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My mom chose this retirement community that is 5 hours away.


She was independent, then she started showing signs of dementia so was moved to assisted. As dementia progressed she started getting paranoid and began calling 911. She also was apparently annoying staff with her constant requests. I knew she would eventually need Memory Care but the place made the decision to move her I think too soon, but they were threatening to kick her out. The move was traumatic for her and she took a HUGE step down. I am so angry at them because it feels like they pushed her off a cliff. The last coherent conversation I had with her was the day before they moved her. Then she came back a bit, never to where she was before the move though, but she was doing alright. Then she fell and was hospitalized. She was very difficult in hospital and when they released her her place put her into Skilled Nursing. I asked if she got better they would return her to Memory Care and they said yes. I visited and she is doing much better than they said. They made it seem like she was terminal. She is the only person in Skilled Nursing unit who can walk. She is the only person who can talk. So there is no one else to talk with or be with. Mom was a very social person. Whenever I called Memory care to talk (they had to remove her phone because of 911 calls) she was always doing PT or listening to a musician who comes there, or walking around the unit. Now in Skilled Nursing when I call she is always just laying down in her room.


This is so difficult, but having to deal with these administrators is making it much worse.


They refuse to move her back to Memory Care.


I think because the administrator doesn't want to deal with her.


And or they are soaking her financially.


I am worried they are making her more miserable than need be.


I know they are making me miserable having to battle them.


I just want her back in Memory Care.


It's so strange that she is the only mobile and verbal person in skilled nursing.


They say her disturbances, lack of compliance with taking meds, and incontinence are keeping her out of Memory Care.


She is strong in her body and honestly I think she could live for several more years. Unless they make her so miserable she gives up.


Anyone else have problems with the decisions of the home?


Sorry for rambling. I am struggling with depression myself.

The first question I would ask is if the home has gotten a consult with a geriatric psychiatrist. Delusions and paranoia can sometimes be ameliorated with meds. It's a shame no one asked for a geripsych consult while she was hospitalized, because sometimes meds take a while to sort out.
Helpful Answer (14)
Reply to BarbBrooklyn
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Hugs. I'm sure I'd be struggling, too, if it were my mother.

First of all. It is important to compare your mother's current condition not with how she was before, but with how you would expect her to be now, all other things being equal, given any identified deterioration in her physical and mental health. What caused the fall, for example? What assessments have been done to monitor her condition and chart her dementia?

The point being that you always knew that she would get worse; it's a question of what can be done now to slow the process and, more importantly, to maximise her quality of life wherever she is living.

If the SNF part of the community has kept your mother mobile and talking after a difficult hospital stay, they must be doing a pretty good job don't you think? A fall and hospitalisation are often the slippery slope but they haven't let it be for her. It's not nothing.

It is a pity she chose a place so far away from you. Is anyone better placed to visit her regularly?

Admin brick walls are a pain to bang your head against.

Look again at the admissions criteria for memory care. See if there are any hitches there.
If your mother is paying a lot more for skilled nursing it is very hard not to take the cynical view, I agree, but there could be more to it than that.
Is the memory care unit oversubscribed? - quite possible if it's a good one. Do they even have a place available, do you know?
Are you in touch with any of the management team in the MCU? Could they be allies?

But even assuming it turns out that there are valid reasons for not moving her back which you accept, all the same your mother is mobile and aware and has emotional and social needs which have to be met. So: what are they going to do about that, then? It is part of their responsibilities to come up with something! Could she be taken to participate in activities, perhaps?
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Reply to Countrymouse
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Is this a CCRC and your mom did a buy in?
Like plunked down a six-figure amount to move into the place?

If so, my answer is based on this
First try to find a copy of the admissions contract.
I bet there is a lifetime cap $wise on services and once over that there will be extra fees billed monthly which your mom is expected to pay and if she can’t gives them ability to ask her to leave. MC is going to be way less than SNF. By keeping her in SNF, the facility is closing in on her cap and moving her into extra charges is my guess. If she cannot pay, then she will have to move out.

I am not a fan of CCRCs, they like annuities, to me are made to look oh so very enticing to fearful elderly and the elders fall for it. They both tend to be very one sided in being beneficial to them either in commission structure or in how the “cap” is met. I was Executor for an Aunt who bought a garden patio “home” within a village style CCRC and died within months of moving in. Even now decades later I’m still peeved abt the degree of foot dragging the CCRC did to close out the contract. The best was that CCRC determines who can buy the unit and they were in no hurry to do so and every mo the Estate was billed a HOA type of fee. It took probate atty not so veiled threat of filing loss of asset value action against the CCRC to make them get things done, find a buyer and return the balance due as per contract with interest. If I had to guess..... the CCRC your mom is in wants mom to become more profitable for them which means having her use up her cap, so she ends up basically private paying for nursing home care. Yeah I’d be depressed and mad too.

If this is what might be what is happening, and mom can not afford the additional costs, Mom might just be able to be eligible for Medicaid and move into a NH closer to you. There are great NH that take Medicaid and have activities programs for residents. If your states Medicaid pays for MC, she might be able to go into a Medicaid accepting MC closer to you. Personally I’d go for it to be a lateral move, that is she stays in a NH. If she lives long enough - which you feel she might - eventually her level of care needed will be skilled nursing care aka a NH and you really don’t want to have to move mom again 2 years from now from a MC to a NH.

So find or get a copy copy of the contract and have an atty review it & how to break it and get some $ back. If this CCRC is kinda predatory, there will be others who have had the same issue with this place. A NAELA or CELA level of elder law attorney will have likely had this place on their radar for previous clients.

Start visting NH in your area that take Medicaid. If mom still has $ she moves in as private pay and once impoverished then applies for Medicaid- be upfront with admissions as to her situation. If a NH takes Medicaid, they know the financial strain care costs. There will be one or two NH that will be a better fit for your mom, plus no more 5 hr drives! Try to find out if there’s an activities director and what type of program they do. Some NH are lil’ hubs of seasonal arts & crafts activities; some have gardening activities. Others more all we do is weekly movie night. My mom’s 2nd & eons better NH had lots of activities & gardening and had them linked in with scouting troops for working on loops or badges. They did regular field trips and restaurant outings once a mo, for these family can join in, although you go there in your own car. Really you need to shop around to find the right place. There will be one. Forget about the landscaping and exterior of the place; instead look at what it’s like for lunch and activities and how they do safeguards for those who wander. Good luck and let us know what happens as we all do learn from each other.
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Reply to igloo572
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JoAnn29 Feb 7, 2019
Igloo, we have one of these CCRCs near me. It has cottages, independent apartments, AL and LTC. Now I haven't read anything for years, but u buy in for 150k to 200k depending on which you choose a cottage or apt. In addition u pay monthly, 1400 for an apt. more for a cottage. There is suppose to be 90k out of the 150k that can be used for LTC. My friends sister had a stroke and was transferred from an apt to LTC. They tried to bill the sister fot her care. Friend produced the contract (and had been present when it was signed) proving they needed to use that 90k for sisters care.

Never did understand the whole buy in thing and still having to pay 1400 a month.
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Your profile states that you are caring for your mom however you kept mentioning "they". Obviously you are not responsible as a guardian or conservator. So who are "they". Another family member? The state? Someone has go sign off on these moves. If you want to remove "they" then you need to petition to become guardian/ conservator.
Bit you also mention her behavior and medical lack of compliance prevents her from going back to memory care. That seems about right
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Reply to MACinCT
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Long Term Care ombudsman are a federal requirement in the U.S and exist to advocate for situations like the one you are describing. Some are highly effective, some are not. It is primarily a volunteer program but I used one and found them very helpful. A friend used them and they weren't.
Something about having another set of eyes asking embarrassing questions of a facility director changes the dynamic. You don't have to do it alone find an advocate they usually know something about legal requirements for discharges.

You can be sure the facility itself isn't going to inform you about your legal rights.
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Reply to happilyfree
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Hi I lost my Mother June ,7,2018 She was only in Nursing Home 1 yr. I struggled and fought system too. I do believe our elders r being taken advantage of. Any who I suggest Guardianship
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Reply to Simple
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I think a Care Conference with all the people in the LTC unit involved with her care and including the the social worker and the AL-MC director is in order. Get your questions and ducks in a row first. Have her evaluated by PT for mobility as well as her physician for her dementia. If there is truly no relevant reason that is explained for her to be in LTC vs. MC, then she should move. If you can't be there in person (which to me would be worth the drive and gives you and eye to eye conversation as well as seeing your mom), then arrange for a conference call. By the way, if you think it is a good idea, even mom can attend the care conference.
I will tell you my dad had to move to LTC because of his fall, and a fractured femur that landed him in a wheelchair. He is also social and had friends he left behind in AL. He isn't mobile but certainly more with it than any of the other men there. He is depressed and very lonely because of it. He has gone downhill more rapidly due to the loss of connection.
All moves for people with dementia are very disorienting and upsetting as routine and familiarity is crucial. However, in this instanceI would advocate for her moving out if that is at all a possibility. But yes...she doesn't need a phone at this stage. Good luck...I understand your concern.
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Reply to Harpcat
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I think you need to contact Adult Protective Services and report your concerns and ask for advice. You also must get help and input from your doctor and an elder attorney. Or, possibly you may have to remove her and put her into another home. I don't see many other options. Good luck. By the way, if she was hospitalized because she fell, I do think that most hospitals will place them into a health care situation, i.e. a nursing home, after being released for recuperation. Whether or not she stays there is an issue I can't answer. From what I have seen, they usually release them after therapy to where they were originally unless there are problems that only a nursing home can handle.
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Reply to Riley2166
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Make a Smart Move to Move her elsewhere. You have this Right, No Need to Continue to battle and Fight.
Normally, A Place has the Decision to Screen Mom or Dad, But if you feel she is getting Treated Unfairly or Something else, Talk to a Social Worker in another facility of Moving Mom.
If Mom is Paying out of Pocket, Not sure how much longer she can afford to do this, Unless she is Wealthy and Wise. She may have to have a Spend down with Medicaid, Which then, They will Pay.
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Reply to Parise
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Yes, care facilities can and do make errors. The place that my late mother was at held a family meeting-her in attendance. They said "Ma'am, you're too well to stay here." Umm ... Wrong. DEAD WRONG as less than 48 hours later, she suffered a stroke there and died days later. Be very careful.
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Reply to Llamalover47
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