29
votes
The vanishing family: They all have a 50-50 chance of inheriting a cruel genetic mutation — which means disappearing into dementia in middle age
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- Title
- The Vanishing Family
- Published
- Jul 20 2023
- Word count
- 7660 words
Having watched a grandparent survive dementia for more than a decade, its definitely not easy to watch. That progression starting so much earlier just seems a little terrifying.
Personally, I think knowing and being able to plan and adjust would be the better move, but its a terrible decision to have to make.
It is completely devastating. But yes it's a terrible decision. The article mentioned survivor's guilt for family members who do go for the test and get a negative.....humans aren't 100% rational and our choices can be quite difficult as a result.
My grandmother and my great uncle both got Alzheimer's. My grandmother had other health problems and died before she forgot too much.
My great uncle was in much better health and lived far longer with the disease. His sister (my other grandmother) had been his caretaker, but when she passed away, he came to us. My mom had to quit her job to watch him full time because he would wander, try to microwave spoons, etc., until we eventually found a nursing home for him. For the most part, he was very confused and did not know where he was, when it was, or who any of us were. He would frequently have extremely bad days where he suddenly remembered his late wife's death and would experience fresh and overwhelming grief as if she'd just died (she had died something like three decades earlier). Other days, he kept asking where she was, and we'd lie and say she was at the shop. Thankfully, it turned out he had a heart problem; he took a nap one day and never woke up, and so he was spared the full tail end of that terrible disease.
At the nursing home for dementia patients, one of the staff told me that it was extremely difficult and dangerous to bathe some of the patients because they believed they were children again being sexually assaulted. They tried to bathe those patients as little as they could get away with to avoid retriggering trauma. They aren't just bad memories for these patients; the things they remember feel like they are happening now.
Before, I used to think a lot about what I could do to ensure I'm in good health and physically capable for as long as possible in my old age. But after seeing what Alzheimer's and dementia can do, I'm not so sure about that strategy anymore. If I develop dementia, I don't want to live with it for long.
I can't imagine what I'd do if I had the disorder in the article.
After watching my grandma slowly slip away into dementia and die in May from dementia it absolutely floors me why these people have chosen to have that many kids with such a high rate of passing on a gene with a chance of developing dementia so young. To me that is pure selfishness, but maybe it’s not to other people.
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Susan (67) and Christy (71) are sisters. Their mother has a rare genetic mutation that give each of the 9 children, plus many grand- and great-grand-children a coin flip's chance of losing memories as well as the ability to care of themselves by middle age. Once the genetic culprit was known, each of these family members have to decide for themselves if they wanted to get tested for the gene, or go on life without it. What does it mean to find out something like this about yourself, what does it mean for family planning, for career, for making goals and having dreams?
There are no right or wrong answers for these family members: would you want to know?
Wanting to know yourself there is no right or wrong answer, but those that are refusing to get tested and then go on to have children are very much in the wrong.
I would want to know, because I want to be as in control of my end/decline and be as little a burden on my loved ones as possible. If I was choosing to breed, I would require the knowledge beforehand as there is no defensible reason to unnecessarily gamble with the lives of my descendants.
The article included the story of one such couple who opted for IVF, specifically selecting for embryos that didn't have the mutation. And then life threw a curve ball.
Life doesn't throw curve balls. They elected to be careless because a process, implanting embryos, that is often unsuccessful was unsuccessful.
Five of the original nine children are confirmed to have FTD, how many of those refused to get tested 15 years ago? How many children have they had since then? How many grandchildren? None of them knowing if their parents gave them a 50/50 shot of a life that'll be unnecessarily cut in half because they didn't want to face some bad news.
This reads like unnecessary fear mongering from the doctor to me, and seems like an attempt to be overly dramatic for the sake of getting an emotional reaction from the article reader. I don't understand how the doctor manages to turn "consistently getting good performance reviews at work" into a sign they'd get the disease. Having a high chance to have this condition is sad enough, now they have to blanket sadness over positive events like getting good performance reviews at work? How is that useful benchmark? Couldn't a bad performance review also be a sign of another issue? I don't get it.This comment is irrelevant; I misread the doctor's sentence as if it meant "getting positive reviews is the first sign you're getting the disease." My mistake.I think what was meant is that a drop in performance at work is what the doctor was talking about.
Body language and intonation would easily convey that while reviews being good still, that's where you need to look for a change.
Oh! I completely misread the sentence. I'll edit my message, as it was all based on a misunderstanding. Thank you for clarifying!
No I agree with you that the words themselves make it seem like getting good feedback at work is a sign to look out for.
I was only offering a suggestion as to how those words could make more sense.