junie56 Asked April 2016

Is there any affordable help or am I destined to spend what ever years I have left as an overwhelmed locked up caretaker?

I am soon to be 60 years old and the caregiver for my father with dementia. I am getting to the point that I am not sure how much longer I can care for him. He continues to get worse and I am feeling so overwhelmed. He is the most modest man I know, I've never even seen him wear shorts. This morning he hobbles into the living room with no pants or underwear on! His behavior is deteriorating quite rapidly. He has no house, savings, retirement, etc. His only source of income is his social security check. Apparently his check is larger than average, large enough that he cannot qualify for medicaid, yet small enough that he cannot come anywhere close to paying for a nursing home. I have called social services for help and have gotten nothing more than kind words. He can barely walk and falls on a regular basis. He outweighs me by a hundred pounds. I am having a terrible time getting him in the shower. His memory is shot. He wanders at night. There are so many issues I would have to write a novel.
I am being told by Social Services that he cannot go to a nursing home because Medicare only covers short term stay after a hospitalization, he makes to much in Social Security to qualify for Medicaid, and we are expected to pay about $7000/month out of pocket. Between my retirement check, Dad's SS check and my husbands paycheck we don't even make that much a month! Not even close! I've asked them "What will I do when he can no longer walk at all, carry him around?" And they answer "Well, you just do the best you can" That's not an answer!! They tell me we can hire home health care to come in for a few hours a day to help. That's fine except for the fact he is losing control of his bodily functions. I asked them what do I do if home health care workers come from 8-10 but he goes to the bathroom in his pants at 11? The same answer....just do the best you can.
Dad has been here for almost 2 years and I am virtually a prisoner in my own home. There just doesn't seem to be any answers that are affordable since he qualifies for nothing. I have 2 brothers and one sister. My sister helps about one weekend a month but she is still employed and can only occasionally give us an overnight reprieve. My brothers are both retired but yet are just so busy they can't find a minute of time to help. I feel like I am going to lose it one day and always seem to be on the verge of tears.

Burnout

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I feel for you. I care for my Mom, who has similar problems. Although i almost feel lucky--she is bedridden so cannot walk around naked!

From what you describe, your father could qualify for Medicaid. You don't mention the amount of his checks, but I am fairly sure it wouldn't cover a nursing home. What i would recommend is that you contact a nursing home and ask to speak to their business/Medicaid liaison. I have been able to get lots of good information about the process of transitioning to Medicaid. If the place you call doesn't have someone experienced with Medicaid, try somewhere else. I just called Heartland in Lynchburg, Virginia, and they have a Medicaid specialist who will be calling me back. Good Luck!

Helpful Answer (7)

I thought this situation was exactly what calls for a Miller trust to be set up. I think that would require an eldercare attorney. I got this just googling Miller Trust: If a Medicaid applicant's income exceeds the lawful amount for Medicaid eligibility ($2,199.00 effective Jan. 1, 2015), a Qualified Income Trust must be created with the applicant's income in order to create eligibility for long-term nursing home care benefits. This instrument is also called a Miller Trust.
Medicaid Qualified Income Trust (Miller Trust)

Helpful Answer (7)

I agree with grumpy. Whomever you have been speaking to at SS is giving you bad information. Your father should qualify for Medicaid if his SS is his only source of income and he has no other assets. Do contact a nursing home that accepts Medicaid. It is in their best intrest to get patients so someone there should be willing to walk you through the steps. Yes, the nursing home will take your dads entire SS check but then Medicaid will pick up the difference. Of course once your dad is qualified you will have to take the next step and place him. I should add that your father needs to be deemed necessary for the level of care required for a nursing home placement - his doctor should be able to do that based on what you discribe your fathers condition to be. Seriously - what if something were to happen to you - dad wouldn't be put out on the curb, this is what Medicaid is for.

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Funny you should say that. Dad was not a quaker but his parents were and he was raised that way, he became a methodist later. Beieve me, I was no angel. When I did something wrong he would pull me aside and talk to me about the issue. I swear he had a story for everything. It was always stories that made you think. For example, I wore an article of clothing that was inappropriate. Instead of becoming angry and yelling "You're not leaving the house dressed like that!!" he pulled me aside and said this...."A woman is one of the greatest gifts God ever gave to the human race. You are a gift. A woman's clothing is kind of like gift wrapping. No one wants a gift half wrapped. No one wants a gift that they already know whats in it before they unwrap the gift. As a woman you have to respect your gift and consider very carefully which man will have the honor of seeing the gift you have to give. All men will want your gift, but since your gift is so special you have to decide very carefully which man is special enough to have the honor." Now, by the time he was done I thought I had something more precious than gold. For many years I would look at a guy trying to put the moves on me and think "You are not special enough to receive my gift". I could tell countless stories he told me over the years. I was not spoiled at all. Heck, my parents didn't have enough of anything to spoil us kids except prescence, not presents.

Helpful Answer (6)

junie, the maximum that anyone can receive from SS is less than the amount that they can qualify for Medicaid. If he had some other source of income, such as pension, it could push him over the amount. If all he receives is SS and he has no assets, then the others are correct. He should be able to qualify.

Helpful Answer (5)

Junie, He won't get Medicaid at home, but he will at a Nursing Home because the expense will exceed his income.

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Go to a nursing home and ask these questions. They can explain to you that the cost of the nursing home offsets his income. Federal rule.

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Thanks for all of the info. I will look into the Miller Trust. I've never heard of that and no one in social services has ever mentioned that it even exists. AND...no one here is an ass, don't ever feel that way. We are all fighting our way through this and we can each only offer the info that we are aware of.

Helpful Answer (5)

If social security is his only income and he has no assets in his name then he will qualify for Medicaid - that's why it's there. But it must be a nursing home and long term care need.

Helpful Answer (3)

Junie - my apologies! Based on vstefans information I just qualified for "learning something new everyday" and feeling like an ass! You poor thing - how absolutely frustrating and stupid this is. I guess so few people get a SS income of that amount you just don't hear about this ridiculous ceiling! Sounds like your only option is to seek out an elder attorney and look into a trust as mentioned. Attorneys are usually costly but sounds like it would defiantly be worth it in your situation. I know my moms lawyer volunteers one day a week at the senior center in the neighborhood where he has his office - maybe try looking into something like that or maybe your county department of aging and disabilities might have a list of sliding scale lawyers. On a side note - my dad was a very proper gentleman, brought up by a British mom. He did wear shorts in the summer. Anyhow - for some reason in the last couple months of his life he took to walking around their apartment in his depends. In front of caregivers even - thank goodness they seemed to take it in stride. When he'd do it while I was visiting I was mortified on his behalf - this was SO unlike the man I knew that it stunned me. I bought him a new robe and a couple pair of comfy, loose fitting men's "lounge pants" - glorified men's pj bottoms. This helped a bit but soon daddy was pretty much bed bound and in the saddest of ways the problem resolved itself. So my sympathies for the streaking and my apologies for being an assuming ass.

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Is there any affordable help or am I destined to spend what ever years I have left as an overwhelmed locked up caretaker?

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