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!
in memory care for two and 1/2 years. When she started sundowning, refusing care and food the nursing director and facility director cornered me with we can’t meet her needs. I requested her doctor assess her needs as far as medication and asked if she would qualify for hospice. She started daily Serequel, Ativan as needed, and hospice. That bought her time for
three months until she fell and fractured her hip. Memory care is really lock down assisted IMHO they have strict guidelines on what they will and won’t do.
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.
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.
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.
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.
*in Boston
If she is socializing, transferring, ambulating, eating, and needs little assistance getting ready then that’s what qualifies AL, many residents in an Al environment have memory loss and as long as they are safe and functioning appropriately then they are fine.
Seems to me if you are willing to provide 24hr care in the current apartment, the facility would be spending even less time on her care. Would be a win win for them. I would keep talking that up to see if they will extend a 'trial' period.
I was in LTC administration for over 10 years and am a certified Assisted Living Administrator. I don't usually take this route but this facility's actions seem a bit shaky. Glad the Ombudsman is involved but they are only advocates for residents; generally it's the state that calls the shots, hands out deficiencies and when necessary can close a facility to new admissions. Time to call your State Dept of Health and speak with the group that oversees CCRC's - make sure you have written everything that has occurred and been said to you by the CCRC (include the names of the folks that want Mom to move); let them know about the sudden lose of vision in one of Mom's eyes and the demand that she vacate the location she has just moved into. Tell them you are totally confused by it all. At the same time, get in touch with a certified Eldercare Attorney and lay this out for him in case it needs to get "legal"which you might have to do if you need to get a refund of any entrance fees paid to the facility.
Finally, unless someone can come up with a great explanation of all of the above, I would suggest you begin researching other CCRCs that may be available. Usually, I recommend CCRC's to people who can afford them for all the reasons you have mentioned but in every barrel of great apples there is a bad one... sometimes ... they have a worm. Sometimes, if the CCRC is one of the newer for profit entities........... the worm is voracious.... more like a striking cobra! Don't be bullied into submission.
Good luck and please keep us updated. This is outrageous.
I say…if u have the resources and the help try to keep out of facility or find another facility with an upbeat vibe if their MC.