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My 95 year old grandma lives with my 64 year old dad and they both are in need of care, my grandma more so than my dad. My grandma has pretty advanced Alzheimer's and needs full 24/7 care -- dressing, changing, showering, supervision so she doesn't fall or wander off. She can assist with feeding and changing to some extent and can walk slowly with a walker most of the time but sometimes is too weak to walk. My dad has Acute Myeloid Leukemia and is also weak and spends most of the day sleeping. I know medicaid doesn't cover full 24/7 care but I'm wondering if there would be a way to get in home care for even just a few hours a day, which would make a big difference. I try to help them when I can and stay with them for a few days at a time, but I live out of state and work full time. It's a very difficult situation emotionally as well as the caregiving takes a lot of patience and they are not being well cared for and it's hard losing them both at the same time. I've considered hiring a private caregiver through a care website but I definitely can't afford it and my dad and grandma aren't able to afford it either. They both have medicaid but I'm not sure what's covered. My uncle is there every day taking care of the house and doing personal cares to some extent but it's too much for just him. He is resistant to a skilled nursing facility though and he's my grandma's POA. Any advice is greatly appreciated! Thank you!

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I would not enable this awful situation by joining in the caregiving.

I would sit with your father and explain that this won't work. And ask him to consider what happens when he is gone, should he die before his mother. Or what happens should he need hospitalization.

I think that you need the intervention of social services here. I am very concerned and hope you aren't living with the two of them.

I would call APS were I you. They will have the ability to get them in touch with resources which may exist in your area, and will be able to give them the counseling that they will not accept from a daughter/granddaughter.
They will have social services check on what is available to them.

Call APS as soon as the New Year Holidays have passed and explain this the exact same way you did for us; in fact, you can read your note to us right out. Ask them to visit, open a case, and intervene if needed.
Meanwhile speak to your father and tell him that you understand his reluctance and you understand you as his daughter are the last to advise him, but that this isn't acceptable and it is going to come to disaster when this situation detonates.

Good luck. I am so sorry. This is horrific. Really terribly sad. I doubt you can help and I am afraid in trying you will enable.
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Your grandma needs to be in a facility. Dad cannot handle her care. Medicare will not pay for the care grandma needs. If she has no money, Medicaid will pay for her care in a NH. Once she is placed, then you see what is available to Dad. At 64, he can collect his SS. He maybe able to get help thru Medicare ""intermittent" care. Medicaid he would get some help. Office of Aging can help him with resources.
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elisny Jan 4, 2024
To me your advice is off base - and to relegate someone to a "facility" is cruel IF there is any other option.

My option will be death and everyone who knows me, knows that is my preference. No LTC facility. Period. Let me starve.
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Has anyone actually contacted the state Medicaid office for advice? That would be number 1.
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Don’t enable this by upsetting your own life ( and finances ) because your uncle “ is resistant to a skilled nursing facility “.
This is unsustainable , your uncle will have to give in . Grandma needs a skilled nursing facility . Medicaid will pay for grandma .

You can ask about getting help in the home for your Dad , from Medicaid .

If the situation is dire , call APS , or the County Area of Aging.

Good luck .
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YES! It all depends on the provider that you have. My mother has Alzheimer’s and my stepfather is physically unable to take care of her, so we live in PA and applied for aid and it took about 4 months of meetings,paperwork and dozens of phone calls, lot and lots of stress, (I didn’t know what I was doing then ) but she was approved and we were able to get 16 hrs. a day of in-home care fully paid for as well as lots of small things like adult diapers/wipes and a walker or wheelchair, hospital bed, grab bars for the shower etc..so it was SOOOOO worth all the stress etc..because by the time we got everything approved, my mother had gotten worse and we really appreciated the help. Also, go to your library or Amazon and get the book: “My aging parents need help-7 steps to caregiving” by Cynthia Kaye. I didn’t know much, so it really helped me. Well, hoped this helped. Hang in there and remember to take care of yourself too!
S. Tweed
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Sorry you are dealing with this. As others have said, YES get with an elder care attorney licensed in the State where they live. Paying for this, should come out of their finances NOT yours!

In THEORY, Medicaid might pay for some in-home aides but PLEASE get with an attorney experienced in this ASAP as 1) each State is different, 2) what is or is NOT provided is different across States and 3) THE BIGGIE -- MOST States have long waiting periods even if one qualifies for an in-home Medicaid-covered aide.

When considering this just a few years back, we were told the waiting list in our State was FIVE YEARS! That most folks pass before ever seeing an aide as the demand is very, very high and there are SO FEW folks who do this work because private pay aides make loads more than those working for Medicaid AND pay is so much higher at facilities (assistive living, nursing home, hospitals, hospice, on and on).

Get APS involved ASAP and get them moved into a nursing facility. Given what you have described, it is not realistic much less feasible for home aides (even if your State has a short waiting list) to handle this.
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Yes.

The program is called "Program of All-Inclusive Care for the Elderly" or P.A.C.E.

See: https://www.medicaid.gov/medicaid/long-term-services-supports/program-all-inclusive-care-elderly/index.html

I turned a friend on to it for her husband. It has been a godsend. However, that may or may not be the case in your area. You will have to check if it is available and, if so, apply.

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Important Point: NO FACILITY PROVIDES 24/7 CARE. They may be staffed 24/7, but the care and attention is intermittent. If your grandma is placed in an assisted living and/or memory support unit, she will most likely be shuffled around, required to live on someone else's schedule, and given little to no truly personal attention. I visit a friend in such a place. The lack of attention or truly getting to know residents is pathetic. I can't tell you how many times I have found her with wet pants - even after I got them to order Depends like underwear for her. I also spent 5+ years caring for and advocating for my parent stuck in a "high end" care center. It was nothing but institutionalized neglect. The more care and attention you needed, the less you got relative to your needs.

Anything you can do to keep your grandma in a familiar place with familiar people will be a blessing. But in the end, just do your best and learn to accept there are rarely perfect solutions.
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lealonnie1 Jan 4, 2024
My mother had wonderful one to one attention in Memory Care Assisted Living for the nearly 3 years she was there. Toileted religiously every 2 hours, too. No "neglect" whatsoever or I would have pulled her OUT of there, as any loving daughter would do.
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Find an Elder Law Attorney and get the facts and plans - educated advice is a good investment: each person is responsible for his/her elder care....................take the advice your attorney gives you.
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I totally agree that a Social Worker is needed. Sometimes we have to do things we don’t want to like getting grandma to a memory care center. The US is Negligent in their care for the elderly. I don’t know but possibly AARP has some helpful information.
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dadandgrandma: Perhaps they both require residence in an SNF despite what your uncle's wishes are. Never use your own financials for your loved ones' care as you'll need them for your own elder years. This is a dire situation that can't be sustained.
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