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Mom is in an assisted living facility nearby. She is 92 and has moderate dementia. She is on a fixed income and is running through her savings. She must live there two years, use up her savings, before she qualifies for Medicaid. We took over taking care of her meds to save $700 a month. My husband is her go-to person for errands, trips to doctors, change the clocks, pick up meds, get cash for her, etc. She won't use the facility's bus. She's come to rely on him. He's a good guy. I haven't been able to help in some time because of mobility issues.


Recently my issues have worsened and so we are having to move some distance away because there are no ADA apartments nearby. My husband is now busy caring for me. He understandably would like to turn over mom's care to my siblings. So I've reached out to my out of state siblings to take over her care. They want to hire a part-time caregiver though there aren't many in this area plus mom insists she doesn't need anyone. She says she'll rely on her 98 year old boyfriend to take care of pills, drive her to doctors' appointments, etc.


Is it unkind to move her out of state and away from the boyfriend at her age if she refuses a caregiver? And what about the cost which will surely deplete her savings more rapidly? I want to do the kind thing here, but we can't look after her any longer. We're struggling and frankly burned out as it is.


Advice?


Thank you.

Pickle situation - damned if you do, damned if you don't.

The issues I would mention in regards to moving mom:
1) moving dementia residents can lead to confusion/more decline quicker.
2) if moving out of state, you would start over with state requirements - additional 2 years?
3) can she be "weaned" into using the facility offerings (meds, bus, etc.)
4) removing her from her BF (this may be moot, BF may not have long left!)

Before signing up with mom's facility, I asked about the medications. Her GOOD policy gets 90 day supplies for a pittance. They indicated they had no issue with me handling it, but just after moving in, WITH a 90 day supply already, they ordered her meds via the "usual" place (blister packs presumably.) It was some serious money, and probably only covered one month. WHY did they need to order her meds when she HAD a 3 month supply? I had them return it. We STILL had a remaining balance, and it took several calls to finally be told it was a "restocking" fee. I told them and sent a letter with payment stating it was being paid despite feeling this was not right, but in no way would we pay again as I stipulated with facility, doctor AND the place they were NOT to fill any orders without talking to me. Nothing happened for some time, but when something was ordered again, I had to track it down - we needed to have a "profile" only set up, I believe it was at the facility (they should have done this the first time around!)

One thing that is perplexing is that they charge you - is that for the medication itself or for dispensing it? AL and MC costs should include some care, especially since most/all will not allow medication to be kept by residents, but you would have to check with them or the agreement to see what is covered. Mom is in MC and the monthly fee covers up to 1 hour of personal care and medication dispensing (up to a point.) Can you inquire with them about the need to keep costs down so that mom can stay? Can you provide the meds and they dispense? Although AL/MC places can be often easily "filled", having a guaranteed resident might be preferable to having to find another. See if you can work out something with them.

If you haven't moved yet, several things can be done to alleviate time spent:
1) consolidate trips, even if it means having meds/money before needed.
2) if she has a doctor appt, see #1
3) to get her used to relying on the bus, have hubby go with her ON the bus.

#3 can be done by saying car needs work, he can't use it. BUT, if she has dementia, is it wise that she would travel on the bus alone later? She is likely going to need some kind of assistance from someone.

IF she has only met a few months of the 2 year requirement AND because the dementia will get worse, moving her now will likely be the best option. However as noted this could cost her. How far away are you moving? Could she come for a "visit", to see how well she can transition? Earlier in the dementia path is better than later when considering a move. Would she have a way to stay in touch with her BF (phone, facebook, skype?) What are the requirements/facilities/costs for the state you are moving to? Are the requirements/facilities/costs any better where your siblings live? Each state and each facility will have different offerings/costs. Explore them all carefully and ask a lot of questions!

Although you indicate burnout, if you decide to move mom, could she live with you (or sibling) temporarily, to help stretch out her assets so she can afford the balance of the 2 year (or whatever) requirement in the new state? If she's currently in AL, not MC, it doesn't sound like she needs much "Help" at this point. Having her in your/their home will have it's own issues, but might make the transition easier both logistically and financially. Meanwhile you can explore ALL the options available rather than having to make a quick decision about the new place, if you choose to move her.
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Reply to disgustedtoo
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disgustedtoo Jun 3, 2019
P.S. If you do decide to move her, make an excuse like the place is going to be renovated or something like that, and she needs to move while it is done. Tell her BF will need to move as well, just not yet. Keep telling her he will be coming soon! Dementia does have its own "perks" - when mom asks me to drop her off at her mother's, I defer it to another day as it is too late today, not on my way home.

It does get tedious repeating things, but as long as this kind of repetition works, it is better than explaining to her over and over that her mother is long gone!!
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You must take care of YOU, else there will be no YOU to take care of mom. Ask social workers what you should do because, in all honesty, a 98 year-old boyfriend cannot do the caregiving. Wow - that just seems unfathomable. Prayers sent to you.
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Reply to Llamalover47
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My feeling is this. Your mother is very elderly and have lived your life and now all things fall on you which is not fair. It is your turn to live and besides you are facing health issues yourself. And it is doubtful there will be anyone to care for her. IF you plan to have her live with you, then you must take her with you. If not, you must find a suitable placement for her. Talk to Medicaid, office on aging in the county that you live in, an eldercare attorney, etc. Get all the information you can. At this age DO WHAT IS BEST FOR YOU. Don't ever depend on others to help as mostly they won't do anything. So seek out help and information and then take it from there - but you cannot continue to care for her. There is good information out there regarding the finances but you need professional advice.
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Reply to Riley2166
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It's possible the move would be a disaster. What if you leave her where she is, pay the $700 for medication (I know, it's too much, but just accept it), hire an outside caregiver to go in to do the errands, and then take care of yourself. This refusal for care other than family will go away if your husband simply does not run around for her.
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Reply to ArtistDaughter
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Are there any thoughts about the 98 y/o boyfriend? If bamboo123's mother moves out of state, maybe he would be willing or in a position to do so, too. On the other hand, at that age his likelihood of needing care in the relatively near future is high.
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Reply to jacobsonbob
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You must know that there are many people with no family members whatsoever. When there are family members the system tends to throw all decisions, all care, all help, all moving questions on their shoulders, but were there no family these decisions would be made without them. For instance an elder needing medicaid. Anyone who has dealt with medicare and medicaid knows the nightmare of it, yet when there is no family social services who is well qualified to do this the easy way, steps in and does it one-two-three. You are going now to have to explain the facts of life to all family remaining. See if you can get a social worker to speak with the family. There will likely be no ideal, but there will be a decision made together and adapted to. You have to come first now, or all this will kill you, and I have seen that happen.
Then others will take over, but you will be gone.
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Reply to AlvaDeer
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This facility will handle mom's meds, but they charge points to do it, depending on the med. Plus, they want us to order her meds through their pharmacy, which charges higher rates than our local pharmacy. $700 a month is a lot for this service. Too much.
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Reply to bamboo123
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Worried,

Looks like her state works like mine. Some ALs will except Medicaid once the resident has private paid for at least two years. The problem arises though, the ALs only allow a certain % of Medicaid residents. So if they make that quota, Mom may not be able to stay anyway.
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worriedinCali May 29, 2019
Thanks Joann, that’s what I thought but didn’t want to assume.
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Yes. It is ok to put your health & well-being first and if that means moving mom, so be it. Your husband cannot take care of both of you. He will burn out fast.

The only thing that confuses me is the Medicaid 2 year residency requirement. Is that for the state you would be moving your mom to? If so.....can she afford to self-pay for assisted living for 2 years? Is she already on Medicaid in your state? It’s not clear what you meant by Medicaid and the 2 year requirement so if she needs Medicaid in the next 2 years because she can’t afford to self pay, then moving her would be a problem don’t you think?
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Reply to worriedinCali
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Why isn't the AL handling her medications. And why is it so high. If her monthly income is low, she maybe able to get state help.

I don't think moving her would help. She would still be near you and expecting DH to help. When her money runs out, next step is LTC with Medicaid.
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Reply to JoAnn29
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worriedinCali May 29, 2019
The AL isn’t handling her medications because it costs $700 a month and it is cheaper for the OPs husband to do it.
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