New Here - 33 looking for support for mother diagnosed with AD

mtschultz491

I am not normally one to reach out for support in this format but I feel very isolated in my mother’s recent Alzheimer’s diagnosis. We have seen her condition worsen over the last few years and last year there was a huge red flag for us when she couldn’t remember opening gifts at Christmas. I was 2 weeks postpartum and almost exactly a year later she has begun infusions of Leqembi.
My mother is divorced and currently lives alone and my sister lives across the country. Next week when she’s home we are becoming POA and co owners on her bank account.
I’m wondering if others have advice, support, or words of encouragement for this process. I feel extremely overwhelmed by all of this.

mabelgirl

I would speak with your mother now as she would seem to have a good cognitive ability if the only thing you’ve noticed is forgetting a year ago event. Most folks see the red flags when the PWD forgets within short immediate span of time answers or conversations. You need to plan for the future which may not be far off, there are no time frames on dementia effects. Would you or your sister be willing to take on full time care of her or would she be one to move to a facility? She eventually will not be able to live on her own for her safety. If she is still driving she won’t be able to eventually. Does she have her medical and advance directives in place? Have you spoken to an elder law attorney to ensure your getting all the legal and financials done properly? For instance you’ll need DPOA not a general POA. Each state have their own laws thus keep that in mind, also ask about familial laws in your state.

Educate yourselves on this long good bye and what you may eventually face. Check out the resources on this site as well as do searches to read previous threads. It’s been a help to me. Each journey for the PWD and family is different but there are similarities and reading how other folks handled things is helpful. Prayers for a peaceful journey.

H1235

I agree with seeing an elder law attorney. A DPOA is going to be needed, we also did an advanced directive. You mentioned putting your names on the bank account. Be very careful here! The DPOA should allow you to do anything you need to with the account without changing the names on it. If Medicaid ends up being necessary down the road (not uncommon, care is expensive), this may be considered a gift and disqualify her. Talk to the lawyer about it first, it could be a very costly mistake. I would recommend keeping a very close eye on everything. She is not going to come to you and tell you she can’t drive anymore. Someone on here said that if there is a dementia diagnosis there can be problems with car insurance coverage if there is an accident. Bills and finances are usually one of the first things a lo struggles with. If you or your sister are not paying bills already I would find a way to monitor that they are being paid (online access to the bank account). This is a time when a lo with dementia is very vulnerable to scams. Better to take control of money away too soon that for her to loose everything in a scam (imho). Taking those first steps to take things away ( driving money,living alone) are gut wrenching, but will need to be done. In my opinion you don’t want to wait til there is a problem, you want to do it early enough to avoid the problem. I have attached a staging tool may here have found useful. There are more resources in groups under new caregivers. Educate yourself and I think that will help you with all the ugliness to come.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

mtschultz491

https://alzconnected.org/discussion/comment/231356#Comment_231356

Thank you. There are many many other symptoms. Her short term is very bad and has no sense of time. She has admitted to not knowing where she is at times. She did receive an official diagnosis in November and just began treatment but it seems to have escalated even in the last month.
Full time caregiving is absolutely not an option for me as I have a full time job and a one year old at home. She is currently on Medicare and has a secondary insurance plan that has actually allowed for her infusions to be at no cost. I’m not sure what her options will be for AL as I know this is usually very expensive and she doesn’t have a ton of assets.
I appreciate your information regarding legal and DPOA. I will make sure to speak with our lawyer about that. We have a family lawyer is it recommended that we obtain an elder law attorney as well?

mtschultz491

https://alzconnected.org/discussion/comment/231378#Comment_231378

thank you so much for your response and for sharing this tool. I really appreciate it.

mabelgirl

https://alzconnected.org/discussion/comment/231406#Comment_231406

frankly I didn’t use a elder attorney. The benefit of them is getting the PWD qualified for Medicaid and protecting assets. For my mom she had nothing to her name a very small SS amount thus I did it on my own. If you don’t know Medicare does not really help with long term care services in home or facility. Medicaid has programs that do. Medicaid does not cover the full cost of a home, fyi. I’m in Florida and used services of area agency on aging before getting Medicaid. They were able to get some in home services to help the PWD like housecleaning and stuff. They also will help with the Medicaid process but I had already started. Your local elder affairs office may be of some help as well. It’s good you recognize she will eventually need a home. I had so much wanted to not have to do that but after a year, with my moms nasty behavior (part of dementia for her) towards me and my family, I had to concede we were all better off if she lived in a home.

harshedbuzz

A joint POA, especially when one sibling is across the country and not living the day-to-day of dementia, is an almost guaranteed way to lose a sibling, as well as a parent, to this wretched disease. I would also refuse a POA for health and care decision without having control of the PWD's assets.

It's rare for 2 siblings to be on the same page. There's often a difference of opinion regarding the balance of safety and "independence". Even if you both agree a facility is in the future, one may feel mom deserves to "stay home so long as she knows who her kids are" while the other might see the positive in dementia-informed socialization and activities earlier on.

It's best, assuming all siblings are reasonable, for the one closest and with the greatest availability to be decision maker. One of the most critical aspects of "POA-ing" is rolling into the ER as the ambulance arrives to advocate for and calm your LO. That's just not possible if you're on the other side of the country.

HB