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My husband has severe asthma for decades and fairly advanced Parkinson's for years. A serious (life-threatening) respiratory event landed him in the hospital. From there he went into rehab, where nursing home was recommended. Because there were no beds in NH, he has been placed in short-term rehab. With lots of PT there, he is doing better in terms of ADLs and also getting his respiratory needs met adequately. Meantime, I have been scrambling to qualify him for Medicaid.


I am conflicted because he wants very much to return home. If he did, it would be a struggle because he needs 24/7 care. I would have to get Medicaid to pay for it and make a space in our two-bedroom apartment for another person. (I can't sleep in the same room as him because his erratic hours are so different from mine.) On top of that, going on Medicaid has cut my income by 1/3 so I really should be looking for an apartment I can afford, which is very hard to find where I live. (That's a whole other story.)


I plan to call a team meeting at the Rehab to discuss his process and condition, and will reconnect with his long-time pulminologist to be as well-informed as possible.


To be honest, I know I will become resentful in the short run and it will not work in the long run. Yet I have this strong, nagging feeling in my gut that he deserves a chance, especially because he is such a good person and has struggled so hard with physical therapy.


Any advice would be greatly appreciated. Thank you.

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You already  know the answer - do not bring him home. Find a place where he can get the care he needs and allow you to remain his loving wife. Visit him, bring him treats and things he likes, share pictures.

If you bring him home - most of the caregiving will still fall on your shoulders even with aids. You know it won't work. Take the long term view in making your decision. Good luck to you - I know this is very hard.
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Thank you for a response that speaks to my more rationale side, which is under attack from my sense of guilt. It's just so hard, especially because he has been so very generous and kind to me at all times.
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Medicaid in your state will not pay for 24/7 care just FYI. They pay for limited home care so.....they’d likely pay for a few hours a week at minimum wage.
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This is a hard one to call. My husband has Parkinsons and dementia. He has a lot of needs at this time. I’m thinking that soon he will have to go into Assisted Living and that is going to be a difficult decision to make. However, at times I am so overwhelned with his needs that I think my health will be jeopardized, which may happen to you. If I were you, I wouldn’t allow him to return home as difficult as it will be. Just realize that you are doing everything you possibly can for him.
I guess you really have to do what’s right for you and him. All the best to you.
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This is a hard decision--but you have already made up your mind.

Don't bring him home. It will be too hard and you will both be unhappy within days.

Parkinson's doesn't get "better". Ever.

You can still be a big part of his daily care, and you can do so after having had a good night's sleep and are fresh and able to spend time with him. Also, you will be able to have a life, as you must slowly make a life for you w/o him.

Your place is way too small for any kind of "care".

Just love him, and keep him as happy as possible where he is.
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ArtLover Jan 2019
An update for all of you who were so caring and compassionate in supporting me during this challenging time....
I had asked the Social Worker at my husbands Rehab Unit to summarize my husband's case for me after their care-team meeting today. I was visiting with my husband after the meeting. The social worker came in, told us both that he had made progress, and scheduled a meeting to discuss these findings and possible implications with their team and our family this Friday. I want you all to know how much I value your feedback, even if I cave in 'just this once.'
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On Friday be clear to his team that you cannot care for him at home. It's just not possible. He needs more care and attention than you possibly can provide for him. The situation would be unsafe.

You want to be his wife, not his therapist and nurse. Even the most loving relationships suffer from the strain of caregiving.

Is caving "just this once" really worth all the risk? I think you are failing to look at his care needs realistically. Toileting. Transferring. Hygiene. Meals. Laundry. Medication. Exercise. Positioning. Transportation. Please think carefully before you do something that you seem to know deep down that you will regret.
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ArtLover Jan 2019
Thank you for being so open and candid. You all give me courage to face the unbearable. On top of it all, I finally decided to have the knee replacement I have postponed for two years due to my caretaking demands. I knew the time had come when I awoke this morning and had great pain walking to the bathroom. I am hoping that my incapacity for weeks or even months postpones the need for a final decision, and it will seem obvious to all that NH is best for him by the time I recover.
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It must be so hard to not be able to give him what he wants! But you really can't bring him home. It wouldn't be good for him and it wouldn't be good for you. But it is hard for your rational brain to tell your heart that. I dealt with similar feelings with my Mom when she had to move to a place that provided more care. Working with a therapist really helped me work through things and be at peace. Best wishes .
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My gut reaction is to NOT bring him home. My husband, age 60, is in a nursing home because of his Parkinson's and Parkinson's related dementia. I took him to ER last February after he displayed aggressive behavior during his hallucinations. He has been in five institutions since then, but Nuplazid finally started working and no more hallucinations. When he is lucid, he accepts that he is living in a nursing home, but sometimes he begs to come home. I am slowly learning to live with my guilty feelings because I know I cannot care for him at home. I am working full time, but even if I wasn't, I'm not strong enough to lift him when he falls. I visit 4 times a week, bringing him a milkshake every time. After he drinks the milkshake we lay down on his bed and hold each other. So comforting to both of us. John commented that I spend more time cuddling with him now than when he was home, so that is a positive. Get ready to be VERY frustrated with how much gets lost in a nursing home, mostly because John leaves things in other patient rooms when he is wandering. Best of luck to you!
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ArtLover Jan 2019
What a delightful suggestion. I love your image of the milk shake followed by a cuddle. Truth to tell, I've been so burnt-out over his care that I have held myself aloof physically. There isn't a whole lot of privacy, but then, there wouldn't be that much action either.
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Remember that the most important thing is keeping your loved one safe and cared for., and that is what you are doing.

You can go have lunch (or whatever time period you choose) with him every day and spend quality time with him.

If you were able to care for him you would, but you cannot. Now is the time to make the best of the current situation.
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No, do not bring him home because you can't provide for his health care needs.
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