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My grandmother (91) has always been a very difficult person, and I haven't had a relationship with her in over 20 years. Before last year, my uncle was her full-time caregiver. He passed away suddenly last August, and we've been doing everything for her since. My mom's health has drastically declined in the past year, from the emotional and physical stress of it all. She said she was only going to do this for a year, but that deadline is coming up and we're still no closer to getting any help. Yesterday I called APS just to see what they would do, and they told me that because she wasn't diagnosed with dementia she had the right to stay in her home and they couldn't do anything, but if we stopped helping her we could be accused of neglect. I'm at a loss for what to do next. The details:



-My mom is the only one helping. She has a sister who helped for a little bit but said it was too much and stopped, and a brother who hasn't done anything.


-My grandmother is refusing to go to a nursing home. She was in one for a few weeks after a bout with covid earlier in the year, but she left as soon as the doctors there would let her.


-She's completely incontinent, but her only bathroom is on the second floor and she crawls up and down the stairs. Refuses any kind of tool to help her get up and down like a chair lift, and won't use a potty chair.


-Her doctor refuses to give her a dementia diagnosis, but she can barely remembers anyone, she gets confused on what day it is, and she thinks people are people from her past (she thinks my mom is her sister sometimes).


-My mom does everything for her. Groceries, pharmacy, bills, home repairs. In the beginning she was spending every other night, but that wasn't sustainable and now she goes up every other day. I don't understand how that's considered an independent adult, like APS claims.


-My mom has financial POA but does not want guardianship. She was emotionally abused her entire life and doesn't want to be tied to my grandmother any more than she has to be.


-My grandmother has money for a nursing home but thinks she shouldn't have to pay for one. We've talked about getting a home health aide to come in, but we honestly don't think my grandmother would let anyone in the house.



We're all at the end of our rope and we have no idea what to do next. We can't force her into a home, she won't go willingly, but we can't stop caring for her or it's neglect. I don't understand how this is somehow all my mom's responsibility, and that her siblings can just say "nope". What other avenues do we have? What else can I look into?

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It's NOT your moms responsibility to have to care for her mom. And how very selfish of your grandmother to put such a burden on her children. Your grandmother has already lost one child because he had to care for her. Does she now want to lose her daughter as well? Again, it's so very selfish of her to only think of herself.
You say that your grandmother has money for a nursing facility, so that means she has money to pay for in-home help too. So your mom needs to put her big girl panties on and tell grandma that she is giving her 2 week notice as her caregiver and if she doesn't want to go into an assisted living facility, then she is on her own to hire some in-home help.
Your mom should NOT have to give up her life(literally)for her moms. PERIOD. End of sentence.
Time to set some long overdue boundaries so your mom can get her life back before it's too late.
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The person that you talked to at APS is an idiot. Just about everything that they told you is not true.
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Take her to a different doctor. Tell your grandma it's a free annual physical (or whatever therapeutic fib will work to get her in voluntarily). But before doing this... does Grandma have a DPoA? Is anyone her PoA? If not, a dementia diagnosis won't solve all problems.

At the doctor's appointment, request the Medical Representative HIPAA form. Fill in your (or your Mom's) name and have Grandma sign it. This allows the medical staff to legally disclose your Grandma's diagnosis and health issues with the MR without Grandma needing to be present.

Go to this appointment with a pre-written note explaining who you are in relationship to your Grandma, Explain your concerns for her memory and signs of cognitive impairment. Also request she be tested for a UTI, just for safe measure since this is a common problem for elderly women that often presents no symptoms other than what can appear as dementia. Antibiotics clears it up. Discretely hand the note to the receptionist or nurse or doc before entering the exam room.

At this appointment, stay in the exam room the whole time. Sit behind Grandma so that when the doc asks questions you can confirm or refute the answers she gives by nodding or shaking your head. This is exactly what I did with my MIL and the staff was totally helpful.

Or, everyone stops orbiting around Grandma (like has been suggested by other posters). This will feel extremely hard to do, since you'll be waiting for an "incident" for which to call 911. At that point she can be discharged directly into a facility, and this requires a discussion with the hospital's social worker prior. Make sure the hospital knows she's an "unsafe discharge" and make sure no one goes to bring her back to her house. I wish you all the best as you work to help your Mom and Grandma!
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Send her to the ER, and tell them she's an unsafe discharge because there's no one to care for her at home.

Mom stays out of it. Maybe you or your aunt can call 911.
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https://www.agingcare.com/questions/long-term-care-for-a-difficult-grandmother-any-advice-477034.htm

I thought this post sounded familiar.

You get grandma to a Neurologist and get that diagnoses. Then see if Office of Aging will go in a evaluate grands situation. If she is found incompetent, Mom can have her placed with her POA. I would go right to long-term care. If she is self-pay, she maybe able to have a private room.
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Nearly a year ago (thanks, JoAnn29 for finding that thread) you wrote that you would wait for an emergency. That emergency happened earlier this year when your grandmother went to a NH after getting covid. Why didn't your mother say it would be unsafe discharge? Did your mother drive her home?

You are now watching your mother deteriorate from the stress and strain of taking care of your grandmother.

Is your mother really going to ever walk away from this?
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KikiBell Aug 2023
My mom did drive her home, but she was pressured by the nursing home to come and get her. My grandmother was screaming and throwing things at the staff, saying they were holding her against her will. Since there was no medical reason to keep her, they said they had to let her go. I don't know if that's BS, but that's how it went down. I agree that my mom needs to step back, but she's the kindest person in the world and it's hard for her. I want her to walk away, but ironically enough, I can't make my mom do something she doesn't want to do. She has a hard stop on getting medical (durable?) PoA because it would be a legal link and she doesn't want that. I've floated the idea that I could become PoA and I'll be way less enabling, but we haven't gotten to that point yet.
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Grandma almost certainly has dementia based on your description.

She is completely incontinent and crawls up and down the stairs to the bathroom.

She can't cook, shop or apparently take care of herself in any substantial way. She is not independent.

How on earth would anyone think this is okay? Call APS again and talk to someone who knows what they're talking about. And find her another doctor.
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AnnReid Aug 2023
Your MOTHER needs a visit from a compassionate social worker or occupational therapist, who can then meet your grandmother and straighten out some of the mistaken ideas that are perpetuating this chaos.

Your mother is the victim, not your grandmother. Get your mother HELP.
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My uncle did this to his children. He lived in his basement because he couldn’t go up and down the stairs. He was in no shape to be living alone.

He lived in NJ and couldn’t shovel the snow in the winter or keep up with maintaining his home. He was relying on help from his children. They didn’t have the time to do everything that he needed.

All of my cousins have full time jobs and families of their own so they were not able to be his full time caregivers.

My cousins insisted that he move into a facility. He kept refusing. He ended up with a UTI and became septic. He nearly died.

My uncle said that he would hire help. My cousins told him that he didn’t have enough money to hire full time caregivers around the clock and that his only option was a facility!

Finally, he agreed to enter a facility. He was well cared for. His children were his advocates and visited on a weekly basis. He died at age 96.

Your grandmother cannot continue to live like this. She isn’t safe. Sooner or later, chances of an accident will increase and she won’t have any other choice but to enter a facility.

I hope that you are able to place her before a horrendous accident occurs. Best wishes to you and your family.
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The real problem is that no one wants to make a decision, everyone wants to be the good guy.

Send her to the ER, tell them that there is no one capable of caring for her, believe me they will find a place for her. Stick to your guns!

The APS person you talked to doesn't know what she is talking about.

The time is now!
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NeedHelpWithMom Aug 2023
Yep, they have reached a point where they are enabling her to continue to live in her home.

Enabling a person isn’t helping them at all. It is prolonging the agony for everyone.

When she pushes, they have to push back.
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Call CPS and tell them your grandmother lives alone in her home and is having cognitive issues and incontinence issues and is refusing help and is refusing to go anywhere for assistance. Tell them the bathroom is on the second floor and there are some real safety concerns. Tell them the uncle who was taking care of grandma has died. Do not tell them your mom is already helping her. Just tell them we all work, and there is no one to help her and she is refusing outside help. Leave it at that. Ask the CPS worker for their name and tell them you just want to document that you told someone grandma needs help.

Option 2 is if grandma gets sick or hurt, take her to the ER and leave her there. Tell them she can't go back to her house because there is no one to take care of her there. Do not offer any additional information. Do not give in when they say "you can help her right?". Your answer is No...we can't. She needs placed.

I know these steps seem harsh, but it's the only way you're going to get grandma where she needs to be and get your mom out from under the stress of it all.
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You are going to have to sit on your mother. My SIL unknowingly shot us in the foot the first opportunity we got to send my FIL to a rehab a few years ago because she thought she had no choice and allowed herself to be pressured to take FIL home before the rest of us could get involved.

This last time I just flat out called the hospital the day he was admitted and told them that he was an UNSAFE DISCHARGE ( MANY thanks to this forum for the knowledge!!!) and we had a social worker assigned within a couple of hours and I coached every single family member to make those words their mantra - so that no matter who the hospital talked to - they got the same response.

FIL was moved to rehab- and god help us - SIL caved again and he went home and I almost lost my mind - but he fell and had to go back and we got back in to this vicious cycle. And rehab finally said that he needed 24/7 skilled nursing care. He had a fit. He was of sound mind and he was going home. We were all in agreement that he couldn't do that. Including the rehab social worker. We had a family meeting scheduled to discuss Nursing Home placement.

He apparently had a back office meeting with the Social Worker and told her that HE got to make the final decision and HE was going home. We get to the meeting and she tells US that he is the one that gets the final decision.

I snapped. I told her that was fine- we understood that he got to make the final decision. But that THEY needed to understand that WE were no longer accepting responsibility for him. That he was an UNSAFE DISCHARGE and the family would not be providing care for him any longer. And if he went home he had to hire 24/7 caregivers. And if she sent him home without that care in place that was on her and her facility. Because we were no longer accepting responsibility.

I was so mad because I could already see they were getting ready to pressure the FAMILY to take him home and assume responsibility for his care. NOPE. We could not do it anymore. THEY were recommending 24/7 skilled nursing. But they were caving in to his demands.

She looked at him and said "Sir, your family is not going to discharge you to their care, so you will have to have alternate caregivers." . When he said he couldn't afford that she told him that he had no other option but to make other plans, that they couldn't discharge him home without someone there to provide his care.

He has been in a nursing home for 4 months now. It's not easy - he makes it hell on earth because he is mad as a hornet and feels like WE put him there. He DID have choices - he DID have money to have in home care for a while in order to find a place HE wanted to go. (don't worry, he's in a good place) but he ultimately just went without a fight.

Did we back him into a corner - you are darn right we did. Because he backed us into one and then engaged them to help him by having them pressure us - expecting that we would once again cave under the pressure. He never once believed we would follow through.

You are going to have to help your mother be strong if this is going to change. As long as she is willing to remain in this vicious cycle, nothing will change.
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Beatty Aug 2023
Gosh I can just picture this.

The elderly man, with that glint in his eye, smirking with satisfaction, feeling all mighty as he thought he'd got his way, made you all his servants.. then the truth of his being dependant on others was uncovered. I'm sure if this was a fantasy movie the sky would darken over as he threatened all manner of evil to befall you all.

But common sense & natural consequences prevailed.
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KikiBell: Prayers sent.
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I think I may seriously deliver Grandmother to her Doctor 's office. Then leave.

Ok Ok abandonment to be avoided.. I will read the replies, see what has been tried already.. but I suspect it all will hinge on the OP's Mom saying No to her Mother.
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"We're all at the end of our rope and we have no idea what to do next".

Hopefully some ideas from the forum will help you.

"We can't force her into a home, she won't go willingly,"

No, but there are ways..

"but we can't stop caring for her or it's neglect".

THIS needs unpacking. This is the key.

"I don't understand how this is somehow all my mom's responsibility"
It's not.

"..and that her siblings can just say "nope". 
She can too.

It is your Mother herself that has chosen to step in. Who chooses everyday to keep going. She thinks she is locked into this.. maybe becausae she is in the F.O.G.

Google this Fear Obligation Guilt.
It's real.
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