What to do when your mother who is has dementia refuses to go into assisted living because she is "not old like that" and refuses help?

My mom was widowed back in 2009 and became super independent which was great that she tried to move forward but it actually turned into a nightmare because she would hear none of it when she started losing her memory around 2017. I live in NY, she in SC so it was easy for her to hide it but I started suggesting she consider help and still she dug her heels in. Fast forward thru the pandemic and she was telling me she was getting lost driving to the market, misplacing items, asked me to help pay her bills, etc. and STILL refused the notion that she needed help.

This past January she had a heart attack in the shower, face planted the tub and found by a neighbor when I couldn’t get in touch with her. Hospital for 2 weeks, rehab for 10 days… I’ve been down here since due to her diagnosis and inability to care for herself. Some days are better than others but she swears that I’m making it up to sell her house and I somehow got the doctors to sign off on it. I’ve managed to keep her safe, make sure she eats, takes her meds and gets back and forth to her doc visits but the emotional toll is heartbreaking for all involved. Thank god I’m her POA because she’s all set to go into AL this week and keeps trying to put it off.

Sorry for the lengthy response, but long story short, this disease doesn’t get better so try to get the legal stuff (Will, POA) in order and start gently suggesting help. I know it isn’t easy because no one wants to lose their autonomy but at the end of the days someone needs to be the adult in the room and keep her safe. Good Luck!

We had the same problem. For years we cared for her at home using hired caregivers, 10 hours a day. We had POA but we talked to a lawyer and in her province of Canada, you need a "mandate" (court order) that she is incapable to do more than financial transactions. So we got a mandate a year ago, just in case she got worse. A month ago, we had to stop as she was a danger to herself, we could not get reliable caregivers, and it was a huge stress for me and my brother. We told her she was going out for lunch, then told her the house needed repair and she could not stay in it, and took her to the best memory care retirement home in our city. We are selling the house. She says she hates it, but seems to participate in the activities, and attacks me and my brother verbally every visit, but she is safe and well cared for. I wish you all the best in dealing with your mother.

My brother & I wanted our mother to go into Independent Living 12 years ago, she was a young 85, living alone in the mountains of NC.

She refused, well 2 years ago she had a slight stroke, she was afraid to spend the nights alone, calling the EMT's over & over again, they started billing her $650 each time she did, well that ended that, we scooped her up, moved her near us in AL.

Guess what? She loves it, new friends, she teaches chair aerobics, plans event and so on.

Lot's more to the story, suffice to say, we had to sit and wait as the guidelines for invoking your POA and placing someone in AL are stringent. My mother would not have qualified for us to force her as she doesn't have dementia, bathes herself, feeds herself and with a walker gets around fine..she drove until she was 94!

We just went through this. Even the POA didn't help so we got guardianship (expensive and time consuming) and forced her to move "to the old fogies home" (her words exactly.)

And we/anyone that listens hear daily how she was forced to live with old people and her house/possession are becoming "a hell hole" because "she isn't there to take care of them". 🤷lol

I wished my parents listen to me to live in assisted living. Dad died and mom was left with memory loss and major anxiety. I truly believe had they done the right thing my mom would not of broken two wrists, two hips, and a elbow. The major reason parents of a certain age or medical issues should go to assisted living is they will be in familiar surroundings and will make friends. When it gets to the point they have to go to an assisted living community it’s a burden on them and the family. If I knew what I knew now I would not of allowed my parents to put me as POA. Parents are responsible for their decisions and their children should not have to pay the price for stupidity and stubbornness.

A couple points. Has your mom been tested to determine her level? My mom did and still does believe she doesn't belong in AL. My brother was also sceptical at the beginning (1yr ago) even though she couldn't manage meds and was a diabetic surviving on cake and ice cream. Finally convinced him when geriatric doctor stated that sooner the better so she could get any benefit from the placement and adjust better.
When she was evaluated, and after move, it became apparent that she was much worse than we had known. Over the course of the year she went from regular AL to acute AL to memory care. So far she hasn't adjusted but her meds finally got changed and her behavior has evened out a bit. She thinks all the people there are old, the men don't even have cars! She wants to come home, go to the bar with my brother to find a man. Wants a gun to shoot my long deceased dad. Oftentimes it seems she is in the 1950s.
To get her there we got a agent/advisor to take us to 4 places. We narrowed to two. Took mom to see the two. Found that she was amenable to "trying it out" if the home really engaged with her and asked her to come try. Was especially helpful when some residents spoke to her said they loved it there. So she packed for a 2 week stay. Which we made permanent.

If your mother in law is only in the beginning stages of dementia, it is very unlikely that your husband or his sister can force her to move even if they do have a springing power of attorney for her - do they? - and it would be a mistake to try because they will lose her trust.

What are the main concerns about how she is managing day to day? What's happening?

People can still live in their own homes with early dementia, but she may need aides to assist her if she is having difficulties with day-to-day needs, taking her medications on schedule, getting to doctor appointments, etc. If she cannot afford aides, or they will not be appropriate for her, then assisted living/memory care may be her best option. People cannot be forced to move, unless they are declared incompetent by a doctor. You may want to consult with an attorney who specializes in elder law. Before you take that step, make sure all of her legal paperwork is in order while she is still able to sign legal documents: setting up powers of attorney for medical and financial matters, a living will with her advance medical directives, a will if she has assets, banks have their own POA forms, ask her to get you a credit card on her account (with your name on it) so that you can purchase things for her, and you need to be on file with Medicare and Social Security to be able to speak on her behalf. My mother made me joint owner of her bank accounts, etc., which made things much easier. I got copies of all of the statements so that I could monitor her accounts. If she's starting to mismanage her money and miss paying bills, speak to her about taking over her bills and financial matters. She may be relieved not to have to do it. You can also speak to staff at the AL facility you think will be good for her and ask their advice on how to convince her that this would be a good move.

Most ALs and SNFs can make arrangements for respite - short term stays, Maybe suggest she have a visit to check it out for "when she is ready."

My Nana is a bit further along in her progress (about stage 6) but still has some of those concerns. My cousin and I are doing our best to care for her at her home but recent occurrences have forced us to make a decision on her behalf. The whole process is taking an emotional, mental, financial and physical toll on all of us involved.
We scheduled a visit/ tour of one of the memory care facilities ( Cedarbrook in Ware, Ma - it is amazing facility with wonderful staff) and accompanied her to see all of the options they offer. Not only did my cousin and I go with her but my sister, my aunt and a close family friend went along. We had lunch and met the staff, took a lovely long tour, got alot of our questions and concerns addressed and my Nana was in awe of the facility and everything they have to offer. I do think taking the time to go with Nana, seeing everything offered, knowing that it’s not a place where they just dump you into a room and ignore you was a big hurdle we overcame.
Theres also the understanding that it’s not just because Nana is a bit forgetful that we are making her move, it’s that the facility will provide her with therapy to help combat the dementia- not cure it but to help her know how to live with it and not be afraid. We are constantly reinforcing these points in preparation. The other point is that this place doesn’t have to be permanent - setting a timeline for her - saying if in three months she hates it’s, and she’s not getting any help or better than we will reassess the living arrangements and figure out something else. Memory care facilities are so far from a nursing home/ rehab and I think it is something a lot of the older generation doesn’t realize. That you are just trying to dump them and get rid of them- you are looking for a place that will help them
live their best life from here in out, since you can’t be with them 24/7 to ensure that yourself. Assuring your loved one that they will still have independence (to a point depending on their level of care needed) and that they won’t be locked up and forgotten I think is a important step.
I believe in just laying it all out on the line. That everything you are doing or arranging for them is out of love and wanting them to have the best care and therapy possible.
We are moving forward with setting her up over there, getting her place ready and figuring out what she has to bring and what we will get her new. It’s still a long process that’s taking its toll- yet at least now we all have something to look forward to.
More than anything my Nana wants to help and be useful- and in discussing this with the facility - they have various tasks she can assist with and that will be her “job” while she is living there and can help “take care of the elderly” ( My nana will be 87 at the end of May)