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Hi all,


My 89-year-old mother lives in a Continuous Care community - where you can go from Independent Living, into Assisted Living, into Skilled Nursing or Memory care, etc. On Nov 8th, we moved her from Independent into Assisted Living. She was enthusiastic about the move because she was so depressed and isolated in Independent Living. Her dementia was making it very difficult for her to socialize and get by without a lot of help. Unfortunately, the transition was much worse than we anticipated. We are not sure if she had a mini-stroke or if the move itself was just too much for her, but her dementia took a significant step down in the course of 4-5 days. She cried a lot the first week, several panic attacks, etc. and sadly, on the 5th day, she lost her vision in her left eye (which we now know is permanent).


Fortunately, after the first 10 days, she started to settle in and within about 2 weeks, she actually started to seem happier than she's been in years. She likes going to breakfast, lunch and dinner with others and she says everyone is really nice. We have brought in 2 of her prior aides to help her with the transition and take the extra burden of daily cleaning, etc. off the assisted living team. They are there 3-4 hours a day. Overall, she's happier than she's been in the last few years.


Unfortunately, the facility has told us that she can't stay there and is forcing a move to their memory care facility on January 16th. They gave us only 30 days' notice. Their memory care facility is very small (only 18 residents), dark and depressing. Mom would move from a nice, sunny one bedroom apartment into a tiny, dark bedroom with a small window and bath. My mother has lost her short-term memory, but she is still very aware of what's going on around her, and to move her to that level of care, especially when she seems to be doing so well, would wreck her. We are very scared of what it would do to her mentally and physically.


We have asked the facility for more time so that we can assess her needs and determine if there's a more optimal living situation for her (e.g., moving her into an apartment with round the clock care next to my brother, or a different memory care facility), but they are not budging. We got an ombudsman involved, who agrees with us 100% that their concerns do not warrant such an immediate move, but she cannot get them to budge. We are getting to the point where we may need to hire an attorney to file an injunction to stop the move - just to buy us some time. We are willing to provide her with 24/7 care in her apartment, if needed, temporarily to address their concerns about safety.


Has anyone been through this before? I welcome any/all advice.


Thanks!

Frankly, start looking for a better memory care place for her. This place sounds like it's not the best location for her regardless of the level of care.

Mid-January is plenty of time to find a new place for your mother, though. I know that with the holidays it's not fun, but I decided to move my mother from her first nursing home and found an excellent place in five days and that included having the Fourth of July holiday in the middle of that time. (She moved on July 5.)

Honestly, I found memory care to be a much better place than an AL or skilled nursing, because they're all about mental stimulation in MC. Memory Care focuses on the the residents and what might make them happy, and I found that other nursing homes focused too much on all the aches and pains stuff. I chose MC for my mother, because I felt that mental stimulation was the only thing we could really make better for her. We couldn't fix her heart failure or her creaky knees or her macular degeneration, but we could have people who would talk to her, involve her, and be friendly with her. (Don't expect dementia patients to make a lot of actual friends, though. They become like toddlers and will play NEXT to one another rather than WITH one another.)

Your mom should be in a place with multiple levels of activities for various levels of memory loss. My mother's place had crafts, trivia, bingo, flower arranging, and book discussions for the more cognitive group, and they had activities like music therapy and building blocks for the really low-functioning folks. Those activities had a lot of aides assisting as well. That's what you want in a memory care facility along with a home-like setting which makes the residents feel more comfortable.

Contact APlaceforMom.com to get referrals to memory care facilities. They do a great job, and that's how I found the place for my mother. If you don't want the various facilities calling you endlessly, just tell them she's been placed, and by law they have to stop calling. I didn't have anyone call after I told them that.

Good luck.
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WatsonMaco Dec 29, 2021
THanks! We agree she needs memory care. Unfortunately, it's not so easy to find, and we are concerned about the impact of what will be a traumatic move so soon after the last.
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This happened to my Mum too. We had chosen her IL place (though it was pricy; just because she could age in place) when it was time she went to AL and less than a month later they said to move her to MC. The MC was a nice place but in hindsight I can see the staff were not properly trained for MC and LTC for as people with Dementia age they require more care. They escalated a issue with her (she has hallucinations and rather than letting it pass and giving her time in her room, a number of them tried to overpower her at one time!!!?) sent her off to hospital where she stayed 4 months alone, due to the uncertainty about CoVid at that time, when she returned they requested we pay for a FT aide. Finally we moved her to a LTC - I wish we’d done that from the beginning because these staff know how to take care of her and she might not have gone downhill so quickly.
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What reason do they give for moving her to MC? Can you see her records so that you can see what they are saying are the issues? Is she being violent? Needs too much care? Another patient complained about her? Or they need her room for someone they're related to?? So weird and annoying. If you have an attorney, a letter from them requesting information and time is not a bad idea.
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WatsonMaco Dec 29, 2021
Good questions! I was just up there visiting over the holidays and the aides on her floor love her, describe her as sweet and funny. She's very engaging. Not harmful to herself or others. Our sense is that she needs a bit more care (e.g. someone to escort her back to her room which is just down the hall, someone to help her read the menu because her eye sight isn't great, etc. They are also concerned about safety - if she needs help she will not remember to pull the cord or what to do if there is a fire. We agree with the safety concerns but can bring in care to help alleviate them. The ombudsman also felt the safety concerns didn't warrant forcing a move in such a short amount if time. In the end, mom will be happier with memory care support, in home or at a different facility. We are just baffled, disheartened, and deeply frustrated by this facility's lack of willingness to work with us to ensure a smooth transition to the best situation possible, whether it is their memory care facility or elsewhere. She's just a liability to them, not a person.
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Did you let the AL know you're willing to provide your mom with 24/7 care in her apartment for now in order to ward off this move to Memory Care for the time being? If so and they still won't budge, then look for another AL to take your mom. These ALs have their own rules and are entitled to do that; if they feel she is in need of Memory Care, then their word goes. If the Ombudsman has intervened on your behalf and gotten nowhere, and you call an attorney to stall this process, how will the facility look upon you and your mom? I think you need to consider that your mom NEEDS Memory Care now, with dementia at play, for her own sake. If you disagree to this extent, seek other housing for mom.

Yes, I went through this with my own mother who was refused admittance back to regular AL in 2019 after a stay in the hospital and rehab. Her dementia worsened and she became wheelchair bound so she was no longer AL material but they would take her in MC. If I didn't agree with their assessment, then I could have looked for another AL to accept her with dementia & mobility issues to keep her out of MC. She did fine in MC and she did need it, in reality, as things turned out.

If you have a Morningstar AL in your vicinity, they do accept residents into their regular AL section with more issues and needs than regular ALs in general.

If it were me in your position, I would avoid getting a lawyer involved b/c you still have to deal with these people in the AL and your mother still has to live there. Trying to force their hand with what you want may not turn out to be to your advantage, and that would be my main concern with it. You may want to mention calling a lawyer to see if that sways them, but again, if the Ombudsman wasn't able to change their minds, they must have good reason for wanting your mom to be in MC. Why not talk it over with them and get THEIR reasoning on the matter? And of course reminding them that you're getting 24/7 assistance for her at the same time. And, if your mom is eligible for hospice, that can also be a factor to keeping her in AL vs. MC.

If your mother lost her vision in one eye recently, she maybe DID have a stroke. Have you gotten her to the ER for a CT scan/MRI? I ask you this b/c the ALF my parents lived in insisted on having my dad leave and go into Skilled Nursing when became a 2 person assist. He was declining and I thought maybe HE'D had a stroke b/c he was slumping over to one side. I got him to the ER and an MRI revealed a brain tumor that had grown & was killing him; the doc gave him 3 months to live & recommended hospice. At that point, the AL agreed to keep him until death, with hospice on board, so that's what happened. Just a thought for you to consider with your mom; bringing her to the ER for tests.

BEST OF LUCK to you; I know how horrible all this truly is. Prayers sent on your behalf.
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WatsonMaco Dec 29, 2021
Thank you. All goid points and I will check out Morningstar, but I agree MC is best option.
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Do not be bullied by this place. Hire an attorney and get answers. You are your Mons voice and advocate. Speak up! You are paying for your moms care. I had a similiar situation with my mom and I went along with the facilities recommendations. Even though I didn’t agree , but trusted their”professional opinions”. WRONG! You know what’s best for your parent..remember your mom is just another old person to the staff. They have toomany to deal with. So they really don’t care. They have a basic job to do. My mom went down hill within 2 weeks and passed . It’s my biggest regret. She was a fantastic mom and she didn’t deserve to live her last days so sad .don’t let this happen!
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Reply to Leezab05
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Has your mother been given a formal diagnosis, administered by a geriatric specialist trained in neuropsychology/psychiatry?

What you’re observing may not reflect the actual circumstances surrounding your mother’s placement and care in relation to the behaviors being observed in her care setting, and she made need specific behavioral management techniques and/or small amounts of carefully prescribed medication in order to achieve maximum benefit, no matter what decisions you may want to make on her behalf.

In our situation, the move into Memory Care, which we first resisted, became a major blessing to our LO. Avery well done diagnostic evaluation gave us the confidence we needed to make better decisions for her, based on the realities of a work up done by a gifted and sympathetic psychiatrist.

Tragically your mother may also be suffering the natural effects of aging and dementia AND the presence of changes made to protect residents from COVID.
All the more reason to determine diagnostically what her actual situation is, and what specific problems you need to address.

Try to be as objective and open to more information as you can. She is lucky to benefit from your obvious devotion and eagerness to find a solution that will be the best for her. When you add a thorough diagnostic evaluation, matters may
become clearer and more focused to you.
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WatsonMaco Dec 29, 2021
Thanks for your response! They have a psychiatrist the comes onsite to meet with residents but he is not impressive and only met with her on the 8th day after she moved in while she was still in the midst of the initial transition. I called him early on and he never called me back. My mother met with him 3-4 times a few years ago when she lived in Independent Living and neither of us liked him. He is licensed and appears to be a general practitioner based on online reviews. I agree we need a more sophisticated, specialized assessment and am looking to bring another doctor in. Your note confirms how important this is! Unfortunately we will have to enlist the attorney to buy us time to do so.
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OP, I do think you should get the attorney involved to get answers out of them. What makes her, specifically, at such a risk that she needs to be put into a dark room? Yes you can PO the CCRC. My God, the ones around here cost almost a million to even get into, and then there's the "rent."

She already paid for it. She paid for it to have good care. You and even this ombudsman agree that she's fairly happy and stabilized now, which is what SHE paid for.

Put the pressure on with the attorney. I would also write Yelp reviews and if necessary call the news. These CCRCs all advertise that they are cream of the crop deluxe, so they should act like it.
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WatsonMaco Dec 29, 2021
It's so true! I wouod caution anyone going into a CCRE. We should have made the decision based on tours of what she would need down the road, not on how great the Independent Loving was. We wrongly assumed that since the Independent Facility was so great that the rest of the care facilities woukd be as well.
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Where are you? My husband is in Rogerson House in Jamaica Plain.* It is excellent, only for Alzheimer and dementia patients, run by the non-profit Rogerson Communities. Look into it...You will be impressed with the level of care, the service, the facility, the programs...
*in Boston
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My sister was moved from her apartment into their memory care wing. The apartment is somewhat smaller but still adequate. Same facility, same staff but in a wing that doesn't allow her to walk out the front door and leave the grounds as she tried a few times. I think you should get busy checking out other facilities. It sounds a little odd that based on your short narrative that they would give only 30 days. And why is it a separate facility with "dark" environs? Odd indeed. Look around for other facilities. In the least there is no excuse for not working with you without a full explanation. Has she become combative, unable to use her bathroom/shower? There is a lot we don't know of course, but just based on your limited information, I'd be concerned about their lack of "concern" for elderly care.
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She paid for it and most likely saw the MC before all contracts were signed. I suspect moving her our will have a huge financial consequence.
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WatsonMaco Dec 29, 2021
You are correct...we paid a lot to get into this place 3 years ago and will lose a lot to take her out, but we just can't picture putting her into their particular memory care...it would devastate her. We need to find a better place. It just takes time and this all feels so unnecessarily rushed.
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