Question about a parent with dementia

[Bodhisattva]

So, I've mentioned before that my mom has dementia and is in an assisted living community. I'll be moving her to a now place this weekend. Her behavior has become progressively worse recently. Her core personality trait of being pointlessly stubborn has intensified - won't willingly take her meds or shower or eat a meal at the appointed time. She's basically become a bratty, contrarian toddler who's pushing 80. And why am I moving her to a new place? Because she's been effectively evicted from her current community. Mom has also become violent. What was once an occasional slap of another resident has now become an every-week-or-two episode of punching and biting, not just of other residents but of the staff. She also tries to steal any dogs the staff brings in for the residents to enjoy. They've had enough her. Understandable.

My question is as the dementia progresses, will she start to mellow out? I don't want to keep finding her a new place to live every year or two. (This new place will be her third.) These communities are a money pit. This month is overlapping rent and neither place will pro-rate. And every new place requires a "community fee" - a $3000 entry fee that is not a deposit and is separate from the rent. So, this month will cost me over $10k. I'm praying she mellows out, stops acting like a violent brat, and can actually enjoy and appreciate all the personalized care she is being given.

 

[Tidewater]

I'm really sorry to hear that.
I am not so sure that as dementia advances the patient mellows. Maybe, but maybe not.

Doctors have figured out how to make people live longer, but not how to keep an old person's brain working normally. Speaking from experience.

 

[Tidewater]

My father-in-law passed away two years ago.
At the end, he was like a child. His level of understanding was that of a four year old. All we could do was be there for him, make him as comfortable as possible, and comfort him.
He never got disruptive or angry, though, so that was a blessing.

 

[Bazza]

Tough situation, Bodhi - sorry to hear. I really don't know enough to answer your question. Nor do I have any advice on what to do to help.

My Mom was in assisted living for about a year and a half and there were a few episodes of conflict with others there - both residents and staff. A lot of this falls under the responsibility of the staff to handle things. Many of them understand it goes with the territory - but absolutely there is a limit to what can be allowed, which is obviously where you are with Mom.

Not sure how much good it did but I would actually type out a short letter to my Mom and bring it with me when I visited here - for her to read and retain. In it I would try to explain how important it is to try and get the most out of the place she is at. And that everyone is trying to help her. Etc etc.

Maybe things will be better at the new place - will be praying for you and Mom - good luck brother!

 

[Padreruf]

So, I've mentioned before that my mom has dementia and is in an assisted living community. I'll be moving her to a now place this weekend. Her behavior has become progressively worse recently. Her core personality trait of being pointlessly stubborn has intensified - won't willingly take her meds or shower or eat a meal at the appointed time. She's basically become a bratty, contrarian toddler who's pushing 80. And why am I moving her to a new place? Because she's been effectively evicted from her current community. Mom has also become violent. What was once an occasional slap of another resident has now become an every-week-or-two episode of punching and biting, not just of other residents but of the staff. She also tries to steal any dogs the staff brings in for the residents to enjoy. They've had enough her. Understandable.

My question is as the dementia progresses, will she start to mellow out? I don't want to keep finding her a new place to live every year or two. (This new place will be her third.) These communities are a money pit. This month is overlapping rent and neither place will pro-rate. And every new place requires a "community fee" - a $3000 entry fee that is not a deposit and is separate from the rent. So, this month will cost me over $10k. I'm praying she mellows out, stops acting like a violent brat, and can actually enjoy and appreciate all the personalized care she is being given.

Some do mellow...mostly from physical weakness. You could have a conversation with her internist about some medication to mellow her out. It could hasten her demise, but that's not all bad. My father was on Haldol for at least 4 years and in the end it was what took his life, not the Lewy body dementia, the Parkinson's, or Alzheimer's disease. My physician sister had cooperated with his physicians in this and we all (5 siblings) concurred. We could have taken him off the Haldol but he would have had to be restrained, and this WWII veteran would want none of that.

Sometimes there are no good decisions, only less bad ones.

 

[Bodhisattva]

Tough situation, Bodhi - sorry to hear. I really don't know enough to answer your question. Nor do I have any advice on what to do to help.

My Mom was in assisted living for about a year and a half and there were a few episodes of conflict with others there - both residents and staff. A lot of this falls under the responsibility of the staff to handle things. Many of them understand it goes with the territory - but absolutely there is a limit to what can be allowed, which is obviously where you are with Mom.

Not sure how much good it did but I would actually type out a short letter to my Mom and bring it with me when I visited here - for her to read and retain. In it I would try to explain how important it is to try and get the most out of the place she is at. And that everyone is trying to help her. Etc etc.

Maybe things will be better at the new place - will be praying for you and Mom - good luck brother!

Tried that - many times - and it didn't take. I posted a summary bullet point letter in several places around her room, explaining where she was, why she was there, about the staff who were there to help her, why it's important to take her medications, and that I would see her every Saturday morning. She tore down and threw away the posted letters every time. She will not do anything anyone else suggests, even if it is 100% to her best interests. She has devolved to her core personality on steroids.

I hope you're right about the new place. Maybe it will have better results with medications and activities that will get her to behave like a somewhat normal adult. Or maybe she will just keep devolving and I'll be looking for another place for her within the year.

 

[alabama mike1]

I am so sorry. Hopefully you can find someone that can answer your question. Praying for wisdom and guidance.

 

[crimsonaudio]

I don't have any experience that can be helpful, Bodhi, but just wanted to say I'm really sorry you're dealing with this. Between the expenses (and associated frustrations) and seeing your mom like this it's got to be really tough. Praying for you guys.

 

[Nalt]

First, I am VERY sorry for you and your family. Speaking from current experience, that is a tough life to live for the patient and family.

Secondly, though I am not a doctor, this sounds like vascular dementia. A person who is typically the nicest, most caring individual who would never utter a cross word can become very angry, uncooperative, and very foul mouth. Dementia progresses naturally. IMO, your mom will never get better, only worse.

I also understand the extremely high costs associated with caring for our parents. My dad was living with his second wife in an assisted living facility. She had a stroke and soon after began showing signs of vascular dementia. They had a lot of verbal fights and occasionally she would go physical. It got to the point that for his safety, we (my brothers and I) made the decision to remove him from their home. This infuriated her and he wasn't too happy about it either initially but came to grips with it eventually. She passed away early Spring 2024. Dad never shed a tear for her like he did when my mother, his first wife of 53 years, passed.

Dad, now 91, has a different form of dementia and over the last few months it has began progressing rapidly. He is very confused and always seems to want to go back home. He now lives with my 2nd oldest brother who is retired. Last Sunday afternoon, while my brother was at church service, my SIL went upstairs for maybe 10 minutes and Dad apparently thought it was time to go home so he went outside and got in her car. She came downstairs and couldn't find him so she then went out and found him in the car. Fortunately she was able to convince him to go back inside the house. Then on Tuesday my brother got a call from the fall detection monitor people saying that his signal was indicating he had fallen. He found Dad laying outside in the grass flat of his back with his walker lying beside him. Fortunately, the recent rains had made the ground a bit softer than normal and he wasn't injured.
The Hospice nurse is telling us that Dad is transitioning to the next stage. He has also started having TIA strokes, maybe half a dozen that we know of in the last couple of weeks. The nurse thinks that this is leading him to something much bigger.

I pray for all of God's blessings on your mother and your family.

 

[Nalt]

One more comment for you to consider. To help with the cost of caring for your mother, maybe consider bringing her to your home to live if that is possible. You can hire caregivers to come and stay with her around the clock. Hospice can give you some names of people who do this sort of thing for a living then it is up to you to interview and hire the right individuals. If you need 24 hour support, consider hiring anywhere from 4-6 people to coordinate her care. The cost of doing this would be much, MUCH cheaper than either an assisted living facility or nursing home. We did this with/for Dad. Initially he was upset about it but has come to appreciate it.