Pick’s disease. They think. They can’t be certain until they do an autopsy, and we’re in no rush for that.
There’s no cure and little that can be done in mitigation. All we can do is make sure she’s cared for while we watch her fall further and further into dementia.
We don’t have a history of dementia in the family; we don’t even have a history of Alzheimer’s in the family. We’re fully mentally capable until we drop dead. None of us have experience in dealing with this. We’re helpless, bewildered, and terrified.
We can take steps. We’re good at taking steps. My mother and my sister are out there setting up guardianship and finding a nursing home this week.
When they visited yesterday, she told them, “I have to go now. My mother and sister are here to visit me.” We’re not good at dealing with that.
Oh God. I’m so sorry, Frank. I have absolutely nothing helpful to say except to offer sympathy. I’ve been through this with two grandparents now, but never with someone so young.
I’m glad you have your mom and sister for family support.
There’s lots of family. My dad, my eldest sister, and I are trying to be support for my mom. I just don’t have anyone whose shoulder I can cry on yet, as not all of my six siblings know, and I don’t know who does and doesn’t. Which I disagree with, but I’m not yet prepared to take action on. And my mom, my dad, and my eldest sister don’t need me breaking down too.
My sympathies. It is just as awful for her as it is for you and your family, though in different ways. And she is so young! Does she have a family of her own, (ex)husband, kids?
Oh geez Frank, that’s just bloody awful. I saw the thread title and was gonna come in with a diatribe about my mad sister, but hers is just garden-variety bitcheosis.
I’d never heard of Picks Disease (just googled it though) and it seems you’re all in for a long and rough journey ahead.
May you seek and gain peace wherever and whenever you can.
Sorry to hear that. Dementia of any sort is a tragic illness. I’m not sure if you’re already aware of it, but if not, UCSF has some info on FTD/Pick’s disease that might be helpful: Frontotemporal Dementia | Memory and Aging Center
I am a nurse and have worked with various forms of dementing illnesses, mainly Alzheimer’s, but also Pick’s and Korsakoff’s among others. I have an “Ask The” thread out there somewhere, you can find it by clicking on my profile, or if you just need someone to talk to drop me a PM…
Stay strong, and you a good brother and son to be there for your family.
Alzheimer’s is the bête noire of my family. Because of her own mother, my Mom has been very active in volunteering for dementia studies; she’s done all kinds of things. So far, she’s 80 and hasn’t been diagnosed with it, although every time she repeats something she’s already said, we worry.
We kids have also taken some surveys. It’s not much and it won’t help your family, but it’s another drop in the bucket in the long struggle to understand and perhaps ward off dementia-type illnesses.
I would strongly recommend that your family look into finding a support group for family members of loved ones with dementia. Talking with other people about the feelings that are part of the process may help.
Obviously, there’s nothing I can do here except add my voice to the chorus of sympathy. It really sucks that your family are having to go through this!
