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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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I wanted to say really quickly that, of course!, many of you already said to go meet with the assisted living staff. I didn’t mean to make it sound like some kind of “new idea” that the nursing home placement woman suggested this.

I guess I have been afraid of having that formal meeting, because the communication with the lower levels of the staff have not always been very positive. I mean, I am going to go to the ALF management, and tell them it’s my intention for my sister to stay on as a Medicaid pay. While they are certified and expect that, in the back of my mind I kind of assume that they will be looking for ways to get rid of someone who isn’t paying the full tab. Especially someone who is only 60, and will likely be there a long time. I have read on this forum about the many stories where the AL finds a way to get rid of the Medicaid beds.

Anyway, the fact that the placement specialist knew this particular facility, and insisted that they were fully up to the task of caring for my sister, clarified things for me a little bit. I will continue fighting this battle one step at a time. If they do try to get rid of, my sister is a Medicaid pay, I will just cross that bridge when I come to it.🙁
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I have a short interim update, as I slowly move forward with pieces of my puzzle.

I said below that our elder care attorney linked us with a woman who is a nursing home placement specialist. She said that from what I told her about my sister, there seemed to be no reason that my sister couldn’t stay in AL. And probably for a fairly long time, especially if her health began to stabilize. So in her opinion, no need to transition to a NH yet.

She suggested I have an official meeting with the AL staff to talk about my sister’s situation. I mentioned below that my sister had been in the hospital for three weeks with a staph infection. I called the ALF and set up a meeting that will happen next week. We wanted to see where my sister landed after she was healed up from her stay in the hospital, so I have not had that meeting yet.

But I did contact a very small Christian Home Care company. I asked about coming into the AL to do bathing and light housekeeping. They have been wonderful on the phone. As a very small company, they are much more unstructured than some companies. We can hire them for one hour a week, or consistent visits every week, or for rides to the doctor as needed… They are very flexible, and do not have the minimums that the larger organizations have. I am beyond thrilled to have found these people.

It is my plan to stop all of the support from the ALF, except for medication management. We have hired this agency to begin coming in twice a week; one day for three hours (to bathe and do light housekeeping) and another day for one hour to just help with bathing. They will do laundry, take my sister to appointments, help her straighten up her apartment and do dishes, change her bed, and do a bunch of small things that the AL staff will not do. The agency person will function more as a companion than just an aide.

I am posting this especially because hiring this agency to do the above mentioned things will cost roughly half of what we would pay for that care level at the AL. Plus, the agency is much more flexible with what they will do. They will do what is needed, and not just what is on the chart! I guess that the aides at the AL are offended by being asked to do the small things that my sister asks, like put dishes up on the shelf that she can’t reach (she is 4’ 9”) or take boxes to the trash bin that she can’t manage well with her motorized wheelchair. Honestly, it has been a wake up call to see how little general support she gets in that regard at the AL. I am sure the expectation is that friends or family members will help with those kinds of things (I’m in another state). But changing the sheets on the bed? Even my MIL’s independent living facility changes the sheets every week! My sister cannot do that on her own.

We have had the added issue of the AL not following through properly with things like weekly laundry, and twice weekly bathing. Things come up, and those things don’t happen. But of course we are paying for them. So having someone come in from the outside specifically to do these things on a schedule will hopefully work much better.

For anyone who is interested, the cost of this home care is $37/hr for the first two hours, and $33/hr for three hours or more. They charge their usual hourly rate for driving to appointments plus $.65 a mile. While they have both people who are certified to do personal care, and those who are not, they do not charge differently. And both can do things like drive to appointments.

Because my sister kept asking for help with little things in her apartment that were beyond just laundry and bathing, “bothering the staff,” the AL had put her at care level 3, which was $2100 a month. We could have stripped things back a bit and gotten my sister to care level 2, which is $1400 a month. But I think that we will be able to cover everything the AL was doing for under $1000 a month, plus have companion support. And rides to the doctor! I will post again next week!
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Reading your thread WearyJanie 😔. I am weary too tonight.. sending my (((hugs)))).
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WearyJanie Feb 1, 2024
Sending hugs too! Seems like a never-ending road sometimes… ❤️
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I am sorry I haven’t been back to my question in a while; my sister has been in the hospital for several weeks with a bacterial infection. They also looked into a range of other health problems she was having, such as high liver enzymes that were caused by one of her medications.

And I was so hopeful that they would fix some things that would help her health, and she would go back to her assisted living facility, and feel like getting engaged. But she has been back there 10 days, and is doing almost nothing to take care of herself. The care staff is extremely frustrated, and has begun to push her to be more self-sufficient. This caused my sister to completely melt down. My brother cleaned up her apartment before she was released from the hospital, hoping to get her ahead of the game. But she is calling the staff and for nonsensical things, like getting things off of the shelves that she cannot reach. Rather than making things better, the hospital stay and treatment seems to have enabled her to spiral deeper into victimhood.

And so my update… I began the process of planning her care with our elder care attorney. He is very methodical, making a plan, and doing one thing at a time. First order of business has been to get paperwork signed for a living will, a standard will, and the POAs. Her hospital stay put a wrench in the works, especially since she had a contagious staff infection, so the lawyer did not see her for a couple of weeks. But it is done now. He has good contacts in that town, and is sending me the name of a Medicaid coordinator that he has worked with in the past. I will pay whatever it takes to get proper guidance and counsel from this person. I am hoping she will know about the kinds of places that many have talked about on this board that I was not able to find myself.

My husband has refused to have any involvement in the situation at all, especially financially. I was able to receive a partial distribution from my mother’s estate, and now have the financial wherewithal to invest in some professionals to move forward with things like this.

I will update more as I go! Thank you all for the good counsel here. Moving forward one baby step at a time. And trying not to let this situation continue to derail me emotionally.
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I am curious as to what your elder care attorney said. My father has a very similar situation as your sister. he is currently in an independent living that will transition to assisted and then to end of life if needed. He pays for some extra assistance as he can barely walk as well and needs help with bathing. Good luck to you as i know these are not easy decisions to make even if we know they are for the best for our family member.
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WearyJanie Jan 16, 2024
It sounds like your father’s situation is much better than my sister’s. If I had to do over again, I would have put my mother and sister into a facility that transitioned all the way through nursing home care, but they refused to go to the one they could afford. This assisted living facility is designed for those people who maintain pretty good health through the end of life, and if your health fails, you need to leave. this also means there isn’t anyone at my sister’s facility to really help me through the process of planning what the next step is. In the facility your father is in, they are fully prepared with a plan if his health fails.

What a difficult learning curve this has been. There has been a huge amount of trauma attached to this situation for me, and that has made it especially hard to navigate. I got to the point where I was just shutting down from the stress. It has just been crazy.
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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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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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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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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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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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Consult with your elder care attorney and also connect with a local State social worker to find out what your sister's options are as a disabled aging person. The facility where she is living should be able to tell you how they assess her needs and what level of care she needs, if you trust them. Are you in the same state as your sister? Can you find a place closer to you so that you can oversee her care and visit more often? I'm surprised that her residence allows her to have a disorderly room. They are responsible for the cleaning and safety of her room. You may have to help her de-clutter. All the best to you!
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WearyJanie Jan 16, 2024
My elder care attorney is putting me in touch with a Medicaid placement specialist. Sister is 10 hours away in another state, and when she and my mom were originally placed together in this assisted living facility, they insisted that they wanted to stay near friends and family. Mom passed away two months after they moved in. My sister does have a couple of friends in the area, who are healthy and in their 60s, but they work and have families, so she does not see them often— but often enough that it makes a difference. But they do not participate much in her care, and of course I would not expect them to. But it is a big deal that they visit near holiday time, and take her to lunch every now and again.

The biggest problem with placement is that there will be no money. My sister had just enough money to be a self-pay at this place for two years, at which time she would have been able to stay there on Medicaid. If she moves, it will have to be to a Medicaid facility. But I think that’s how it needs to be. I am not sure I want her to be very near to me. I am not interested in setting my own family’s needs aside to go clean up her apartment for her. Most of her physical issues are due to a lack of self-care, in my opinion. She literally lives on milk and candy, even in the assisted living facility where good food is provided. Her emotional issues too are like a black hole. It has been like this her whole life. I need to be careful to not let her damage my own family and marriage, and that would be a very real possibility.
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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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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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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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The AL will tell you when they can no longer handle her. Being obese means 2 person assist and this is usually where an AL draws the line.

I think Sis would have no trouble getting into a LTC facility with her problems. I would use her money to find a nice one which excepts Medicaid. Getting her in on private pay will make it much easier. The one thing, though, she will be sharing a room unless u want to pay for a private on, which will cost more.

Sounds like Sis was spoiled by Mom. I so get that she would be happier in LTC because then she has to do nothing for herself. I always worried about my nephew in this respect but have come to the conclusion, he would love it. Everyone waiting on him.
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WearyJanie Jan 3, 2024
Unfortunately, this is not just a case of being spoiled by mom. There is much, much going on here, and has been for my sister’s whole life. Nobody wants a life like that, believe me. You wouldn’t trade lives with her for anything.
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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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That facility may have::

Aging In Place

you may consider getting private care at this facility a few hours a day or a few hours every other day.

there are Board & Cares=6 Packs.

you answered your own question.. yes her health needs have changed and care needs need to be changed.. somewhere. Somehow.
its ok. I hope you are locally close to her.
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WearyJanie Jan 2, 2024
Unfortunately, no, I am not near to her. I live out of state. My parents and my sister both lived in my hometown all of their lives, and refused to leave. She has several friends there who, because they are also in the early 60s but are healthy, do come to visit and spend time. My sister would like to stay in town. I guess I will think hard about that when she goes into a nursing home.
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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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