How to talk to Parent about moving to Independent Living when they don't want to leave their home

LSRS · April 15

Any advice on how to talk to parent with mild dementia who does not want to move out of their house into a care facility? For reference, my mom got diagnosed last Fall and is now having issues with remembering to take her medicine and eat, also can't keep track of days and is forgetting how to use her oven. My sister and I are both out of state - we discussed getting a health aide to visit her and help out but she is refusing. We have been taking turns visiting her monthly and have meals delivered but are getting more concerned about her safety day to day. She does have a driving test coming up, and If she does not pass, I'm planning on using that to explain that she needs to go to independent living where she can get transportation. It is really hard being out of state but it's not an option for her to move closer to my sister or I due to cost of living. I have talked to her previously and she seems to be in denial. Any advice is much appreciated, thank you!

nopost · April 16

Hi- it's not denial but an inability to process the concept her brain's decay is impeding her safety - decisions and actions. See: Anosognosia
https://www.agingcare.com/topics/295/anosognosia

From what you wrote : remembering to take her medicine and eat, also can't keep track of days and is forgetting how to use her oven— she sounds in crisis now - food and medicine are basic to survival , she could burn the house down, kill/injure someone driving- and not remember it .

And with her exhibiting those traits IL or drop in caregivers doesn't sound adequate for her - I'd be looking for MC or very high level AL . The home will evaluate her .

Who is handling her money now? Paying for her cars gas? She could be scammed and then your financial options for her are even more limited.

Has she drawn up legal documents DPOA , will/trust , AHCD naming you and/or your sister? You'll need legal authority to manage things in the future and seeing an elder law attorney to get these things now if she is willing and found capable will save you a lot of time and money over trying to get her conserved.

If you can't get to where she is asap, you can let Adult protective services know an elder is at risk- because it sounds dire . Having food delivered [which let's a deliver person see an impaired elder] but her not eating it isn't keeping her safe. You can't count on her acccurately self reporting how things are with her.

When you see the attorney , ask which state is best for medicaid long term care , if she qualifies and the state where you live is more generous placing her near you is a much better option.

sandwichone123 · April 16

If she's not able to live independently, then she needs a higher level of care than independent living. That's a level of care more like an apartment, and if that were working for her she could stay home. She needs supervision, med administration, meal service that includes someone noticing whether or not she is eating.

She needs at least an assisted living, and probably one that includes a memory care on-site. Don't be surprised if, on evaluation, the staff at the facility assign her to a higher level of care than you anticipated. This is pretty common, not because the facility is making things up, but because they have a lot of experience in knowing what supports will be needed.

H1235 · April 16

Welcome. I agree with the others! I think it’s probably too late for independent living, especially with both children being out of state. I would start looking into options in your state or your siblings state. I don’t know how you could possibly do this without having her near one of you. As dementia progresses the person reverts back, kind of aging in reverse. I have attached a staging tool. At the end of each stage it gives a rough age equivalence and some guide on care needed. My mom is at the end of stage 4 and is in AL. She is in the equivalent of her terrible teens. She tells me “I can do whatever I want and you can’t stop me”. Remember dementia is about so much more than bad memory. Poor judgment, in ability to plan and organize, understand actions and consequences, ability to prioritize etc. If you haven’t heard of anosognosia it might be worth looking into. It is the inability of a person with dementia to be able to recognize their symptoms or limitations. It is very common with dementia. It makes things very difficult. She will not recognize the need for assisted living and may even be upset and angry. My mom was, to be honest most people with dementia are. Obviously you want your mom in the least restrictive environment as long as possible. But you need to keep in mind that they will not be getting better and you never know when that next symptom will show up making that living situation no longer safe. If she is living alone that is going to be even more difficult. I know it’s difficult to hear, but it’s time for assisted living!

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

LSRS · April 16

https://alzconnected.org/discussion/comment/241011#Comment_241011

thank you - we have already established DPOA and taken over her finances except for one CC which has a low limit. We also set up a trust for her to protect her assets. The elder care attorney we worked with went over the medicaid laws for her state vs ours and we also toured several facilities to confirm their payment plans. We have done the back-end work so to speak, but it is so hard to know what she truly understands. Some days she seems completely fine. She has a really good group of doctors that I communicate with regularly but not one of them has brought up Anosognosia, I will look into that. Another layer to her situation is that she had some issues with food as she got older - she's always strictly watched her weight but as she got into her retirement years, she really started working out a lot and restricting her calories.

As for the driving, I had to get her neurologist to put her on restriction months ago and then set her up for the test which of course got cancelled and rescheduled for several months later due to weather. it is finally coming up now thank goodness.

I appreciate you taking the time to respond - it is so hard with this disease, as she seems to be stable for a while then she suddenly takes a turn for the worse.

LSRS · April 16

https://alzconnected.org/discussion/comment/241029#Comment_241029

Thank you, I agree. The care facility we found for her has three levels, Independent living, Assisted and then a Memory care unit. It is close to where she lives now too so she wouldn't be in a totally new environment. I'm going to check out the staging tool you've sent me and then communicate with her doctor about where she's at. She is physically pretty healthy and really good at covering still, I think the staging tool will help. We really can't afford to have her live closes to either of us, her state is way more affordable for her care long term. We discussed with the elder care lawyer at length when we set up her trust and DPOA. Aside from my sister and I visiting monthly, she also has family close by that checks in twice a week for us. I'm prepared for her to hate me in the short term to keep her safe, I just want to try to minimize the stress this is going to cause her. That's my greatest worry to be honest. I know there's nothing to be done about that, I know she has to go and we have planned for this, She just has those good days when it seems so premature to move her. But rationally I know it's for her safety. This sucks. And I consider myself lucky because I have a sibling and am not doing this alone. I appreciate all your thoughtful responses so much.

nopost · April 16

"it is so hard to know what she truly understands. Some days she seems completely fine." We want to be positive and hopeful esp. with our parents but the disease is progressive.

The "good days" are remnants not a foundation you can depend on. It's not premature to get her safe for her "worst" days.

You maybe surprised how she adapts to the home- she isn't who she was and getting steady meds and meals will be good for her physically.

How to talk to Parent about moving to Independent Living when they don't want to leave their home

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