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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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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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Decision-making capacity must include;
1. understanding of the situation 2. appreciation of the consequences of their decision 3. reasoning in their thought process 4. be able to communicate their wishes.

Capacity can vary for different decisions too.

I have been told my relative has capacity to make medical decisions for herself. But also that while she can say she doesn't want to move into a nursing home, she lacks points 2-3 & cannot reason the alternatives. So she lacks capacity for that particular lifestyle decision.
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CrazyBizy Mar 2022
I would say #3 is a problem area. There are things around the time of the first stroke he doesn't remember, or chooses not to (we're never sure because he can surprise us). After stroke 2 the doctor mentioned there were signs of prior mini strokes and amyloid deposits, which is a precursor to Alzheimer's.

We are a family of perfectionists to varying degrees and I'd aruge he's the most perfectionistic of us siblings. There isn't a good choice regarding his move, so I suspect part of it is he simply doesn't want to make a decision.
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He cannot stay where he cannot pay. That is pretty simply it. He will have to move. I myself believe, since he will not engage on the subject, you will have to. Simply explain that he is out of money so will be moving, explain you will choose the best place you can find for him, and now apply for his medicaid for him when he is eligible and then do it. You are POA. You will sign his admission to his new facility as his name, yours as POA.
There isn't a choice here. Rather there IS one, and that is that he moves out onto the street. What does the lawyer think of that option for him? Can you give me another choice to consider? Because at some point he will be evicted from his room.
Speak this week with the admins; get their recommends. Whatever you do, you siblings being close in age, do not use your own funds or you may face this same position sooner rather than later.
I am certain this is hard to face.
I don't know personally if a Board and Care ever accepts medicaid, so it is a question for him. Some seniors who are quite with it might like being with about 5 or 6 others preferrable. Do attempt to talk to him about this. That's all you can do. At the point he will not/can not discuss it is on you. You have already, by the way, implemented you POA by paying his bills. I was in that same position when I POA for my brother. He was quite with it in his "early Lewy's; I let him decide things when he could/I did when he couldn't.
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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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Your Eldercare Attorney is correct: The only person who can declare if someone is mentally incapable of making decisions is a doctor. Then, your PoA is activated.

Curious: What does the attorney say about your financial liability if your brother cannot pay for AL?
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Isthisrealyreal Mar 2022
Actually, only a judge can declare someone incompetent. Obviously doctors are involved but, they don't get to make the determination that anyone loses their autonomy.
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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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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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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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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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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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Agree with most of the statements. Actually, with all the help he needs now, many ALs may not be able to accomodate him so he may end up in LTC at any rate either now or later. I would definitely call the Medicaid office and speak to someone there to get information. At that time you can also find out if ALs in your state accept Medicaid.

So sorry you are going through this.
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CrazyBizy Mar 2022
Appreciate your thoughts. He's being evaluated this week by one of the ALs in town that accepts Medicaid. If they won't take him, then the only other Medicaid option is a LTC facility that accepts it. The truth is, in his condition, he's on the borderline of AL or LTC. We re-reviewed his situation with his this past weekend and he knows we need to get moving by May (event though it may truly take just a little longer).
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CrazyBizy: As he's run out of funds, most likely he will have to apply for Medicaid.
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Let the facility make the decision and talk to him. Advise facility how much is left so they can start the Medicaid application for a NH bed in plenty of time. Some AL places also have NH areas as well, so it's just a matter of moving to another area.

Start a conversation with the AL and ask if they can still handle his needs and give them update on the money balance. Their social worker should be able to take it from there to start the process of moving him. Or to tell you he has to go to another facility and when that move needs to take place.
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I agree with CM. Perhaps you can say to him “This is what is going to happen, unless you suggest something different’. If he just shrugs you say “You haven’t suggested anything different, so this is what is going to happen. Do you have any comments?” It would be a good idea to document the conversation, date and sign, with a witness who signs also the record document. He’s tacitly made the choice himself, and this is probably the best protection you can get from him in terms of 'disagreeing'.
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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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ALF can not make you pay for his debts. It would be to his benefit - and yours - to talk to social services at his ALF so he can start the process of applying for Medicaid. He might have to move to another ALF or to a skilled nursing facility that accepts Medicaid soon. His finances will pay for his care until it runs out where ever he lives.
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Getting into LTC on the Medicaid rate (which is very low compared to Medicare rehab coverage) is nearly impossible in many places. If he has private funds to pay for a bed in the SNF/LTC for several months, that may be enough to get a bed for him. I'd suggest not bothering to move to another ALF, as his continued physical decline is going to make him need a higher level of care pretty quickly.
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The facility CAN make you pay his debts if that's how the contract is written. If you signed a clause that many have stating that you are the POA and would accept his debts, you could be on the hook. So go back and read the contract. I signed one with a lousy place in Texas, and realized later I was on the hook and so was her house if she didn't pay.

I would try to sit down with him, and record the meeting with your phone and go through what you need to address with him. Tell him you'll start making decisions if he won't.
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