Postby Harriet » Fri Jan 24, 2014 10:56 pm
Twins' Mom, this could have been shorter if I'd had more time!
Apologies to everybody for a rambling post, and for personal experience that is different from other families, I'm sure.
I was interested to read that diagnosis name, "Frontotemporal Dementia", I'd never heard before in the article you linked. You may remember that my mother's twin was tentatively diagnosed with "Dementia with Lewy Bodies", and my ddad was tentatively diagnosed with ARCD, "Age Related Cognitive Decline". There are actually many different dementias - it's a misconception that it's all Alzheimer's. And sure enough they were very different. My dear aunt experienced confusion about where she was when in her own home, forgot leg movement, lost her ability to be herself or care for herself several years before her death. My ddad (although he gave us scares BECAUSE of his physical capabilities without the needed wisdom), tended to most of his own grooming, bed-making, and clothes choice, still taking walks outdoors until shortly before his death.
My dear aunt needed someone to feed her within just a few years of her diagnosis, while my ddad never even considered the idea of anyone else holding a spoon, toothbrush or comb, so, 2 really different dementias. Oddly, learning what to expect from both the different diagnoses is what helped make our decisions that each could be cared for at home. My ddad was considered high functioning in a familiar environment. My dear aunt, although extremely dependent, was very calm, and no one was ever scared about her walking away or doing anything else harmful.
I fought for regular B-12 testing for both of them to know when to supplement, and insisted on the D-Mannose to try to keep dear aunt out of the hospital again, after she reacted so badly to the hospital once. My dmother was also insistent on the B-12 testing for them, because she remembered that the community's long-time family doctor used to swear by it for older patients.
If I knew then everything I know now, I'd fight harder with my ddad's doctor to wean him from the tylenol PM, which I've read even more about and mistrust even more now. But doctor was so hopeful it would help with sleep, and that is very important for mental clarity. I'd try harder to get coconut oil into their diets - didn't know about it with my dear aunt and my ddad was suspicious of it. I did get my ddad to take the supplement Acetyl L-Carnitine and fish oil for a while until he began to feel he couldn't swallow them.
And reading this new book mentioned above, I'd probably try to change their diets to less carbs. But nothing was going to keep my ddad from having bread with every meal, a habit learned in the depression when bread was used to make the meal seem larger. And food treats became one of his few enjoyments (you probably remember our cookie wars) so it seemed so mean to stop him. Also I now wonder about his insistence on beans every day, which was probably key to his great digestion and regularity, but may not have been good for the brain if carbs aren't so good....? still reading about that.
My aunt-in-law, dcouinMary's mother, was diagnosed with Alzheimer's, btw, and I would have to say that her years with dementia were the hardest on caregivers of the three. I am still amazed that my cousins could care for her at home, but there were several caregivers there. She fought against help very strongly and required constant, vigilant monitoring.
