Hello All,

Has anyone struggled with where a loved one should be placed...and if you've made the wrong decision about placement? My mother was in a memory care facility for 5.5 months, then had an emergency that took her to the hospital where she almost "met her Maker." While she was in the hospital, the docs reduced one of her meds and took her off the other one altogether -- they thought she was over medicated. It was decided that she should probably go to a long term nursing facility and she should be under hospice care. This is what happened.

Now, two months later, she is doing so well hospice didn't admit her to their care. She walks with her walker, and by herself in her room; she is no longer incontinent and she can (mostly) go to the bathroom by herself. Without the drugs, she's back to who she was 2 years ago, physically; however, she still has dementia and her paranoia and nastiness is creeping back in. Last week I was amazed at how well she was doing. While at any time, anything can happen to her health-wise, I feel like I may have made the wrong decision about placing her in this long term care facility.

Does anyone have any suggestions? Placing her in both facilities has been emotionally exhausting -- the thought of doing it again -- wow!

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You can move her back to Memory Care where she was previously.
You can keep her where she is now.
The question is where is SHE comfortable and where is SHE doing well. If she is getting a bit more supervision where she is now is it possible that that is why she is doing a bit better?
The Dementia will not improve it will get worse. So she will continue to need close supervision, she will "forget" to use the walker. This will happen no matter where she is. And I would almost bet she will fall. (that will necessitate a hospitalization and the decision to operate or not..more on that in a moment) then back to where she is right now.
If surgery is an option keep in mind she will probably not cooperate for rehab so with or without surgery she will be bed or chair bound.
Do you have a D.N.R. or better yet a P.O.L.ST.. P.O.L.S.T. is more detailed than a D.N.R. it lists what treatments you want or do not want and if you want them for what duration.
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loreo51 Sep 2018
This is excellent advice.
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I’m assuming that she’s in a NH and is/was on hospice as an additional benefit.
Going off hospice is not unusual, they get re-evaluated every 2 -3 months as required by Medicare. And if something happens, like a TIA, she can go back onto hospice again. My mom was on hospice 18 long long months and twice I was told she was improving enough (even though she was bedfast!) that at her next hospice review she might go off. Both times she had a TIA days before the re-evaluation so stayed on hospice. Personally I wouldn’t fret about no hospice.

But I’d be more concerned that she otherwise meets criteria for being “at need” for skilled nursing. The NH should be doing care plan meetings every 90 days routinely. However you can request one sooner. Ask the DON office as to how to set this up. DON (director of nursing) really is the power center for a NH. If your mom is a good fit for this NH, they know how she rolls & she know their system, I’ve found a better NH will do whatever to keep them as a resident. Realize that she is going to age and get more & more “at need”. NH are going to have a mix of residents.... some kinda good on their ADLs but mentally in another solar system; others totally bedfast on a vent but totally lucid. I bet your mom’s needs will be within what’s needed for skilled nursing care & that’s what’s important if Medicaid and Medicare is paying. The care plan meeting can go over all this for you.

At the CPM, there will be folks from all departments, nursing, dietary, social work and activities. That’s why they need to be scheduled. Often you find out stuff that you had no idea about. Like my mom wanted sandwiches for lunch. So it got added to her chart and done like 3 times a week as dietary could make that work for their system. CPM last maybe 15-30 minutes. I took snacks (mini muffins, clementines) and once that was a known, everybody came to mom’s CPMs and for a full 30 minutes plus. Take extras to DONs office.
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AT1234 Sep 2018
I have more questions for you! we have just been thru this with my mom 83y/o. After a fall, she was sent rehab the MC unit was attached and that’s what was recommended for my mom. She would have none of it with in 24 hr we had a 48 notice to leave. We found AL that would take her, she was off morphine and hydrocodone by now so her faculties and paranoia was back in high form. I did not know she was developing an escape plan even there. I am her POA and to my face she was in total agreement (see has dementia with ct scans that look like FTD) long story short you see where this is going. Within 2 weeks she’d called a mover and had her things moved home. She’s was supposed to have medication management and 24/7 supervision. She fired me as her caregiver slandered me to everyone that would listen. she hired a lady to come 3-4 hours a day and from what I get she’s driving her around. Prob does some light housekeeping. Her meds are Narcotics and she was very upset when I offered to put them in boxes.

Im at a loss do I stay away? Without guardenship legally can’t do anything anyway, but my question is really my moral obligation to her?
Here’s the deal..we’re all different in what we can and can’t handle. No one on this site should be shamed for not keeping a parent at home. Believe it or not, they often thrive in a place where there are people and activities. And not everyone had a parent who cared well or adequately for them, or else the person who posted this is in la-la land.
So having made my feelings on this type of "shaming" known I’ll proceed.
Someone else asked if your mother likes it there. Has she made any friends, does she complain about living there. You don’t say if she’s Medicaid or private pay.
In my experience, in my dad's 4 moves, each one was hard on him and took months for him to acclimate and accept. That may be something to consider in making a move. If your mom is Medicaid, then they don’t pay for AL. If she’s private pay, then AL will save her money.
You do need a care conference to determine what her status is. That will help with understanding her true needs.
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I would just like to add to igloo572’s excellent advice that if you are planning to move mom to another facility, make sure you have the option of Memory Care there if she needs it. That way, you won’t need to move her to a different facility again. My mom and I were lucky. Her Memory Care was attached to the regular floor and she was so well-liked that some of the staff would go to visit her. In her mind, they were all actors and actresses who were on stage with her when she was a famous actress in New York City (😉) but it was nice of them to visit her and made her feel more comfortable.
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Hi ArtMom58,

Just a plain simple response to your point; "I feel like I may have made the wrong decision about placing her in this long term care facility." Most likely you made the right choice. My thought is that you are dealing with the guilt that creeps in naturally as we all ask, "Did I make the right choice?"

Secondly, you mentioned your mother returned 'to who she was 2 years ago physically', which probably has you second-guessing your decision. Naturally we want to believe our parent will 'get better' so psychologically you were perhaps hoping deep down in your heart that your mothers health will improve rather than decline, and that she should be in a place that's potentially going to be better for her. However, as you know with dementia it's not going to get better, and from my personal experience I can tell you that since she's already at the paranoa stage - you most-likely made the right decision as that paranoia will only grow worse too.

Bless you for all you have done to care and love her!
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I could have written this, my situation as well except my mom has no balance and falls all the time so they recommended a long-term for her as well. We move her on Monday. You are in my thoughts and prayers that both of us have made the best decision for our loved ones. But the reality is we won't know if she will like the place or if the facility delivers their promises of excellent care until they actually move in. I notice my mom is most nasty when she is frustrated and stressed. Her dementia increases and at that time she needs to be calmed down and destressed. Hopefully her new caregivers are trained in this...I will at least talk to them about the importance of this even though I think a lot of the residents fall into this category. If she is in assisted living though if she is doing this much better I would see if she can stay there for now. Good luck and I know you are doing your best. Hugs!
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First, your mother is blessed to have a caring advocate. Especially when our loved ones are placed in memory facilities, we need to keep on top of all drugs they are being given. The problem I experienced with memory care facilities is that they do tend to over-medicate and that sometimes causes even worse behavior issues. They frequently use drugs like Seroquil to "calm" the patient but don't always pay attention to that drug's interaction with others. If you have a Medical DPOA, make sure any facility informs you of any/all drugs they administer. Don't depend on facility doctors to always do the right thing. Know what they're prescribiing, why, and what interactions the drug might have.

Is there the option to care for her in your home? If so, there are services that can help you with daily care. (probably at a lower cost than a facility also). We ended up doing that with my mom - once we got settled in at home, it was actually less stressful on us as well. We were lucky to have doctors that made home visits and caregivers that helped with other caregiving needs. Some states have IHSS (In Home Support Services) which can also help you. Check your state's Dept on Aging. Dementia care needs change as the patient inevitably declines, but these services should be able to help in the transitions as well.

If "in home" is not an option, I would visit several facilities, unannounced and at different times of day to see their facility "in action". Find one that meets your mother's current needs and one that looks like it could properly transition with her. Ask LOTS of questions like how many patients per caergiver, who is their facility doctor of record, where are patients taken in case of emergency, what are visiting rules, etc. You might also try to speak with visiting family members of other patients to get their "real time" review. You probably won't get all the answers you need, but it will provide decent incite. I hope this helps. God bless you on your journey with your loved one.
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If she is mobile, then she can qualify for memory care facility within an ALF...some take Medicaid. My mother can’t walk at all (dementia) so they won’t take her & wait till she starts hitting, cursing & throwing things & they probably would put her to the curb w the recyclables. I’m (daughter) the only one who takes all her crazy crap & still puts her to bed every addition to setting my alarm to change her diaper in the middle of the night....Whatever you do, don’t make the mistake of taking her only gets worse. Hugs 🤗 to you & good luck
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Grandma1954 makes some good points, imo. Her dementia symptoms may fluctuate, but, her progression with the dementia will continue. She will need increased amounts of assistance and supervision as she progresses.

I might first consider if she is paying privately or through Medicaid. It may impact the options, but, I would explore Memory Care if possible.(f she qualifies, some states have financial assistance for those who are eligible, like if they are disabled or have dementia. It really made a big difference in my LO's life. She was much happier there than in a regular AL. And they was not equipped to meet her needs and dealing with other residents whose memory was not as impacted as hers, seemed to make her uncomfortable and anxious.

You can have an assessment done to see what level of care she needs, but, keep in mind that she will eventually not be able to use the walker, nor recall when to eat, how to toilet herself, etc. Have you visited the various places to see what they offer?
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Wow...unless I missed something, your mom sounds highly organized and capable. I experienced a large skilled nursing home/rehab "over-diagnose" my
sister's deficits to keep her as a patient after 21 days. By my standards, this was medical mal-practice. My sister returned to AL and continues to very well. Why
would your mom need a memory care unit, which is locked?
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