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My grandmother is severely disabled. She can't get out of bed on her own, she bought a toilet to sit next to her bed because she can't make it to the bathroom, she uses a wheelchair, she can't cook or clean or really bathe herself. Her health started declining a little over 12 or 13 years ago, when she was still disabled but mostly independent before a botched back surgery slowly took her ability to walk.
At first care fell to my older sister when she was 14, then to me when I was 13 and she was 20. Then care went to her son(my uncle) but he works constantly and leaves her alone for days on end for trips, so now it's fallen to my younger sister. She used to be a retired nurse, and refuses to leave her home, but this isn't sustainable. None of us are qualified to take care of her, but we can't afford a live in nurse and she gets so offended when anyone even hints at a care facility. What are our options? What can we do to help her?

That sounds like a horrible way to live, she probably spends most of her time in bed. What kind of life is that for her? At least at a nursing home she will get baths and regular food, or have someone available to help if she falls.
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Reply to EmotionallyNumb
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Your grandmother should never have burdened children with her care.
As a teacher, I work with young carers - they're doing this in order to stay with Mum (I haven't yet met a child who is needing to take care of Dad, although I'm sure it must happen) and to keep their families together. Sometimes, they take care of Mum, or they are looking after younger siblings because Mum is too ill (often a progressive disease, like MS, although sometimes a sudden one, like cancer).

Why was it ever necessary for children to look after your grandmother? Was your grandmother your main carer? If not, there should have been no good reason for you all to give up so much of your youth. Grandma should have gone into a care home/nursing home.

You all need to walk away and call in social services to sort out your grandmother's care needs. It's really not your responsibility, despite you being made to feel that it is.

Each of you has a responsibility to live the best and most independent life that you can. You can't do that if your time and resources are being spent on a woman who really should know better.

Don't give in to guilt that your grandmother will try and trap you with. It's not your guilt to bear.
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Reply to MiaMoor
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How old is grandmom? Where are your parents in this? Did grandmom raise you thats why you feel obligated?

Time to call Adult Protection Services to have Gma's situation evaluated. She may be able to get resources. Maybe an aide. Or, APS will feel she needs to be placed. You and your sister's need to have lives of your own.
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Reply to JoAnn29
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Candycain: Perhaps you can no longer enable her.
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Reply to Llamalover47
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It's not a matter of being qualified to take care of a person in her condition. If your family wants to keep grandma home, all of you can learn. The same way that a person expecting a baby learns.

You don't mention your grandmother having dementia. If she's still of sound mind, can get around her house in a wheelchair, and can make a phone call on her own, she doesn't have to have someone with her 24 hours a day.

Since she's disabled, she will qualify for some homecare paid by insurance. The CNA can teach you and your family how to transfer her into a wheelchair, wash her up in bed, and change her diaper if she uses them.

Here's what happens if the family can't work together and keep her home. If she owns a home and hasn't estate planned to make it a Medicaid-exempt asset it will be lost to a nursing home. Anything she has in the bank or any insurance policies she's holding go straight to the nursing home. So there will be no inheritance for anyone. Maybe knowing this will be enough for the family to make a plan.

If there's no family who can work with whatever homecare is available to her, she will have to go to a nursing home. It's likely that APS (Adult Protective Services) will have to be involved if she fights everyone on it. She's a vulnerable, at-risk adult. They will get her placed if comes to it.

Your family has a bad situation but a very common one. The options are pretty simple though. Either the lot of you work together to keep grandma home or she goes to a nursing home. It is what it is and she will have no choice but to accept whatever decision you all make.

No senior ever willingly went to a nursing home. So don't guilt yourself if she ends up getting placed.
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Reply to BurntCaregiver
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I’m an RN GERIATRIC CARE MANAGER and case manager. Unfortunately unless she has dementia and/or you are willing to call your county’scorporation on aging to say it’s not safe or viable for her to live alone your options are limited. . They go in and do an assessment. They will then work with you on a plan which she would have to agree to. If they are involved your grandmother will need to follow their and your re commendations but they would be the driver of the plan then. She may be furious so you may want to see if you can say it was anonymously called in. Good luck. This is a very difficult situation.
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Reply to mobrien0214
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BurntCaregiver Sep 19, 2024
@mobrien

It doesn't matter if she will be furious or not. She can throw a tantrum nine ways to Sunday ans it changes nothing. If the family can't care for her and she can't access the level of homecare she needs to remain in her home, she gets placed.

The other option is she dies of neglect at home. The state isn't going to let that happen. They will place her against her will if necessary.
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You will never convince her that she needs help. You need to let her know that this A, B, C, needs to happen and everyone needs to walk away. Who is POA and is she mentally able to make real decisions? I remember when my grandmother was sent to an assisted living facility she had the freedom to come and go as pleased it was just a change of scenery. If grandma lives in an apartment tell her the lease is up, the owner is raising the price what ever to make her get out. Get a social worker, they can help you find a place, help with medicaid or whatever. Hugs
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Reply to Ohwow323
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You and your family have been through an incredible burden as children at such a young age as caretakers. Your grandmother needs to be placed in assisted living. Please seek advice with department of aging and have a conversation with your family. A decision for your grandmother's future must be decided immediately.
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Reply to Onlychild2024
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Stop helping. Really Grandmother requires the professional staff at a facility. She’s working her loved ones to death.
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Reply to JeanLouise
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Who cares if your grandmother gets offended about going into a nursing facility???
That is now what she needs whether she likes it or not. So if she doesn't have the money you can apply for Medicaid for her and offer to find the right facility for her.
And if she isn't open to that, then you tell her that you nor anyone else in the family will be looking after her here on out and that she will now be on her own.
Once there is no one to help or enable her, she will come to her senses and agree to be placed in the appropriate facility.
Once the family steps away, please call APS and report a vulnerable adult living by themselves that shouldn't be and they will take things from there.
Let the state then step up and take over her care. You all have done more than enough now. It's time to let the professionals take over.
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Reply to funkygrandma59
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Beatty Sep 14, 2024
A little tale on the topic of being *offended*.. to.make you smile.

I explained I could not lift the wheelchair or assist with transfers.

Yet the passenger was offended that I suggested using a taxi with wheelchair lift.

So I stated the realities.
* You are using a wheelchair.
* I cannot transport you.
Your transport options are;
1. Wheelchair taxi
2. Remain here
3. Magically sprout wings & fly (ok, you have to TRY to lighten things up..)

Refusal.
I left.
True story.

PS My Mother DID get a wheelchair taxi home 😀
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Candycain, welcome to the forum. Depending on your grandmother's age, chances are she still believes that a nursing home is the "County Asylum" with a lot of scary issues. That was how it was way back when. And that thought is passed down from one generation to the next.

Does your grandmother live in her own home? If yes, she could sell her home and use the equity to pay for her care at a nice nursing home. Then later down the road apply to Medicaid (which is difference from Medicare) which will pay for her room/board for the rest of her life. She could make new friends there who are part of her own generation, etc.

Take a tour on your own of some of the nursing homes in your area to see what is available, your gut feeling will let you know if this is the right place or not. Anyway, it's a start. If grandmother refuses to move, then your Uncle will need to wait until his Mom has an illness or fall where she needs to be in the hospital, and from there she goes into the nursing home, not back to her own home.
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Reply to freqflyer
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You and your sisters Stop helping her .
Step back .
Live your life .

You all tell your uncle you can not help anymore . APS can be called as well .

I’m going to guess that this woman did not assign POA to anyone for fear of being placed in a nursing home .
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Reply to waytomisery
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BurntCaregiver Sep 19, 2024
@way

That happens all the time. The senior refuses to do POA or any kind of estate planning. They think by playing the carrot and stick game with their family and doing nothing, the family will keep them out of a "home" so they can inherit at some point.

Most of the time, the family forgets about getting any potential inheritance and the senior gets placed anyway.
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All you can, and should do, is completely back off and leave grandmother on her own. Again, completely. Grandmother has mistreated her family by manipulating you into attempting to provide care that’s simply unsustainable. Leaving her on her own is the only way to prove this to her. She will falter and have to make changes. If you and other family members continue to giver her the fantasy she’s okay to keep going like things are, nothing will change, except for your health to suffer. I’m sorry you’ve been treated so poorly
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Reply to Daughterof1930
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You are correct. It isn't sustainable.
You are enabling its going on, all of you, by doing it.
She is unlikely ever to agree to help.
You will have to step away. If she's competent she can make calls for care on her own, but if she is not you will need to call in the state via Adult Protective Services.
If they find her unwilling to access care, but in danger due to the lack of it they can arrange transport to hospitalization and diagnosis.
There whomever is in charge here (is anyone the POA/ in lieu use next of kin) should say family cannot continue in care, that she will require placement. I would not take on POA for an unwilling family member. Allow the state to assume guardianship would be my advice. They will diagnose and find placement; once this happens (guardianship by the state) the family will not have input. The state will handle it all and you can be loving and kind visitors to her.

I welcome you to the Forum. Do us all a favor and fill in your profile CandyCain so that we can better answer your questions.
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Reply to AlvaDeer
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This is your grandmother's problem to solve, not yours. She's had a lifetime to provide for her eldercare, and she didn't. She put the burden on your sister, you and your uncle. You didn't have to accept it.

But you all did. And that makes me wonder about this dysfunctional dynamic and how it got established in the first place. What, in your mind, makes it okay for grandmother to treat all of you this way? If she's a retired nurse, she surely knew what her progression would look like. And she chose to do this to you anyway.

You are not responsible, financially or any other way, for grandmother and her care. Let that sink in. I'm so sorry, but you have all been abused. You're going to get a lot of advice on this forum, and I hope you'll use it to get out of a mess that you never should have been in.
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Reply to Fawnby
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JeanLouise Sep 19, 2024
Agreed. I’m guessing it’s another cultural belief of obligation no matter how it drives loved ones into the ground. So unfair to manipulate family. I hope she takes these words of experience and advice.
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