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Acanesfan Asked July 2022

Husband showing less dementia than when he went into nursing home. Afraid they’re going to send him home. Any suggestions?

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.

AlvaDeer Jul 2022
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.
Acanesfan Jul 2022
I will definitely keep that in mind. Thank you!
Fawnby Jul 2022
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.
Acanesfan Jul 2022
Thank you.

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Tynagh Jul 2022
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.

Taarna Jul 2022
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.
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.
JoAnn29 Jul 2022
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.
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.
Evamar Jul 2022
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.
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.
MJ1929 Jul 2022
Make sure you protect your funds, then tell him to have at it. No lawyer will take that case.

WearyJanie Jul 2022
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.
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.
RedVanAnnie Jul 2022
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.

Evamar Jul 2022
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.
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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