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I must work full time. My husband is both disabled and on hospice care. He is frequently irritable, understandably. We have no family here. He is 65 and on Medicare. It is me, myself, and I caring for him. My brother is here until June 24th, when he will return to the Seattle area, and I will once again be on my own. We qualify for exactly nothing because of my job. I have 6 vacation days left this year. As he weakens, especially once my brother is gone, he will be alone all day, and I am gone 12 hours per day. That scares me. In the night if he needs someone, it is me, so my sleep is frequently interrupted, and as it is, even when not interrupted, I sleep with one ear open, so to speak, so I am beyond tired most of the time. I am not doing anything well. I am exhausted and do not know where to turn. Yes, he has a social worker assigned, but as we don't qualify for any assistance, her hands are tied. My work performance is suffering, and at home I have little time to do anything but dishes and laundry. I garden out of necessity, but it is also my peaceful place that is also my therapy for keeping my sanity. I don't know what to do. He is weakening, but he is fighting with all that is in him to live. Our daughter lives here (Chicago, IL), but she is a single mom with two children, a job, a mortgage and an AirB&B. She helps as much as she possibly can, given her own living circumstances.

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That's what I was mentioning. I do "shifts" where the nurse stays in the patient's house to care for the patient to give the family a break. This is usually done for pain that the family can't control, labored breathing or family crisis (unable to cope with the load).
Just a tip, say that you are in crisis mode and that you can not handle the situation.
As I understand it, not all hospices have this service to relieve the family and it's only for a limited amount of shifts, but it is something.
Check to see if your hospice offers "crisis care" shifts.
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Thanks. I will ask.
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When my husband went on hospice care, I was asked if I wanted respite. (I think it was for 5 days, but I'm not sure.) I said I could have used respite last year, or three years ago, or nine years ago, but now that we are at the end, I would stay with him. I did keep the PCA on, even though my husband wasn't awake much. Sometimes I just napped while she was there.

Maybe I missed this in the previous posts, but doesn't hospice offer you some respite time, cc? In your situation I would definitely take it!
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He doesn't do doctors. Hospice does have doctors, and outside doctors are not allowed on hospice care per government rules. If he needs a doctors care, we call hospice and they send out one of their doctors to the house, so that is not an issue.
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How do you get him to the doctor appt without a car once he has Medicaid you can get free transportation to the day care
Best wishes you really need respite or you are going to crash
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Thank you. Day care would be difficult since I haven't driven for over 8 years now (no car) and he should not be driving; our van is hard to get in and out of, so this is not a good solution. I will ask the social worker again about Medicaid. Thanks.
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You need respite. It was hard for me to come to the understanding that it is not all about him. If something happened to you because you did not take time for your self to be able to take care of him what would happen to him. Think of it that way. My husband would have been a tyrant also. I finally hired an aid to come in twice a week for four hours (paid $12.00 an hour). I told him she was there to help me with the housework while I worked but she was really there to keep an eye on him and keep him company. She did the laundry, made the bed, cleaned the bathroom all while being there and watching him. Yeah I lied to him but it worked. Then I finally took him to day care twice a week. Of course he did not want to go and people would say don't like him run your life but how was I suppose to get a grown man out of the house to go to day care he is not a baby that you can pick up and take him there. So I lied again. I told him he was going to volunteer to help the old people at the center. The director at the center was excellent in helping me with that. It has been three years that he has been going and he loves it. Wants to go on the weekend. Please, please investigate more in getting him Medicaid. I really think he can quality. You are considered the community spouse and they cannot put you in poverty because he is disabled. Yes I know there are income levels but I would still look into it. I work full time and make a nice salary but still under the income level required he gets less than $2,000 a month in income so they went by that. Once you get Medicaid, they will pay for an aid to come in and help you, day care if you can get him there and will pay for respite. I have someone come for 7 hours on Sunday for respite and 2 hours on Saturday.
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I understand that respite would be nice for me. However, he would be miserable and I would be the target of his ire. Not worth it. He is not near the end. Yesterday he said I need to either get better or die, and neither is happening. He is frustrated at being so limited, but there is nothing that can be done about it. He is on probably the best diet he can be on; very little sugar and lots of green leafy veggies, meat enough to support his dietary needs, yogurt and fermented foods for his digestion, which is always dicey because of the g-tube. He is going downhill; we can see it. He would like something to happen, one way or the other. He is prepared as much as he can be for his own demise. He is tired of the in-between.
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SueC...Thinking outside the box is what I had to do many times with my husband.
Lots of times when I hear things like what cccquilter is going through it puts me through a whole range of emotions.
Frustration.... that it is so difficult to get the help that is wanted and needed.
Anger.... that we have to force or are forced to do things like divorcing a person so that they qualify for aid, or impoverishing someone or at least spending down a good portion of savings or penalizing one spouse that has saved, particularly if they entered into the marriage later in life.
Sad ..that in a great country like ours there is sometimes no option but for a working spouse to quit their job in order to stay home to care for a family member. That often results in loss of self by way of removing socialization at a time when it is needed, loss of income and that may result in loss of home, or at least the possibility of having to go on some sort of welfare. Assistance with food, housing, utilities....
While Utopia does not exist there is no reason for ..
Children to go to bed or to school hungry
For our elder to go to bed hungry
For ill people to not get help that is needed
For families of people that need 24/7 care to go through additional stress when it comes to trying to find ways to get the help that is needed. 
My list could go on but enough for now....

Stepping down off my soapbox now.....
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Hi Grandma,
Right! Being a hospice nurse, I'm aware of what you mentioned. You can stop and restart hospice at any time, however. As far as I know, there is no restriction on the amount of times you re-enter.
You don't have to be on death's door to be enrolled in hospice. Her husband doesn't sound like he's near the end. I was trying to find a quick solution to cccquilter's predicament. Sometimes just a 2 week respite can provide enough relief to keep on going.
There do not seem to be many solutions to her problem. I'm just trying to think outside the box.
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SueC1957...once you are on Hospice you no longer call 911 and are taken to the hospital. Hospice IS your 911
If you are admitted to the hospital you are removed from Hospice. You can go back on Hospice.
This has a lot to do with billing and Medicare. 
You can be on Hospice in the hospital but you are not able to go to do "rehab".
Hospice in end of life and you have elected to stop treatment, rehab indicates that you have a wish to aid in recovery.

You can be admitted to a Hospice facility for Respite but that would be for a week at most.
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No, he would not go along with that, for sure! He hates hospitals like poison. He also would not be happy in a hospice placement, even temporarily. He wants to be at home. I am planning on talking to our social worker. Thanks, though!
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Last ditch effort, you could "play the system". Take him to your hospital ER department for 'weakness' and they might want him admitted to a rehab facility for a short time to "get his strength back". It would be buying time. He possibly could remain there for a couple of weeks.
I don't know if he would go along with it or not but it would at least give you a break for a bit. Believe it or not, this happens all the time.

Some hospices also do respite care (the one I work for does), a few shifts are available to assist the family in crisis. Check with your hospice to see if this is available to you.

Go ahead and find a christian church that would most closely align with your beliefs and present the situation to the pastor. I'll bet you'd get some help even if you don't belong to that church. Good luck and God bless.
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Barbrooklyn
Good advice I think he could qualify for Medicaid under that program. I don't think I could survive without the help I get from Medicaid
She is in a crisis situation
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I will check it out. Thank you.
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"As applies to the Community Care Program Services

The Prevention of Spousal Impoverishment standards for Community Care Program services, mandated by Public Act 87-740, seek to prevent a married couple from being impoverished by the costs of long-term care, allowing them to maintain an adequate estate and monthly income, while providing a resource which will pay for Community Care Program (CCP) services for the impaired spouse.

It is the policy of the Department on Aging that CCP applicants/clients who are married with one spouse applying for CCP services are required to apply for Medical Assistance through Medicaid and be eligible or enrolled with a spend down for such assistance to be eligible for CCP services. If they do not meet either of these eligibility criteria, they cannot receive CCP services.

Spousal Impoverishment Prevention allows a couple to divide their assets for purposes of eligibility when one spouse needs Medicaid payment for nursing facility care or Community Care Program services. The spouse not needing Medicaid payment may keep $109,560 in assets."

This is from the Illinois.gov website.

You can divide your assets. You get to keep in excess of 100K. By the looks of this, your husband would qualify for Community Medicaid, which would entitle him to some number of hours of home health assistance.

The link that I posted above if for Chicago Volunteer Legal Services. I think you should check this out.
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Www.cvls.org
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CC, how sure are you that your husband doesn't qualify for Medicaid?

Are there any law schools in your area that might hold clinics?
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Thank you, everyone, for your excellent advice. Unfortunately I have explored almost all of them and was forced to discard many, such as an attorney, as far too costly for us to pursue. I will check the property tax exemption/homestead exemption/senior exemptions, as they may help with that aspect, as we have some of the highest property taxes in the nation, and it is onerous.
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Living with my daughter would be okay with me. It would not be okay with her father. She tends to be a bit bossy and he does not respond well to "bossiness." She suggested it once, and he rejected it out of hand and still does. Also, it would take considerable time and effort to make the house marketable; something that will have to be put off until a later date, as I have little time or energy for that now.
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He would be miserable in a nursing home and hate it. He wants to be home; I want him to be as comfortable and happy as possible AT HOME. That is not an option without his specific consent, and I will not do it without that. My mother was placed in a nursing home against her will, but she was alone and falling, and I don't think she ever forgave us for that. So I will never do that to my husband, and never mind that it is totally unaffordable for us. I can't afford a lawyer. It is so easy to say to consult a lawyer, but that is so very expensive! As I said, we have a fair amount of debt and I do not want to add to it. When he is gone, I will have his SS to help me stay in the house so I can ready it for sale, but right now it is used for paying utility bills and buying his supplies that aren't covered. Meals on wheels wouldn't work; he has a feeding tube and his swallowing capacity is quite limited. I do not have an insurance policy that I can borrow against. Also my job is one that has to be done on site; it is not something I could take home, unfortunately. Our grandchildren are quite young, 6 & 7 and are not even close to walking distance; we see them about every week or two on weekends. They love to garden with me, but as far as cleaning, for me I don't want to assign them chores at Grandma's house. I want them to want to come see us, not dread it. We don't see them enough for that, anyway, so we just enjoy them when they can be with us. FMLA time would be nice, but that is unpaid, so if I do that, my mortgage will go unpaid. I wish there was some way out of this, but there is not, apparently. I am so very tired. Once my brother leaves, he will be on his own most days. I may talk to a neighbor to see if she can help out, as she is a teacher and off for the summer; he knows her well as they are close friends, so that might work for me; I have yet to speak with her as school is still in session.
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I would consult with an Elder Law attorney, who is WELL versed in Medicaid and State benefits that someone in your husband's situation may be entitled to. The problem with listening to what someone who is not very well informed, is that they don't know technical issues that could make a difference. There could be something legally, that has not been considered. AND, I'd consult with a Family Law attorney to see what your rights and obligations are regarding your husband. You may need two legal minds working together to be creative and to find you some options.
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About "moving into a Hospice House"
Hospice, at least the few I know of, have "inpatient facilities" that are for respite and that would be a week. Or to get uncontrolled pain under control. Or for really close end of life if that can not be handled at home.
The idea of Hospice is to, if at all possible to allow the person to die in their home with family near and comforting, familiar surroundings.
So  "cccquilter" would not, under most Hospice guidelines, be able to place her husband in a Hospice facility for an extended period of time.
And due to his condition the only place that he would be accepted would be a Nursing Home. Since I imagine he requires a Hoyer to be moved. Most Assisted Living, Memory Care facilities are no longer able to use equipment to transfer a resident. (obviously wheelchairs are not in this category)
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And Google " prevention of spousal impoverishment Illinois"
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http://www.egyptianaaa.org/SpousalImpoverishment.html

I would find a certified eldercare attorney who is familiar with Medicaid in Illinois. Call your local Area Agency on Aging; they may maintain a list of lawyers
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I thought you said he is both disabled and on hospice care. What more does he need to move into a hospice house?

I sure feel bad for you.

I assume that if the kind of work you do could be done from home, you would have already discussed that possibility with your boss, right?

Do you have insurance policies you can borrow against, to make it possible to take some FMLA time? It is more debt, but you can chose whether to repay it or not.
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A few ideas:
#1 Meals from church friends
#2 Meals in Wheels
#3 Yes, help from grandchildren. Even a 10 y.o. can sweep a floor, dust a cabinet.
#4 Get help from VNA
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Thinking outside the box.. how old are your grandchildren? If they are early teen or so, maybe you could pay them a bit to help you around the house.. like do the laundry?Not too much, but enough to give you some more time?
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You actually have 2 full-time jobs. I hope that you can get respite from somewhere.
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No, he cannot be moved to hospice accommodations. The rules will not allow this, as he is not yet at that point. I cannot quit working, as I keep a roof over our heads. I have checked with Medicaid; he does not qualify in IL, where we live, as they look not just at his income, but mine also. Florida has different rules than IL. FMLA is fine, but it is unpaid leave, so cannot use it without vacation time involved. I didn't qualify for respite aid due to my income. We were denied Medicaid in IL. A home equity loan is out of the question. I don't need more debt! Hospice supplies everything he needs and bills Medicare, so his needs are taken care of. I am just short on sleep and time is at a premium.
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