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I guess the question I should be asking, my mom is 96 and has been diagnosed with Alzheimer's/dementia by a doctor. She has had a number of falls and was diagnosed with Aortic Stenosis. Her doctor said due to her age, her Aortic Valve can not be repaired, he said based on her condition, she might have another year at best.


The biggest problem is she hates nursing homes and refuses to go. She keeps saying it's her house and she has the right to die in it. If someone even tries to talk to her about a nursing home, she'll gouge their eyes out. I've seen her go all commando on someone and order someone to get out of her house. She told me there is no way a nursing home could keep her in her room, she says she'll just walk away. She says she'll refuse to eat and scream bloody murder until they let her out.


I recently received an email from her case worker that she had been approved for a bathroom remodel (they want to take out her bathtub and convert it to a walk-in shower). My mom wants to have it done ASAP, but I don't want Medicaid to spend $3,000 on converting her bathroom.


I was talking to her neighbor and realistically, I can't just continue to provide 24 hour care 7 days a week because no other caregiver is available. Assisted living won't take her because she needs too much help. She thinks she would be okay being alone for a few hours but all she does is sit in her chair and she can't get to the bathroom without help.


I know people here have been concerned about if I get to keep the house but then I talked to some friends of the family who said they would buy it for me if it came to that. It won't sell for much because the whole house needs to be rewired. It has an old fuse box with four 15 amp circuits. The plumbing needs reworked as when the washing machine empties, water backs up in all the drains and there's a number of things on my list that need fixed or replaced.


So then what would be the procedure for placing my mom in the nursing home given that I can't talk to her about it? I've been here for a year in March and I've seen her condition deteriorated in that time, so I don't know what the chances of making it another couple of months are. I've checked and the closest place with Medicaid beds available is about 30 miles from here.


She doesn't seem to understand that I got fired from my job because I couldn't find a caregiver and ended up having to stay with her too much. Now I'm just screwed and the only little bit of income I can get is what her Medicaid Waiver is willing to pay me. I have like $0 in my bank account to pay a lawyer right now plus it's been over a year since I've been to the dentist or had an eye exam because I can't afford it.

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Everyone “hates nursing homes and refuses to go”. EVERYONE!

She needs specialized care for her medical condition and she is becoming a fall risk.

It IS her house, but if she is unable to make good decisions for herself, she is indicating that she does not have the “right” to make demands on loved ones to be her full time caregivers.

There is no legal or moral obligation on you to discuss this with her. She may be capable of vigorous denial of her own circumstances but as her caregiver, you have to be objective and choose what is safest for someone in her condition.

Look in your general area for places that meet the needs you’ve discussed here. Online searches can give you a good general idea of what the general set up through photos and sometimes website video.

While you’re doing that, check out job openings FOR YOU! Time together back into a routine that’s good for YOU, TOO.

She may carry on when she arrives at her new living site, but she may not. The staff should be equipped to deal with crank screaming 96 year olds.

Remember, decisions made with her needs in mind, with love and respect, are the best thing for you both. Be brave!
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SGeorge, would you consider getting a job and renting a room ASAP, basically removing yourself from the situation, and then calling Adult Protective Services and advising them of a vulnerable adult living alone?

You are just as important as your mom. You need income, savings for retirement, money for eye exams, dental care, etc. It’s too bad it’s come to this but I think you are justified in taking whatever drastic measures are necessary to get control of YOUR life again.
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SGeorge24 Feb 2021
I'm afraid I waited to long and my mom is too far gone to just leave her alone for any amount of time. She wouldn't be able to get out of her chair to let someone in unless I leave the door unlocked and if she tried to get out of her chair by herself they will find her on the floor. I moved into her place because she already had several falls. Things were okay for a few months, then she got to where she couldn't walk without somebody helping her.

Basically Medicaid approved her for 31 hours of home care (she could get 35 if I didn't live there) then her caseworker said in the same breath she can't be left alone even for a short time and I would have to find a home care agency with the availability to cover those hours as they didn't have anyone. Basically, if I couldn't do it myself, it wasn't going to work.
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SGeorge24, have you thought of telling her caseworker "I'm sorry, I'm broke and need to find a job to be able to support myself and prepare for my future. I am also ill equipped to take on the role of primary caregiver anymore, mentally and financially. I am unable to be with my mom 24/7 anymore. I'm sorry." What you would be asking is for the State to to take guardianship of mom. They would ensure her safety and find placement for her.
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I'm wondering what the legal situation is when an elder refuses to go into care and says they will "die in their home"? Can family be held responsible if they let the elder have their way and walk away? Seems that otherwise, if family must provide care, they can basically be forced into involuntary servitude. How can people protect themselves from fanatic elders?
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mstrbill Feb 2021
I think it complicates things much more when the family member moves in and starts assuming the caregiver role. Family can't be forced into a caregiving situation, but once they willingly take on that role, then they may have to navigate to avoid possible abandonment/neglect accusation scenarios. I suppose then the caregiver would have to be proactive and contact social services and basically let them know that she/he can't do it alone anymore, or she/he must work to earn a living.
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My first suggestion while you're trying to get things worked out with placing her in a nursing facility, would be to get hospice involved ASAP. Especially since her Dr said he felt she doesn't have but maybe a year left. They will have a nurse come out once a week (more if needed)to check her vitals, and aides that will come bathe her twice a week as well. You will also have access to their social worker, who could probably help you when it's time to place your mom. Hospice care is covered 100% under your mom's medicare, so you don't have to worry about that. They also will cover her medications, diapers, chucks, and any needed medical equipment for her. Definitely worth getting them involved.

And if nothing else works in getting her to agree to go to a nursing facility, the next time she ends up in the hospital, you must insist that she can not return to her home. The hospital social worker will then help you in getting her placed. Please take care of yourself. Good luck.
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The typical route is direct from the hospital. In your case that may be the only pathway since she is not agreeable to go on her own. Unfortunately you agreeing to be her caregiver has also delayed that transition and also affected your financial health. I'm sorry you're in that position, but I think maybe you might need to start planning for your future and your own well being.
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rovana Feb 2021
Right, but what are the nuts and bolts of making a legal, reasonable escape? Without putting yourself in legal danger?
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Some assisted living facilities will take people that are a 1 or 2 assist. It can really vary by the facility. Call around to different places and see what you can find out.
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Medicaid will pay up to ten hours per day for in home caregiver, she needs to be evaluated to see what she qualifies for and you could possibly be hired as her caregiver. Ask her case manager about PCA / Homemaker hours and if she's been evaluated for that. You need to tell them everything that you help her with, bathing, dressing, toileting, grooming, laundry, cooking, shopping, transferring, positioning, etc.
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