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We're 6 years into a journey after a sibling suffered 2 strokes. One side is virtually useless and he made a choice to move into Assisted Living rather than have us and caregivers help him in his own home. We supported him as it seemed best for his overall well-being at the time (note: his home was sold to help pay for this arrangement). He's been on a slow decline and currently needs help getting in/out of bed, bathing, meals and med management. He watches TV all day with no interest in helping with simple things like opening mail, or preparing a list of needed supplies. Everything is left to me or my siblings (like the bill paying on his behalf - we have POA). Prior to Covid he refused to participate in PT, or even talk to anyone (aka, depression). Getting to the point -- he's running out of money, so he needs to move as quickly as possible to another facility that will accept him (he may be forced into a nursing home as most AL won't accept him now). Despite multiple attempts to discuss and engage him, he's making no decisions. Our Elder Care Attorney advised the POA is really only for when he's incapable/incapacitated, and if we make a decision for him that he disagrees with, there could be problems (he's not incapable of making decisions -- as a matter of fact he surprises us with what he can arrange/do when he puts his mind to it, especially when we're not around). We've already been told if he runs out of money, that we aren't financially responsible for his bills (as long as we've signed nothing stating such). That doesn't mean the ALF facility won't be after US though. We're simply at a loss as to what to do. No disrespect to him, but it's stressing us out...

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Initiative can be one of the first things that go when a person has a dementia.

It’s maddening for the patient’s loved ones. We want them to just “do something already”. But, they just can’t.

This video is about the early signs of dementia, but it has a section about that lack of initiative problem.

https://youtu.be/pqmqC-702Yg

It also has a good section about caregiver stress, that all of us could benefit from reviewing.
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After six years of having had a stroke, his brain damage has become permanent. No rehabilitation will help at this point. The stroke has damaged his body functions, but also has changed his personality. His condition will continue to deteriorate. He might develop vascular dementia in the future. He needs and will always need constant help.
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Contact your county aged and disability office. They can guide you on what you need to do to get your brother placed on Medicaid. May have suggestions where to look for a home as well.

I have used an independent placement agency three times, twice with my mom, once for my in laws . An invaluable service. Look up carepatrol… there may be an agency near you. Google care placement etc.. it might take a little digging. Carepatrol I used here twice, Arizona I found a different independent. These people know the in and outs of facilities., who has openings, who takes Medicaid and their requirements, cost etc. The agent met me for tours. The agent gets paid by the facility that you place in. I would never have found where my mom is on my own…
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Make the arrangements and if he disagrees with them he can say so. He then has to come up with a better idea, and say what support he wants with doing so.

How explicitly have you told him he has to move? Have you given him a deadline?
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Maryjann Mar 2022
Yes. After OP talks to the AL maybe they can put a calendar in his room and count down to the day his money will run out and he WILL be moved out.
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Crazy, talk to an occupational therapist at his AL if you can.

The muscles and process of holding a pen and writing are a whole different kettle of fish from the process of opening, closing and twisting things. All fine motor skills are not created equal.
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CrazyBizy Mar 2022
Thanks for clarifying that!
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I would say he needs a neurological work up. Things do change over time.

I would suggest taking what money he has left and place him in Longterm care. I am surprised the AL allowed him to stay this long. If he did not realize that PT would help him improve, then there was a problem back then. The brain has to be retaught. They found with my grandson, if his left side of his brain was damaged in his operation, his right side could have taken over with PT.

LTC may not take ur brother with Medicaid pending. With my Mom she had 20k left and was in an AL. I took that 20k and placed her in LTC. That gave me the time to apply for Medicaid and get them info needed. I started the application in April and placed Mom May 1st. She paid privately for May and June. I was able to get all the info Medicaid needed and prove she was spent down and confirmed all this with her caseworker in June. July 1st Medicaid started. My State only allows 90 days to get everything to Medicaid.

It is not what brother wants now, its what he needs. Its not do you want to do this, its he has to do this. So thats how you approach it. Brother you are running out of money and because of that you need to transfer to LTC.

As POA you cannot be held responsible for his bills. The AL will just have to sue him and SS cannot be garnished. Plus his SS and any pension will be needed to offset his care in LTC.

This is nothing you can sit on waiting for him to agree. ALs are private facilities. I guess the AL does not offer, after privately paying after at least 2 yrs, the ability to use Medicaid to allow him to stay there?
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CrazyBizy Mar 2022
Appreciate you sharing that journey. It sounds similar to where he may wind up... His current ALF doesn't accept Medicaid. We've had no discussions with them so far (we've been afraid to, as we're unsure of unintended consequences - ex: souring discussions with another ALF/NH). It was suggested by a case worker that he move to another facility (either ALF or Nursing Home) that accepts him and also takes Medicaid, so he'd already be there, and private pay until he's spent down the last, and apply for Medicaid. It was also suggested if another ALF won't take him (as he technically probably still shouldn't be there due to needing assistance to get out of bed, and risk of not exiting a building in time), that narrows his options down to NHs. And with his decline, it's where he'll likely wind up since he doesn't want to participate in therapy.
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As I replied, in my State of NJ, Medicaid will pay for an AL (that excepts Medicaid) after paying privately for at least 2 years BUT you must remain in that AL where you have been paying privately for this to happen. I don't think you pay 2 years at one AL and switch to another and expect Medicaid to pay.

Before I would take what a SW says, I would call a Medicaid caseworker to see if your State Medicaid pays for AL at all.
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You say he can make decisions, but won't. But is he prevented by depression from making decisions? I doubt he's the first person at his AL who has run out of $$ and had to move. Let the facility know the situation, ask them how and where to get him moved. They definitely don't want him there down to his last penny.
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There are stubborn folk who WON'T make a decision they don't want to. (Looking at my DH). An avoidance tactic.

Then there are the 'shruggers' or 'I'll manage just fine' folk who CAN'T decide, may even know they are losing skills in this area but are still able to 'show-time' & bluff quite well. Some with vascular dementia (evident as calcification as past TIAs on scans) can still be quite crafty at showtiming. The old "I forgot my glasses" or "I can't hold a pen" to cover for not understanding the paper put in front to sign.

After strokes & TIAs (mini strokes) I may guess showtiming & vascular dementia.

Arrange what you need to.
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I think if he was to have sophisticated brain imaging, you would see that the are of the brain that controls executive functioning, initiation and motivation are damaged.

How does he do with "now it's time to..." statements? Does he go along or resist?

How does he do with choices? "Would you like to go outside or go to the crafts room?"
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CrazyBizy Mar 2022
Question 1... his current responses are either to shrug his shoulders or don't reply at all (which is frustrating).

Question 2... he is verify particular so he has no trouble expressing yes/no or I don't want to do that. However, in situations where doesn't want to participate he will then default to shoulder shrugging or clam up.
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