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My 50 year old husband has end stage renal disease. He had a stroke a few years ago that left him mentally impaired. He is currently suffering from intractable (prolonged) hiccups. His anxiety and hiccups cause him to stop dialysis hours before his time is up. As a result he is getting sicker. We haven't found an effective treatment for his hiccups, or his anxiety or his insomnia. As a result me and my teenaged daughters are exhausted. We have work and school.

I believe my husband should be in a nursing home or assisted living. If he continues to stop his dialysis, he will need hospice. He has no income of his own due to not enough credit with social security. We don't qualify for Medicaid because they would want me to spend down my retirement 401k which I couldn't do without a significant tax burden and penalty, not that I would even if I could. Also, my income is too high. Medicaid doesn't seem to understand I have to support myself and my children

I am so tired. My children and I need respite badly but don't see a solution. Does anyone have any ideas on how to get Medicaid or any help. My husband has a crises at least twice a week and I can't keep leaving my job and I just feel like I can't go on much longer like this.

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Baclofen is generally the best single drug for intractable hiccups, but quite risky in renal failure. It is possible a very low single dose given right after each dialysis could be tried. Vagal nerve stimulator is another consideration.
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I have seen Thorazine prescribed for intractable Hiccoughs and it has worked. Perhaps you can ask for this.
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First and foremost, I praise you for doing what you are doing. You have a tough job, raising kids, working and care giver...But, praise does not get it. You need help. If he is a Vet, call and get help from the local organizations. If you live in a small town, write a letter to the editor and let them know your situation and ask for help. Don't be proud, you need help..... I hate to think divorce, but if you think he is going to live another 10 years, it may be the answer. The State of Oregon goes back 5 years on assets. That is such a crime. I know as my partner worked hard all his life. Even giving me everything will not clear him for 5 years. They will put a lien on the house if I am found to have asked for state help and did not show the equity in the home. I am praying they somehow miss that step if I have to apply for public assistance for his care. You claim his care and your care of him on your taxes right? If you do, that is proof that you are caring for him out of a single income. Please do not let your religious beliefs cause you to not divorce him. God understands what you are going thru and also understand the greedy government we live under. It is a shame that only those who did not save or work their whole lives get the perks that you need. Do you belong to a church? Ask the pastor or the leader of the Women's groups to get you some help. My husband had cancer, I was not Catholic, but the nuns found out about my plight and we had the best Christmas ever. Not only that but the whole community stepped up and my house was cleaned regularly. You must make the community aware of what you are going through. Do not turn down any help as I know you would not. Whatever you do, do not sell your home. Keep it as you and the kids will need the equity when he passes. Ask your pastor if there is a member of the church who works in the public assistance and have a private talk with them about your situation. I will do some checking on the public situation. I worked for the County for 5 years. Let me see what I can find out. What State do you live in?
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Even if he doesn't have enough credits for Social Security, he should quality for Social Security Disability. I doubt he can work.
You may be able to put your 401(k) in an irrevocable trust.
A good elder attorney would be of assistance.
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mswilliams, I hope today is a bit better for you and you got some good rest. All good suggestions. Also, check with social security. He may be able to get the compassion help even though he is young. It is so exhausting to be a detective and do research while you are taking care of someone. I spend hours on the phone and online taking care of mom and dad. So many ups and downs. I hope you get some help with this.
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In Canada we have a process called involuntary separation. My parents chose this route when my dad was ill and my mom (who had MS) had to enter a care home. Her income was nil aside from Gov't assistance and Dad retained all the monies in his name.
My thoughts are with you and your family.
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A few years ago, patients with kidney failure could get Medicare coverage regardless of their age. Medicare covers hospice care. Call your local Social Security office and ask if this is still the case. If so, hospice could provide you with the respite care that you certainly need.
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In AZ, relative to applying and qualifying for Medicaid, the spouse is allowed to keep control of the house, 1 vehicle a bit over $100,000 in assets. You need to consult with an eldercare attorney that is specialized in Medicaid. The rules may be different because you also have dependents in the home. You may be able to get an initial consultation with an eldercare attorney at no charge too....if you ask or go through legal aide or the state bar association.
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to ozarkolly: it sounds to me that "your" office of aging should be reported for neglect in their duties to helping people. sorry you had a such a bad experience, ours was very helpful.
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He is already on dialysis. The kidney failure is a non issue.
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