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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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I really feel compassion for you mswilliams. You are just left to fend for yourself. This is the situation of the American middle class. Not enough money to pay for the terribly expensive nursing home or home care. Not poor enough to qualify for Medicaid. Not willing to throw yourself and your family into poverty to qualify. Any way you look at it, the whole system sucks. The French don't have to worry about how to care for their elderly, nor the Danes, nor the Dutch. America - Number One! When will people wake up and demand the services given to their citizens by every other civilized country in the world?
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Check with Nat'l Kidney Foundation kidney.org for local office. They may well have services that can help. His doctor should be a good resource for getting you help at home. Best wishes.
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If you haven't seen an Elder Care attorney you should at least have a consultation. You can refuse to provide spousal support, but the consequence is that Medicaid may sue you. Do you have an Employee Assistance Program (EAP) at work? Let them help you find the services you need. For a short respite your local assisted living facilities may take your husband for a short stay -- for a fee of course. My situation with medicare, spousal support and paying the nursing home for the period my husband didn't qualify for medicaid is still unresolved. Try to make time to meditate/ just be quiet for 15-30 minutes. Sometimes it helps me come up with steps I can take towards a resolution. Hang in there. God bless.
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I don't know if this might help.... and you have enough miseries, but have you considered divorcing him so that your 401k and your income would not be considered his property and he could get more assistance?
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I would look for more information about what the state will want your family contribution will be toward your husband's care if he goes on Medicaid. The state has no interest in impoverishing the spouse and tends to have community spouse allowances that will let you hold onto much of the property and money accumulated during your marriage. To get some idea of what the allowances are for community spouses you can probably get an idea by checking online. If it looks hopeful, I would say go ahead and apply, remembering the state has no interest in leaving you in poverty.

Divorce is not a good answer. It can no longer be used to shield assets from Medicaid, since money and property obtained during the marriage are considered to be community property in many states. This varies from state to state, so you need to know the rules for your individual state.

I have heard of Spousal Refusal, but don't know how that works or what the outcome would be.
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again, seek out the advice of an Elder attorney. they know what can and cannot be done.
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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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like someone said contact a good Elder attorney, one that only deals with older patients and the situations that arise with this. We got one when my father had to go into a NH. Yes, it will cost something but they have been so helpful, we can ask questions anytime, they provide everything we needed to get for them to help us get the Medicaid approval for my father. Good luck with the hiccups. usually its an upset in the diaphram that cause this, so either nice long very slow inhaled/exhaled breathing. this helps to calm the diaphram, it might also help with the anxiety. praying for you both.
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This suggestion for getting rid of hiccups is accurate and works every time. I've used it for me and all members of my family for years! You may need to call on members of your church community to see if they can step in and give you some respite for a few hours on a Saturday or Sunday. I am so sorry for the trauma you all are going through.
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Here is a link with some information about general rules (National) for Medicaid spousal allowances. Medicaid is administered through the states, so there will be differences between states. The states have to abide by the federal guidelines, however. The guidelines provide a base for them to build the state program.
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