Deleted; thank you for the advice!

[Mrs Tiggywinkle]

Thanks everyone.

My mom did consult an elder lawyer this evening who did confirm what we all thought.  The truth is that life is messy and sometimes there are no good options, just the least bad.  And that people, even elderly people, have the right to make bad decisions.

 

Edited July 28, 2022 by Mrs Tiggywinkle

[shawthorne44]

That sounds rough.   

Just an innocent observation from someone that hasn't been in this situation, wouldn't having the daytime aides provide protection?   They would see that there isn't abuse.  Of course, people can start frivolous legal action and cause someone to spend lots of money defending themselves.  

Also, if your mother doesn't take her grandmother in, what will be happen?   

Another idea, could you or your mom call Adult Protective Services preemptively?   
 

 

 

[Mrs Tiggywinkle]

deleted

Edited July 28, 2022 by Mrs Tiggywinkle

[Idalou]

They claim to call within 24 hours. It's from the NY Elder Abuse website. Maybe they can give more concrete advic

Edited July 27, 2022 by Idalou

[Mrs Tiggywinkle]

8 minutes ago, Idalou said:

They claim to call within 24 hours. It's from the NY Elder Abuse website. Maybe they can give more concrete advice

Haha. I made an APS hotline call about a patient situation on Sunday and still haven’t heard back.  They’re understaffed and overloaded. 

[Idalou]

4 minutes ago, Mrs Tiggywinkle said:

Haha. I made an APS hotline call about a patient situation on Sunday and still haven’t heard back.  They’re understaffed and overloaded. 

I suspect you are correct. If your grandmother was declared incompetent or if your mother had POA or guardianship then she probably could deny visitation. I can't find a NY law that deals with home caregivers, just nursing homes, but I saw that several states have legislation allowing visits if the elder patient consents, so I'm going to gues, lol, that NY has one, too.

Edited July 27, 2022 by Idalou

[Grace Hopper]

You need to know the laws in your own state, but here a statement from one provider on the Patient’s Bill of Rights (based on legislation c1998, iirc).

 

https://www.reachhealthcareservices.com/uploads/userfiles/files/Rights of the Elderly.pdf

I suppose it could be argued that the property owner doesn’t have to allow someone she doesn’t want on her property, but the undesired family member could probably make a big stink about it. Especially if any of grandma’s income is going to pay a cost share for accommodations. 

[prairiewindmomma]

Regardless of whether of a judge would find that to be an actual issue (and with judges, you never know), it sounds like you're reasonably assured that relative would make it an issue. There would at least be an investigation.

Why sign up for that?

IIRC, your grandmother has continued on at home as long as she has because your mother has continued to provide nearly round the clock care. In so many ways, your grandmother is abusing your mother by demanding that she provide the care when she could perfectly well access what she needs on her own. I think that is the real issue here.  And, I suspect whatever dynamic allowed this to start in the first place probably has its seeds in whatever went on between your mom and your grandma since childhood. She's been conditioned to not think rationally about this, which makes it hard to talk with her about this. Hugs.

[Terabith]

Why couldn't visitor visit with Grandma during the day when aides are available?  

I do feel like Grandma is abusing your mother by refusing to move into a nursing home.  

[Katy]

I think either your mom allows visits or your mom can’t keep her there. There’s no getting around it. 

Nursing homes can be fun for those who need minimal care. There’s no responsibility and there’s always company & activities. 

[Mrs Tiggywinkle]

5 hours ago, Katy said:

 

Edited July 28, 2022 by Mrs Tiggywinkle
Deleted

[Katy]

Oh dear. Stimming might be less obnoxious than constant alarm bells and nurse call lights going off. But in my mind if someone needs care every few hours overnight and they are bed bound they need to be in a nursing home. That’s not a solution for a family member for more than a few days. She’ll end up with bedsores or something. 

[athena1277]

This is a very hard situation.  Unfortunately there’s another way things may go because of the complicated issues here.  That is that grandma stays at her home without overnight care, falls, spends time in the hospital, then is forced into nursing home care because family cannot see to her increased needs.  It seems like everyone but the grandma understands this is inevitable unless she chooses from the other 2 options that keep her health stable as it is now.  It’s painful to watch the elderly make bad choices because they don’t want to go to a nursing home, but sometimes there’s nothing else anyone can do.  😢

[Jean in Newcastle]

Honestly I would play up the benefits of the nursing home (from Grandma’s perspective). Able to visit with anyone of her choice. Able to be with others her age- or to have her own room or own tv shows or whatever would be seen as a positive in Grandma’s eyes. 

[Mrs Tiggywinkle]

5 hours ago, Jean in Newcastle said:

 

Edited July 28, 2022 by Mrs Tiggywinkle
Deleted

[Grace Hopper]

33 minutes ago, Jean in Newcastle said:

Honestly I would play up the benefits of the nursing home (from Grandma’s perspective). Able to visit with anyone of her choice. Able to be with others her age- or to have her own room or own tv shows or whatever would be seen as a positive in Grandma’s eyes. 

I would get her name on the waiting list whether she likes it or not. 

23 minutes ago, Mrs Tiggywinkle said:

In all honesty, she sees no benefits. She’s spent a cumulative seven months over the last three years in two different nursing homes for rehab and was absolutely miserable. She can’t have her dog.  There are no private rooms here because everything is overcrowded. She hates roommates. She doesn’t want to be with other old people.  She already watches the TV shows she wants and the nursing homes don’t have her cable channels.  She didn’t like the food because they make her eat thickened nectar only even though she has stated she’s 89 years old and doesn’t care if she gets aspiration pneumonia; they’re only keeping her alive to die from something else anyway(true). They took till noon to change her and get her out of bed(this is also true). She could only take two showers a week whereas now she’s got day caregivers who give her showers whenever she wants.  She was a nurse, but always in on high acuity floors where she had two or three patients who each had their own CNAs, and cannot fathom why the LTC nursing home can’t answer call bells immediately and change people.  Then in her last stay, she got two bedsores and has never gotten any at home, and that was the last straw for her. She is generally a pain in the a$$ to the nurses and caregivers there. 
She was a really good grandmother and the people I know who worked with her praise her to high heavens as a brilliant nurse, but was not a great mother and is a ridiculously difficult patient.

I told Mom today that someone is going to be miserable in this situation, and it doesn’t have to be her. I know that’s cruel, but my grandmother has known for fifteen years she had Parkinson’s and did nothing to plan for this eventuality.  I mean I suppose it’s possible that overnight CNAs show up out of nowhere, but everyone is struggling to find home health workers.

What if your mom just…. resigns? People with limited self-care abilities can’t afford to be choosy if they actually want some kind of care assistance. I realize this sounds drastic, but if grandma is adamant about being at home, and is of sound mind, you can’t do much to argue. If the Unwelcome family member has boundaries, the entire load should not have to fall on your mother’s shoulders. But it also should not have to fall on your mom’s either. 
 

<This is where I stop typing to stay off my soapbox regarding folks who fail to make reasonable plans for their old age care.>

[Katy]

If she already has a history of bedsores I can’t imagine your mom or someone couldn’t make a doctor see her wishes need to be overruled to get nursing home care. Not ordering nursing home care seems like elder neglect. I find it hard to believe NY wouldn’t have similar rules. 

[Katy]

Besides, this particular disease can cause dementia, though it’s slow.

[Terabith]

13 minutes ago, Katy said:

If she already has a history of bedsores I can’t imagine your mom or someone couldn’t make a doctor see her wishes need to be overruled to get nursing home care. Not ordering nursing home care seems like elder neglect. I find it hard to believe NY wouldn’t have similar rules. 

Even if she got bedsores IN THE NURSING HOME?  

I mean, I think this is rather abusive to Mrs. Tiggywinkle's mother, but the whole situation sounds horrific, and I can't blame Mrs. Tiggywinkle's grandmother for not wanting to go into the nursing home.  Now, probably the right answer would have been to have found a good facility ten years ago to do step down care as part of it or something, but that's water under the bridge and also really hard when it would require moving out of the area where she's lived her whole life and her whole family resides.  

[City Mouse]

Not allowing a specific relative in the home is not elder abuse. It is setting boundaries. If Grandma is capable enough to decide not to go to nursing care, she is capable enough to understand conditions of housing agreement. 

[Grace Hopper]

4 minutes ago, City Mouse said:

Not allowing a specific relative in the home is not elder abuse. It is setting boundaries. If Grandma is capable enough to decide not to go to nursing care, she is capable enough to understand conditions of housing agreement. 

While I agree with you, the variable is how much fuss the other family member will cause if not allowed to visit. It is technically a form of abuse. 

[fairfarmhand]

Do social workers there really not have enough to do that they're going to hassle someone because a SINGLE person is disallowed in someone's home where she's looking after her elderly mother? I mean if there is an investigation, all Mrs. Tiggywinkle's mother has to do is say, "Why not call Mrs. Tiggywinkle, Mrs. Tiggywinkle;s siblings, and all of the other Mrs. Tiggywinkle relatives who will say, Granny's fine. We saw her last week and the week before and the week before." Yes, I think it would be a hassle to go through that, but I really can't see that it would go past a social worker going by and checking on things and making a few phone calls. 

But it looks like Granny gets to decide. Go to Mom of Mrs. Tiggywinkle's house and not see that person or go to nursing home. She seems of sound mind so the ball is in her court. 

[Mrs Tiggywinkle]

39 minutes ago, Katy said:

If she already has a history of bedsores I can’t imagine your mom or someone couldn’t make a doctor see her wishes need to be overruled to get nursing home care. Not ordering nursing home care seems like elder neglect. I find it hard to believe NY wouldn’t have similar rules. 

She hasn’t had bedsores at home. She got two while in a nursing home and then once she got home a wound care nurse came twice a week and packed them. They’re healed now. At home she has caregivers from 8am to 7pm usually between my mother and paid caregivers. None of them take her nonsense and make her get out of bed into the recliner or wheelchair or turn her frequently.  So she’s fortunately never gotten a bedsore at home.

24 minutes ago, Terabith said:

Even if she got bedsores IN THE NURSING HOME?  

I mean, I think this is rather abusive to Mrs. Tiggywinkle's mother, but the whole situation sounds horrific, and I can't blame Mrs. Tiggywinkle's grandmother for not wanting to go into the nursing home.  Now, probably the right answer would have been to have found a good facility ten years ago to do step down care as part of it or something, but that's water under the bridge and also really hard when it would require moving out of the area where she's lived her whole life and her whole family resides.  

The sad thing is that five or six years ago we probably could have talked her into assisted living, but all the AL places here except one are independent of the skilled nursing homes and basically just kick you out when you need skilled nursing or can no longer transfer independently.  The one that is attached to a nursing home is very nice and the best NH in the area but being in assisted living doesn’t guarantee you a bed in their skilled nursing home when you need it. If there’s a bed open you get priority but since they keep their staffing:patient ratio low there’s rarely a bed.  
Like childcare, elder care is an absolute disaster in this country.

Edited July 27, 2022 by Mrs Tiggywinkle

[Mrs Tiggywinkle]

3 hours ago, fairfarmhand said:

Do social workers there really not have enough to do that they're going to hassle someone because a SINGLE person is disallowed in someone's home where she's looking after her elderly mother? I mean if there is an investigation, all Mrs. Tiggywinkle's mother has to do is say, "Why not call Mrs. Tiggywinkle, Mrs. Tiggywinkle;s siblings, and all of the other Mrs. Tiggywinkle relatives who will say, Granny's fine. We saw her last week and the week before and the week before." Yes, I think it would be a hassle to go through that, but I really can't see that it would go past a social worker going by and checking on things and making a few phone calls. 

But it looks like Granny gets to decide. Go to Mom of Mrs. Tiggywinkle's house and not see that person or go to nursing home. She seems of sound mind so the ball is in her court. 

Deleted

Edited July 28, 2022 by Mrs Tiggywinkle

[73349]

If the woman's other child is that insistent on visits, they could pay someone to bring her somewhere to spend time together, like a park or community center. Visits do not have to take place where the person resides (think of child visitation between angry exes--the kid leaves the house to spend time with the other parent).

[prairiewindmomma]

So, it sounds like she is currently not in a nursing home, not in your mother's home, not getting the incontinence and overnight care that she needs, but is choosing this set of bad consequences (probable skin breakdown, possible fall where she isn't found until morning) over the nursing home set of bad consequences (bad food, shoddy care, in an environment she hates).  I don't think she's being irrational.  She's not demanding that your mom is taking her in, right? 

The underlying issue is that your mom feels guilty about her state of things, wants to bring her to her home, and doesn't want to see other relative? I wouldn't try to solve this problem for your mom---only warn her of the legal danger and/or hope your dad puts his foot down.

I would just absolutely get it in writing that the nursing home won't take her because she won't consent and they think she is of sound mind to make the decision.

 

[Tiberia]

If you look up Rights of the Elderly, Patient Bill of Rights, you'll see that's it's not legal for a caregiver to deny a person the right to visit with someone they want to, so I believe that your mom would be wrong to deny visits if grandma is living with her. However, your mom can decide to not open her home to grandma in the first place. Mom is not obligated to care for grandma, even though she feels the obligation and can't seem to set a boundary. It's a sticky situation, and I'm glad you're not directly impacted in your living situation, Mrs T.

Your mom should think long and hard before letting grandma move in with her, because your mom will lose the battle if it gets reported.  

[Katy]

1 hour ago, Terabith said:

Even if she got bedsores IN THE NURSING HOME?  

I mean, I think this is rather abusive to Mrs. Tiggywinkle's mother, but the whole situation sounds horrific, and I can't blame Mrs. Tiggywinkle's grandmother for not wanting to go into the nursing home.  Now, probably the right answer would have been to have found a good facility ten years ago to do step down care as part of it or something, but that's water under the bridge and also really hard when it would require moving out of the area where she's lived her whole life and her whole family resides.  

Yes, because of many reasons. Oversight, two hour rounding, many reasons. 

[Mrs Tiggywinkle]

1 hour ago, prairiewindmomma said:

So, it sounds like she is currently not in a nursing home, not in your mother's home, not getting the incontinence and overnight care that she needs, but is choosing this set of bad consequences (probable skin breakdown, possible fall where she isn't found until morning) over the nursing home set of bad consequences (bad food, shoddy care, in an environment she hates).  I don't think she's being irrational.  She's not demanding that your mom is taking her in, right? 

The underlying issue is that your mom feels guilty about her state of things, wants to bring her to her home, and doesn't want to see other relative? I wouldn't try to solve this problem for your mom---only warn her of the legal danger and/or hope your dad puts his foot down.

I would just absolutely get it in writing that the nursing home won't take her because she won't consent and they think she is of sound mind to make the decision.

 

It was the home health nurse that visits twice a month who basically said she is no longer safe at home alone overnight and they cannot leave her there.  I think she was a little dramatic because she talked about adult protective and legal charges, and frankly I’ve called APS on worse things and been told that adults have the right to make bad choices.  But I also think the nurse is right and it’s not a safe situation. If they could get overnight care, if she didn’t live so rurally that there was cell service and wi-fi so a medical pendant would work, if she’d even just wear a medical pendant or leave the phone on the bed stand so it wouldn’t get knocked off the bed during the night and she thinks she can reach it and falls….

If she wasn’t a completely stubborn 89 year old lady who is bound and determined to die in her own bed.

But it isn’t my mom feeling guilty at this point; it’s that the county home health nurse has deemed it an unsafe situation. And my grandmother definitely won’t demand. She doesn’t want to live there anyway because my sister’s vocal stims drive her nuts. And she likes her house.

What she wants it to be taken care of in her own home.  Which is fine, except the only home health agency that can provide the level of care she needs does not have enough CNAs and they do not allow their home health care workers to do incontinence care.  They are clear that it could be 6-8 months before they can supply overnight 24/7 care. She can pay privately but we’ve had no luck for two years hiring private and at this point my mom is too exhausted to figure out taxes and receipts for possible Medicaid down the road and all of that.

 

Edited July 27, 2022 by Mrs Tiggywinkle

[Drama Llama]

Is there a way to make staying at home at night safer?  I know it's not ideal, but she's an adult and can make choices that aren't ideal.  Could she move to a studio apartment in an area with cell signal and get an apple watch with fall detection?  Allow someone to live with her rent free so she has someone who will hear her if she falls?  

[Terabith]

47 minutes ago, Katy said:

Yes, because of many reasons. Oversight, two hour rounding, many reasons. 

But none of those things prevented the bedsores from happening in the first place.  

It sounds like there are no good choices here.  I'm with @Baseballandhockey.  I think I'd be looking at ways to do harm reduction and accepting that she may die sooner than she would under ideal care conditions.  Honestly, if I were @Mrs Tiggywinkle's grandmother, I would be seriously balking at both of those options, too.  I'm not sure that it's irrational for her to not want to live as a person with autism under the constraints of either an overcrowded nursing home or her mom's.  ETA:  And at 89, if I were in my right mind, I might well make the same stubborn choices if all the alternatives sucked this much.  

Edited July 27, 2022 by Terabith

[TechWife]

Preventing family members from visiting is elder abuse. This family member would be right to raise the alarm by reporting it. 

The only way your mom could force nursing home care is if she is  your grandmothers legal guardian. That involves a lot of legal work, including having an MD sign off that your mother is incompetent, home visits, etc.. Guardianship takes rights away from people - the bar should be high. A POA doesn’t apply because your grandmother’s preferences and decisions outrank your mothers and because POA’s can be revoked, orally and in writing at any time. Keep in mind that these legal tools exist for the benefit of the one granting them and not for the benefit of the one exercising them.  

[TechWife]

5 hours ago, Grace Hopper said:

You need to know the laws in your own state, but here a statement from one provider on the Patient’s Bill of Rights (based on legislation c1998, iirc).

 

https://www.reachhealthcareservices.com/uploads/userfiles/files/Rights of the Elderly.pdf

I suppose it could be argued that the property owner doesn’t have to allow someone she doesn’t want on her property, but the undesired family member could probably make a big stink about it. Especially if any of grandma’s income is going to pay a cost share for accommodations. 

If mom has grandma move in, it is now grandma’s home too, and she can carry on her normal household activities, including having family and friends visit her. If the visitors pose a danger to mom or grandma, then legal avenues can be pursued to prevent them from coming. People who abuse others isolate their victims. It’s a huge red flag. Wanting to isolate grandma from her own child just because mom isn’t getting along with her isn’t fair to grandma or her other daughter and it’s unreasonable.To be frank, mom needs to suck it up and keep herself otherwise occupied when visitors she doesn’t care for are around. If she’s doesn’t want to do that, then she shouldn’t have mom move in. The nurse that thinks she can’t stay alone anymore can bring in a social worker to find an appropriate solution. 
 

ETA: A concise explanation - I don’t have the bandwidth to search out applicable law right now.
 https://cswan.com/can-your-sibling-stop-you-from-visiting-your-mom-or-your-dad/

Edited July 27, 2022 by TechWife

[Katy]

2 hours ago, Terabith said:

But none of those things prevented the bedsores from happening in the first place.  

It sounds like there are no good choices here.  I'm with @Baseballandhockey.  I think I'd be looking at ways to do harm reduction and accepting that she may die sooner than she would under ideal care conditions.  Honestly, if I were @Mrs Tiggywinkle's grandmother, I would be seriously balking at both of those options, too.  I'm not sure that it's irrational for her to not want to live as a person with autism under the constraints of either an overcrowded nursing home or her mom's.  ETA:  And at 89, if I were in my right mind, I might well make the same stubborn choices if all the alternatives sucked this much.  

We don't know if the one good home is the place she got the bedsores or if that was a separate rehab center.  What we know is that she refuses cares and cannot get the care she needs in the place she wants to be.  At that point it is best to move into a licensed nursing home where CNA's and nurses will do rounds on her a minimum combined 18 times per 24 hours (at least every 2 hours for CNA's, at least twice per 8 hour shift for nurses)  and whenever she calls for help. 

If in the rehab center she refused care and she was in her right mind and that was documented and was probably what caused the bedsores then a good neurological exam will probably find she is NOT in her right mind even if she seems it because refusing care to the point of causing injury isn't safe. I'm guessing that has already been determined if current caregivers do not let her get away with refusing care, but until recently it has not been so dangerous that it was deemed a risk.  And by risk the nurse means if she doesn't report it and this woman gets injured or killed in a fall, she could lose her license.

When the home health nurse deems it is unsafe and the family does nothing, sooner or later she'll report it to someone in government who will force her to move to any nursing home with a bed open OR she'll have an injury and be hospitalized first and never allowed to return home.  If she is of her right mind she would see that despite the inconvenience, it is time, and it is best to do so now, when she has some limited control over what to do with her belongings. Unfortunately with her condition the mind is often the last thing to go but it does usually go several years before death IME.  That could be a coincidence I guess, I've never looked up the statistics on that disease.

[Mrs Tiggywinkle]

I actually think those bedsores started in the hospital, because she was there for a week and a half and signed herself out of the rehab center after four days.  But since she was admitted on a Friday afternoon, and then over the weekend they didn’t come into help her get changed or dressed until around noon, she is completely certain it’s the nursing home/rehab place(rehab is in a long term care facility)’s fault. 

She had a complete neurological exam then, which was about three months ago, before they’d let her sign herself out.  Not even a hint of short term memory loss much less dementia. (And yes, family did refuse to pick her up and take her home when she signed herself out. She called and arranged for a stretcher transport home and paid for it out of pocket.  The woman is sharper than I am.)

The nurse is much more concerned about a fall out of bed with no one there and no way to call for help.  There’s a phone but she won’t leave it on the nightstand so it’s essentially useless, and she couldn’t reach it anyway.  Someone did find a medical alert pendant that works on a landline so they’re ordering that tomorrow.  If she’ll wear it, that might be a solution.

She worked as a nurse for almost 50 years.  She isn’t worried at all about a hip fracture, because she knows the mortality rate of a hip fracture in an 89 year old frail woman.  She doesn’t think she’ll fall, get a hip fracture and then spend two years miserable in a nursing home.  And truthfully she’s probably right. Her argument is that all these things like worrying about bed sores or falls or liquid nectar diets are nothing but prolonging her life with no concern for how poor her quality of life is. Like with the bedsores, or Covid, she isn’t actually concerned about either, it’s just reasons she comes up with for why a nursing home is a terrible idea(her reason for signing out of rehab AMA was how the staff didn’t wear masks like they were supposed to; her actual reason was just that she hated it).

And I agree but you still can’t make everyone around you miserable.

All that said, I am probably going to be the same way if I live to be almost 90.

Edited July 28, 2022 by Mrs Tiggywinkle