Are there alternatives for able bodied persons with dementia besides Assisted Living and Memory Care?
My mom has dementia, likely Lewy Bodies, and is just new at an Assisted Living. She feels out of place because the people seem so old to her. She is 80, but very able. I couldn't manage her at home well because she required so much one on one time and her fixations are difficult to deal with. I thought she needed more interaction and things to do. I knew Memory Care would be too slow for her, but AL seems so too. She has an apartment but feels trapped. While she lived with me her hallucinations stopped and now I'm worried they will return. Her meds will still be managed so that's better than when she lived alone and managed her own meds. She rejected adult day care but it may have been good for her. It's only the first week at AL but I'm concerned. She doesn't seem to fit anywhere. What else is there? Would we be better to hire 24 hour care at her home and see her money go quicker, but give her more of a life now? She wants to go home and spend no money. This is hard.
I'd wonder if she may feel out of place due due to some other reason. I know that my LO didn't fit in too well in a regular AL. She was actually, only 62 years old at the time, but, she seemed to not fit in that well with the younger or older residents, though, she preferred the older ones who didn't talk much. I spoke with the Social Director about involving her in activities. She tried to help. She even asked my LO if she could help with certain games, by handing out cards or something simple that made my LO feel needed. This did help a little, but, then I noticed that what the matter was seemed to be that my LO was not able to follow the conversations of the other residents. She could not remember names, she was not able to carry on a conversation and since the others did, it made her feel like she not part of the group or very social. I might check to see if there are limitations that your mom has that might be the actual cause of her feeling uncomfortable. I believe that is why my LO had isolated herself at home prior to becoming so affected with dementia. I think that she was embarrassed about forgetting what had been said right after saying it and never knowing anyone's name after being introduced many times.
I suggest that you time your visits so that you can attend activities with her. Bingo, crafts, sing-alongs, live entertainment, tea parties, happy hour -- whatever is available, sample it with your mother. After she settles in and is doing some of these things on her own that will be time enough to take her on outings and spend one-on-one time with her. But to begin with, help her fit in.
(It is too bad you couldn't have given the day care option a try. That is often a great alternative to full-time placement.)
Having her home with full time care might be a preferable option, but the financial price is very high and the responsibility for you (or some family with primary care duty) can be overwhelming. One of my cousins arranged three-shifts a day of carers for her mother. To cover all 21 shifts a week took at least 4 people. She was extremely fortunate to be able to hire women from their small community that were all known to her mother. Mom would never agree to "babysitters," but she never caught on that these women weren't just dropping in on social calls! My cousin lived in another town, worked, and did some traveling. Even with the community women often arranging their own schedules and substitutes, Cousin found that handling last-minute sick calls and schedule mix-ups, and keeping track of hours and payments was at least another part time job. Dementia progresses. Always. Eventually my dear Aunt needed the consistent round-the-clock supervision of the local care center. She played the spoons in the kitchen band!
At-home care can be very comforting to the elder. But it is not always the best option. Even when it is a good option now, it might not be in 6 months.
Give the adjustment period a lot more time, and actively help the adjustment. If six months from now AL still doesn't seem suitable, reconsider the options then.
What may help is a customizing her care with the resources already available to you; whether it's a van that has other able bodied men and women to go to classes around the area (senior services on the web may provide suggestions and resources you aren't familiar with) that can provide a "get out of jail' card for her during the day and make it easier for her to rest at night (hopefully due to all the activity she engages in during the day).
She may need that over having round the clock care: I'd look into activities you know she enjoys and she if can join the classes she may like. (with the illness, restlessness is a problem).
Then, at night, where the restlessness and confusion can be at its worst, if they don't already have someone that can check on her, then the idea of a nurse to stay with her overnight and keep her confusion at bay may be in order, which may cost you less in the long run over a 24-hr round the clock care. Because she lived with you, you know what time frames are the worst in her mind and may be able to tailor a watch around those time periods during the day when you know you aren't available.
Sometimes, they just want someone they recognize in the house to keep the hallucinations at bay; finding those that she can relax with will go a long way to help you (with your peace of mind and level of worry) and her (for her confusion and wanting a quality of life.)
You need to give your mom time to adjust and make some friends that are on her level. Once that happens, she will feel more like she belongs and is at home, instead of at a facility. Good luck!!!
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