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My husband's father's wife (not his mother), who I will refer to as Loved One, was diagnosed with Alzheimer's two years ago. We live far away and so, to try to help where we could, we hired an Aging Life Specialist. I think she's been very helpful getting the proper diagnosis, attending doctor visits and helping to organize an application for Community Medicaid. She has helped arrange for caregivers which my FIL has reluctantly allowed a little bit.


Recently, there were a number of ER visits and at the last one someone told my FIL that LO didn't seem safe at home and that the state might step in and keep her. This has seriously freaked him out and he fired the Aging Life Specialist because he thinks somehow she is to blame for this. Of course, she isn't. She was advocating for more help in the home to make things safer. She does not want the LO removed. Anyway, my question is: Now that they are approved for Community Medicaid, there seem to be a lot of rules that need to be followed. Who will help someone with these rules? I imagine most people can't hire their own social worker so where do they turn? Does Medicaid give you a case worker who will advise you?

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Marcia; I'm wondering if what was said to FIL at the ER is what FIL reported to you was said. Or if you've heard from an independent source what was said.

What was said by someone at the hospital, and what FIL "heard" could be two different things.

Early on in my mom's journey, before any of us thought that dementia might be an issue, the discharge nurse explained to my mother, in my presence, that if she needed to see her PCP soon after discharge, because if she came back with the same issue, the hospital would be penalized my Medicare.

My mom said, sadly "So I should never come back to this hospital, right?".

I was so angry with my mother, I wanted to hit her. Cognitive issues did not even enter my mind. Only her guilt-ridden "it's all my fault" childhood appeared to be in play just then.

In retrospect, my mother had stop reasoning with a full deck and I should have realized that.

Start to check out that what FIL is reporting is actually what was said to him.
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Marcia7321 Aug 28, 2018
I wondered the same thing. I asked the SW and she said that while she is not qualified to diagnose anyone, she thinks FIL's behavior is a combination of stress and he won't wear his hearing aids or admit that he can't hear someone. Whoever said this to him said it before the SW was at the ER and he didn't discuss it with her because he got it into his head that she was the one suggesting that LO should not be at home. I think they had recently had a discussion about what would happen when LO needed more care. So he put the two things together.
He is grasping fairly complex issues with regard to the estate planning (when he can clearly hear them!) and is competent to handle bills and things. But who knows? What I do know is a frank discussion of his competency will not be well received right now.
My main focus now is going to be how to try to relieve my husband's distress at his inability to help his father. I hope he will at least try a couple of counseling sessions. I believe we have done what we can for FIL and LO. I am hopeful that the locals will be supportive to him going forward. The calendar of assignments annoyed me yesterday, but today I find that to be a very hopeful development. They aren't bad people. They do care. But they are (or maybe were) in denial about the situation. And FIL is just REALLY hard to help.
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They have children together, then let them deal with their parents. I know harsh. But they are there. If they were threatened with the "state" than the hospital didn't carry it thru, did they? Dr. would not have released her. Or, he would have called APS to see how the home situation was.

I see where ur husband is coming from. But he may have to just let Dad do his own thing until something happens and its taken out of his hands. He is just going to let the siblings there watch out for the parents. Something "will" happen and decisions will need to be made.
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Marcia7321 Aug 27, 2018
I agree! I'm going to see if I can get my husband to consider talking to someone about his anxiety on this topic. Barb's story about her uncle and aunt really put things in perspective, didn't it?
I'm not sure who at the ER said that to my FIL (about the state taking her). It wasn't anyone with authority, I don't think. I think someone was saying "Hey, this is the second time this week we're looking at bruises on this little old lady. You gotta do something different or else." At least the locals seem to be stepping up a bit. That's good. I hope it lasts. My FIL is very happy about it.
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The short answer is that you really CAN'T help someone who doesn't want to be helped.

Your poor husband! It must be very stressful to feel responsible and have no power in this situation; having to leave things to the local (and seemingly clueless) family is very hard. We've got a couple of other posters on here going through the same thing.

He might benefit from seeing a counselor who can help him sort out the things he can change and the things he simply has to live with, until they get bad enough for the authorities to step in.

I watched this with my aunt and uncle. She had CHF, he had dementia, but by gum, no one was going to take my aunt away from him. She fell and broke her hip; he pulled her around on a throw rug for three days. When EMTs showed up, he attacked them for "taking her away".
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I know you don't want answers but why on earth are you paying for a social worker? FIL should be paying for that service if he finds it useful and if he cannot get one assigned and paid for by Medicare or Medicaid.

As to YOUR "assignment" just email back that you are unable to provide hands on care. Caregivers need to be hired.
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Marcia7321 Aug 27, 2018
I already responded. (Thank you so much for including us but we won't be able to help out in this way.)
I mostly hired her because on a visit, FIL looked so awful and my husband was extremely worried about him. But he doesn't really look much better now.
After he fired her, my husband started waking up in middle of the night (again) and he's getting chest pains. I think her involvement is as much for him as it is for FIL.
FIL would never pay the social worker. He barely wants to pay the caregivers. What is it with old men and their money? It's like if they don't spend it, they will live forever.
He has not reached out to Medicaid for a social worker. He has accepted the Medicaid that pays the hospital bills but has not accepted the home services. He did say that he will do that soon. (He's been saying that for months, though.) He better do it soon. I think they'll close the file soon.
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I vented. Now I took off the venting because if the locals ever get on here and see it, it will cause trouble. Sorry to the site!
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Home-based services, here is my experience. Once approved for Medicaid, you need pick the waiver administrator...in my area, there are only two, the local area on aging and a third party. You should call the area on agency to find out who in the area administers home based services. Once you choose, a social worker and a nurse come out for a needs assessment...I would suggest being there or at least on speaker phone so what is needed is relayed to the admittance people. If healthcare hours are given, they will give a list of in home providers to choose from. Services they may provide are workers, meals on wheels, a lifeline, cell phone, incontinence supplies, a nurse to set up meds, etc.

The problem with home based services, imo, with two people are:

1. The aides will provide care for only the person approved. Example, our aides would only cook or clean up or do laundry for the one approved for services so the other. So, the dishes were separated on the counter and the aide would only do one set.

2. They do not do "heavy cleaning" which is subjective so if you have a lamp on the table, it is dusted around. If family can afford it, I would suggest a decent cleaning person once a month.

3. Unless LO is declared incompetent, they will listen to her wishes so it can cause problems.

4. While you do get some good aides, most are just getting a paycheck. Family should create a binder of what is expected and special needs of the LO (ie, diet restrictions). Agencies do not necessarily relay the info or aides do not read it.

4. Check with the agency on what is provided. We had a few agencies which did not provide gloves or PPE to employees so we needed to provide it and it got expensive.

5. There was alot of theft at the house money, jewlery food and toiletries. Get a safe for valuables and money. Also, I would use a grocery service to deliver needed things so you can monitor things.
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Marcia7321 Aug 21, 2018
Thanks so much! Very helpful. What is PPE?
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Is Community Medicaid in home waiver services? Also, is it approved for LO only or both?
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Marcia7321 Aug 21, 2018
I don't know what in home waiver means. LO has been approved to receive Medicaid services at home. The file is approved but has not been opened because FIL has not chosen any services. He wants to see "the menu". If he ever chooses a service, the file will be opened. If he doesn't choose a service, the file will be permanently closed and he'll have to reapply if he wants services paid by Medicaid in the home.
If LO needs nursing home care, a different application needs to be made.
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Unfortunately, that isn't how it works. I can hire and pay the specialist but he and LO are the clients. If he fires her, she is fired. He may think we are criticizing his abilities. I do worry about his mental status but he is not forgetful, doesn't have trouble finding words, still manages money...we wouldn't even want to take over as decision makers. In addition, he and his wife have two children who live locally. They have not been particularly attentive (family dynamics!) but they have been around during the most recent crisis. They both don't think their mother is in need of additional care. They both think the care manager is a waste of money. So they support him in firing her.
My husband is upset but I pointed out that if something happens to him, we aren't even next in line to be decision makers for her care. Her (their) children are. So there really isn't anything we can do. We told him we would pay for a different aging life specialist if he found one he trusted more. But he doesn't want anyone who can "report" on him to any authorities. I think the caregivers that he currently has are mandatory reporters. But maybe he doesn't know that.

I think he's terrified. Terrified to lose her, to make a mistake in her care or with the money, to lose control. I think whoever scared him in the ER intended to encourage him to allow more help at home. Sigh.

I will ask the aging care specialist to send him a final summary of what she's done to date and what she was working on. I'll ask her to include the phone numbers he should call if he has any Medicaid related questions. Maybe, if she doesn't have any more bad falls, he'll reconsider accepting help and rehire her. Thanks.
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We have applied for Community Medicaid as well and I’m not aware of anyone being assigned to us in the capacity of a social worker or advisor. We haven’t been approved yet, but when I have questions, I just call the local Medicaid office.

It sounds like your FIL isn’t on board with much that anyone is doing to help LO. Do you know why? Does he think that you don’t think he’s capable? Can your husband talk to him and encourage him to accept help? I would try to rehire the AL specialist since it sounds like she was doing a good job. Tell your FIL that the specialist is there to help and he is not to fire her again without your permission.
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