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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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I hate to be a downer and, unfortunately, I have no suggestions that would help you, but I hope your experience with Agency on Aging is better than mine was. They were absolutely NO help, couldn't suggest any programs or solutions & didn't seem at all inclined to dig any deeper than a "No, I can't think of anything to help you". They were, however, more than happy (and quick) to tell me that I could be prosecuted for neglect if I knowingly allowed an unsafe parent to remain home alone. Can't say I have much faith...or respect for that matter...in the Office of Aging.

Getting help with elder caregiving is almost as difficult as it is to get help for the mentally ill. And God forbid if you are mentally ill AND elderly!
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If he refuses dialysis, his time is very short and you should immediately get a referral for Hospice. Very short. Maybe a month. Sorry.
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check with the doctor first on the meds given for hiccups, they might in turn make your husbands kidney failure even worse or speed up the failure rate. I would try something more natural if possible but again, always check with basically a pharmacist since they know more of what reacts with other stuff.
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Try Haldol for the hiccups. My insurance company will cover respite care at a SNF if the caregiver is exhausted. It sounds like you are. Call your health insurance company, ask to be part of their "case management" program. These nurses will help you find a solution that keeps you, and your husband out of the hospital.
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Let me second the mention of getting a elder law attorney. You do not need to spend down your half of your money. Let the lawyer help you. They are expensive, but much cheaper than spending down all your savings.

As for the hiccups, I used to work a chemo floor at the hospital, and hiccups are not uncommon, as was mentioned above. The drugs we most often used were Reglan (aka Metoclopramide) and Thorazine (aka Chlorpromazine) and Neurontin (aka Gabapentin) . Has his doctor tried them? If they didn't work there really are lots of choices, some more effective in certain types of situations.


For what it's worth , this is a cut an paste of an article with other drug suggestions.

"Various agents have been reported to cure hiccups. Chlorpromazine appears to be the drug of choice. Haloperidol and metoclopramide have been used successfully. Several anticonvulsant agents (eg, phenytoin, valproic acid, and carbamazepine) have effectively treated intractable hiccups in typical anticonvulsant doses. Gabapentin has been effective in patients with central nervous system (CNS) lesions and in some other groups.
Of the anesthetic agents, ketamine has been the most successful. Baclofen is particularly useful in patients for whom other agents are contraindicated. Lidocaine has cured patients after other agents were unsuccessful. Other reportedly beneficial agents include muscle relaxants, sedatives, analgesics, stimulants, and various miscellaneous agents (eg, edrophonium, dexamethasone, amantadine, and nifedipine). Benzodiazepines should be avoided. "
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Besides your children, do you have any other family or church members that could provide you with a break from caregiving? The suggestion to contact a good elder law attorney is excellent. You really need to do that ASAP. You are definitely in a bad spot and you will need to reach out to others to help you out: your doctor, his doctor, a medical social worker, the elder law attorney, the local area on aging group, clergy, other family, etc.
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I'd definitely check with an elder law attorney about the 401 K. Contact the local area agency on aging, there is a program called a 'waiver' , it provides funds for in home care-I don't know if he'd qualify but it's worth asking. If he is found eligible for waiver and is approved for services, they may help with payment to an assisted living facility-this would give him the care he needs and give you and the children a break. The AAA may also be able to make other suggestions that would help. Good luck.
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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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What about FMLA and/or using vacation or sick time when you need to be with your husband during one of his crises?
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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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again, seek out the advice of an Elder attorney. they know what can and cannot be done.
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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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I was thinking divorce also. Same reason elderly don't get married, need to keep finance separate.
Friends need not know everything.
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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 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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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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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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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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When my husband had the hiccups as a side effect to the chemotherapy he was on, the doctor prescribed a medication that resolved the problem. I do not know the name of the medication. Perhaps his renal doctor or pharmacist could help you with that. But his hiccups were so severe that he could not sleep (and neither could I). The medication helped almost immediately.

And have you contacted your local Area Agency on Aging? Even though your husband is relatively young, they will have resources that will help you.

Through his doctor is there a support group you could connect with, even just one time? It might be helpful to give you some new sources of support. Or through the National Kidney Foundation you may find information to help you. They have resources for financial assistance as well as patient and caregiver support. Hope this helps.
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