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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.

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Junie, thank you for the delighful anecdote about your father (the "gift" speech). Most of us here get a lot of mileage out of rueful or ironic humor, but your story produces a genuine smile. No snark...no sigh....just a pure grin. Much needed. :-)
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Junie,
I have a 13 year old daughter and I wondered how in the future I could tell her if she wore something inappropriate without sounding judgemental. Your story about your father is absolutely the best I have ever heard. I want my daughter to think the same way when she starts to date. Hopefully many, many years from now.
Thank you so much for sharing.
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junie56. Here in Florida there are assisted living facilities privately owned. They take the social security check as full payment. They only house up to 15 individuals Check out your area.
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Junie - what state are you in?
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nolo/legal-encyclopedia/how-income-trusts-help-if-you-have-too-much-income-medicaid.html
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Junie, that is SO awesome of your parents!! ...so THAT's how we are supposed to have done it! I have become gentler as I've gotten older and (at least marginally) wiser but did my share of yelling and putting my foot down when it seemed called for...kids are "grown" but parenting them is still in process I think and I can always do better.

Seriously, I was secretly worrying that you might be like my cousin who has a bad habit of at least publicly, and I think even privately, idolizing her parents who were at best unsupportive and harsh, and at worst oppressive and abusive if half the things she's told me are true. They were horrible to her when she married a guy who quickly proved to be just a gold-digger (identity theft, ruined her credit in a matter of weeks) and had cheated on her ON THEIR HONEYMOON - they took his side and were against the divorce. And it makes her just depressed, turning anger inward on herself instead. Her mom was a little worse than mine in a few ways. And it is not just a matter of trying to remember the things they did well or the times they did provide or show kindness better than the other times, but she really writes things like "they were the most wonderful parents and human beings ever."

But I digress. Look, here's the thing. If you really do decide that you need to be the caretaker, do it and be proud and be positive. I hope there is some help and respite out there for you; people do quote a statistic of around 30% or more of caregivers dying before their loved ones...but hey that gives you a 70% chance of having a life after caregiving, think of it that way. However we choose to try to see that our parents have love and care, whatever mistakes we make or avoid, we need to find some joy and pride in it whenever we possibly can and take care of our selves while we are at it as best we can. Hugs!
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Junie, I agree! That was such a sweet and touching story, so much that I've copied it down, if ever I should have the opportunity to reuse it, Grandaughters perhaps! A story like that, can be reworded and rewritten, several different ways! Your Dad was right, women are a gift from God! I hope you chose wisely, for whom to give your special gift to!
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Junie, thanks so much for that beautiful story.
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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.
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OK, you checked one place out and it sucked. Someplace else might be more dignity-oriented and more suitable. Atmosphere as well as activities can be really different place to place. You are perfectly right not to try to force a round peg into a square hole.

And he NEVER made you do something you did not want, nor ever scolded you?? What a strange childhood! How did he manage that without just spoiling you rotten? Were you just an angel baby, even through the teen years? I have heard that works that way in some Quaker families but find it unimaginable in most American or European cultures.
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I just can't do it. I talked him into going with me one day just "to check it out". I couldn't have picked a worse day to go. When we got there they were having the participants shove plastic flowers into a piece of styrofoam and then plopping the "arrangements" into a coffee can. My Dad was a brilliant artist with one of his paintings even being hung in the capital building. When he saw what the participants were doing he looked crushed and said "please do not make me do this". I felt so sad for him. Dad was and is an amazing man. I find it very hard to force him to do something he is so dead set against because throughout my entire childhood he never pushed me to do somethong I didn't want to do. Heck, to this day I have never even heard my father raise his voice. He. NEVER once yelled or spanked or said anything to hurt me. How can I hurt him now?
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I know you may hate to do it and I'm surprised at myself when I do but just tell him you can't do it. You need help. When Mom says she doesn't want to go to Daycare I tell her sorry, but I make plans on the days she goes so unless she is sick she goes.
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I appreciate so much all of the helpful answers. One thing I have found out is that we can hire, using his social security check to pay for, home health care. If we spend about $800-$1000 (haven't been given an exact amount yet) a month on home health care then that offsets what he makes and can then qualify him with medicaid. I am still waiting for phone calls to be returned by several agencies and hopefully I'll know more then.
I hope that if I can get some in-home help maybe I won't feel so overwhelmed at times. I am not really comfortable with "strangers" in my home especially if I'm gone, and don't think my dad will be receptive to the idea but maybe with time we will both adjust.
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You need to talk to a Medicaid rep at your Social Service Office or check with Office of the aging. For homecare he may not qualify but a nursing home he should. His SS check will be used to offset the cost. Talk with his primary or whoever sees him concerning his Dementia to see if they can help place him. If he ends up in the hospital or rehab have him evaluated for longterm nursing. Refusevto take him home. Tell them he is past where u can physically take care of him. Homecare is not an option since u can't afford to pick up what his SS doesn't cover. Forget Medicare. They don't pay for longcare.
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Junie - thanks for being so gracious. It has to be frustrating beyond belief to be told black is white while your saying - correctly - no, black is black! I hope now that you know about the Miller Trust you can get some help. I agree your best strategy is to get temporary care that Medicare will provide allowing you some space and time to pursue the Miller Trust angle for Medicaid. I'm not surprised no one in "the system" told you about this - thank God for this site, right? When my son was first diagnoised with his disabilities I spent a year or so being told "no" - from schools, social services and the like. "We don't do that", "that type of thing isn't available", "you make too much money", "you don't make enough money"...it was an endless cycle of frustration. It wasn't until I hooked up with a support group for mothers of children with autism that I finally got some helpful, truthful answers and suggestions about what type of help was available. I think this is probably - sadly - true with aging care as well. Government agencys seem to try to keep ways to access help a secret. It seems that only caring people who have "walked the walk" down that same road are the best - and seemingly at times - the only truely helpful source of information. So - best of luck to you and if you have time, please check back and let us know how it's going. I'm certain your experience with this can help other people here.
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Talk to an elder law attorney that has expertise in helping people prepare for Medicaid. In Az we have something called an Income Only Trust or a Miller Trust. It specifically helps people like you dad whose income is higher than the income limit for Medicaid, but not high enough to pay for the 24 hour care they need. I hope your state has something like this. You may want to contact the department if health instead of social security. Blessings on you and your dad. Your doing great!
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Sit down with your siblings and tell them your situation, and that you can no longer care for your father. As a family you must deal with this because no agency has that responsibility. You are dealing with an issue that consumes millions of us who care give for our loved ones with dementia. When he falls next call the paramedics and he will be hospitalized. From there he can be admitted to a rehab that Medicare pays for and give you time to make other arrangements. There are group homes that are not as expensive as a regular nursing home. Do your research and find one. Hang in there!
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Hi Junie56,
Your fathers condition qualifies under cognitive disability. His doctor through medicare should of told you this. He can request hospitalization or short term rehab for an evaluation of dementia, or other like diseases Althimers, etc. during that time he is there you can start paperwork. There is a company here in Texas called Medicare Solutions that does all the paperwork guaranteed to qualify for $1,500.
Regardless, there are agencies that should provide diapers, wipes, gloves, etc for free. There is also respite for very low co-pay through Easter Seals. They received a grant to place respite workers in homes through the Althymers association. Your father does have a high SS income but does not even come close to pay for a memory care unit or any care. The Miller Trust is the best recommendation and very much worth the legal cost. My Mother lives with us and I empathize completely. I started this journey and felt so isolated until I kept reaching out to other agencies who took the time to educate me. So glad you found this forum. Hang in there and best of luck.
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Check out nolodotcom and search for the Miller's Trust info. You'll find info on states that have an "income cap" (few states) and those that don't, for the long term nursing home care that is needed for your family. Call a certfied elder law attorney and get the paperwork set up. Get the family doctor in on the process of getting your dad admitted to a nursing home pronto.
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Yep, I learn something new every day from someone here on the AC, which is one of the many reasons why I keep coming back!
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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.
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I read that the new SS max is over $2600 a month for people entering the system, so I learned something new here. That does create problems for people when it comes to Medicaid. I have the feeling Miller trusts are going to be very popular in the future unless Medicaid requirements change.
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What you can do if he's having some kind of health issue is take him to the hospital and try to get a hold of a social worker. Explain to the social worker you cannot handle the situation any longer and the elder cannot come back home with you. That'll get the hospital involved and they will know how to use the resources available to them. APS may also have to get involved, that's what they're there for.
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Agree that you need to find an eldercare attorney to set up a Miller trust, but I'm curious...how is mom's nh cost being paid?
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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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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)
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Read this and see if it helps: https://www.agingcare.com/articles/medicaid-and-long-term-care-133719.htm

Has your Dad been assessed and found to need the care? That seems to be first.
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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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One thing I forgot to mention...Mom is still in a nursing home and would love for Dad to be there with her since they have been married for 63 years. I have tried every angle I know to get them together but I hit roadblock after roadblock.
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Dad gets about $2000 each month in social security. I have been told repeatedly this amount disqualifies him to get medicaid. I have also been told by ss and several nursing homes that the ONLY time medicare pays for nursing home care is after an illness or injury and then ONLY for rehab, not long term care. For example: my mother broke her ankle while she was on medicare and required rehab in a nursing home. Medicare paid the bills UNTIL she was no longer making progress because the bone would not heal. At that point she was switched to long term care. Medicare called me themselves and told me they DO NOT pay for long term care, only rehab care (they will continue to pay as long as the patient makes progress), but because she only got about $600 a month she was eligible for medicaid. I had to file appeals with medicare every 10 days to continue to pay her bills until medicaid kicked in and at that point medicaid reimburssed medicare. At the same time we tried to get dad on medicaid, he was turned down because his abnormally high ss checks put him above the income limits to qualify for medicaid. And, no, there were no assets in a look back such as a home or bank account because my mother spent them into bankruptcy many years ago. They literally owned nothing, not even a car for at least 10 years before mom ever went into a nursing home, So, contacting Social Services now about 2 years later we are told the same thing...he makes to much in social security and will not qualify for medicaid. When I tried to reason with the worker she in no uncertain terms told me that they had guidelines and told me that making over $24,000 a year for one person exceeds the income limit to qualify for medicaid and it didn't matter if that income comes from McDonalds or the government. So, not ALL people qualify for medicaid just because the only income source is a ss check. It's all very complicated. He falls between the cracks.
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