My 76-year-old aunt suffered a stroke in September and was sent to a nursing home for rehab. She has no assets or savings except a car, no home, no husband, no children, and her income is just slightly above the Medicaid limit. She lost her apartment in a flood just before the stroke and all her belongings are in storage.
At the time she was sent to the SNF, she needed help with ADLs and was newly diagnosed with diabetes requiring twice daily injections that she was unable to do herself. The situation at this nursing home has been highly chaotic. They are not only being investigated by the state for numerous violations, but COVID related issues have made it very difficult for them to retain enough staff and it's almost impossible to talk to a social worker about her case. Her family never got a chance to meet with admissions when she was brought there (the hospital was eager to free up their beds because of COVID pressures, so they basically hustled her off to the only bed that was available for someone of her income level).
When she was admitted they seemed to think she didn't need a nursing level of care but we had no solutions. It was very unclear to us what her prognosis actually was. COVID meant we couldn't get in to see her really. They said she had low BIMS score but with aphasia it wasn't clear if she had real cognitive difficulty caused by stroke, or just trouble responding to questions. Since then, visitation has opened up and I see her once a week for a few hours. It's clear she can never live on her own again, but she gets around safely with a walker, gets dressed well, and even washes her own hair in the sink. But at the time of her stroke she had no home and there were no funds for her care and we weren't even sure what care she would need. She is now Medicaid pending at this nursing home and is paying the NAMI, but I don't even know if she is going to be approved. (If she isn't approved and the home comes after her for the back room and board, they won't easily get it because she just has no income or assets to speak of.)
I am confused as to why at first they wanted us to put her in assisted living but then they backed off and now are uncommunicative as she is in Medicaid pending status. I feel like they want to not re-assess her because they want to collect the Medicaid (and not lose the back room and board that she is unable to pay).
I *do* know that I don't want her at this nursing home any more as the care is very substandard, the place is dirty and miserable (and constantly in the news for violations of the worst sort), and she isn't even getting rehab any more, and I visit her weekly and have noticed she is becoming more withdrawn and less focused in her speech and memory. COVID has decimated the staffing levels there, and I don't know how well they will bounce back.
Bottom line: I believe she is accomplished enough with basic ADLs (washing, dressing, phone dialing, eating) to be able to be taken into our home. With the addition of a stairlift she will have access to a senior friendly bedroom and bathroom. My family is on board with this idea. I know we are not quite physically ready yet with a space for her but I don't even know if we are "allowed" to take her because she is Medicaid pending. (She does have supplemental Medicare which would cover her medications probably)
I just haven't been able to find any reliable help or advice from the medical community because COVID means no one returns your calls... I want to change her situation though my family cannot afford assisted living for her, we can afford to take her in ourselves (and we know her well, she used to live with us many years ago so we're aware of what interpersonal dynamics there might be).
Advice? Where do I begin to change this situation. I am currently working on arranging a home visit for her but again, it's IMPOSSIBLE to get anyone on the phone at this institution.
--In the NH she is at least able to get exercise walking in the hall. I have my concerns that she will not have opportunities for movement here in my house, even though a stair lift would enable her to move between floors. Although her basic mobility is surprisingly robust, I wonder if the small house would be detrimental to that. Do I have time to take her out for walking exercise? Probably not.
--My aunt was an LPN and understands how to give diabetes injections, but has never had to give them to herself (she gets time release insulin twice a day at regular intervals). She claims she wants to do this, but I have to look at her track record of looking after her own health (not good). I know how to give these injections, but I know that I cannot commit to doing it day in and day out. My mother claims she will help, but I honestly am not sure she can be depended on.
--My aunt would have a quiet environment here, but not an emotionally neutral one. Her sister (my mother) doesn't always get along with her. They'd be on different floors, but again, would I want my aunt to ever feel trapped in her room to avoid arguments?
While waiting for COVID restrictions and staffing crises to lessen, I am trying to stay engaged in intelligent decision making, but it's hard. I am getting an estimate about how feasible a stair lift installation would be here. I am also planning to take my aunt out of the NH for a few hours home visit with us (we live 15 minutes away) once the NH allows her to be checked out, to see what that is like (and to give her a break from the borderline hellish NH she is currently in).
Yeah, that was fun. Her Medicare paid for 10 days of rehab. For a 76 year old recent stroke victim. She was given 10 days to "progress." Probably for about less than an hour a day. The Medicare coverage ran out before the NH even sent us the admission papers in the mail 9 days later.
That said, the NH seemed to be giving her about 7-8 weeks with a speech therapist who was decent. My aunt says no one is giving her any kind of attention now.
However, these are all valid questions and they have been on my mind. My aunt is not demanding to come live with me; what she values is a quiet place where she can just watch TV all day. In the nursing home where she is, there is nothing but screaming in the background. She lived alone her whole life, but even before the stroke we knew she was less and less able to handle it, and I had tried to start a conversation with her about alternatives before the flood and stroke disrupted that plan.
"The more you spend on physically getting your lovely home to resemble an AL" - actually, my home isn't that lovely, but thanks.
Part of the problem is that my aunt received a very questionable assessment when she was first in the hospital and then when moved to the terrible NH. Her low cognitive score may have been artificially low because she has anomic aphasia from her stroke, so I worked hard to reach out to her speech therapist and get more appropriate testing done. The resulting score was somewhat better (I wasn't score shopping, I just wanted to know, because she didn't seem all that out of it when she was around me). Unfortunately, she was already rejected from another nursing home because of the initial low score. This is a woman who can ambulate well with her walker, does safe transfers, isn't falling, feeds herself, washes her own hair, I don't understand why another nursing home would reject her like that. (I do believe she has enough of a cognitive problem from the stroke aftermath that precludes her from ever living by herself again.)
Then again, COVID has wreaked hell on the nursing home staffing levels here and it is impossible to find open spaces, or even anyone who will return calls. The nursing homes here aren't very good anyway. I had been hoping to get her enrolled in a PACE program where Medicaid pays for nursing level of care and keeps seniors in their homes (or perhaps in our home), she would go to a day center to get care. But if she doesn't need nursing level of care, she won't qualify for that either.
Nobody had power of attorney for my aunt when she had her stroke. In the hospital she wanted to sign the papers, but the hospital was unable to provide a notary (COVID, again). The nursing home refused to provide a notary because of her low BIMS score (meanwhile, the corporate headquarters accepted her signature on a financial form!). We couldn't take her out of the NH to see a notary and could not secure a traveling notary (COVID restrictions, again). Guardianship would take forever (our lawyer advised us not to bother since she could sign her own checks just fine) and I do not believe a court would rule her incompetent, as she is very borderline and improves in her clarity weekly (or was, until all the staff thinned out at the NH due to, you guessed it, COVID)
Not to drag on with this (you can read the saga elsewhere) but I just am feeling hopeless that there is any good place for her... and I can't place her in another city or else I'd never get to see her. She is aphasic. She needs face to face contact with familiar people in familiar surroundings order to improve her speech. She's not getting any human contact in the terrible NH any more. She can't afford assisted living. We can't afford assisted living. We can't get anyone on the phone to ask for help right now. Calls are not returned. COVID has affected EVERYTHING here in NY.
I *do* want an alternative to her being here at home, and I am certainly not set on this idea.
Never take what an employee at a NH tells you. These people are hired off the Street and given minimal training. They have no idea how Medicaid works. I don't even trust SWs. I have questioned a few things they have said too. Remember, the NH is paying their wages.
And what the NH won't tell you is that Medicaid will backpay them from the time they file, so any talk about out-of-pocket pay for the days not covered by Medicare is just a money-grab attempt.
Consider other financial assistance - Veterans Administration, Social Security, insurance policy, - is there any reimbursement from the flood? Benefits.gov is a good resource to see what government resources may be available.
Definitely consider the emotional and physical cost of taking auntie in, especially without outside help. Best wishes to you.
When the Medicaid comes through, then you can look for another place for her. In the meantime, she has a place to stay for free. You can serve her by visiting often and being her advocate there for as long as it takes for Medicaid to kick in, after which point you can move her to a better place.
This is essentially what I've been doing, but I have no idea when we learn if the Medicaid process is done and if she's been approved or not. I don't even know who her Medicaid case worker is. The family could not file on her behalf because we didn't have access to any of her documents (many lost in the flood just before her stroke). No one has power of attorney for her (oh how we tried to get it done in the hospital, she wanted it).
Who should I call to find out about her Medicaid status? The application was made in October. This nursing home yanked her upstairs while I was desperately driving across town to follow her from the hospital, bounced me from social worker to social worker via phone, I never had a chance to meet with ANYONE about her admission to the NH back in late September, the NH only sent the Medicaid application 9 days after she was admitted. Everything was locked down due to COVID at the time (September-October).
If I sound clueless, it's because I am. No one at the hospital helped us, no one at all has helped us, and my aunt can't really speak for herself because her aphasia makes her choose the wrong words.
Regarding PT, if she has stopped progressing, they stop prescribing it and thus there is no coverage for it.
Medicaid is a state-run program so what it covers can vary by state. You should inquire to see if AL is at all covered, or there is an Elder Waiver program for your county.
If she lives in your home and eventually requires 24/7 care, this will be far more expensive, time-consuming and emotionally taxing than you can imagine, depending on the trajectory of her life (and no one can know this in advance).
I won't tell you to not move her in, but please listen to the advice from those who will tell you their personal stories of woe once they moved in their LO. No one can ever know how you will eventually be orbiting around her: she becomes incontinent; she no longer remembers how to operate the stair lift; she wanders out of your house at night or gets into your car to drive away; she requires 1 or 2 people to get her out of bed or a wheelchair (and then where will she live in your home?); she refuses to stay on her diabetic diet; and on and on.
Start with the fact that your home is not single level living; are your doorways wide enough for a wheelchair? If so, can she be rolled up to the toilet? How will she reach the sink or shower? How will you get her to your car and then into and out of your car if she is "normal" weight? Will you be able to install ramps? See, there is more than just the here-and-now of her condition. Many a well-meaning and loving family member has tried to make their LO happy and protect them by bringing them into their home -- and it can be done, but no easily and at a cost. Do you have a spouse and children living there too? Will they be thrilled to be assumed into a caregiving "job" every day? Lose their privacy? Become second-fiddle to your attention to your aunt?
I was raised by my mom and her 2 older sisters. One of my aunts now has mod/adv dementia. She is in no way the same person from even 10 years ago, thus "interpersonal dynamics" no longer apply.
Please read what others post about what you are about to commit to. If I were in your shoes I would find the best local NH/AL for your aunt that accepts Medicaid and move her there. My MIL gets excellent care in a wonderful NH on Medicaid. They have activities, events, visiting pets and musicians, and she gets far more social interaction than she'll ever get cloistered in the upstairs of your home unless you intend to spend your days being her "entertainment committee" (which happens as they lose their memory). I wish you much clarity, wisdom and peace in your heart as your work out a solution for you both.