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.
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.🙁
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!
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.
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.
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!
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!
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".
Each should check what AL offers in their area.
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.
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.
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.
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.)
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.
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.
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.
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.