Caretaking with HD and Experience with Long-Term Care (LTC) Medicaid and Area Agency on Aging.
Hi! Fellow long time reader here. My mom was DX with HD around 45 years old. I don’t have her CAD but I know it was close to her sisters (both have passed from HD). She thankfully has been a very slow progressing case but she (at 73) is now walking with a walker (couple falls), very limited short term memory if any, incontinence issues, and slight mood swings but thankfully we go to the HD doctor in Tampa every three months and she’s over all, pretty positive with all of her medications. Very attached to me, her daughter and caregiver.
I’m writing cause I’m alone on this island, no family support really isn’t anyone left, besides my fiancé (who doesn’t live with me due to housing and my mom with HD and his kids) it’s not fair to his kids that don’t understand. But he’s my support person and is there for me. I have aniexty and of course seeing my mom progression kills me inside but worries me about the financial future to as things get worse. Does anyone have experience with long term care through Medicaid, when you weren’t able to care for your loved one, did they help assist and pay to put them in a skilled nursing facility? I know everywhere is different just trying to hear other experiences. Right now I get 30 hours a week that’s paid for (very grateful so I can work to pay the bills) she is alone for 2 hours in the morning and 2 1/2 in the afternoon) but then it’s on me. She has a wonderful case manager but she is slammed and really just tells me, we take this day by day.
Thank you all for everything! Just living off one salary and then knowing I’ll need more help in future and what happens if I can do it anymore (trying to work 50 hours) and make sure she’s safe. Just wanted to hear anyone’s experience with long term care - Medicaid. I know the places probably aren’t the best but knowing what options are in the future… thank you to everyone!