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My husband is showing less dementia than when he went into the nursing home. I'm afraid they’re going to send him home, but I’m 73 and can’t care for his Parkinson’s, which has also gotten better since he’s been getting 24-hr care. He wants to hire a lawyer and sue them because "he’s being held against his will." I’m a wreck. He’s convinced he’s cured of Parkinson’s. Any suggestions? Thank you in advance for any advice.

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Your story is not uncommon. Meaning people wanting to leave NH. Several friend‘s parents have the same every phone call or visit.
My husband with Parkinson but no dementia at all, but, we both know, acknowledge, accepted there is no cure, nobody was ever cured, never!
So, even if he hires a lawyer, any medical dr would say otherwise.
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Acanesfan Jul 2022
Thank you. It’s really hard, and I never expected this kind of issue to play out in our lives.
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Make sure you protect your funds, then tell him to have at it. No lawyer will take that case.
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Your husband is very unlikely to be able to do any of the following. Are you his POA? Do you have any diagnosis of dementia on him?
I guess ultimately you need to understand that a division of assets is in order for you; see an elder law attorney about that, if it isn't already a done thing. Then, should husband come home make it clear to discharge planners that the VERY DAY he comes in you will be LEAVING and filing for divorce. Then do that if it comes down to it. He will not be safe enough to be released on his own; or RATHER , if he IS safe enough, then let him come home alone, get yourself a nice little studio apartment, and put your feet up.
You need to law down the law to him on this the next time you visit.
Very sorry, about ALL of this, but enough is ENOUGH.
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Acanesfan Jul 2022
I will definitely keep that in mind. Thank you!
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You should be protecting half of your assets anyway now he is in care. Medicaid allows splitting of assets. You spend down DHs split and then apply for Medicaid. You remain in the home, have a car and enough of your monthly income to live on. Just giving u the basics but you need to see an elder lawyer well versed in Medicaid..

They will not send your husband home. Parkinson's alone is a reason to need skilled nursing. All you need to say to SW if the subject comes up is it would be an unsafe discharge because you cannot care for him 24/7. Nor can you afford to have aides 24/7.
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Acanesfan Jul 2022
He's been approved for Medicaid, and that’s been a big help.

I spoke to an elder care attorney and he told me the same thing, about unsafe discharge and that they wouldn’t send him home.

I appreciate the suggestions. Thank you.
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Would you mind elaborating on how his Pd got better?
I am not judging, just curious as my husband is suffering from it and wondering if there is possibility of any improvement?
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Acanesfan Jul 2022
It’s better in that he doesn’t fall as much because he’s getting 24 hour nursing care. Also they gave him some physical therapy which helped a lot but apparently there is a limit to how much they can give because he isn’t eligible for it anymore. His dementia is confusing because he sounds like he’s making a lot of sense until you parse what he’s saying. He believes he’s been cured of Parkinson’s and believes he can come home and get his own apartment, drive 1500 miles to see his friends, etc. good luck with whomever you’re dealing with who has Parkinson’s. I understand it gets worse but never gets cured.
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This delusion the husband has is part of his dementia. Dementia and Parkinson’s don’t get better. Stay strong and don’t get pulled into his reality. He needs better care than you can provide. Very sorry you’re dealing with this.
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Acanesfan Jul 2022
Thank you.
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dear OP,

as long as your husband is mentally competent (it does sound like he is), then he can leave NH if he wants to. only a court can decide he’s mentally incompetent. it’s not enough for a doctor to say “dementia” - otherwise this would give too much power to a doctor to lock up anyone they wish.

he might be obliged to set up in-home care, but he’s allowed to leave NH. he doesn’t have to return to your home - but if your home is also his home, he has a right to go home.
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JoAnn29 Jul 2022
The only time a court gets involved is when guardianship is needed. If you have been assigned POA, all u need is one or two doctors to diagnose Dementia and the POA is in effect. Even a Judge's rulings are based on Doctor's diagnosis when guardianship is involved.
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Your husband cannot be "cured" of Parkinson's. He is experiencing fewer symptoms because his medication is likely being more carefully regulated than if he were at home (no insult meant, it's just that he is on a steady regimen of when the doses are given to him), plus he is receiving P/T, plus he does not have to care for himself. If he has a diagnosis of dementia, it's unlikely that he will be able to bring suit for being held against his will.
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Acanesfan,
Thank you for answering my question. Although my husband‘s Parkinson seems better sometimes but there is no significant improvement.
He too, had PT for over a year, 3 different therapists, little improvement.
Medications adjustment changes work but side effects are worse. I accepted it will get worse, he does not have dementia so no drama or arguments.
Hope all works out well for your sake, you don‘t deserve additional stress.
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Clairesmum Jul 2022
Parkinson's patients often progress to development of auditory and visual hallucinations.
Sometimes they are benign - a patient who saw a group of children playing in the corner of the room - she enjoyed watching them, and they never came closer to her.
Sometimes terrifying - that they are being imprisoned, tortured, poisoned, etc.
Generally patients do not talk about these changes in their brain. Pretty normal response - who wants to be thought of as "crazy"?
PD is a tricky disease, and very different patterns of progression, as with al degenerative diseases.
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Please consider the possibility that your husband has improved because of better nutrition in the SNF. There is very good new research coming out that links Parkinson’s to thiamine deficiency, but more broadly to chronic trace nutrient deficiency, high refined carbohydrate intake and stress. Stress depletes the body of both thiamine and magnesium, and poor nutrition causes stress. So a viscous circle.

There is much talk recently in the nutrition community about something they call “high-calorie malnutrition “, a term originally defined, I believe, by Dr. Derrick Lonsdale, whose lifelong area of study was thiamine deficiency.

My parents would NOT eat balanced meals, and ate a LOT of sugar and refined carbs. I am currently trying to balance this with my mother by using our city’s wonderful Meals on Wheels program—and trying to make her eat the food. It is nutritionally planned and balanced, and is worlds better than what she was eating before.

Mt MIL is in an independent living center; my inlaws moved there some years ago (FIL now deceased). Their physical abilities and my FIL’s PD got markedly better when they moved there. They said it was because they were “happy to be near their son and grandchildren”. While no doubt happiness was a factor—something also well studied in science—the good good and lower stress overall was, IMO, what made the difference. MANY people who moved in there improved markedly, again I think nutrition, lower stress and probably good routine as well.
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Evamar Jul 2022
No doubt no stress, happinesses and good nutrition are important for any disease.
I feel, in absence of total understanding of PD, all those suggestions although wise are nothing new.
We eat healthy and nutritious foods, almost never anything refined, processed etc, lots of organic.
Yet, my husband’s Parkinson’s is progressing and meds although helpful create other problems.
The fact remains it is cruel, horrible disease and cure is unlikely any time soon.
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Good points are being made improved nutrition and closer medical management contributing to your husband's improved symptoms. Neither Dementia nor Parkinsons are curable or reversible, but a healthy diet and careful medical supervision can optimize the patient's health and daily functioning.
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I am so glad that he is doing better with 24/7 care. This is why he needs to stay in this facility - one that helps him to thrive.

Ask his doctor to prepare a document that describes your husband's diagnosis, prognosis and usual course his disease(s) will take - even with the best treatment and medications. Unfortunately, Parkinson's disease is incurable. Medications and therapy will slow the progress and lengthen his "good days" but that is all.
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felixmental Jul 2022
This is an excellent suggestion. My mother was similar when she moved to memory care against her will. But we had the doctor's diagnosis on paper and a court judgement that she was incapable.
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Acanesfan: A patient cannot be cured of Parkinson's. He needs to remain in the facility, where he's being well taken care of.
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Oh wow, I’m fairly new to this nightmare. I am truly grateful that I’m not the only one struggling with this. My father is in NH and refuses to accept the fact that he must remain there for his own safety. He has dementia but at times seems perfectly fine and coherent. Once he was placed They safely removed some medications that could cause symptoms of dementia which I think was helpful. But he is by no means able to care for himself. He escaped one facility so they moved him to another. Now he said he is in prison and needs to go to court. I’m beside myself. I was going to visit several times a week. Now he’s over an hour away and I can’t go as often. This might be a blessing in disguise. Thank you all for your posts!
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If you are unable to care for him and you cannot afford to hire in-home help for sufficient hours to keep him safe, then sending him home could be considered an “unsafe discharge” by a hospital or a Rehab facility. It depends on his condition and mental acuity.
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The important statement here is "I can't take care of him"
They can not discharge him because it would be unsafe.
Showing an "improvement" when getting 24/7 care would not be uncommon. He is getting the care he needs by more than 1 person, he is on a schedule, he is getting meals, he is getting stimulation form other residents and activities.
A lawyer will not take a case from him if he has dementia.
Any doctor will confirm that he is not "cured of his Parkinson's".
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