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Money is a big problem here. Their income is too much to qualify for assistance and yet they don't have enough money to pay out of pocket. My niece is the primary care giver for my sister (88 with dementia) and her husband (92 and just old). Many meds have been tried to help sedate my sis but they don't work for one reason or another. They try to keep her awake during the day as much as possible. Herbal meds do not work. She either chants or screams for hours. My concern is for my niece and my BIL. With neither one of them getting decent sleep, I'm worried that one or both will wind up ill or....... Suggestions please.

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I don't think this is sustainable for long term in home care.
I would see an elder law attorney to work on placement that will accept, for the two of them, their income, with Medicaid applied for once income exhausted.
I am so sorry. Sounds as though this just isn't working, and I don't think there is any longer affordable in home care over more than a couple of hours a few times a week, which just won't help you.
I sure do wish you the best of luck.
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Reply to AlvaDeer
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It's called applying for Medicaid and getting them both placed in the appropriate facility. They are now beyond trying to keep at home and need 24/7 care in a nursing facility.
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Reply to funkygrandma59
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Contact an elder care lawyer. If affording it is a problem, family can contribute to help pay for it. It was worth every penny for me to hire one. Hopefully they did not co-mingle their monies..that can cause issues with Medicaid application and look back.
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Reply to dogwithav
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If their income is too much to qualify for Medicaid, then some of it has to be spent on Care either at home or in a facility. Nobody wants to spend so much money on Care, but there is not yet a good alternative in our country.
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Reply to RedVanAnnie
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If their income is too much to qualify for Medicaid, then some of it has to be spent on Care either at home or in a facility. Nobody wants to spend so much money on Care, but there is not yet a good alternative in our country.
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Reply to RedVanAnnie
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When money is a problem, there is no real 'affordable' help. That's when family members have to step up and assist the caregivers. When there are no family or friends that will do this sort of thing, the caregivers simply have to navigate on their own.

If it's their income won't allow this extra expense, try asking family members if they can assume some of the other bills the couple has to pay or contribute to the extra help expense. Maybe someone in the family can afford to help financially even if they won't help physically. Are there any expenses that could be cut off in order to come up with some extra cash? Prioritize all the bills to see if some are luxury while others are necessary.

There should be much concern for the niece and BIL. They will wear out. They may have to work out shifts between the two so that one is sleeping while the other manages care.
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Reply to my2cents
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Igloocar Oct 16, 2024
My2cents, with paid caregivers running between $20-$30/hr, it's not reasonable to request financial help from others or to cut expenses enough to make a significant increase in available funds. We don't know the circumstances, but if the sister and sister's husband were not able to save enough to cover long-term care expenses, then a Medicaid bed in a nursing home may be the only realistic solution, regardless of what was once promised to the OP's sister. Since the sister's income is currently too high for Medicaid, an elder-care attorney will be needed to help plan ways to qualify.
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sad4sis: Seek the advice of an attorney.
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Reply to Llamalover47
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My husband did the same. It was honestly the worst part of caring for him.
All night long. Drove me crazy!

One thing that helped me was a medication, Trazodone. It is very safe and it knocked him out, when no other drugs would.

Another thing that helped me was moving out of our tiny one bedroom apartment into a larger house. I now sleep in the spare bedroom. He still has nights that he can't sleep and moans, groans and yells for help all night long.
I simply can't get far enough away to not be bothered by it.

For the most part, he is on a regular sleeping schedule, with the help of Trazodone and now Depakote, which I give 30 min to an hour before bedtime.

Keeping a consistent routine is very helpful. Not overstimulating the person with dementia is also advised. Any change in routine or overstimulation can cause the nighttime agitation.
Does she have a tv, or large computer screen in the bedroom? You can play soothing scenery and music, or really simple animated movies. My husband watched animated movies over and over again, like a young child. That may help to distract her and keep her calmer.

I wish you all well. I know how frustrating this is! It's awful!

If she can qualify for hospice care or a nursing home, that would be best.
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Reply to CaringWifeAZ
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Trazadone and Melatonin at bedtime to help with sleep. Also just started my mom on Seroquel for anxiety. Finally, as someone mentioned before, it may be time to file for Medicaid in order to get them placed in a home. The Medicaid thresholds are different if trying to get it for placement in a home. And, even at this point if not ready for placement, file anyway. You get a better choice of homes if Medicaid is approved vs. pending. Good luck!
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Reply to AngiSO
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Thank you all for. your input. My sis and BIL made the local family (I live farther away) promise to NOT put either one in any kind of care facility. It may be a promise they cannot keep and I did say so to my niece reassuring her that it would be OK to put her/them into a facility.
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Reply to sad4sis
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AMZebbC Nov 1, 2024
This is very unfair to the direct caregiver for to make them promise something that is not possible due to the circumstances.

In my opinion the person responsible for making them promise wanted to relieve themselves of any accountability for this situation. And place all fault on the caregiver if they are to be placed.

I hope your niece doesn't feel guilt that this situation is heading to placement.
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sad4sis, please note that 40% of family caregivers who care for someone with dementia will die leaving behind the love one they were caring. Those are NOT good odds. Than what? Your niece would be gone, and who now would care for your sister and her husband?


It would be better to place your sister in a skilled nursing facility using Medicaid (which is different from Medicare). That way your brother-in-law will know his wife is in an environment where it takes a village to help her. And now he and their daughter can get a restful night sleep.
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Reply to freqflyer
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Has hospice been called in? They have the strong drugs that will knock your sister out and allow her body and mind to rest, not herbal remedies. I mentioned this to you in one of your other posts on this subject. I'm sadder for your niece and her husband, frankly. Making unreasonable promises like this can cause THEIR demise before your sisters! Nobody should be in this position, none of them!

You should take over the care and management of your sister immediately so you can place her in a SNF with Medicaid funding the bill. Let your niece and her DH off the hook for all of this. They've done more than enough.
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Reply to lealonnie1
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“My sis and BIL made the local family ..promise to NOT put either one in any kind of care facility”. How nice of them! What a super way to control other people! How constructive!

Yes, you are right, it really does make me cross. Just remember that the family did not promise how they would be treated when they stayed at home. You need to make the facility seem like a better option. That's if the family wants to stick to the promise. And just check if any of them are divorced, and how they coped with breaking the 'marriage' promises when things turned out to be different from expected.

Give them the option of staying in ‘their home’ with very little support, or alternatively agreeing to go into a care facility. Two days with minimal food and care will probably do it. If you like, leave them to spoon up flaked oats and milk,. That's particularly healthy in the short term but terribly boring. Then they can change their own minds.
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Reply to MargaretMcKen
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