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The elderly primary caretaker has decided he is taking his wife home. He's bought a hospital bed and has 8 hours per day of basically babysitters lined up. The Nursing Home where she currently resides thinks she needs 24 hour care and medical supervision. The social worker is trying to work with him to set up a safe discharge plan but he doesn't think he needs that and is not cooperative.


He has been advised that doing this could affect not only her Medicaid benefits but also Medicare and her normal insurance coverages. He says he doesn't care. Her primary care doctor is on record saying he will not care for her if she is returned home against medical advice.


Can anyone tell me their own experiences with this? (I do not need suggestions for action to take. There is nothing I can do. I'm just an interested bystander.)

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I predict your position as a bystander will become much more interesting as this situation progresses. It will be like watching demolition crews blow up a building. Malpractice being what it is, I venture to guess that the doctor is not dumping this lady because they cannot make any more money off her, but because they don’t want to lose their license. Ditto for the facility. Profits are a concern, sure, but believe it or not, there ARE facilities out there who do care about their patients/residents. The pervasive belief on this site that all facilities and doctors see dollar signs instead of people is extremely annoying to me.
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ChrissyB Nov 30, 2018
Im sorry you find that belief annoying, I find it more annoying that Ive personally witnessed it many times. Medically uneducated families and elderly are easily railroaded by "medical professionals" just like with anything there are good ones and bad ones. A good PCP would set up in home services. There isnt anything that happens in a nursing home that cant be set up for the home. Therapies, visiting nurses and physicians, even blood draws and many diagnostic tests will come to you these days. Patients are still shipped out of nursing homes for the more complicated care.
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He must be pretty clueless how bad it is to care for someone who requires 24-hour-a-day supervision including hands-on assistance with everything, which is both backbreaking and stressful; babysitters will not cut the cake. "Babysitters" do nothing but sit and watch and will not change diapers, feed, bathe, etc. Medicare will NOT pay for outside help other than temporary out-patient rehab, and any kind of home-health will be based on treatment of some medical problem like a skin stage 2 decub. You have a very tough situation--he needs to be educated, and it also makes one wonder about his mental state. If he's doing it just because he's lonely, and the damage he will do to his bed bound 100% care wife if he's not trained. My opinion is this: sounds to me SOMEONE in the family will need to move in and take care of them BOTH.
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I just hope this heart-rending story comes to a gentle conclusion. It sounds as if everyone involved wants it to.

How is the lady at the centre of it doing at the moment?
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Marcia7321 Dec 2, 2018
She is physically stronger because she is getting the proper care. Her dementia is much worse. She no longer speaks and sleeps most of the day.
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I understand the power of fear, and fear of being alone. I have put up with many bad relationships, due to the fear of having no one. This woman is ill, not ill treating him. That adds the power of needing to protect her. These 2 primal instincts have always been the cause of so many desperate choices (if desperation can be a choice). He knows she is dying. He wants her dying at home.
My father would put a bullet in his head instead of going to a home. My best friend, whom I cared for till he died in the bathtub, while sipping tea, had MS. Only 60. He asked me to help him commit suicide when he got the diagnosis. But, I moved in with him and cared for him through seizures, dementia, fits of rage, wheelchair walks. No home aids, just my alcoholic boyfriend adding to the nightmare. Someone once asked me why I put up with the sick people in my life. I said"I don't want to be alone", and I want to do some good in this world.
When we deal with primal feelings or urges, there is no sanity.
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It’s call LOVE. I would let him do it and try to check in how well everyone is doing, Please note that a social worker is not god.
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Marcia7321 Dec 2, 2018
It's love. But it's also control.
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Perhaps you can suggest in-home hospice care. Under these conditions, she may not live very long. Aside from that, just being a friend is all you can do and it's more than "nothing".
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Marcia7321 Dec 5, 2018
Honestly, with the proper care, she has gotten (physically) much stronger. She's got some kidney issues but her heart is strong. No diabetes. No blood pressure medications. I have not seen anyone die of Alzheimer's so I don't know how fast her physical health will be affected by the decline in her brain function. I don't think she'll be eligible for hospice right now and I know he thinks hospice is 'letting people die'! We'd have to call it comfort care. But it's worth a try.
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The doctors can say they won't treat if one leaves against medical advice.
The insurance company can refuse to pay if one leaves against medical advice.
Their choices.

However, the few brave persons I have known had their medical bills paid by insurance, and kept the same doctors when they left against medical advice.
Their choice!

It is negotiable.
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The key issue here is who has Healthcare Power-of-Attorney? (and personal)

Does the elderly caregiver have this? Or do you? One of the kids perhaps?

We had an issue with my father where he was living with a girlfriend who wasn't taking care of him. After he ended up in the hospital with dementia, my sister invoked PoA and got him into 24/7 nursing (which he needed).

If the elderly caregiver has full legal power, you could probably contact adult protective services, and maybe contact an elder law attorney. It is a huge red-flag that the primary care doctor says she cannot go home, that they will discontinue treatment, etc., if she is removed from the facility.

You can fight this even if you don't have PoA
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Marcia7321 Nov 30, 2018
It's her caregiver who is the problem. He has all the authority and his lawyer met with him and says he understands the concepts and the consequences- he's not incapable of making decisions. (Unfortunately)

He was afraid to bring her to the doctor because he said "They'll take her away from me." Which they did once he called EMS because he couldn't get her up off the floor. She was very bruised, very weak, had pneumonia, edema, she wasn't eating...if she had been taken from a nursing home in that condition someone would have filed a complaint!
Now she's physically stronger but her dementia has gotten much worse.
He said to me. I'll never call EMS again.
He is a frightened old man. He doesn't want her to die. He doesn't care what insurance coverage he loses or what it costs him. He thinks he can make the dementia better if she is at home. And he takes zero responsibility for the shape she was in when she left his home.
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Medical advice isnt always strictly medical. Keep in mind there are large amounts of money to be made by nursing home admissions. Good for this gentleman, he can find another pcp, hopefully one who will support his and his spouses wishes. Insurance companies will not force nursing home stays and this doctor SHOULD be helping him set up resources for in the home. A nursing home isnt a hospital and there are many resources including hospice that will provide in home medical supervision. Personally, I do not believe medical personnel should decide where we live, only the services we need. PT, OT and nursing services are all provided in the home along with bath visits under Medicare.
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Marcia7321 Nov 30, 2018
She's in a Medicaid bed. They aren't making lots of money on her.
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Her age wasn't mentioned. Not knowing more about her medical condition it is difficult to offer advice.
1) Is she aware of what is going on around her?
2) How is her husbands health?
3) Is she in diapers?
4) Can she feed herself?
5) Can he be convinced to visit her when he gets up until she goes to bed in the evening?
6) Do they have children or family locally that can rotate helping him with her?
7) Can she walk or get out of bed on her own?

This is so sad. I feel his loneliness, or is he so in love with her he can't be without her? I wish them both happiness and success if she is or isn't moved. No matter which way this goes it will be difficult for them both.
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Marcia7321 Dec 2, 2018
She has late stage Alzheimer's. She is incontinent but can be helped to use the bathroom. She can feed herself but is a choking risk and must have soft food and be supervised while she eats. She is a fall risk. She was taken from the home unable to get out of bed alone. She had severe edema, fungal infections, low oxygen levels and was not eating. She was a two person transfer when she entered the nursing home. They have gotten her walking again and she is much stronger. Because she can now get out of bed alone, he wants her home. But unless he adjusts the care he allows (and so far, he isn't arranging to do that), she is going to decline physically again. Her family is very happy she is doing better and they are all enthusiastic about her returning home. It's as if no one is connecting the the nursing home's care with her physical improvement. If they just return her to the same situation she was removed from, she won't do well. And he is even more reluctant to alert people to her physical needs now because she was 'taken away' from him.
He visits very frequently.
They have no local family that can provide care.
His physical health is not great but he would not be considered disabled.
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