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Thank you so much for all of ur support in understanding my plight... Although i have yet not reached to a decision but definitely reasing your answers to my husband has given some comfort in taking a decision... We both wish to see through it and discuss and close.. And yes ask for help from my daughter too..
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I too am sorry that your family is faced with this challenge. I can understand both sides - it's exhausting and demanding for you, but your husband wants the comfort of his family and home during this unsettling time.

I think that some type of assistance in the home would be the best choice between the two opposites. Sometimes associations for specific illnesses can offer support or financial assistance suggestions to pay for in-home care. Sometimes treating physicians for specialties can offer suggestions. I would contact these groups to see if there is any financial support you can get to keep him in the home and cared for by aides.

Does he have any pensions or long term health care from a former employer?

I wish I knew more about sources for people in situations like this, but I don't. But perhaps a county health worker might be able to help.

I wish you luck, and peace for your family as you travel this unplanned journey
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As a practical matter, if the family can't afford home help, they most likely can't afford a care facility either. A nursing home would be an option if the disabled person qualifies for Medicaid, both medically and financially. But in some states, Medicaid will provide home help as an alternative to nursing home care, if the person otherwise qualifies. These are called nursing home diversion programs, at least in my state (Florida).

I'm not familiar with what kinds of public resources are available for non-elderly disabled people. You need to investigate what's available in your state.

Gargib97, I'm very sorry your family is in this situation. I'm sure it's very stressful as well as sad for everyone involved.
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I have a distant family member who is also afflicted with a degenerative disease and unfortunately there really seem to be no good choices. While I sympathize with her resistance to move to a facility I also can see the toll it is taking on her family. (Do you have kids btw?) In her case I feel that her quality of life may actually improve in many ways as she would have access to therapy and activities. You could still visit often and bring him out for activities and family time but the physical burden of bathing, toileting special diets would be lifted from the family.
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If he's mentally unaffected and able to take decisions for himself, you don't have the option of "putting" him anywhere - it's up to him where he chooses to live, and if you aren't able to support his choice then he has to find other means to do it.

That's the theory, anyway. Then there's the practicality of it - how is he to manage, where is he to find help if you can't provide for him at home?

Are you in touch with any support groups for other people living with this disease and their families? If you have already contacted the care centre, what about asking them for advice about where you might find in-home support for your husband?

The thing is, he has the right to choose to live at home. But that doesn't mean you have to do all the work to make it possible - he needs to bring in more help from other people.

At 14, by the way, your daughter is old enough to have an opinion - what does she think about her Dad's options?
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He is mentally stable and can definitely take decisions for himself. He is not able to move much as his muscles are getting weaker and weaker. His daily routines like taking bath, going to toilet he needs help. I am unable to give time at times due to my work pressure. He does not want to go to a care center as he wants to be with his family thats me & our 14 year old daughter. Financially its difficult to have a support system at home.
His upper arm muscles and legs have totally got effected with minor breathing issues. I am unable to decide because I feel if I put him into a care center I would be putting him away from his family. He is too young to be living without a family near him. But yes his daily needs are increasing and it is very taxing for me.
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I don't think there's enough information here to base a response on. But I will say that it ought to be a mutual decision. As I understand it, muscular dystrophy is not a mentally debilitating disease. I assume his thinking is still intact and he's capable of making decisions for himself.

That said, it's impossible to even give an opinion without knowing what the options are. What does he want for himself? If he wants to stay at home, are there any resources that would allow him to stay at home without placing the full burden of care on your shoulders? Are there public services where you live? If so, how much help would they provide? Is there money to fund paid help for him?

My personal bias is that we only have the right to make decisions for ourselves, not someone else. We can decide what we can and can't do, what we will and won't do. Our decisions may leave the other person with different or fewer choices, but it's still their choice to make, as long as they're mentally capable of making it.
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Gargib97, could you provide a little more information please? E.g. what sort of muscular dystrophy, what does your husband want to happen, what resources are available to you, and why are you having to make this decision?

If all the advice you're getting is that your husband needs to be in a care centre, and the only reason you're hesitant is that you feel guilty about accepting that choice, then there are some important things to remember that I hope will be comforting.

You did not give him this condition.
You cannot cure it, no matter how much you love your husband or however hard you try.
His needs may be greater than one non-professional caregiver can meet - if not now, then soon.
His living in a care centre will not stop you loving him, seeing him, and contributing to his wellbeing.
You are important too. It isn't right to sacrifice one person (you) for another (your husband); and *especially* not if the sacrifice will not in fact improve his life.

Please post a little more. There will be others who have been through the experience of making this difficult and heartbreaking decision.
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