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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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.
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.
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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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.
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.
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.
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.'
I guess you really have to do what’s right for you and him. All the best to you.
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.