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Hello! My mom is about to turn 82 and has been caring for my adopted sister who is severely disabled for about 20 years. My mom doesn't want to stop being the primary caregiver for my adopted sister, but we are getting closer to that time. I was thinking that a perfect solution would be for the two of them to live in an assisted living or skilled nursing facility together. Separating them would be too traumatic for my mom. However, I can't seem to find such a place. It seems the issue is that it is hard enough to get one license -- to be a caregiving facility for seniors or to be a caregiving facility for disabled adults -- so getting two is nearly impossible to achieve. Are there other states where this is more commonplace? We are in the Southwest. Any suggestions would be appreciated. In the meantime, I am caring for both of them and it is getting to be quite a burden. I have a 5-year-old son who needs me! I have to drive my mom and sister constantly to doctors, clean the house, do the shopping, cook meals, do paperwork, pay bills, etc.... I have to go back to work, too, now that the pandemic is more under control (I have been working from home) so my time will be more limited. Help!

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I know a woman who had a Downs Syndrome daughter. Back when she was born, 1949, there were no programs for a child like this so they were institutionalized or family cared for the. Mrs. H chose to care for J. Mrs. H was able to get her and J into an assisted living with a promise J would be taken care of if Mrs. H died first. It happened that J passed before her Mom.

I have a disabled nephew who does well on his own with me overseeing him. I can see a family wanted to care for a child in the home but maybe should only be till 18 or 21. I feel challenged people need to be around like people. Being involved in activities with them in mind. More socialization. The parents age and then the siblings are expected to take on the care. There are resources out there for challenged adults. I think this is where you need to start. I will assume she has SS disability, Medicare and maybe Medicaid. Your County should have a Disabilities Department start there. See if there are group homes that will except her SSD. It may take a while to get her into one but it may happen. You and Mom can check them out. Assisted livings are private pay. Mom and sister maybe able to share a room, but their care costs will be separate. Would there be money once Mom passes? If not then other decisions will have to be made then.
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I live in Southern California, and when I was looking for a MC for my mother, the local Meridian property in Anaheim Hills had an assisted living and MC all on one property. When they gave me the tour, there was a mentally disabled woman in the MC, and they told me her parents were in the assisted living section.

I don't know how common that is, but I guess it is done in some places. Honestly, I don't think it was fair to the younger disabled woman to be in there with a bunch of old people, and treatment for mental disabilities is different from what a place would do with folks with dementia or Alzheimer's.

As someone else mentioned, perhaps a board and care home might be the best option.
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If you can not find an Assisted Living facility that accepts disabled adults then I recommend a board and care facility.

These will typically accept any adult that requires care, to a certain degree.

Depending on what your sister requires for care, her behaviours and her ability to function, you may have a difficult time finding a facility that will accept her.

I would start with a needs assessment. Any facility should be able to provide you this document and their doctors can fill them out. This is going to be required no matter where they end up. I would also find out what inoculations will be required. I know that you will definitely need a clear TB test for both of them and maybe other things because of the current situation.

What does your mom think is going to happen to your sister when she dies? Doesn't she care if she is settled in or are her disabilities pretty severe?
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Beatty Jun 2021
"What does your mom think is going to happen to your sister when she dies?"

I am in a similar boat. When I ask that - I get but *I am ok NOW*.

"Doesn't she care if she is settled in or are her disabilities pretty severe?"

Care? Yes. Plan? Seems not.
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Do you have an Aging Advice Service in your area? (I am not local, sorry but others may know for you).

I would think the right service or Professional could help find the location you need. A Social Worker specialising in Aging? Or does your adopted sister have a Disability Case Manager? Start with those.

It is a common problem - older parents who can no longer be the full-time caregiver for adult offspring with disabilities.

The same location would be ideal. Separate rooms of possible, so Mother can be involved, but also learn to slowly let go a bit. Your adopted sister also may benefit from slowly getting used to other carers, as well as her Mother.

I think your family is most fortunate to have your help & you wisdom. Very wise to be looking ahead & to aim for a solution to suit all of you, especially considering your young child. Many don't plan at all & it falls onto one to 'fix' when a crises hits.
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I had relatives who lived in exactly such a situation, a mother and her adult disabled daughter lived in assisted living together and shared the same space. It worked out well, as they were very dependent on each other. The mother died sooner than the daughter, and she had to continue assisted living on her own. Perhaps a hospital social worker can help you find a suitable arrangement. They’re blessed to have you
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