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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.

You have made that difficult but necessary choice. Know that if your husband is physically able to and you are physically able to, you can take your husband out for lunch or other outings to give him the tlc and as much normalcy as you can. I was able to do so for my dad during his stay in the nursing home. When transferring him into the car became more difficult than I was comfortable doing, I would ask the nursing home staff to help him into the car and took him on enjoyable drives. We would run simple errands, and have car picnics at a scenic spot...that sort of thing. I was so happy to do that for him. I could do some of that for my mom for the first few months of her stay, but her condition including orthostatic hypotension that caused her to pass out after sitting for a short while prevented me from being able to take her out as much. I guess what I'm saying is do as much as you can to help him feel better about being there; give him things to look forward to. As the community spouse, are you sure you can't stay put? Where I live, the community spouse is allowed assets of up to around $123,000 (not including the house) and a monthly income of approximately $3000. The application also takes into account some of the expenses of living independently such as property taxes. When dad entered the nursing home, mom was able to keep her and his income with the expectation that she spend $72 a month on him. These numbers vary from state to state. Have you met with an elder law attorney?
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ArtLover Jan 22, 2019
Thank you for your heartfelt response based on your positive personal experiences. We are both in the process of accepting the finality of our/my decision for long-term care. It is heartbreaking for both of us--for the loss of the other as a companion through life and so many other inevitable losses.

Unfortunately, we have never owned a home. Applying for Medicaid has drastically reduced my housing budget, so I am searching through ads of apartments that are painful to contemplate. We do have an elder law attorney, are paying him well, though I am not sure that his firm provides the services that I need desperately now.

So, on that negative note, I can foresee a time in the distant future when I may again experience contentment with my life choices and circumstances.
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Even if you can get Community Medicaid approved, we found that actually getting some bodies in the door was a difficult task. And they will not provide 24/7 care. It isn't cost effective for them. They will want you to go to a facility to get that level of care.

Your husband needs more care than you can provide at home. Stay the course. Get approval for chronic Medicaid. His improvement in physical abilities is because he's in a facility getting the kind of support you cannot give him at home. That's the best place for him. His placement is good for you, too. You can be more help to him if you are sleeping well and you stay healthy. Stay strong. Do not bring him home. This is hard.
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ArtLover Jan 20, 2019
To Marcia, and everyone else who responded to my query:
Though it broke my heart, I made it clear to the staff and to my husband that his future would require living in long-term care; i.e., a nursing home. You all know how much it hurts... how you remember the warm, compassionate, successful person you have loved for so many years, and the terrible guilt of condemning him or her to an institutional existence. It appears that our health system does not offer better options, unless you are super wealthy. Although we have always been comfortable, I now have to compose a life with diminished financial resources because his care requires Medicaid.

After deciding that my husband will need more care than I can provide, I must face the fact that I can no longer afford our modest life. Too much income for affordable housing, yet too little for the rents in our area of the country. So now I must focus on me, locating an affordable apartment and making it my home. This is not what I had imagined for my later years, yet it is inevitable for so many of us.

Thank you all for your support through the most difficult decision of my life.
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No, do not bring him home because you can't provide for his health care needs.
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Reply to Llamalover47
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As part of your information gathering, ask about Frail Elder Waiver. It is a program that provides health aide assistance in the home. My mother (who was low income) qualified for it and she received approximately 20 hours a week (Mon-Fri) in her home. They helped with personal care, food prep, light housekeeping, and even grocery shopping. I think she might have been able to get help on weekends, but I did that. The only problem with this help was that sometimes they didn't show up due to bad weather or illness. The agencies provided replacements when possible. This program can help pay for an extended rehab stay if deemed appropriate to allow the patient enough time to improve. You may be past this opportunity or your state may not offer it, but I thought this info might help you ask the questions you need to know what you and your husband's options are.
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ArtLover Jan 17, 2019
Didn't know about this program. Thank you for sharing this information.
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You needing knee surgery is a good "excuse" for not bringing him home and also an honest one. If you schedule your surgery around the same time he is placed in 24 hour care, you will be able to recuperate well and he will be safe.
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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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Reply to Rabanette
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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 16, 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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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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Reply to NYDaughterInLaw
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ArtLover Jan 16, 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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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 15, 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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I went through the same thing with my husband. Brought him home twice after rehab. The third time he had to stay. I remember thinking he would have done the same for me. ( I hope).
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Reply to upallnight
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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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Reply to Health4him
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It is very sad, but your hub has reached a point where he needs the care of a facility.. it is better to leave him there. It is a hard transition for everyone but you would be taking on more than you can manage, You need to look after yourself and it may not be the best place for him even if he wants it. (((((hugs)))))
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Reply to golden23
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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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Reply to worriedinCali
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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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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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Reply to ArtLover
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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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