caring for sister (parents have passed on)

Cas Sister

I live in Cal 6 months and NY 6 months. My sister is early/mid stage Alz.2 hours from me in NY. When I'm in NY, she stays with me one week a month. She is 73 and has lived alone her whole life. She is resisting help but I know her Alz is progressing and she can no longer follow a recipe to make meals. Worse, she just forgets to eat. She still drives (only in daylight) and exercises LOTS - maybe too much...2 hours on an elliptical after not eating breakfast or lunch. She is refusing in home help. At this point i have a set up with 7 friends who take turns coming to visit on Thursdays to check her pill box, make sure there's no rotten food in the fridge and putting any important mail aside for me. How do I convince her to accept paid help? I'm about to leave for California and I'm sick to my stomach worried. I'll fly back every 5 weeks for a 4 day stay but that's not enough. Any advice is appreciated.

M1

Hi and welcome. Do you have power of attorney for her? You are going to need it, as you are likely going to have to make decisions for her safety against her will. You cannot try to reason with her or convince her. Read up on anosognosia, she almost certainly can't recognize her deficits.

Anonymousjpl123

Hi and welcome to the forum. You have found a great place for info and support. Who has POA (power of attorney) for your sister? This is quite important, as while she is in the early stages now, soon she may need someone to make decisions for her.

If she needs paid help, it is probably also time to stop driving. have you had a conversation with her? Does she know her diagnosis? It is so hard, as the person so often doesn’t realize that they can no longer function as they used to. I would start by figuring out the legal and financial things such as power of attorney, what type of coverage she is eligible for, etc.

The thing is, this disease is progressive so getting help a few times a week will be useful, but she will likely need more support. I’m so sorry you are going through this, but glad she has you as a sister.

Cas Sister

I have POA. I'm on her bank accounts too. I've met her financial advisor and lawyer and I have her will and health directives in order. I have not put her home in a trust ------ I know I should but it scares her to hear "irrevocable". Our dad had vascular dementia and she was one of his primary care givers. we had hired help for him and he stayed in his home until his death. The last year he had help 4 hours in the morning and 4 at night. She remembers him being hesitant to accept help and she can sometimes understand that her situation is similar. Like my Dad, her greatest wish is to remain at home. Right now i think the hardest thing for me is people who say "She's really confused. What's the plan?" I mean What can I say to that? She has agency. I can't just put her in a home. I know from reading hundreds of these threads that eventually she will probably have to go to a memory care facility. But I also know that she has saved lots of money in her life and if I can spend it on in home care that's what she wants and that's what she deserves. I'd like her to stay in her home until she doesn't recognize it as her home. Is that crazy?

Anonymousjpl123

Not crazy at all! And it sounds like you have taken all of the right steps. People who ask those questions…they have no idea how much goes into “the plan.” It’s not, as you say, a one and done kind of thing. I would just say “we’re working on it, and I would love your help as we move forward. I will keep you posted.” Or something along those lines.

In terms of caregivers, since she does want to be at home, are there agencies near you that you could call? Even just to get the ball rolling. Also, it may be a good way for you to get the lay of the land in terms of what health care agencies there are, which are good, what the minimum hours are, etc.

Also, if you find someone who you think would be a good fit you can just tell her she or he will be helping out while you are gone. From my firsthand experience, just getting the ball rolling helps a lot. You don’t have to worry about longer term placement yet if she can afford the care to be safe at home.

JDancer

She could lose all of her money and possible her life if she continues driving.

Please read the many posts about PWD and driving