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.

 

[Bodhisattva]

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.

My wife and I have started discussing this. Having my mom stay with us is likely not a viable option. My MIL lives with us, and I would not want to subject her to my mom's violent outbursts. Even with 24/7 care, I want my MIL to feel as comfortable in my home as if it is her own. I have no doubt my mom will make this impossible.

My mom also has a propensity to destroy property. When I moved her to Florida a few years ago, I bought a nice house for her west of St. Augustine. The ranch-style with French doors all across the back of the house sits on six acres with a pond. It is the nicest house she ever lived in. I spent a good bit on renovations and fully furnished the house before she moved in. My mom lived there nine months and did a good job destroying the house; she started her attack on day one. She broke every (10) ceiling fan, broke most of the door knobs and new window treatments, broke much of the furniture and dishes, destroyed the screen around the lanai, damaged the brand new flooring, and even managed to damage the water filtration system. Again, she’s become an elderly bratty child throwing a tantrum on the regular. That’s when I moved her to the first assisted living community, spent $30k repairing the house and sold it.

My wife and I have also have family heirlooms and some nice things we have accumulated from our travels that I really don’t want destroyed. Even with 24-hour support, I would never feel at ease in my own home. Moreso, even though my wife would agree to having my mom move in – because that’s the way my wife is – I could never agree to do this to my wife.

Maybe age and the right medication will mellow my mom out. I am working on a backup plan. I have started to talk to one of my brothers – who is single – about having mom stay with him with the 24/7 support if this third assisted living facility eventually tires of her. Oddly, he has not jumped at this opportunity for a roommate.

 

[Nalt]

My wife and I have started discussing this. Having my mom stay with us is likely not a viable option. My MIL lives with us, and I would not want to subject her to my mom's violent outbursts. Even with 24/7 care, I want my MIL to feel as comfortable in my home as if it is her own. I have no doubt my mom will make this impossible.

My mom also has a propensity to destroy property. When I moved her to Florida a few years ago, I bought a nice house for her west of St. Augustine. The ranch-style with French doors all across the back of the house sits on six acres with a pond. It is the nicest house she ever lived in. I spent a good bit on renovations and fully furnished the house before she moved in. My mom lived there nine months and did a good job destroying the house; she started her attack on day one. She broke every (10) ceiling fan, broke most of the door knobs and new window treatments, broke much of the furniture and dishes, and even managed to damage the water filtration system. Again, she’s become an elderly bratty child throwing a tantrum. That’s when I moved her to the first assisted living community, spent $30k repairing the house and sold it.

My wife and I have also have family heirlooms and some nice things we have accumulated from our travels that I really don’t want destroyed. Even with 24-hour support, I would never feel at ease in my own home. Moreso, even though my wife would agree to having my mom move in – because that’s the way my wife is – I could never agree to do this to my wife.

Maybe age and the right medication will mellow my mom out. I am working on a backup plan. I have started to talk to one of my brothers – who is single – about having mom stay with him with the 24/7 support if this third assisted living facility eventually tires of her. Oddly, he has not jumped at this opportunity for a roommate.

Wow! You guys really are in a tough spot. While one cannot question your love for mom, you also have to look out for what's best for your immediate family too and you seem to be doing that very well too.

I suppose another option might be putting her in a nursing home but with her violent history they would likely restrain her and that would probably go over like a lead balloon. I really am sorry for you guys. Prayers for the best solution for all.

 

[Crimson1967]

Has she always had violent tendencies or a bizarre personality disorder? I hate this for you as I understand you not wanting to have her move in, especially with your MIL there.

I am 57 and my wife died recently. My son is currently single (lives with girlfriend) and lives over three hours away. He wants me to move close once he is married and has kids. He has indicated he might be willing to move me into a FIL suite or a nice home once I get to a certain age.

He is an only child and I hate the idea of being a burden on him one day. I hope I either just drop dead one day or get diagnosed with something that kills me in a year. That way I can shut things down, sell everything, etc. I just don’t want to get Alzheimer’s and be a vegetable for years.

 

[Bodhisattva]

Has she always had violent tendencies or a bizarre personality disorder? I hate this for you as I understand you not wanting to have her move in, especially with your MIL there.

No, not violent. But my mom has always tended to show both extreme sides of a personality trait at the same time. She's never really cared for people, but she would go out of her way to treat her rental properties like a charity - always renting to people who had no ability (or intention) of paying the rent. She is not a religious person (actually hostile to religion), but her opinions might as well be biblically sanctioned. Such that if you disagree with her, your error is a moral failing. Those are just two of an endless list of examples. She's a ridiculous contradiction in the extreme. I wouldn't have anything to do with her if she wasn't my mom. But she is, and I talked to her daily for decades while she was still residing the free world. The conversation would almost always follow the same theme:

Mom: This person (usually a tenant) is mistreating me.
Bodhi: What are they doing?
Mom: Not paying the rent
Bodhi: Well, you rented to people who have no job, have terrible credit, and are druggies. What did you expect?
Mom: I didn't know that when I rented to them.
Bodhi: That's why you do background checks.
Mom: I don't have time to do that, and background checks cost money.
Bodhi: (Sigh) Not that much. And it's just a smart thing to do. And anyway, the prospective tenant pays.
Mom: Well, they can't afford that.
Bodhi: Then why rent to people who don't have money? And why do you insist on being your own manager? You have more than two dozen properties that are paid off. Hire a property manager and go travel the world.
Mom: I don't want to pay the 10% management fee.
Bodhi: Think of it as keeping 90% of hundreds of thousands of dollars in rent and having to do 0% of the work. It's a very good deal. The way you're doing it is you are doing 100% of the work (and doing an extremely poor job of it) and making 100% of nothing.
Mom: You don't understand this business. (hangs up on me)

She just likes being the victim, so she sets things up for her to always be the victim. Whether it be fights with tenants or her neighborhood HOA or any interaction with other people. Totally self-inflicted. Pointless and stupid. Exhausting to listen to.

She's obviously had some mental issues for a long time, but she'd never go talk anyone about it. Her core personality traits of Stubbornness and Selfishness have their dials turned up to 11. Can't suggest or tell her anything. I was very lucky to finally - after over a decade of trying - get her to create a will and later to give me power of attorney. She destroyed most of her estate over that time, but at least I got to salvage some of it so it can help pay her current expenses. It is only a fraction of what it once was, unfortunately, and I have to go out of pocket every month.

I am 57 and my wife died recently. My son is currently single (lives with girlfriend) and lives over three hours away. He wants me to move close once he is married and has kids. He has indicated he might be willing to move me into a FIL suite or a nice home once I get to a certain age.

He is an only child and I hate the idea of being a burden on him one day. I hope I either just drop dead one day or get diagnosed with something that kills me in a year. That way I can shut things down, sell everything, etc. I just don’t want to get Alzheimer’s and be a vegetable for years.

I'm sorry about your wife. That has to be tough. I hope you can find comfort in her memory and have decades of good health left.

And I can empathize with how you are feeling about end-of-life decisions. I will not be a burden on my daughter. My job in this life is to set her up for success, enjoy my retirement, and then check out before I am reduced to just pointlessly existing and consuming resources.