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He is constantly accusing her of things and criticizing what she doing. They refuse to go to ASL or nursing home. My mom and sister get along well. Both of them are incontinent but are ambulatory. My sister has been nothing but kind and supportive. She has been there 10 days and is thinking of leaving. I will be relieving her for a week every 4-6 weeks. Any suggestions on how to handle him?

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I'm surprised it took 10 whole days to figure out that home care does not work. Your sister needs to move out, like right now. Then start looking into facilities for your parents to move into. The fact that they don't want to move is irrelevant. Once their kids stop waiting on them 24/7, they will have no choice.
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MeDolly Sep 2023
Yes, I agree, stop doing everything for them, all that is being done is giving them a false sense of independence, they are not independent.

Time for some tough love this will not get better, do what is right for them and everyone else.
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10 days is enough time to try on the boots on fulltime caregiving.

Can you plan a quiet time to have a thorough discussion with your sister? To re-evaluate 'The Plan'.

How is family-care working/not working?

- Will medical checkups &/or diagnosis help?
- Will medication review (for Dad) help?

How long will you trial family-only care?
How long to trial family + home care aide care?

Also, timelines;
What will your line in the sand look like when care at home no longer works?

What does your sister's line look like? Are you on the same page?

Actually, better grab a few snacks & drinks while you discuss. Try to keep your heads & humour. It's a lot to think about.
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Welcome, Allie!

Is this plan sustainable?

It seems to me that you are probably both seniors yourselves? How is this going to impact your physical and mental health?

They aren't going to agree to move if you guys appear to be willing to be "the plan".

Do your parents have dementia? Have you talked to the folks at their local Area Agency on Aging about what resources there are for them?

Has your dad seen a geriatric psychiatrist to determine if there are meds that will alleviate his depression and agitation?
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Thank you BarbBrooklyn. Thank you for your suggestions about resources and psychiatrist for them both. They have refused psychiatrist and neurologist in the past. Yes I think both my parents have dementia. I will see about getting doctor appointments for them.
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Southernwaver Sep 2023
Don’t ask them if they want to go. You tell them it’s time for their appointments and you get them dressed and take them. Be aware of what’s called showtime.

Also, look on YouTube for videos by Teepa Snow. They are very good.
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I can't quite comprehend a move from another state to try to care for two elders in their 90s who are uncooperative and undiagnosed and who will not give POA. I would caution against trying to get POA or guardianship and trying to manage their care, as it is difficult to impossible enough to deal with cooperative elders in these situations. It was poor decision making on your sister's part, and yes, I would imagine she will leave. You say your father is verbal. Is he competent also? If so he will have to arrange his own help, or a movement into care. They may also be reported to APS if there is no POA or diagnosis. They may need to be overseen by the state if they are unable to get other help.
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Yeah, this is why it’s so hard. I don’t think people realize how hard it’s going to be. As we say, you can’t set yourself on fire to keep others warm.
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Any suggestions on how to handle him?

Yes, but you probably won't like my suggestions. We are on the "far" end of things now - but they say hindsight is 20/20 right?

After my MIL died, my FIL was on his own. My DH began to have to spend increased time helping FIL - but for the most part he was still independent. Then SIL and her DH moved in out of their own need and because they were there, he quickly became very dependent on them.

After a little bit it started to become apparent that he was slipping cognitively. We figured he had dementia - but his private primary seemed to disagree. So we just kept forging on.

He has since been diagnosed with dementia.

But it is important to recognize that during all of this; that he was lying to everyone about us. And we also knew that. He was telling everyone that his kids were doing nothing for him and taking all of his money.

(now - to some extent - this was an interpretation of the fact that he was helping SIL and her DH - BUT he was leaving out entirely that they were taking care of him - and he would lump my DH and myself in with that as well and we were taking care of him and never received a penny from him).

He would tell people that his grandchildren NEVER visited or called - with them right there in the room. And we knew that if he was telling people these things in front of us he was telling them things behind our backs as well.

SIL would hear him on the phone with people - most especially his SIS in NY, or his BFF or his "not girlfriend" who never visited him - all who were more than happy to give him advice (against us) - but never come to visit and actually make sure he was ok (so I don't see how they actually believed even 1% of what he said or they would have tried to help him in ways other than just egging him on).

My point in all of this - you have to protect yourselves. And if that means that you have to make sure THEY live somewhere that is "safe" (as in not at home) where you and your sister don't have to provide 24 hour care- then you should consider that option. It shouldn't be off of the table. Even if they don't want it - because someone with dementia isn't necessarily capable of making good choices.

There is a whole range of options out there besides home care. Everyone always wants to do that but it isn't always optimum for anyone - including the elder.

We always told my FIL that the lies that he told were most dangerous to HIM. And that if he knew he was doing it and understood what he was doing - he should consider the ramifications. Because all he was doing was putting himself in the position of going to a nursing home faster if he made people question if we were taking care of him or not.

People look at someone in that age range and frankly assume they are diminished capacity. We let them assume whatever they wanted. Because it protected us from his lies.

It also helped to have a united front. We NEVER talked to him alone. If one of us had to talk to him - another one was on the phone to hear it. We didn't trust him. He didn't even always know someone else was listening. It was better that way - if he wanted to scream or yell at one of us - when he later said I never did that - for one of us to pipe up and say "I heard it too".

So the refusing part - there are options there too. The hospital trip and the unsafe discharge. Both you and your sister no longer being available to be primary care provider and showing them just how independent they really are.

For us - he was in rehab (again). He told us he was going home (again). and that we were going to continue to take care of him. He pulled a fast one and we called his bluff. It took over 2 years to actually come to fruition because the walls kept falling down when we built them. But we were finally able to get him all of the help that he needed - including the 24/7 SN and psychiatric care.

It's a process and it doesn't happen overnight. But it starts with the first step.
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I was in a similar situation with my mother. Could not get her to go to AL . My father had passed on. I had been bringing my parents meals , doing shopping , all doctor appts etc for years already before Dad died in a nursing home after 3 months with a reoccurrence of cancer . Mom stayed with me for a few weeks after his death but then went back to her own home , however I was doing everything , meals , cleaning etc for another year . I lived a mile away. Mom’s cognitive status got worse and Mom was not safe alone at home , nor would she do any hygiene anymore and was very incontinent of urine . She lived on cookies and ice cream and threw out the meals I brought . A very wise social worker from my county Area of Aging told me to stop doing things for her. Sometimes “ you have to let them fail “ . The social worker came and did a needs assessment and determined mother was not safe and needed 24/7 supervision . The social worker gave her some hypothetical scenarios and asked my mother what she would do and my mother could not come up with a plan .
The social worker was scheduled to return two weeks later( with a big strong helper ) to remove mom from her home and put her in AL that I had previously chosen. (My mother had refused cognitive testing or to tour any facilities .) My sister had told my aunt what was going on and my aunt called my mother to tell her we were going to dump her in a nursing home. Mom went off the deep end saying she had chest pains. We ended up calling EMS to go to the ER. Once at the ER I explained the situation . She was admitted and was tested for and diagnosed with dementia. While she was kept for observation for the chest pain for a couple of days , the social worker at the hospital set up for Mom to go right from the hospital to the AL that I had chosen .
I wish you luck. Your parents’ needs will only increase . I suggest you try to get them placed in a facility. Do not bring them into your home , it can be difficult to get them out.
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BlueEyedGirl94 Sep 2023
@waytomisery - it's interesting that you say the social worker gave your mother hypothetical situations and she couldn't come up with a plan. We did this a few times with my FIL and literally the very best my FIL could ever come up with is "we'll see" (his absolute favorite response when he doesn't have a real answer or knows he's wrong) or "I'd handle it."

In other words - he had no solutions - just assumed that if he was ever PUT that situation that he would just figure it out on the fly.

So when it finally came down to it - we made him put his money where his mouth was. One of the hypotheticals that we gave him was "what if none of us could be your caregiver any longer? You know you can no longer live here alone without help. And caregiving for you is impacting everyone's health. What happens if none of us are able to do it anymore?"

His response was always "We'll see." for the most part - but he also said that he didn't really need help and that if he HAD to - he could do it all on his own "but why should I do it myself when you can do it for me?"

So that last time in the rehab - when we had told him that the PT stated he needed 24/7 skilled nursing and that we could no longer care for him at home (myriad of reasons - but he had passed the line in the sand and we just couldn't do it anymore) he said that it didn't matter and that he was going home and that WE were going to take care of him.

We told him no - that if he wanted to go home - he had to hire 24/7 caregivers. He said he couldn't afford it. We said then he had to go to a nursing home. He said he would rather die.

We had a family meeting scheduled - during which the Social Worker was *supposed* to back us up and support the plan. But he had a meeting with her before and told her that he was still able to make his own decisions and he was going home. She opened with that. The PT looked miserable.

FIL looked positively smug. SIL looked sick.

He had won - he was absolutely certain of that. I mean what could we possibly do in front of other people right? HE was in charge.

He underestimated how serious we were though.

I looked at the rest of the family and how drained and tired they were. How upset the PT was. And how positively giddy my FIL was. And I said "We understand that ultimately FIL has the final say. But let ME be clear (using her words back to her) you have told us that FIL needs 24/7 care. FIL cannot take care of himself at all. He can barely get out of the bed. And WE will no longer be providing that care. Yes, he can go home if he chooses. THAT is up to him. But is he chooses to do so, he will have to hire 24/7 caregivers because WE will not be the ones taking care of him. And if you send him home without that care in place - he is an UNSAFE DISCHARGE because he does not have anyone at home who will be providing his care."

She took a moment and then she looked at my FIL and ruined his day. Told him that since his family wasn't going to provide his care he had two choices - either he hired caregivers or he went to a nursing home.

The bubble burst. The smugness went away. And everyone else came to life. The whole temperature in the room changed.

Sometimes we have to use every "weapon" in the arsenal to get them to do what is best for themselves unfortunately. Never mind what is best for us.
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I have to ask..
What did your sister give up to move to Florida to care for parents? What are you giving up to go to Florida every month for the foreseeable future?
At some point remaining in your home, unless you have help is not possible.
You and your sister are making it possible but is it realistic?
If your parents are cognizant and they "refuse" to move into an Assisted Living facility then you and your sister should back off the help that you are giving them.
They can pay for caregivers.
Are either you or your sister POA for either or both parents? If no that should be taken care of.
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Also, many people here have noticed that when you do everything for elders, they don’t appreciate it because in many cases, they think they are doing these things themselves.
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lkdrymom Sep 2023
That is an interesting observation, that they truly believe they are the ones doing a chore not someone else.
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