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Hi everyone,
I'm hoping someone can offer some advice, as I'm not sure where else to turn. My mother (age 67) has been suffering from Wernicke-Korsakoff dementia / wet brain for the last 5-6 years. After a very difficult period of growing delusions, paranoia and confusion, we moved her to Assisted Living in early September. Almost immediately, she was upgraded to Memory Care and moved into a shared room.


Since moving to this facility, her mental condition has sharply deteriorated. She has had several violent episodes of throwing furniture and yelling/cursing at staff. Her confusion is so bad, she doesn't even know she has a roommate. She has had approx. 4-5 UTIs since moving there--something she NEVER had when she was living at home. These violent outbursts have triggered multiple emergency hospital visits, and twice now she has been involuntarily committed to the geriatric psychiatric unit at the local hospital for stays of over two weeks.


The last time she became aggressive, a police report was filed. Me and my family members are at a loss for what needs to happen moving forward. We don't feel like the facility is meeting her needs, but we're not sure what our other options are; at the same time, we're worried she's in serious risk of being kicked out, and we have no back-up plan.


I should also mention that my mother is a VERY difficult person with mental health issues underlying the dementia (including depression, anxiety and suspected Borderline Personality Disorder). I am her only child and we are estranged, but was appointed her POA back in 2015. No other family member is able or willing to care for her, so she needs to be in a facility.


But WHERE? Her physical health is good and she doesn't need skilled nursing. The geriatric psych unit has not recommended that she live in a psychiatric facility. So what are my options here? She has some money to private pay for 12-18 months, but will need to transition to Medicaid when the funds run out.


If anyone has had experience with this, I would be so grateful if you shared your stories or advice. This is such a cruel and hopeless situation. We really thought that moving my mom to AL would solve so many things, but it has been a complete nightmare.

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I'm surprised that they are not medicating her to alleviate the violent outbursts.

Is the place she is in a medicaid facility? Seems like if they did the better with her meds, she would be more manageable and perhaps even a bit happier.
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straycat912 Dec 2019
The place she is in now accepts medicaid after a period of private pay. It was one of the only places we could find where she'd actually be able to stay once she ran out of funds (and yet now we want her out of there!).

The med mismanagement is definitely a huge problem. The facility's resident doctor initially put her on an anti-depressant and anti-anxiety regimen when she first moved in; then, the geriatric psych unit put her on a totally new regimen after observing her for 2+ weeks. THEN, the AL's resident doctor changed her meds up *again* for reasons that are unknown to us. Now she's back in geriatric psych, and I have no idea what's going to happen. It seems that no matter what, there is eventually some sort of backslide that leads to another change in meds.

The most frustrating part here is that it's impossible to tell what's the dementia, what's her mental illness, what's the medication and what's the UTIs. And no one seems to have an answer. What's worse is that her dementia is really rare and I think manifests a little different from Alzheimer's. The AL/MC facility seems to be doing nothing to prevent her UTIs, either.
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My mom was kicked out of memory care. She was also very agitated. She was on hospice at the time. They recommended a much smaller care home where all residents had been kicked out of memory care. The caregiver resident ratio was about 1:4, much lower than memory care. That situation worked out better for mom as there was more individualized attention and care. And the care home was lower cost than memory care.

In spite of several geriatric psych hospitalizations, the meds would work for awhile, but then back to square one.
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straycat912 Dec 2019
Thank you for this. Someone at the psych unit had mentioned smaller care homes in passing, but it sounds like maybe I need to look into local homes in the area.

We seem to be having the same issue with meds. There was a period of hope for a while after the first psych stay, but she very quickly relapsed. Because I know how difficult she can be (even when she didn't have dementia!), I have little to no hope that a med regimen will ever totally stabilize her...
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Goodness, I thought I was reading about my own mother for much of your post. I think the violence was the biggest shock to us. Our instructions to the staff are to look out for themselves first when she has these outbursts, which range from simply throwing things to biting, kicking, spitting and so forth and, of late, pushing furniture over.
I am wondering if your mother has delerium associated with the UTIs. The symptoms can often mimic dementia behaviour and, I am sorry to say, last days, weeks, even months. Happens to my mother. Recovers from one bout then far too soon into another one.
There has been talk of putting my mother into a behaviour unit for one on one observation and treatment, however geriatric psych review found nothing unusual...apart from the dementia. It is as if she knows when, and when not, to behave. So we live with the same concern about where to next if she becomes too disruptive. We have had a family conference with her aged care facility, because she can afford to pay for the rest of her life there, she has security of tenure.
I live in a different country to you so I do not know how your system works, so I cannot offer advice. I just want you to know you are not alone with your fears and concerns over a violent parent and what the future holds for care arrangements.
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gladimhere Dec 2019
My mom did have funds to pay for her memory care for probably 8-10 years. In the end, they wanted and tried to keep her, but she was a danger to herself and others so was kicked out. Safety for all has to be the first priority.
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This is my situation as well. Mom in respite care while I got surgery until end of Dec. She is so combative they requested I hire 1 on 1 aide at $19/hr. That is addition to $8600 she is paying monthly. I want them to refer her to geriatric psych so she can get correct meds. They call my daily regarding her aggression but dont seem to want to refer to psych. I dont know where to turn either. She cant come back home so I feel separate to find a solution for her
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I have been through all of this recently with my father with Alzheimers. He was kicked out of two facilities for aggression and has spent many weeks over the last four months in Geri-psych unit. He was faced with being placed in a state facility here in North Carolina as no one would take him due to his history. I went and visited the state hospital that had a floor
designated specifically for aggressive Alzheimers patients. I did not feel that it was right for my dad and I knew things had to change quick in my efforts to help him. We dealt with medication errors etc that I felt triggered his outbursts. It was just a nightmare all around. As a last effort I began to look for a private care home at the recommendation of a coworker that had been through the same thing with her father in law. It is private pay indefinitely...does it scare me..yes it does but I’m trying not to look that far in advance and I know that right this moment it is the only option for my dad to be properly cared for. For the first time in 4 1/2 months my dad is doing good. I just hope he will continue to do well as this is such an unpredictable disease. They added Seroquel and Divalox to his regimen and it has helped him tremendously. I know some people frown upon the use of these meds but in my dads case seeing him in a pleasant frame of mind rather than off the hook is so much better for him and the entire family.
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Hi, all - I’ve been on this site for 6+ years and almost every day I see a topic that resonates big-time. Thank you for posting, I am in THE SAME place, today! And guess what, our MC sent Mom yesterday to one of our three hospitals in the area with a behavioral/psych unit - even though they have no eval beds available, she’s in the ER. The crisis services gal is looking for a bed with no good hope of finding one locally. She said to be prepared for going to one six hours away. I live on the eastern seaboard for crying out loud (in the capital of VA).
All I keep thinking, and told the services gal, is we have a really big population without the right solution. Our MC also seemed reluctant to try adding a new med.
Please, no one take this the wrong way - you can consider not treating the UTIs and let her pass of infection. A friend who’s a hospice nurse pointed out how often we treat this in people with no quality of life. Don’t take my words as anything, just an idea for you to explore. The OP’s mom is only 67, mine is 87, and I certainly couldn’t comment on this stranger’s quality of life.
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EverHopeful1 Dec 2019
I live in Southeast Virginia also and have been appalled at the lack of resources for people with dementia who are combative. The state has not prioritized beds for combative dementia patients and those that exist are few and far between.
I’d love to find an organization that advocates for this underserved/ignored population. Although the Alzheimer’s Association has been extremely helpful in many other situations affecting those with dementia, in Coastal Virginia they seem oblivious. Does anyone know of a group advocating for combative people who have dementia?
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Seems your mom needs some medications to help calm her agitation, It appears she has a very low threshold for frustration and/or confusion. That is probably why she lashes out when she is frustrated or scared or feels the need to control. Anti-anxiety medications may help. She may also need something on the order of a tranquilizer to calm her and kick a little wind out of her sails.

Consistency in her routines will also be important and the facility is already providing that. It may take time to be able to target what are trigger events or stimuli that lead to violence. Avoiding those triggers would also be helpful.

If she is at risk of harming others, she may need to be moved to a residential psychiatric facility - and there are not many of those.
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I went through this w/my mother during the long, very difficult saga of her difficult aging process. She did not have dementia, but was mean and definitely borderline personality disorder (both long-term issues with her) and had been asked to leave several care facilities. When this happened the third time I was in exactly the same situation - there was no place else that would accept her, nor were there any psych units available in her area.

The only option left was medication, which is a very difficult decision b/c medicating the elderly to control their behavior is generally considered a bad thing. I met w/several professionals and finally came to the realization that anything that could ease whatever it was that prompted her difficult behavior was a good thing. Thankfully, the facility was willing to work w/me and give medication a chance; otherwise, I'm not sure what I would've done. However, she died before we got all this in place, so I can't speak to how well it might've worked.

Medication might be an option worth exploring, and since you are her POA, if you do decide to try this, you won't have to convince her to take the meds, which is a plus.

I know it's very hard, and in reality, there are no great options for this situation. All you can do is what, in your best judgement, you feel is the best thing to do.

Best wishes....
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Have her see a neurologist who will prescribe Seroquel. This will calm her violent & agitation. You’re correct that ALF or memory care cannot meet her needs ...she will need to be transferred to SNF first ....a trip to ER & meet with Social Worker. ...they will help in placing her. Hugs 🤗
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When my friend, Beth, became uncooperative in her memory care apartment--not letting staff clean her after soiling herself--the head nurse told me to take her to a geri-psych ward at a hospital to find a drug that would calm her down without doping her up. I phoned 3 hospitals before finding one with an opening. When I took Beth and her husband there, I was wondering how they would get them apart because Beth always looked for her husband when she wasn't with him. When it was time to go upstairs to the ward, a bunch of staff members came into the waiting room to talk with Beth and distract her so her husband and I could leave. It took them 3 1/2 weeks to find the right drug, dosage and timing, but she was an alert, cooperative person afterwards until she passed from her dementia. I didn't know such places even existed until the memory care nurse told me about them. I needed the guidance because all this type of care was new to me. The geri-psych ward and their expertise was just what I needed for Beth. I hope such is available to you, too, with equally good results.
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Is she taking vitamin B1 - Thiamine for her disease? The internet lists a lot about this disease. Thiamine deficiency is one symptom.
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If mom was doing better with the meds prescribed by Geri psych, then you need to know why house dr changed them especially if she is backsliding

UTIs will continue if mom is uncooperative with staff - it is not a cure all but have liquid cystex added to her daily med - it is OTC but a facility will likely need a dr scrip to give

I worked very hard to not have my mom taken out on psych hold when she escaped her private pay memory care - I do not use the facility dr but take her out to PCP and neuro - we started with seroquel which didn't work and then switched to risperdal which was tapered off over 2 years

she is no longer mobile and can still pinch during diaper changes

small care homes are an option for some but remember there are no nurses on staff - you may be able to find a visiting nurse or doctor who will go for a retainer (concierge) fee

some I've seen do not have ADA bathrooms - no walk in shower to roll an immobile resident in and no hoyer lift to transfer - some have a weight limit as they only manually transfer

not all memory care is the same - some will not dispense antipsychotic meds or allow any disruptive behavior

mom's facility used to be nearly a psych ward as it seemed to take anyone if they could pay - management changed and with it cost cutting so they want mobile early stage only now

dementia is a nightmare
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WOW -- I feel your pain. I would love to speak with you as I am currently going through the exact issue with my mom. They sound just alike. We just had her sent from a psyc hospital to a memory care center on Jan 2nd and we are not sure if she will end up staying there because she is so "DIFFICULT" that she could get released. I need to look up the dimensia umbrella you classified for your mom as that sounds more like my mother as well. I am not sure your current situation with her as of now, but I was wondering if you had guardianship of her? I do not have guardianship of my mother and we were "warned" against that with "HER" because not everyone is a good candidate to do that with. Would love to talk to you some more because I "definintely feel your pain and relate" I have been the only child taking care of her as well for the last 2 years and I AM EXHAUSTED and work full-time as well. Please feel free to message me or email me at carmen_young@baylor.edu and share your number. Maybe we can talk and see if we can support each other. Sincerely, feeling your pain, Carmen
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straycat I know exactly what you are going through. My husband and I are going through the same thing with his brother.

These Memory Care Units are supposed to be trained and knowledgeable on how to deal with patients with these behavior issues. That is exactly why it is also called, Special Care Unit.

Just because a resident is having "bad behaviors" does not give the facility the right to evict someone. That is what they are supposed to be qualified to handle. It is illegal to evict someone because they are difficult.

If the resident is endangering themselves or other residents, that is went they have to be sent out for evaluation. The doctors will have to evaluate them and make adjustments to meds. Once they are stable, they are free to go back to their facility.
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