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Makmom56 Asked November 2019

Unable to stay in assisted living. Dementia and my Mom will not accept having a roommate. Can I be the caregiver?

I am POA. My 84 year old mother has vascular dementia. Up until 3 months ago, she had been living independently but was not going to her doctor appointment and ran out of a medicine and had delusions as a result. I live in FL and she was in Indiana. I am an only child with no other family. I initially thought she could be stabilized with meds,and back home. She was then advised she could not live at home without 24/7, and private duty was not affordable. I had previously planned moving back there after my lease ended next fall. After this unexpected happpened, I flew up and planned to bring here to Florida to live with me. She had needed a med change and stayed longer. They wanted to place her in a nursing home but the Medicaid look back period would cause a few months of self pay, which I do not have.


She has an IRA, and she just started here near me with assisted living but, she was in her room alone, but now has a roommate which she will not accept and told the roommate she could not stay in her room (not my mom's choice) and they ended up moving the lady, but she will be getting another next week. My mom has refused showering in the hospital and got by with them giving her bed baths. She was on a psych ward for 6 weeks, and they told me they couldn't force her to shower, hence the bed baths. I brought her here to Florida and in the meantime of 5 days with me, she was fine, as long as she was here, she cooperated, minus the shower. They ordered home health at this assisted living, so far she is resistant but they are working, and seem to be patient but, I know my mom and she at this point, knowing what I know now, I cannot see her accepting a roommate. I know she will not be able to stay and due to the Medicaid penalty, (she has her social security now plus a monthly distribution from the IRA to cover her expenses now). But it is approximately 20,000 if she were to be considered for a nursing home, won't be allowed to cover or may not fully cover the period of ineligible. My question is, even if she qualified for one, she is definitely not going to accept it, I know her and,she lived alone for so long, she is set on her ways, regardless of what they tell her. Can the assisted living let her come back here, if and when she cannot live with a roommate, I can arrange for home health, and I work from home. I live alone and don't have a social life. The main reason I had to get her to assisted living was because the hospital up North, the caseworker became upset when they couldn't get her into a nursing home, due to the Medicaid penalty. I had to return back home at the time, and they told me they were working on it, but the nursing home was dragging their feet, and the caseworker threatened to and did call APS and I had to meet with them. After I was there to bring her back and she was worse, I worked with a place for mom who I cannot say enough good things, but we didn't realize it was independent living which was not going to work.


That is when I realized she had to come back with me to Fl. I was able to work with care.com, who was a godsend and found this really nice assisted living 10 minutes from me, and I was able to resolve the report made by the hospital to APS. The caseworker was mad because they thought I wasn't doing anything about getting her out, when I was counting on what the nursing home had told me in the beginning, I almost lost my job running back and forth to the hospital and I had to clean our her apartment, manage all her affairs, also, I had her set up at my apartments then the back and forth there, with first she will be here, then no she's going to assisted living, and luckily I had a very understanding leasing agent. So now, I need to prepare that she won't accept one, and have to leave. I again had no choice but to place her in assisted living because of the hospital threatened. Can they release her as long as I have home health and can provide the care needed? Thank you.

Makmom56 Nov 2019
Thank you all so much, I am taking in the information you are providing and advice. Yes, she is private pay for now, her social security plus monthly distribution from the IRA. I definitely may be unable to provide that care, and need to do more research and I'm going to start the process of contacting care.com again and shift to a nursing home. It is definitely only going to get worse, and you are right, I do need to look at the best options.

anonymous912123 Nov 2019
If I read this correctly right now she is self pay, if so, she can have a room by herself. If the facility she is in doesn't have one available then look for another home. Find a place for her in Florida, keep your life, don't go anywhere, move her.

Cash in her IRA, use it for her, when that come close to running out, file for Medicaid.

Don't overthink this, figure it out around you, not her selfish wants.

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AlvaDeer Nov 2019
While you are working (you mention a job) who will do 24/7 care for your Mom? You describe a very uncooperative Mom. Are you even halfway aware of what the care of her will entail in emotional devastation? I personally think that whatever penalities are involved in Mom's IRA it needs to be withdrawn now and used to pay her care until she can qualify for care, and she needs to be in care. No one would "choose" to have a roommate, especially not when in care. However, I think you are not describing a situation where there is any choice. I think you will find this out quickly if you begin to give ongoing care. I am so sorry you are facing this, but--do whatever you must. A go-fund-me account, a loan, anything, to keep Mom in care until she qualifies would be my advice. Quite honestly we are not Saints. We do have limitations. So sorry for all you face.

Isthisrealyreal Nov 2019
Realize that insurance will only pay for a short period of home health services and then you will be self pay.

I would be concerned that she is not going to want you as a roommate either and then what do you do. Her dementia is only going to get worse and she will require more care, will you really be able to work and care for her?

Please read this website about how it has worked out for others.

I would just call APS and ask if you can bring her home and what criteria has to be met to avoid problems.

Time is passing, so can she handle the current facility for a couple more months until the penalty period is over for Medicaid?

Only you can decide if you can really manage this. It truly is a difficult journey and you want to make sure you are prepared, especially with 1 ding from APS against you already. Another one could end up very differently.

One thing that I would encourage, don't jump in every time she complains, let the facility work with her. As long as you jump in she won't have to adjust. I think a lot of us make that mistake, it is hard to see our parents in a facility with a stranger living in their room, but they can adjust, it just takes time and some hands off.

Geaton777 Nov 2019
Just to clarify, your mom is not currently approved for Medicaid, yet the nursing home is insisting on putting her in with a roommate? Usually when you are private pay you don't have a roommate...

My MIL is in LTC on Medicaid. She never has anything good to say about any of her roommates. The last one was literally never in her room because she was out and about. Yet she griped about her. At this point and in your situation, I think you should not take her back no matter what. Don't give up your life for this. The NH knows how to deal with people like your mom. Let them and don't step in to rescue her. Tell her there is no other option because you cannot be her full-time caregiver. Not sure if they can release her but tell them she will have no place to go. Also, has she ever been tested for a UTI? It can worsen dementia symptoms. Good luck.
Makmom56 Nov 2019
Thank you so much. Yes, in the past she has had frequent UTIs. Lately been ok. I did find out her Medicare advantage will cover the skilled nursing the 100 days, with around 5000.00 copays. Plus they don't require the 3 day hospital stay. I've got more digging to do. I really hope there are opportunities I can find to get her on a nursing home, using Medicare, her IRA and soc. security then hopefully Medicaid. Thanks for your reply, I wish you well too.

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