Questions for MIL’s neurologist

[MissMolly]

Not the hitting and kicking and name calling, but Mom was a force of nature. She had an overpowering personality and had always been very abrasive her entire life. Her sisters had severed all relationship with her years before all this. Her "friends" dropped her like a hot potato after Dad died, so it was apparent the only reasons those relationships existed was due to my Dad. My dad was very kind and soft spoken.

From my earliest memory I always thought she had a screw loose and that sentiment is shared by my 6 siblings. She always sought and demanded attention. At a family get-together she felt she wasn't getting enough attention so she climbed on a picnic table and began yelling (she was 78 at the time). At another family dinner she didn't like something someone said and spun a china plate across the room like Frisbee. It missed my sister-in-law but it hit a window breaking both the plate and the window. Just over-the-top stuff like this. She was always an extremely difficult person to be around.

So yes and no, but she had been that way all her life. I guess we had grown immune to her craziness over the years. It was just normal life with Mom.

 

[Scuba]

Not really wanting to burst your bubble, but we took our mom on a tour of Assisted Living places. She picked one out. We moved her in. They kicked her out before the end of the first month due to her aggressiveness towards the other residents (if someone was sitting at a table she wanted to sit at, she drug their chair with them sitting in it to another table, plus yelling, name calling, etc).



So we waited a few months. She again announces she wants to move into an Assisted Living place. We tour. We pick one. We move her in. She was kicked out in 2 weeks due to her unfiltered behavior (loud, obnoxious, hit people, would lay down on the floor right in front of the doors to the dining room to do exercises thus blocking the doors so nobody could enter/exit).



So then we try again with a 3rd place. The first two were large and very fancy upscale places. Since too many people seemed to be overwhelming for her, we then tried a small "group" type home. She only lasted 2 days before they called me. She went in the kitchen and was arguing with one of the staff who was trying to get her to leave the kitchen as she wasn't allowed in there. She grabbed a pan of grease and poured it on the stove thus setting the kitchen on fire (not to mention continuing aggressiveness and abrasiveness towards residents and staff alike).



Then she tells me she knows just what to do in the future to make sure she gets kicked out of places. And smirks at me. Keep in mind, nobody forced her to go to any of these. It was her choice.



We finally resorted to in-home aides for a few months but eventually they could no longer handle her either. She hit. She kicked. She called them horrible names that I cannot repeat. She would sit on the couch and chant "I want chocolate" for hours on end. Just try listening to someone say that to you 20 times in a row and then imagine it continuing for hours. By now, she basically no longer ambulatory and is incontinent.



She was admitted to a psychiatric hospital for a couple of weeks and then moved into another large, upscale place but was put on the skilled nursing level where they could better deal with her. She only lasted about 6 weeks before passing away.

So sorry. Sounds like a horrible experience. I doubt we will have similar issues with MIL. She’s very social, agreeable and fun-loving. Of course this could change as her disease progresses but so far we haven’t seen any decline in her desire to be pleasant to others.

 

[Scuba]

Dear OP; The above comment is perhaps the most realistic option for you that will generate the best outcome for you and your MIL. I have gone through this with my Mom who now resides in a Memory Care facility. My Mom's decline has been fairly rapid. I would not let her drive again and given her memory issues, she is a danger to herself. Your BIL's reaction to his own mother would be the key that would drive me to relocate her to the area that you live in vs. the area she is in now.

We would not move her to us. I really think she’d rather die than leave her beloved little town where she’s lived for 50 years. She was a first grade teacher and has been a very active volunteer and community member. She has many friends, including four close friends who have been supporting her since her decline began (not financially but emotionally and also doing little things for her. Plus, any care facility will be thousands per month more expensive in So CA vs a rural area in GA.

We are not under the illusion that we could take care of her in our condo.

 

[Scuba]

I think the mom’s friends are in this community if I am not mixing up 2 similar threads.

Yes, you are right.

 

[Scuba]

You’ve gotten lots of good advice already Scuba. Listen to her friends and trust your own judgement. For what it’s worth here’s what my mom (and us) have been through. Sounds like we were more fortunate than some.

DF passed almost 30 years ago. DM did well in the house for a good 15 years after he was gone. We have a large family and she loved to have everyone over the holidays. With grab bars and the single story house she continued to do alright until about 10 years ago.

DS and I had been named executors years ago. DS took over paying bills when mom became embarrassed by the shakiness of her handwriting. Then we had to take away the car. Even though she only drove a mile or two away from the house she got lost coming home from church one day. Docs were onboard and that was finally accomplished. She groused about it for years. Made it another 4-5 years at the house with lots of family support.

When it became apparent that she wasn’t really safe by herself (a fall, bought a hospital bed because the guy who called was just so nice, lonely even though one of us stopped by almost every day) we convinced her to go look at independent living. Meals, laundry, activities, and staff could do bathing assistance if necessary. She was engaged giving things to kids and grandkids and a big garage sale but selling the house after 60 years there was tough. she adjusted to her apartment within a few months. Wonderful place close to 4 of the 6 kids that worked great until it didn’t. A couple of falls that she “didn’t know anything about”, then when she got in a delivery drivers van, “I was going to have him take me home”, we knew a more controlled environment was needed. Thankfully we took her to the lawyer and updated all the paperwork to current state regs while she could still fake her way through the competency questions but it was close. She made it almost 4 years in her apartment.

So now she’s been in memory care for about the last 6 months. That has been the easiest transition. We had it lined up and took her there after a short hospital stay saying the nurses just needed to help her get her mobility back. Smiles, jokes, and loves to have family visit although she forgets within 5-10 minutes that we were there. Once in a while she’ll surprise one of us by calling us by name. Some mild aggression towards staff and other residents started about 2 months ago so she’s now on happy pills at the gerontologist recommendation. Buspar and now Rispardal. They seem to help her sleep although DS has had to assist in calming her down a couple of times when the night nurse has called because mom has decided “she’s leaving now!”

The way I understand it it’s a roller coast down from this point. No way to foretell the plateaus, declines, or speed of progression. At 90 now, its all about keeping her safe, comfortable, and happy in the moment. Lately it’s been sorting and rearranging clothes, pictures, and what few Knick knacks she has in her room over and over over.

So do what you can for her Scuba but remember, it’s not her choice to go through this. My advice is to get ahead of it. There’s never a good time for difficult decisions.

Thanks for sharing your story. I agree.

 

[robnplunder]

Not really wanting to burst your bubble, but we took our mom on a tour of Assisted Living places. She picked one out. We moved her in. They kicked her out before the end of the first month due to her aggressiveness towards the other residents (if someone was sitting at a table she wanted to sit at, she drug their chair with them sitting in it to another table, plus yelling, name calling, etc).

Many with dementia never develop aggressive behavior. But I know some dementia patients will reject ALF (or ALF will reject some patients) for various reasons. Luckily for me & DM, everything went well and I hope the same goes true for the OP's MIL.

 

[target2019]

When M-I-L first moved to independent living (IL), she would go on trips with other ladies. After a short time one of the ladies mentioned to my spouse that M-I-L was being aggressive and upsetting others.

Previous to that, in the home, she was acting out against husband and a daughter. That was a key driver in their move to the IL facility. Within a year of moving, M-I-L had to enter the memory unit.

There's a progression to the manifestations of these diseases, and it just progresses. So prepare for the next stage.

 

[Scuba]

Many with dementia never develop aggressive behavior. But I know some dementia patients will reject ALF (or ALF will reject some patients) for various reasons. Luckily for me & DM, everything went well and I hope the same goes true for the OP's MIL.

Thank you! I really hope she will move to AL before she deteriorates too much more.

 

[Golden sunsets]

Thank you! I really hope she will move to AL before she deteriorates too much more.

It sounds like you and your DH will be the ones who need to make that happen, vs your BIL.

I would think that your MIL's neurologist would be able to make a recommendation on whether or not a Memory Care or ALF was appropriate for her at this point.

 

[Scuba]

It sounds like you and your DH will be the ones who need to make that happen, vs your BIL.



I would think that your MIL's neurologist would be able to make a recommendation on whether or not a Memory Care or ALF was appropriate for her at this point.

Yes, I agree. I used to work in the senior living industry and based on the residents I observed, to me AL seems more appropriate at this point. However the doc’s opinion will be helpful.

 

[ivinsfan]

Thank you! I really hope she will move to AL before she deteriorates too much more.

So if you go to AL try and pick a place that also has a memory care or nursing home attached to it. Moves are a little easier on the elderly if that can happen.

My MIL has a disastrous placement in an assisted living group home. The placement lasted around 45 days. We got a call at 10 pm saying she had been taken by ambulance to the nearest hospital and admitted to the mental unit for "aggressive" behavior at the home.. Her crime, there was a disagreement about which program to watch in the common TV area. My MIL had the remote and when other residents and staff berated her for not being "reasonable" she got scared and threw the remote....that's it, because I read the entire incident report.

It took 3 days to get her out of the hospital and into a NH where she spent the rest of her days, she was never the same. I didn't pay her last's months bill for over 3 months and every time they called for payment I asked to speak to the director and gave her an earful. I did peruse filing a complaint with the Dept of Health but was told it's a judgement call when it comes to "personal safety".

If you feel this will be a worsening issue try to look into the future a little when it comes to placement, you'll be doing everyone a favor..

 

[Scuba]

So if you go to AL try and pick a place that also has a memory care or nursing home attached to it. Moves are a little easier on the elderly if that can happen.



My MIL has a disastrous placement in an assisted living group home. The placement lasted around 45 days. We got a call at 10 pm saying she had been taken by ambulance to the nearest hospital and admitted to the mental unit for "aggressive" behavior at the home.. Her crime, there was a disagreement about which program to watch in the common TV area. My MIL had the remote and when other residents and staff berated her for not being "reasonable" she got scared and threw the remote....that's it, because I read the entire incident report.



It took 3 days to get her out of the hospital and into a NH where she spent the rest of her days, she was never the same. I didn't pay her last's months bill for over 3 months and every time they called for payment I asked to speak to the director and gave her an earful. I did peruse filing a complaint with the Dept of Health but was told it's a judgement call when it comes to "personal safety".



If you feel this will be a worsening issue try to look into the future a little when it comes to placement, you'll be doing everyone a favor..

Excellent advice, thank you.

 

[Scuba]

On our way to MIL today. Staying for a week. I’ll post an update after the trip. Thanks again to all who took time to share their advice and stories.

 

[Scuba]

Update on MIL ... we got a lot done. She agreed to stop driving and sell her car, which is huge. She wants to stay in her home, and after seeing the one and only assisted living facility in her area, we agree that she is nowhere near the frailty level of the AL residents. She has agreed to wear a medical alert device, which is on its way to her now. She also agreed to have some changes made to her rented home to make it safer. BIL is a contractor and knows the landlord, and he has agreed to help get the changes made. She put DH and me on her checking and investment accounts as authorized to transact, as well as added us as authorized to talk with her health insurance provider on her behalf. She has a will and a healthcare POA in place already. No durable POA but not sure one is needed. I started a separate thread on that.

Thank you all for the advice you provided. It was very helpful, and we feel good that we were able to make this much progress with MIL’s help in a 6-day visit. Whew!

Unfortunately her neurologist shared that her diagnosis is vascular dementia. Many people who get this had a history of strokes or circulatory problems before this, and the average life expectancy is only 4-5 years after diagnosis. However she hasn’t had any of the other issues and is very healthy for her age except for the dementia, so it’s difficult to say what her prognosis is.

In any event, we are glad her friends reached out to us about the issues she’s been having and are very pleased with what we got done. We’re hopeful BIL will start to be more involved. Time will tell. I’m sure we will make more frequent trips now so we can spend time with her while she is still able to function reasonably well.