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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 tried to remove my mother from Newport Oregon care center, doctor wouldn’t let me. Later I heard he was part owner in Yaquina care.
mom died because they wouldn’t call doctor til brother called ambulance.They wouldn’t let ambulance take her to hospital.
doctor came in after ambulance tried to take her to hospital, she had pneumonia and died before morning. 😢
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anonymous594015 Dec 2018
That's horrible. I'm very sorry for your loss.
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seeing your response, and that his goal is her being home, maybe as much as I so hate this, it could be formed in the way of an ultimatum: Ok, she comes home with hospice care and he MUST allow caregivers to help with all of her needs OR adult protective services will be notified....
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The elderly caregiver is not the ideal person who gets to make a caregiving decision.
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Based on what you wrote about about her physical condition, I agree with Bigsister7. Call hospice. I wish you well.
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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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anonymous594015 Dec 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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Did he promise her years ago that he would never put her in a home or leave her in a hospital?
I made that promise to my husband who had a stroke four and a half years ago. I took him out of rehab early, good thing I did. They had him on 17 medications of only 3 he needed. They said he could choose not to take the others, but his stroke left him speechless. They planned on doing stents that he didn't need (proven by another specialist). I took him home, I took care of him, with therapist and a nurse coming in. The nurse and therapist helped me help him. His doctor, not an assigned doctor worked with us. That promise not to leave him was fulfilled and I got four and a half wonderful years with him.
Medical is a business. Medicare only pays a percentage, the rest is on the family. The additional insurance only covers if Medicare approved. Medical works for you not the other way around, because you pay them they don't pay you.
So, if he made her a promise or if he can't afford (might lose everything) could be why he is doing this. Take into consideration that love or fear of losing everything might be what is driving his actions.
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anonymous594015 Dec 2018
That sounds like it was very hard and also very rewarding for you. He can afford the nursing home. He may not be able to afford the in home care but he'll go broke trying to.
I think he is terrified of nursing homes. He is making decisions based on terror and denial.
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I say this as a social worker...they don't always know it all. Are they trying to keep a bed filled or really advocating in the best interests of their patient and the spouse? I wonder what Adult Protective services would say...which could really complicate things, but maybe in the end the patient is a candidate for hospice and I better plan for home care could be established. Need to get the husband to feel and be heard to work with him rather than against him.
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anonymous594015 Dec 2018
The social worker is really going out of her way to help develop a safe discharge plan for her. The problem is the caregiver strongly feels that caring for her is "his job" or should be done by family (preferably female) and there is no one who is able to provide them with hands on care. He let some caregivers come in over the past two years but has severely restricted what they were allowed to do. (He allowed them to do housekeeping, laundry and stay with her when he left the house. He would not allow them to do any activities with her, He argued with them when they tried to provide personal care such as dressing, bathing and grooming.) They did their best within his constraints but she just wasn't getting the care she needed at home. If he would allow for care, she might be safe at home. It is his absolute denial of her deficits and reluctance to allow others to provide proper care that makes a discharge unsafe. It is heartbreaking.
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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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anonymous594015 Dec 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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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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I have heard of invoking article 48. Is this true? That the county sheriff can demand that the person be taken away to be in a home due to the conditions?
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I hope there are some kind people who will check in on them. I wish there was a volunteer agency that will send people to just do a home visit to see if anything is needed away from the home, to help ease the burdens.
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anonymous594015 Dec 2018
Our hope is that he will accept the recommendations for a safe discharge. That would involve accepting help in the home. The social worker says that if he insists on removing her against medical advice, Adult Protective Services will be contacted. Poor them.
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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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anonymous594015 Dec 2018
It's love. But it's also control.
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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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anonymous594015 Dec 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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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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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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anonymous594015 Nov 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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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 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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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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anonymous594015 Nov 2018
She's in a Medicaid bed. They aren't making lots of money on her.
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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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Tell him NOT to take her home..it would be a BIG mistake.
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MargaretMcKen Nov 2018
Did you read that she did not want suggestions for action?
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We had experience with a part of it – the doctor refusing to help. MIL was in a nursing home with a visiting GP who MIL disliked. After a family member got into an ‘ain’t it awful’ session about it with her, she ‘sacked’ the doctor. We then found that it was virtually impossible to find another visiting GP, a problem shared in many local nursing homes as the schedule fees are uneconomic for the visit travel plus complex elders’ health consults. My husband had to drive 1.5 hours each way to the nursing home to take her to a GP practice just to get repeat scripts for medications - a major problem just in her own transport. The original doctor refused to take her back. It was nearly 3 years before we found a great doctor who agreed to see her ‘on my route home’. I hope that he checks this out before falling out with a doctor, just in case the same factors apply around your way.
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anonymous594015 Nov 2018
Her primary care physician has already told him he won't provide care to her if she leaves the NH against medical advice. It's a very sad situation. Thank you for your response.
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