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My sister will be 61 in March, but to look at her, you would think she is 80 and in poor health. She is currently in an ALF; she moved there 10 months ago with my mother, and my mother passed away shortly after.My sister is on SSDI, and has several significant health problems, some of them neurological. She has deformed feet and cannot walk well; she uses a motorized wheelchair, paid for by Medicaid, to navigate the ALF. She has severe facial pain that is managed with meds, and is a constant fall risk because of weakness in her legs and dizziness. She is on seizure medication, which the doctor hopes will help with her instability. She shakes very badly, both her hands and the rest of her body. Sometimes to, that has been diagnosed as essential tremor, but not Parkinson’s at this time. I do expect an eventual Parkinson’s diagnosis. She is also morbidly obese, and has never been a very competent person. Without someone literally yelling at her, she does not take care of herself or her surroundings. Her AL apartment is a total dumpster fire. Since my mom passed away, she does nothing. This is not dementia, it is a different kind of competency issue.So that’s the background. My question is this: at what point should I consider a nursing home for her rather than AL? I chose this facility because after two years of self-pay, the facility will transition a resident to Medicaid. It was my hope my sister could stay there for the rest of her life. She has not even completed the first year, and I am seeing that soon she might not be competent enough or healthy enough to stay in this facility.I have been reading articles here, and it seems that when you are no longer able to perform your ADLs, it is time to start thinking about a transition to a nursing home. I think she is reaching that point. In the past, she was able to navigate her apartment without help, but it is looking increasingly like she will even need help making it to the bathroom. As I read, it looks like the ability to get yourself to the toilet is sort of the dividing line. Because of inheritance money, my sister would have been able to be a self-pay just barely to the two-year mark in this facility. So we were cutting it close. I think some people have said on this forum that the ability to be a self-pay even for a few months might get you placement in a better Medicaid facility. I am wondering if it is better to get her into a Medicaid NH as soon as possible, as she could be a self-pay at least for a while. I’m sure most here won’t understand this, but I think my sister would rather be in a nursing home where everything is completely taken care of for her, than try to continue living on her own. Especially if she could blame her situation on poor health, and not incompetence. She knows she should be able to keep up with these basic things, but for whatever reason she’s not able. This has been a lifelong problem. She is not even going down for meals. She orders junk food from Amazon, and lays in bed and watches TV. Again, her apartment is a mess that’s hard to even describe. Who makes the call as to whether a nursing home is required? Do I need to contact a social worker in her state? I am 10 hours away. I have an elder care attorney.

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Typically a facility will inform you when the care needs of the resident exceed the ability of the facility to properly, safely care for the resident.
At that point they will suggest the appropriate level of care needed. I.e., Memory Care, Skilled Nursing.
If you think it is more than the staff can manage now you can request a meeting with the facility nurse of administration and discuss options.
(If you have seen or heard anything that makes you feel that your LO is not being cared for safely say something ASAP.)
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waytomisery Jan 3, 2024
This is exactly where we are right now . Waiting for the phone call from AL that FIL needs to be moved, he will not be on board and will flip out .
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I would speak to the facility where sister is currently.
I am, in all truth, surprised she can currently be in ALF.
They will tell you what their capacity is to care for her. In my brother's facility she would not have been kept due to her needs taking so much caregiver time.
I would also ask you attorney for options for Sister, as I agree with you that the time is coming before two years.
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WearyJanie Jan 2, 2024
Thank you, AlvaDeer. So my elder care attorney should have knowledge about how she will be placed, and how to do that? That’s good news! We retained him specifically for estate planning for my mom, and then to navigate the probate process. I wasn’t clear how much expertise an elder care attorney would have about nursing home placement. I will contact him today!
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IMO, you need to get her moved to a nursing home as soon as possible. She is morbidly obese and ALF staff are NOT responsible for getting her back and forth to the toilet.

How is it that her apartment is a disaster? I'm surprised that the housekeeping staff hasn't informed the director about the state of her apartment. Or maybe they have?

Talk to the ALF director and get a transition plan going to a nursing home. Your sister is only going to get worse and her needs are only going to increase the longer she is enabled to do nothing.
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WearyJanie Jan 3, 2024
This is what I was thinking—the two-person assist cannot happen in this ALF. We will see if she rebounds, but as others said, it likely won’t be for long.
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We are fortunate that she has a very good, caring staff. I am not concerned about her care there. I will plan a trip to her town to talk face-to-face with the nursing staff there and my lawyer and get a plan in place. Sigh. This has been a long couple years.
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waytomisery Jan 3, 2024
I hear ya, you are doing a great job . It is exhausting and frustrating when they are unable ( and/ or too stubborn ) to do some simple things that would allow them to stay in a nice AL . It’s sad to have to move LO from a nice AL . We are going to be dealing with this soon as well . (((Hugs)))
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I am sorry this response is sent so late. But, I am surprised that no one thought about hiring someone to come and sit with her. Like a companion. When my MIL was in AL that is what we did. She helped motivate her and straightened up her apartment. She became s very close friend. It takes a lot of courage to go down to eat with a bunch of strangers for some people. It’s kind of like going to a restaurant by yourself. The downside is, we’ll, it’s an added expense. But if she does well and likes the person she has as a companion, then her stay will be much better and Medicaid will take over. You already have the faith in the facility, they’ll let you know when she becomes too much for them. Hope this helps. Call “A Place for Mom”. They’re wonderful. They’ll help with finding a companion
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WearyJanie Jan 16, 2024
I was just thinking about this very thing last night! Thank you for suggesting this! I was worried the facility might not allow an outside person to come in as an additional caregiver. Even if it isn’t a long-term solution, it might be short term… I will look into this some today.
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WearyJanie: It is quite surprising that your sister remains at the ALF when in fact she most likely requires a SNF. Also, it is appalling that the staff has not noticed that her living quarters are in such a state and reacted accordingly.
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WearyJanie Jan 16, 2024
Well, I think they have noticed that her place is in a terrible mess, and they are just avoiding her. And I don’t blame them. I am avoiding dealing with it too!

After my mom with dementia passed away, and my sister had been caring for her to the extent she was able, I think we were all hopeful that my sister would stabilize emotionally and begin to get herself on track. Especially as she is now living in a place where all of the IADLs were taken care of for her, and also meals and housekeeping. That just hasn’t happened. I think I have officially given up hope. It’s time to make some very hard decisions.
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Assisted living is for people who can - and will - take their own medications with limited "reminders". They do not need a nurse for their care.

Nursing home is for people who can not take their medications without the assistance of a nurse. They do need a nurse for their care.

If in doubt, talk to her doctor about your concerns. He/She can help you with the determination of "when".
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waytomisery Jan 7, 2024
Where I live medications are given by the nurse and they will do some minor dressings in AL . And there are aides to help with toileting and bathing .
Each should check what AL offers in their area.
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I would move your sister to a SNF. I, like others here, am very surprised that the AL keeps her there due to the level of care she needs, as well as the deplorable condition of her apartment. Maybe they are not doing a lot of care for her. My mom doesn't get things done extra unless she or mostly I ask for it. If she is not asking for help, they may be incorrectly, IMHO, leaving her to her own devices.

As my mom's dementia as well as her physical health both deteriorate, I wonder which type of care her AL is going to eventually suggest to me - MC or SNF?? I'm taking bets. JK!
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WearyJanie Jan 16, 2024
I posted above that I am hiring a Medicaid placement specialist to help me figure out what to do. It is becoming obvious to me that the staff at the a AL is very frustrated with my sister, and are avoiding her. They have also raised her care level significantly. So I think they might use money to try to push her out. Which is understandable… It would be very hard to be an aide who starts getting irrational requests from residents, treating you like a servant rather than a professional. I suspect that is what they are feeling. And my sister is not socially aware enough to know the boundaries.

I wish you luck with your mother! I will be interested also to see what direction the Medicaid placement specialist goes with my sister. Memory care does not seem appropriate to me, it is bad health and low competency. But I am not sure what is required for acceptance into a Medicaid paid nursing home. I am so happy to finally have some financial resources to work with as I address this problem. A difficult one for sure!
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Maybe I missed it, but has your sister been evaluated for depression? Some classic hallmarks there, over and above the noted past behaviours you stated.
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WearyJanie Jan 16, 2024
I haven’t been back to this board in a while as my sister was in the hospital for several weeks… Yes, she has been diagnosed with major depressive disorder, and has been on heavy duty anti-depressants for many years. And yes, she has also been seeing a psychiatrist for years as well. And things continue, and nothing changes. It is difficult for doctors to work with people who refuse to try to help themselves, unfortunately.
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You should talk to the nurse in charge at the ALF and ask for a meeting with the care team.
No communication might yield no action. But the nursing staff are the best ones to assess her needs and recommend ongoing treatment options. A meeting will give you an opportunity to voice your concerns, and have an open discussion with health care professionals. This should result in a care plan which you all agree to.
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WearyJanie Jan 16, 2024
Thank you for your reply. My sister was in the hospital for a couple of weeks, but now has been back in the facility for 10 days, and I think it is time for the care team at the facility to give me their thoughts on whether she can stay there. And I know the answer is no. It is hard being far away… I play phone tag with the busy nursing staff, and emails sometimes just cannot communicate things the way they need to be. I got paperwork finally signed that desert nights my brother and I as medical POA, so now the doctors can’t speak with us honestly about her situation. I hope to get the ball rolling this week.
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