My aunt suffered a stroke last September and also lost her home (flooded out) at the same time. She was sent to a NH for rehab, but her Medicare refused to pay after 10 days and we had no safe place to bring her to. My mother was undergoing a physical and psychological breakdown at the same time and we had no safe place to take in the aunt at the time. In the interim she has been on temporary Medicaid at the NH (not Medicaid pending; she was approved retroactively to September 2021) while we have tried hard to arrange a living situation for her with us (getting my mom stable, cleaning up our house, everything complicated by COVID). I have taken aunt home for visits weekly and she has improved and I feel confident she will do well as long as we get her into a Medicaid funded MLTC. My aunt had no doctor at the time of her stroke so we are having to try to create a proper medical support system for her from scratch. That has been part of the delay.
The NH she is in is terrible and under investigation. We don’t want her spending another winter there when she has shown over the last six months that home would be a better place for her. I’ve tried to do this very deliberately and carefully and I think she is ready.
My question is how to initiate the discharge process and problems we might run into. My aunt has aphasia and mild cognitive decline from stroke but the nursing home keeps giving her competency tests that don’t take into account her stroke related language difficulty. She was never diagnosed with dementia at the hospital yet somehow they decided she has dementia because of her disordered speech. (More common than you might think) She wants very much to come home with us and her ADLs are such that I don’t even see how she qualifies for nursing level of care any more. No one has power of attorney (COVID kept us from finding a notary last year who could come into the NH) but we could get one if necessary during one of her weekly home visits. I am ignorant of the Medicaid implications however. She comes up for recertification in September. (My nightmare is that the NH will refuse to release her even though she and her family want her released, could that ever happen?)
It should not be this hard to get a stroke victim out of a NH when she never got the rehab she was there to supposedly get. I am just trying to anticipate what could go wrong at this point. We are hoping to get her enrolled in a PACE program.
As far as moving her out of the nursing home as long as she wants to, you want to take her as her POA I don’t see any reason or way for them to stop you. If they don’t have people waiting in the wings and hospitals to get a bed then I guess I can see why they might want to hang on to her but she’s a Medicaid bed and unfortunately even poorly run homes like the one you describe don’t have a problem filling Medicaid beds. I’m not sure why they keep testing her competency but it may be that they have somehow acquired MPOA or something for her and need to prove her lack of compentancy on a regular basis for some reason? I’m speculating here so please don’t take this thought as knowledge in any way, I’m not sure how that is handeled in NH when a resident doesn’t have anyone with legal authority. If you can’t get a DMPO I would insist she have a neuropsyc evaluation, these are specially credited professionals who I doubt would be attached to the NH in any way.
My mom also has aphasia post stroke, she regained what ADLs could be recorded as affected so quickly at rehab they couldn’t keep her as long as they wanted because what she really needed was intensive speech therapy. Anyway she to is left pretty much only with aphasia and when she had her NP exams they were right up front about the aphasia interfering with the results because it was often hard to tell If she just couldn’t get the right word out or couldn’t remember the word, problem solve etc. She has never officially been diagnosed with Dementia but we all know she absolutely has it. She is aware enough and able to affirm that something is what she meant or what she wants so her (or actually my grandmothers) attorney came to her rehab room and did all the official DPOA’s even though she wasn’t really able to sing her name with her former signature, still he know she was in agreement with what was drawn up and able to answer with a yes or no nod when necessary. So it can be done and would be a good idea even if you don’t need it to get her out of the NH.
If you can get DPOA and do that next outing I would then go to the admin of the NH and tell them your ant wants to go home and you plan to take her home under your care. You just need to make the proper arrangements and give them a heads up. If you aren’t able to get the POA I would still go in and say the same thing. This is when you will find out if there are roadblock and what they will be so you can find a way to overcome them.
My suggestion anyway
"My dad passed 3 years ago and last year my mom underwent a precipitous mobility decline and her narcissistic side came out full force, to the point where I am physically, mentally and emotionally exhausted... "
"...honestly I just wish I would get hit by a truck most days so this could all be over."
Re caregiving you wrote: “it’s not an 'honor,' it’s a demeaning sacrifice of yourself for ungrateful people who don’t care about you. At the end of it all, you are left without health or finances, wishing to just die."
Yet you seem to be planning to bring your aunt home ASAP, correct, to your home (or, rather, to your mother's home where you live, correct?). You also wrote that your aunt would be on one floor and your mother on another. So you'd essentially be running a board-and-care while working a job to provide for your future.
It seems that taking on the add'l burden of your aunt living with you and your mother would send you pretty quickly to your breaking point, From your previous posts, it sounds like you are nearly there just taking care of your mother.
I worry for you...
I am worn out from dealing with this substandard nursing home on top of everything else. Sometimes the only choices open to you, are both suboptimal ones. There are literally no “good, smart” choices here. There is no choice that lets me go on merrily as before (which so many people on this board seem to want) and where I won’t incur stress and expense. There is no choice that will allow me to “live my own life” yadda yadda. Sometimes life gives you shitty choices and the only way you can “live your own life” means making whatever choice is most conforming to your inner values. It doesn’t mean the choice will be EASY or even OBVIOUS.
All I know is that my aunt improves her speech and functioning greatly when she is here with her family. My mother also seems to calm down when her sister (my aunt) is under the roof.
yes, I’ve been under stress, glad you’ve done your “homework” on me. The stress is 100% caused by dealing with this nursing home that is under investigation, the staffing shortages in the nursing home, and the acting-out of my parent who is also trying to recover from issues.
I am legally unable to sell the family home and get them into any kind of assisted living that isn’t horrible. I could not even the sell the home with power of attorney (without taking my mother to court, also stressful). My mother has life estate and as the remainderman I can’t act in POA capacity and take over.
I have no family to assist me.
This is what it has to be, I have little control over the situation, and I would like my aunt to get out of an inappropriate (and truly suboptimal) nursing home that is not helping her live her life with dignity.
She had a left hemisphere hemorrhagic stroke, and was not expected to survive it.
I was a practicing speech therapist and realized after a day’s hospitalization, that her cognitive functioning was intact.
SHE indicated one day later that she wanted to go home, had an occupational therapist’s ADL evaluation, and left.
Your aunt should be entitled to HER tests, unless the facility is willing to declare her cognitively disabled according to their previous testing. If SHE wishes to share the results with you, that’s up to HER.
You are very angry with how this is gone down, but your anger may be a distraction.
If your aunt wants a comprehensive speech/language evaluation and is able to do so, SHE needs to request one. A good speech therapist (look for CCC credential after therapist’s name) should be able to figure out how much the lanuage issues are impacting on her overall functioning level.
My mother had the stroke at 85 and lived over 4 years by herself before a fall resulted in permanent disability.
You and she need to use the “experts” to her advantage. You’re on the right track already, but don’t let your anger get in the way.
This speech therapist now no longer works for the facility. Since my aunt was admitted, the facility has gone through 2 head administrators, 2 head nursing administrators, and my aunt’s original social worker has been sued for negligence resulting in the death of a patient. Early on we tried to get her transferred to another (somewhat less bad) NH… they refused to consider her because of the artificially low cognitive score the NH gave her.
This is a sweet woman who just wants to watch TV all day, see a real doctor and therapist and be able to go outside and see the sun once in a while. Her only crime was having a stroke at the same time she lost her apartment in a flood. (Oh, and being poor, which in America is a crime. She refused all help before. Her family would like to help her now.)
I WANT HER THE **** OUT OF THERE and to get the medical and therapy services she deserves and qualifies for. Yes, I’m angry and I’m stressed, you bet.
Just trying to get a sense of how much you are proposing to take on here.
She would need reminders to take her pills and help with nightly insulin (me).
She has “temporary Medicaid status” and the NH is not taking her SS checks, just a spend down since she makes slightly more than the limit for Medicaid (SS and small pension). So I don’t even think she’s been approved for NH level of care and either we do some kind of NH to home transition through PACE or we reapply for Medicaid or see what her Medicare will cover.
For someone of her destitute income level there is no alternative to a terrible nursing home (all the Medicaid NH facilities in this area are dreadful) or being in a home with her family. Yes, I have spent months observing her and thinking this through. I know that eventually she may need to be in a facility again, but she just doesn’t belong where she is right now,
and there seem to be no other alternatives.
(I realize people are trying to be helpful, but it’s dispiriting having to run the gauntlet of “You’re crazy” when someone doesn’t want to warehouse a loved one who can’t afford assisted living and who doesn’t BELONG on a NH ward with actual dementia patients just because she has aphasia.)