Can't afford memory care or assisted living. What to do?

Olly_Bake

Hi all. I’m new but needing input. My dad lived with us for almost seven months. Dad was not much trouble beyond normal dementia behavior. No aggression but likes to roam/wander, trouble sleeping at times, and always asking for different people that use to be in his life - busy fellow. However, my husband could not handle it and figured dad was being rebellious. He was also was putting lots of pressure on me to get him out. This created more tension in an already tense home. Things hubby said also caused some disrespect from the teens toward me and dad. I felt horrible on all fronts and stuck in the middle not wanting to hurt anyone.

So I brought in hospice to help me get dad in a nursing home after getting guardianship and conservatorship. I brought them in also because they said they could help me get him in the nursing home desired. Well things haven’t turned out that way. But they did help get me one week of respite. This facility said they would be willing to accept him long-term so I've been dropping in trying to make a final decision. I do not like what I’m seeing. There is one other nursing home that is willing to accept him Medicaid pending but has even worse ratings and is an hour away so no daily visits.

What I like about the nursing home is that they are allowing him to be free and not locking him down. What I don’t like about the nursing home is that they are letting him roam all over the place including in other resident rooms without redirecting. I don’t see activities. Another issue I’m having is that I can’t pin down meal times. It's always I just missed or they're late. A final dislike is now dad has to use it on himself rather than being taking to the restroom. At our home he was able to help himself with all personal care once you help him get to the area with a walker or wheelchair. 

Now I’m thinking of bringing dad back to his home. The sibling that said no before is now saying okay but I believe it is because times are tuff financially. I’m okay as long as the care is good and the daughter that is living there is willing to help, supervise his workers, and the family drama calms. His Medicaid waiver program covers 7 hours for 7 days and 60 respite.

Please give me some food for thought about this nursing home and how to make it work or how I could probably make at his home care work. Dad can't afford assisted living or memory care unfortunately.

SusanB-dil

Hi Olly B - welcome to 'here'...

so sorry you are in this situation and don't have the family support.

Someone may have better suggestion, but if he does have the help at his home, could you maybe try that for a while and see how it goes?  However, it seems you have some doubts about that?  Would the person at his house be open, and would it be possible, to maybe bring in some help there for a few hours a week?  With 7 hours available - maybe spread that out over the course of the week at his house, or work out what hours would work best for that person.

Glad hospice is helping out.  but if you don't feel right about either facility, you probably won't have peace about it if you place him in either one.

Lindsay22

It's very difficult when you are in the middle as it seems your dad is.  Not to be glib but the best thing you can do is vote for universal healthcare and social support systems for families and seniors.  

On a more immediate note, if you haven't already, contact your local area association on aging.  Depending on how far along dad is he might still benefit from a day program.  It sounds like if he is still able to get to the bathroom on his own he is still in the moderate stages but not sure.  A day program could be an option and then have in-home help at night and on the weekends.  If your sibling is willing to cover night duty for a little while that would also be a big help of course.  As the pp mentioned you could try it for awhile and see.  Things will, of course, decline eventually and he will need a facility but perhaps you can buy yourself some time to find one you like better that accepts Medicaid. 

Olly_Bake

I appreciate you taking time to comment SusanB-dil.  I’m doing a final check with the daughter/sister that remains in his home today.  It has been and would still be much easier for me to care for my dad at our home or even adding on to our home but husband well…not supportive of that idea either.  It will be possible to bring in help to the home - 7 hours for 7 days and do adult daycare if he agrees this time but don’t know for how many hours yet.  He didn’t like adult daycare when he was in our home but I’ll have to try again if he goes to his home.  I’m trying to be at peace if he has to stay but things I see unnerved me. I asked the other day at another forum before finding this one if using washcloths after a BM was normal protocol at nursing homes. When I saw it happening with my dad, I was confused because I assumed it was wipes like we use here in the home and I know once you get him to a toilet he does what he has including clean himself. All I use to do was a final check. So visit today and there he is eating lunch dirty diaper. And for lunch I’m seeing patients including him with a small bowl and a cup of tea. Don’t know what was in the small bowl. Now I see why lunch is over so fast. Today I made it at 12:15.

Lindsay22 I really hate not knowing exactly what Dementia dad has or how far along. All I know is 90 percent of the time he can still recognize us – faces and name. Over the phone he recognizes voices still on most days. Still feeds himself, shave, and bath once you get him setup. He knows the city and state where he lives still most days. But he can’t remember that his wife has been gone for a year or that his dad has been gone since I was a teen. I can only pray this will work. My gut was just telling me this was not the right nursing facility and I would darn near have to sit on top of them and once I'm back working, that would not work. Today it took them 30 minutes to come and do a diaper change and then I was asked to leave the room. Previous nursing home didn’t mind me staying and helping.

Again thank you two so so much. I'm going to look around here for some ideas to make home safe. I've thought of cameras but will look for additional.

Wishididntneedtobehe

Hello,

I'm sorry you are dealing with all of this and that your spouse is not supportive of your desire to take care of your dad at your home. That's hard.

Do you know what part of adult daycare you dad didn't  like? Can you try another place- than the one he went to before?

Sounds like leaving the place he's at is a good idea. I agree with previous poster, to give the situation at his own home a try with family and paid help- and if it doesn't work then figure out what to do from there. 

tramey50

Hi, we kept Mom at home as long as possible with in home caregivers. This was only during the day and hard to find during Covid. Once this no longer worker we hired an elder care attorney and applied for Medicaid. Mom moved into memory care which she hated at first, but has grown accustomed to (I can give you more details on that if helpful).  This cost a bit, but we got her a Medicaid bed and it’s worked out ok. 

What helped me is knowing she was not very happy at home (she always wanted to go home even when she was home) so not being happy in her new place wasn’t that different. What overall is the best place? For us memory care wasn’t that different for her, and she was safer and cared for. We still spend a lot of time with her, but it is less stressful.

Tracy

Olly_Bake

Apologize for taking a while to get back and respond after getting such helpful responses. I decided to take dad out of that nursing home and start over. I tell you what, one week of respite at the nursing home helped reveal way more than just visiting before he entered one. 

However, he is back at this home under the care of another sibling that I can't totally trust in unfortunately but I'm trying.

I was all set to have dad attend the day program so I could get him outside of his home at least once or twice a week. However, hospice says no even though it’s part of the Medicaid waiver program. The part of the daycare dad didn’t like was the driver not taking him where he wanted to and I had a phone job where I had to clock in early so could not do the pickup and dropoff and husband just would not help with anything except doctor appointments where I believe his hope was one of them would insist on the nursing home. 

However, his doctors did not agree and said he was in the best shape recovery wise then he had been in a very long time and they hated to see him have to reenter a nursing home or go back to his home.

Tramey50 I would like to take you up on your offer but not exactly sure how to go about doing so. {Once this no longer worker we hired an elder care attorney and applied for Medicaid. Mom moved into memory care which she hated at first, but has grown accustomed to (I can give you more details on that if helpful).  This cost a bit, but we got her a Medicaid bed and it’s worked out ok.}

Thanks again everyone!!!

ImMaggieMae

Is memory care a problem in all developed countries or mostly in the U.S.?