beside her during the performance. When we reached her room, she was still shaking her head about it. "I've had sex ONCE in my life... and he had to be sitting right beside me!" My mother has two children, so my husband David felt it safe to say, "I think you've had sex more than once...". She laughed. It was always sweet relief when she laughed.
It's been 15 months since my mother died, and I think I'm starting to relax. All told it was a 5-year period of repeated stress, trauma, and sorrow. Painful and horrendous as it was, I see now that I was privileged to experience it, and to be able to help my mother. Not that I want to go through it again anytime soon! And not that I welcomed it. But I can't regret it. That would be like regretting life.
At the care home, 2016
And now for something completely different... we have this month's winner of the $100 giclée print from balampman.com! Thank you to everyone who has subscribed to Feed the Monster, but this month the giclée print goes to Samantha Belle Hatfield. All of the other names will remain in the pot for future monthly draws.
Thanks to the course "Creative Work—How to make a productive + sustainable life—and connect with your people" that I'm currently taking at Good, I'm quickly gathering steam to go deep into production mode again. Meanwhile, visit the shop at balampman.com where there is always plenty to peruse!
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