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.
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.
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.
In spite of several geriatric psych hospitalizations, the meds would work for awhile, but then back to square one.
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...
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.
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.
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.
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?
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.
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....
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
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.