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My sweetie has been in and out of hospital and skilled nursing a number of times since mid August of last year. GI issues, rehab, pleural effusion (thanks to a Coumadin issue), home, inability to get out of the car, rehab, home, coma (no consensus as to why), rehab, multiple episodes of vomiting with rehab in between and pneumonia and rehab. Well, you get the picture.


The problem is twofold. He has physical issues, and has had rehab, but due to being in and out of the hospital, each time, he lost whatever ground was gained. The therapist quite rudely told him the last time he was in a session that she thought he hadn't improved at all and she thought it was a waste of her time to continue rehab. Then they tried to trick me into believing that the Medicaid we had while I was laid off had said he couldn't stay any longer (he was approved for another two weeks plus) and that he needed to go into long-term care (aka nursing home). The lying social worker tried to convince me that I didn't know what I was talking about, even though we had called our medical provider and had been told he was able to stay.


The problem is that he will not get any rehab in long-term. I might try to talk him into staying if they did, at least for another month of unabated therapy.


Have any of you gone through anything like this? Have you ever paid for additional therapy yourself? If I put him into long-term care, even briefly, do I lose control of the situation? I really don't think he's quite ready to go home, but it will kill him to be tossed into long-term care. He's working on a book, and we have been driving around the state to take photos for it. He's been looking forward to these trips.


I really don't know what to do. I don't think we have all the medical answers either. Seeking help, info, etc. Thanks.

Where I live, LTC and skilled nursing are one and the same. Also Rehab facilities and LTC/skilled nursing are in the same building but kept separate from the LTC.

I can see your husband "losing ground" because he has been hospitalized. I was told for everyday ur in the hospital, thats 3 days of therapy. So that means 30 days to get his strength back. So the therapist should know better. Hospitals do not do therapy, not where I live.

My Mom had therapy in LTC but I think that was more because she was wheelchair bound and it was to keep her muscles toned.

Like I said before, if you are willing to care for him at home, do it. Call your Medicaid office and see if you qualify for any homecare. Your doctor can make an order for therapy in the home. They may provide an aide for bathing, while they are seeing your husband. See if Medicaid can provide the therapy too.

I see DH is 64. Is he on SS disability? If so, he gets Medicare, right. Medicare pays for in home therapy. If not on Medicare, not too much longer.
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Reply to JoAnn29
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I’m not sure about your husbands specific therapy needs, but there definitely is rehab in long term care. Moms long term care facility has a big rehab center and she has had multiple sessions of PT, OT and is currently having speech therapy. As soon as she moved in she started on 2 weeks of daily therapy to get a base line, then it has continued on and off sporadically for the last 2 years, triggered if they thought she had a decline. If theres a specific long term care facility that they are recommending maybe you could check it out?
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Reply to rocketjcat
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I know things are different as far as insurance in coverage go between Canada and the USA, but after working at a physiotherapy clinic for 11 years, I have seen many patients 'fired' for not progressing.

Usually the patient puts in minimum effort during sessions and does not do their exercises between sessions. And yes the various therapists can tell whether or not the patients are compliant.

There are far more people needing help than hours in the day of therapists, so it makes perfect sense to stop wasting their time with the people who are not prepared to put in the effort. An example, my dad had a stroke in May 2015 at age 86. Dad had 4 months rehab and was sent home with exercises to do every day. If he does not do his 'bed' exercises before getting out of bed each morning, he has a set back. He does other exercises once he is out of bed. These are incredibly important to him not losing the ground he regained after the stroke. He was paralyzed down one side due to the stroke, but intensive therapy got him moving again.

Long term will not 'kill him'. If your husband goes into long term care, there is nothing to stop him from continuing to do the exercises he has been shown. Nor is there any reason why you could not pick him up and take him for a drive once he has regained his strength and the weather has improved.

He can continue to work on his book in long term care.
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Reply to Tothill
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jmacleve Feb 14, 2019
First off, my husband is still in skilled nursing. To the best of my knowledge, he is putting in all the effort he is capable of. I am not aware of any "bed exercises". He has lost strength over the last couple of years, and I am concerned that there is some other medical issue that is causing this, but I am not getting much help. Also, if I didn't say this in my question details, he has been bounced back and forth between hospital and rehab -- every time he'd start to make progress, he'd wind up back in the hospital. No rehab there, in fact, for 10 days, he was in the hospital in a coma!

Finally, you're not in a position to say what effect long-term would have on him. After 30 years, I am in a better position to know what thus man, who is bipolar, is prone to. Please don't be so cavalier about others' conditons when you don't know.
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Why do you think he won't get any therapy in Long Term? My mother certainly did when it was warranted.

I would drop the " lying social worker" line. I think that Medicaid issues are sometimes REALLY hard to figure out, even for professionals. If you had Community Medicaid ( as opposed to NH Medicaid) there could be honest confusion over what is covered.
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Reply to BarbBrooklyn
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jmacleve Feb 14, 2019
Whoa. She called me up all "worried" because she said our insurance was discharging him the next day. I called the insurance, and they said he was approved for two weeks. What would you call that if not a lie?
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Just a few thoughts. Two years ago, my husband was in long-term rehab for four and one half months, so it is possible to be in rehab for more than a few weeks. Has your husband been in the same hospital and rehab facilities each time? If so, it just may not be a good fit for him. Do you observe him doing his therapy? I went occasionally and my husband worked harder when I was there, “showing off” if you will. He received therapy for an additional 3 months at home. When it was determined that he had plateaued, therapy ended. In all honesty, when the therapists left, hubby crawled in his bed and slept. These therapists were pleasant enough, but they knew he wasn’t working on his therapy when they were gone. When he had a stroke in 2003, his speech therapist told him in no uncertain terms that she knew he wasn’t putting forth much effort toward his progress, and she too said that if he wasn’t going to work on it, she would discharge him as her patient. Therapists don’t have the time for patients who don’t want to put forth much effort. Just sayin’.

Insurance certainly controls treatment. You may want to visit the financial department of the current facility and tell them you need answers on exactly what is covered, for how long and where. We had a pretty good social worker at my husband’s rehab, but even she dropped the ball with a Medicaid Waiver and we were denied. What does the social worker have to gain by “lying” to you?

As for the medical issues, if he is in a facility, you are within your rights to call a Care Conference. Ask that anyone who has anything to do with Hubby’s care attend. Ask your questions then and take notes. At this time, ask that his nurse be available or even just leave notes on his care. You can also request a meeting with his doctors) at the facility. Come prepared for that meeting though. Ask directed questions. Make no accusations regarding his care and ask for a diagnoses and prognosis.

I know you want to nurture his wish to work on his book and continue taking the trips. But as someone who also cannot get my husband in and out of cars because he is totally immobile, he may need to find another avenue to work on his writing unless you can afford home modifications and a handicap accessible vehicle.

I learned thriugh all my husband’s medical issues that I had to be determined and proactive and balance that with an open mind and respect for the medical personnel I worked with. They may not have told me what I wanted to hear, but I made sure I understood what they told me and we did our best to work alongside them.
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Reply to Ahmijoy
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jmacleve Feb 14, 2019
First off ... he is in a facility. He is not "crawling back into bed when they leave". He has a 45 minute session daily, and he works on it to his full ability.

Second, as I have posted to others, the social worker called me in a "panic" telling me that our insurance was discharging him the next day. When I called the insurance, they said he had been approved for two more weeks. I am sorry that no one seems to get this, but to say I have trust issues here is a bit of an understatement.
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I don't know much about this issue, but, I hope some who do will chime in. My LO's doctor told me that Medicare would not pay for physical therapy if the patient did not make any progress. I would imagine there are various reasons for that to happen. With my LO she had dementia and was not able to participate in the therapy due to that.

How do the therapist know how to work with your husband if there is no actual diagnosis? How will you care for a person who is bed bound by yourself? And, if he's not improving, why do you think that he will in the future?
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Reply to Sunnygirl1
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Would Medicaid have continued if the Therapist had reported he was not improving. Yes, they may have allowed more time but he also needs to be showing improvement. Maybe he can't improve. Can you take him home and care for him? Maybe get Medicaid homecare? Maybe get a second opinion? Then get therapy at home?
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Reply to JoAnn29
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jmacleve Feb 14, 2019
Is there medicaid homecare? I guess I was under the impression that that was an out of pocket expense. I will have to make some calls and find out if we qualify.

We're in that all too familiar place for services -- make just too much to qualify for help but not enough to be able to pay for it ourselves.

Thanks for the info.
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