My wife is at a rehab facility after having suffered an intracerebral hemorrhage 5 weeks ago. They say she must be transferred to a skilled nursing home. She's 69 years old and in excellent physical shape. I want to take her home. She will be getting skilled care (OT, PT, and speech therapy) at home. Our home is completely set up to care for her. Though we have a basement, our house is a patio home with everything located on the ground floor. We have LTC so it will pay for unskilled care people. So we have both skilled and unskilled care coming in. My wife is barely begining to take steps, can swallow, and needs no medical intervention other than high blood pressure meds and perhaps anti-anxiety pills which I can easily provide for her. I'm the same age - 69 and in excellent health as well.

IF she goes into a nursing home, there's the threat of institutional disease, there's isolation, visiting limited to one person on any given day, there's a good chance of future lock downs with no visitation by loved ones. A nursing home is the last place on Earth my wife would want to be in. Hospitals, rehabs, nursing facilities look like a lost episode of the Twilight Zone with everyone's faces covered up - can't possibly be good for a person recovering from a brain injury.

At home, unlimited social interaction, safety, familiar surroundings, unlimited visitors, she'll get the same amount of OT, PT, and speech therapy and the skilled people won't have to wear masks in our home. Given this, could a rehab facility still force my wife to live in a nursing home against my wishes, with me serving as her medical power of attorney?

I've heard about the threat of Medicare not covering skilled rehab at home if there's a written document from the rehab facility that she needs a nursing home? Is there financial incentive for the medical world to look out for each other and force people to be in institutions to keep the income coming in? Do many people retain an attorney when something like this comes up? In my view there's absolutely no reason my wife should be going to a nursing home. But can a rehab facility say to Medicare that my wife must be institutionalized regardless of how ridiculous it might be? Who can overrule the rehab people?

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I have witnessed similar scenarios through the course of two generations in my family.

The hospital told my parents that my grandparents had to go into skilled nursing and I was told that my parents must. In all circumstances, our family members came home and lived out the remainder of their lives in their homes. Each time, we had to rigorously prove that the responsibility and caretaking needs would be met. It felt like an adoption inspection, with judging eyes so critically examining every move.

Was there a kickback? Probably. Do other people caretake at home? Yes, but home caretakers are definitely in the minority. Is it hard? Yes. Can you do it? Yes!!! Is it worth it? Emphatically, yes!

Fight for the right to bring her home. Expect that those home visit caretakers will continue to judge - they will.

Get help. You will need breaks. This will be hard on you. We used home health CNAs and were not reimbursed through Medicare. (I was honestly too exhausted to look into that).

I attended all Dad’s post-devastating-stroke therapy sessions (he had aphasia) and replicated the activities at home. He got much better than the doctors expected possible. We continued speech, physical and occupational therapy throughout the day and evening.

Every activity was an opportunity to get stronger. Instead of sitting and watching TV, we played checkers (when he was able). We worked so that he could read and walk again. He did.

I was told that he would get better over the course of 6 months (and then the progress would taper or stop) following the stroke so I made every moment count. It paid off.

Send me private messages if you need inspiration or ideas.
Helpful Answer (14)

No they can't but they act like they can.

Juse tell them this is what you both want done.

You can Check her out any time.

Believe me, DO Not Put Her in a Rehab, skilled facility as it's still a Nursing Home and they are Awful and the Rehab is a Joke! I know this 1st hand.

They are all understaffed and never answer their call button.

You can be left in Urine and feeces if you aren't able to go to the bathroom by yourself without help.

Call and tell them that you'll be checking your wife out today and to get the paperwork done that you're on your way.

Go get your wife out today!
Helpful Answer (9)
cherokeegrrl54 Dec 2021
Why do you ALWAYS have a negative answer here on the forum? I’m sorry for the apparent bad experience you had in skilled care etc, however, people come here for words of wisdom and encouragement as to how to help their LOs……so please, stop with the negativity!
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Mrbill - a few questions as I know you are under extreme stress after all you have both endured.

After my moms stroke she was in a skilled rehab (SNF) that was half nursing home and half SNF. Is this the type of facility your wife is in and if so are you saying that they are discharging her from the rehabilitation part and trying to change her status to being in the nursing home and no longer in the rehabilitation SNF part anymore?

If they are telling you she isn’t making gains to be covered by Medicare anymore and they are switching her into the nursing home part and will not offer her the same “much needed” therapies then I will say to take her home with the options you have given above.

If they are saying she is making gains but is no longer meeting Medicare guidelines and they will admit her into the nursing home part and attempt to give her just as much one on one therapy just under a different “living area” then I would try to stick it out as long as you can in that setting and get her a little further along with the people she is already working with.
I know you have said she is struggling with recognizing your relationship with her. We’re you able to speak with any of her team of drs in regard to this? Has she been seen by a psychiatrist yet? I would make sure you speak with her drs and get a better understanding of her fears and what they are doing to help her with it. Ask to speak with her neurologist and have a care plan meeting so drs and therapist are addressing this - if you are her advocate and lifeline then they need to be working with you so that you can provide and care for her needs going forward and they need to address this “fear” she has so as her spouse you are able to do so. Do you have other family members or children/friends that are part of both your lives that can also help speak with doctors or see if she responds differently to them? In hopes to find out why she is having this response to you so that they can see if it is from the injury or depression etc etc.

I did pull my mom from rehab and I did take her home and I am her 24/7 care. I am her Healthcare advocate as well as her POA. When I took her home it was actually due to poor care at the rehab - I did not feel she was safe - there were awful things happening at the rehab and I stuck it out as long as I could as I knew how important it was for my mom to receive the therapy that was provided. I am telling you that if you can - stay where she is receiving the trained therapy with all the equipment etc as long as you can. I wish I had been able to stay longer for her therapist - I just couldn’t sleep and be there 24/7 anymore (and my moms rehabilitation was very much delayed and slower at home than if we had been able to stay in rehab). It is a long long journey ahead - you need all the help you can get now to recover and build a really good team before your home. My mom was in an emergency situation when I had her transferred out of rehab and to a hospital and took her home from there. She was receiving poor care - neglect - medication mix ups - bruising and bumps on her head and when she was finally able to talk the tiniest amount “she told me they were treating her badly” and that’s when I got her out. I loved my moms therapy team but they understood - they heard the complaints - but they also knew by me taking her to keep her alive also meant her rehabilitation would be much slower and it most certainly has been the hardest thing I have ever done but I also did not have the correct team I needed when I came home. So if she is safe and you do not think she is in any danger and will receive PT OT a and speech then try to stick it out a bit longer while you get everything ready - build a good team - get the rest you will need and speak with all drs (and build an outside team of drs on your own beforehand). Including neuropsychologist/neurologist/home health etc.
So I did take my mom home - wishing you good guidance for the same ahead.
Helpful Answer (8)

Nursing Home can not over rule you.

Medicare has a site that shows the average of staff time a facility devotes to patients. The take the number of residents and divide by all staff with care credentials including staff that do little or no direct care (Director of Nursing, Assistant Director of Nursing, Wound Care Nurse, Office staff, etc).

Per Medicare, this usually is around 2 hours per resident PER DAY - not even close to cover needs of someone like your wife. I have resided in nursing home. It is long wait for help when pushing call light. If a patient can not call on their own, staff does NOT check on them. I have video of no one looking in on my husband who had fallen out of bed for an entire 8 hour shift.

I was begging for a shower after going weeks laying in soaked sheets.

I could go on for days They do not monitor fluid intake, nor do they change diapers with any degree of regularity.

Skilled Nursing sounds like someone is going to get care beyond what a non-medical person can do, NOT!

Medicare has robust home nurse care. Call them and ask. You will need to have Power of Attorney for Medicare to talk to you. Or get her doctor to refer a home health care agency and call them.

Good luck to you. My husband is in late stage neurological disease. He is at home. I know no nursing home in America can give him the 24/7 care I do.

You will need equipment and Medicare will cover.

Good luck to you both
Helpful Answer (8)
meanstoanend Dec 2021
Not only are helpless patients neglected but any member of the nursing care team who takes a stand will take the risk of getting slammed. Turning a comatose patient every two hours when you're assigned to them is called "fooling around" and the in-crowd can actively block the door on someone who is assigned to them with little or no explanation. Reporting neglect to the D.O.N. and threatening to call DHS is called "making us feel guilty," even when the neglect involves outright cruelty. People adhere to a rigid routine and can get slammed for not acting like machines so patients who are at risk of falling out of their wheelchairs are left unsupervised in their rooms. Members of the in-crowd, if they commit an act of negligence, usually have the others lying and cursing to protect them.
They play tricks with the work load on anyone who they dislike and top this off by lying about it, ie, "she WOULD NOT HELP US," or "YOU'VE GOTTEN VERY LITTLE DONE." They bully people into their shifts when the roads are dangerous and they wouldn't care if you were slipping and sliding down a mountain in the back woods to get to work. Most nursing homes offer no place for thier staff members to shower or sleep when stuck on a double shift and they have ludicrous rules that block agency staff from buying a meal from the cafeteria even if they didn't know they were working a double or triple shift.
I went to wash a patients face one day, he was hot and I felt sorry for him, and I was told that "WE DON'T HAVE TIME TO DO THAT."
In another place I was told, "DON'T GIVE HER A DRINK....IT'LL MAKE HER HAVE TO GO TO THE BATHROOM," and again, this is the in-crowd getting away with negligence and abuse. I had no defenses against them and neither do the patients.
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I just thought of something as well - if they are trying to say Medicare won’t pay for anymore rehabilitation and she has hit a plateau FYI her benefits start all over again January 1,2022! So if they refused PT OT ST in home it all renews January 1st (weeks away)!
Helpful Answer (8)

Yes. There is financial incentive. Hospitals and rehabs often have deals made with certain nursing homes. When they refer patients to one of these care facilities they receive compensation and an assortment of different gifts.
A good friend of mine who is a social worked in one such rehab facility and was told in not so many words to assist in convincing families their 'loved one' needed LTC placement. And to further "convince" these people into making sure two certain nursing homes were the ones their 'loved ones' ended up in.
He quit that job after less than one year.
If your home has been deemed safe for your wife to live in and you have adequate care for her, then no one can force her to live in a nursing home. Your wife suffered a brain injury but that does not necessarily mean she is totally incompetent on all levels and doesn't know what's going on. My father had a stroke and though he was physically debilitated, his mind was sound and he was still able to make logical decisions and make his wishes known.
Your home will have to be inspected and signed off on to make sure it's safe for her. That can be done by a social worker or a physical or occupational therapist. You can bring in one of your own to do this. If your wife is going to have visiting nurse care in the home, that agency can arrange this inspection for you too. After that is done Medicare will not give you a hard time about coverage. They will over what they cover.
Please DO NOT let rehab or nursing home staff push you around or talk you into putting your wife in a nursing home if she can be cared for in her home. They will try to and will also pull some very underhanded and illegal stuff to make sure they get the placement. Don't sign anything.
The rehab and/or nursing home they have chosen will likely try to move on you by petitioning for conservatorship/guardianship over your wife. They will do this on the down-low in the probate court and you won't even know. Then the court date comes, you're not there and you lose by default. The nursing home my dad was in got cute and did just this. I was ready for it though and they lost. Check with the probate court once a week to see if there's any hearing involving your wife coming up. It's public knowledge and they will tell you.
Address why your wife acts like she's terrified of you. She likely has brain damage and probably some kind of dementia as well. Who knows what she's heard in the rehab about you? An LCSW (Licensed Clinical Social Worker) can help you. Many of them are in independent practice so they're not affiliated with any hospitals, rehabs, or nursing homes. Good luck.
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meanstoanend Dec 2021
"They will do this on the down-low in the probate court and you won't even know. Then the court date comes, you're not there and you lose by default. The nursing home my dad was in got cute and did just this. I was ready for it though and they lost. Check with the probate court once a week to see if there's any hearing involving your wife coming up. It's public knowledge and they will tell you."
After reading this, I looked up the probate court in my county and I could not find any calendar for hearings. I have known for a long time how sneaky they are but not how to keep watch on them.
Rehab was all set to move my dad and mother to the nursing home facility after their individual health episodes.

My dad had two toes removed so mobility was a huge issue.

Sister and I chose to move them back to their senior apartment with speech, OT, PT, home health nursing and also unskilled sitters. Both parents recovered so fast and of course were thrilled to be home and be able to see their family.

All bills were covered by their Medicare Advantage insurances with no issues.

Good luck to you and get your wife home. As long as all her needs are met there should be no issue. You will need equipment at home for her therapies. The social worker at rehab will go over the needs with you.

Do not let them bully you into placing her in a nursing home. PT will need to inspect your home for her.
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It doesn’t sound to me as though you are really clear about their plan recommendation and why. The term nursing home automatically says things to all of us that are scary, definitive and not necessarily correct. The transfer they are talking about may not be a permanent one but necessary because she doesn’t qualify by Medicare standards for the accelerated rehab she is in anymore and what they are encouraging is the step down rehab that takes place in a nursing home. Many patients never qualify for the intensive stepped up rehab and go directly to rehab in a nursing facility out of the hospital because they aren’t ready to go home yet, they still need skilled nursing care but they don’t qualify for the accelerated rehab. Not all areas even have this type of accelerated rehab and all residential rehab is done in a “nursing home” but not all nursing homes provide that kind of rehab so the term is really the problem. The plan may very well still be to get your wife to the point where she can go home with you using the professional care you have set up, they just feel the in patient care and rehab will still have her progressing further faster than home care rite now.

When my mom had her stroke we were given the choice of accelerated rehab or rehab (nursing home) she just barely qualified for the accelerated and they said needed to be moved quicker if we were going to get her in one, that’s what we did. Just as we felt she was settled in, we were settled in and could take care of some life things about 2 weeks in they told us while she still needed intense speech therapy that alone didn’t qualify her for their facility with Medicare and her mobility had improved too much to keep her there. Our options were regular in patient rehab (NH) or taking her home with help, she couldn’t be left alone yet and taking her to ST ourselves. It sounds like your wife has more care needs still than my mom did though so the recommendations and path are not likely to be the same, I’m just trying to assure you that the recommendations might not be as dire as they sound to you, it’s so hard when you have no experience and are hearing these scary things for the first time.

My suggestion is that you ask someone you trust who cares about you both, a son or daughter, a sibling, a good friend to attend a family planning meeting with you at the rehab. You are experiencing a great loss no matter how you look at it and it’s a lot to ask of yourself to remain objective and hear everything you are being told when dealing with a loss like that, even when it’s good hopeful news. Even as the patient with any major medical information and decisions it’s smart to take someone else with you because we don’t all process the same information so two memories and two people forming and asking questions are always better than one and the ability to rehash and discuss the information with someone who knows and loves you, someone you trust on a different level from a doctor can make all the difference. You shouldn’t be alone in this and your wife can’t be that partner rite now. The rehab shouldn’t have a problem setting up a meeting that includes all the pertinent players, her OT, PT, ST, doctor maybe head nurse and the coordinator arranging for her next step. Then if you still want to consult with her primary who is probably getting updates or some other medical professional she has been seeing for a while or the neurologist…do that with your support person too.

Good luck, I know how hard this is from a daughters perspective and I couldn’t have made the decisions and done it without my siblings the two of us who were closest attending all of these consults and then sharing with the third. Good luck and my thoughts are with you, your wife and the people that love you.
Helpful Answer (7)
Riley2166 Dec 2021
I think given her current state, it will most likely get worse or require additional care and things will get much more involved and harder for all involved at home. And what if YOU get sick - and you will get older - why are you wanting to take on such a difficult burden? Please think long and hard on this one.
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Nobody can force you to send your wife to a skilled nursing facility. It seems that her care will require round the clock care from minimal skilled personnel. Long term care insurance should cover this expense. OT, PT and speech therapy may or may not continue - it depends on her ability to reach goals. Insurance may or may not cover this depending on her ability to progress so please talk to the the therapists. If your wife does not sleep well through the night - loud - you might find it difficult to sleep, That is a major concern. However...

Youi make a good case for taking your wife home to be cared for. Please talk to social worker at the rehab facility. Let them know the resources you already have. Ask them to recommend equipment and supplies you will need to have on hand at home for her care. Work together to bring her home. Talk to your insurance company about your plans and work with them to cover the cost of her care.
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If you are unable to access the probate court to check the docket on-line, call or go there in person and make inquiries once a week.
I called my city's probate court weekly and actually spoke with a human being each time. There were a few times I had to go down there in person because no one was picking up the phone.
More than a few times they didn't answer the phone on the first call. I'd wait and try again later. I always spoke to someone at some point who checked this for me. Sure, it can be tedious. Anything involving some municiple agency or another is going to be tedious.
It's important to do this if you've got a family member in rehab or a nursing home. Especially if they are an elder. Care facilities normally don't pursue conservatorship over a younger person who's in one. They do when it's elderly people. Seniors have property. They have permanent income and savings. They have insurance policies and other assets. Nursing homes, memory care, whatever the facility tries for conservatorship/guardianship over elders all the time even when they've got family taking care of business.
It is a very sneaky industry and people have to be careful.
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