Social dilemma-acquaintance with dementia

[EastWest Gal]

What would you do?

I play in a community band that started up in person rehearsals 4 weeks ago. Before the pandemic, one of the players in my section was diagnosed with frontotemporal dementia. It was obvious that her playing was slowly going downhill for a couple of years before her diagnosis. After she lost her driver's license, and I drove her to rehearsal for about 18 months, and during that time her family moved her out of her house and into a facility with independent/assisted living/memory care. The last few months I drove her from her facility to band rehearsal. It became obvious that her ability to follow the music was waning, and it was very stressful for me to try to point her to the page when she got lost, which became almost constant. The band director was angry at me for her problems. He couldn't very well direct his ire at her, as it would do nothing positive.

Our band started rehearsals up a few weeks ago. We were notified by email, but it was a bit hidden, so she didn't figure it out. I discussed what to do if she called me to drive her to rehearsal with band leadership, and they were not very helpful. She didn't call until late last night, a month later. I didn't pick up.

She can play, only a little, but will be ruinous for the band. What would you do:
1. Ghost her
2. Contact band leadership to tell her to not come back
3. Take her to a rehearsal and not help, and have leadership tell her not to come back
4. Other?

Frontotemporal dementia is very different from Alzheimer's, and is very difficult to deal with. Behavioral disinhibition and completely self-centered behavior, as well as language issues are features. I was stressed out about her before Covid isolation. She has no insight into her illness at all. I had very limited contact with her over the past year, and she is really going downhill. Here is a link to information about this type of dementia.

https://www.theaftd.org/wp-content/uploads/2018/03/FTD-Signs-and-Symptoms-bvFTD.pdf

I have no desire to bring her to rehearsal at all. We were never friends. She treated me inappropriately for years. I now know it was the beginning of the dementia. I want to support people with dementia, but this is not a person in my inner circle. What would you do?

All opinions are welcome.

 

[kjpliny]

Be honest. Just say her condition has affected her playing and it would reflect poorly on the band to continue with her participation.

 

[Aerides]

Sorry you are having to deal with this. It sounds like this was one of those things where you agreed to help, it got more and worse, and you just kept taking on the responsibility vs. pushing back. Very normal.

But now, I think you need to be firm and clear with band leadership, and with her family, if necessary.

The Band leaders have clearly let you down, and need to take over here, just as they would with any other player not able to perform. Taking it out on you would lead me to find another place to play. Clearly this isn't a small band, so I know that might be a challenge.

You might have to be firm that you need to take a break until they resolve this. That you cannot receive feedback for another person's playing simply because you have been their taxi service.

As far as the driving itself, your are no longer comfortable with the responsibility for someone with medical needs, and if her family contacts you it is on them to figure this out. They can pay for Uber or taxi's rather than taking further advantage of you.

 

[RunningBum]

Is it possible she won't remember the sessions? Or can she be distracted away from the topic any time you talk with her? Otherwise, I'd talk with the band leadership to decide which of 2 or 3 to do.

 

[Sarah S]

I am truly sorry. You are in a very difficult situation. I am very familiar with FTD and it is tragic for all involved.

It seems as if she won’t be allowed back so option 3 will only prolong the pain.

I think someone needs to tell her the truth. She will be angry and unaccepting and say hurtful things. Can her family do it? That is best I think. Otherwise it is leadership or you if you are willing.

I am really sorry and thank you for trying to help

 

[Dash man]

My step-mother-in-law has dementia, and is currently in a nursing home. It is a terrible disease.
Someone needs to be firm and tell her she can no longer perform up to the standards of the band. It should be the family if possible, because she will likely continue to want to play until she completely forgets the band.

 

[pjm-7]

Since she is in assisted living the band leadership should talk with the facility's social worker to have the information given to her about being removed from the band. You have been more than generous over the years. It is time to have others handle this.

 

[tb001]

Is it possible she won't remember the sessions? Or can she be distracted away from the topic any time you talk with her? Otherwise, I'd talk with the band leadership to decide which of 2 or 3 to do.

I wonder about this too. My father has FTD. He is still driving (don’t ask) and lives at home. But there is no way he would remember in any meaningful way.

 

[ivinsfan]

I think the issue here is that's its a community band so no one wants the hard job of telling this unfortunate lady she isn't up to normal standards.



But the director taking that out on you is completely unacceptable.



Personally, I wouldn't have any more face to face contact with her. You could message her you are no longer able to transport her and leave it at that. Or maybe she doesn't operate a cell phone anymore? If not, you just need to decide if you want to tell her over the phone. I agree family would be the best people to tell her she can no longer play, but it sounds like you don't know the family.



Whatever you decide even if it's ghosting her don't beat yourself up about it. Sounds like you have done a lot for this lady, however that doesn't mean you have to keep doing it.



You sound like a great caring person and people like you often get into situations like this, as in no good deed goes unpunished..

 

[Music Lover]

But now, I think you need to be firm and clear with band leadership, and with her family, if necessary.

The Band leaders have clearly let you down, and need to take over here, just as they would with any other player not able to perform. Taking it out on you would lead me to find another place to play. Clearly this isn't a small band, so I know that might be a challenge.

As far as the driving itself, your are no longer comfortable with the responsibility for someone with medical needs, and if her family contacts you it is on them to figure this out. They can pay for Uber or taxi's rather than taking further advantage of you.

I agree. It's the band leader's responsibility to address this. That's why they're the band leader...they are the ones who are supposed make these decisions. In all the bands I've been in with a band leader I just showed up and played. The BL took care of arranging gigs, personnel changes, set list, pay, etc.

It's also time that the person in question found their own transportation.

 

[Jerry1]

I would pressure the band leader to handle it. That’s part of the leadership role. Once he makes it clear, even if she forgets, at least you’re not breaking it to her the first time. Afterwards, it will feel better to you to at least be able to honestly say, leadership let you go because . . .

Good luck. Hard issue to handle for sure.

 

[RetMD21]

I like option 2

 

[Amethyst]

As others have said, explain the situation to the band managers and the dementia facility, and let them deal with it. The facility should know how to distract her with lies ("they closed the practice area for rehab") until she forgets the whole thing. She will not able to accept the real reason.

At this point, she probably has no short-term memory. When we reach that stage, we can remember what's said to us for about 2 minutes (immediate memory), and then poof - the data never make into short-term, let alone long-term memory. Meanwhile, long-term memories are also being destroyed, or the access to them is getting clogged, which amounts to the same thing.

Bottom line, whatever you tell her, she will promptly forget. You cannot reason with later-stage dementia and it will just wear you out, in a series of circular, nonsensical arguments.

 

[ExFlyBoy5]

I also think it's the band LEADER'S job to do the dirty work. There is a reason he/she is called a LEADER. Since it seems as though you aren't friends and there isn't really a connection with her outside of the band, I would also lean towards ghosting her. I know that sounds cruel, but I think it's prudent and it appears that she wouldn't even realize it.

Also, if you feeling particularly gracious then you might be able to reach out to her family. They may very well be able to break the news in a way they have broken other news to her (such as losing her license).

 

[pb4uski]

..... I have no desire to bring her to rehearsal at all. We were never friends. She treated me inappropriately for years. I now know it was the beginning of the dementia. I want to support people with dementia, but this is not a person in my inner circle. ...

Sounds like good reasons for 1.

Since she is in assisted living the band leadership should talk with the facility's social worker to have the information given to her about being removed from the band. You have been more than generous over the years. It is time to have others handle this.

and 2... they "just" need to let her know that her disease has resulted in a decline in skill where she is now a detriment to the band. Perhaps they can soften the blow by presenting her with a framed certificate thanking her for her years of service and naming her as an "emeritus" member.

 

[ivinsfan]

Sounds like good reasons for 1.



and 2... they "just" need to let her know that her disease has resulted in a decline in skill where she is now a detriment to the band. Perhaps they can soften the blow by presenting her with a framed certificate thanking her for her years of service and naming her as an "emeritus" member.

This is a great idea.

 

[Sojourner]

My dad is suffering from mid-stage dementia, so I have a lot of sympathy for people who are cursed with this awful, life-destroying malady.

Having said that, I think the burden of dealing with this situation falls entirely on the poor woman's family and closest friends, and even more clearly on the band leader/director. Option 2 is basically how I would handle it.

 

[pacergal]

Since she is in assisted living the band leadership should talk with the facility's social worker to have the information given to her about being removed from the band. You have been more than generous over the years. It is time to have others handle this.

Agree with this. It is band leaders responsibility to take care of this with facility and her family. And they need to do it sooner than later!

If she continues to contact you, you could contact the care center or her family directly, or block her number-- You have been generous, kind and thoughtful in the past, no need to continue.

 

[skipro33]

While dealing with my father's dementia, we were coached to lie to our loved ones with the disease. That it was a kindness rather than upsetting to tell them things that make sense to their world.
In your case, if she calls and asks about band practice, tell her something along the lines of; you are no longer in the band because you moved, have dementia yourself, etc.

My father would get upset because he wasn't allowed to drive. I was the one who took away his license and car. I blamed it on his doctor. He's pissed at the doctor, so I warned the doc when we checked in for appointments. They knew how to deal with it.

 

[ivinsfan]

While dealing with my father's dementia, we were coached to lie to our loved ones with the disease. That it was a kindness rather than upsetting to tell them things that make sense to their world.
In your case, if she calls and asks about band practice, tell her something along the lines of; you are no longer in the band because you moved, have dementia yourself, etc.

My father would get upset because he wasn't allowed to drive. I was the one who took away his license and car. I blamed it on his doctor. He's pissed at the doctor, so I warned the doc when we checked in for appointments. They knew how to deal with it.

I just can't agree, the OP has no need to engage herself in this situation and prolong it. She was kind enough to drive this lady as a favor and a simple I won't drive you anymore or even ghosting is enough. There is enough stress in life without taking it on when you don't need to.

 

[audreyh1]

This is such a sad story!

Regardless, you have already gone above and beyond helping this person for whom you have no responsibility. It’s not your problem at all and you’ve already done way more than enough. You are certainly not responsible for driving her anywhere.

Dementia is so sad. I’m convinced that maintaining a healthy metabolism through appropriate diet (slightly ketogenic) plus exercise can avoid a lot of it. Unless the cause is environmental toxins. Dale Bredesen.

 

[Amethyst]

Totally agree. Few of us are equipped to deal with a demented person. As I said, the woman won't remember what was said to her anyway.

I just can't agree, the OP has no need to engage herself in this situation and prolong it. She was kind enough to drive this lady as a favor and a simple I won't drive you anymore or even ghosting is enough. There is enough stress in life without taking it on when you don't need to.

 

[EastWest Gal]

I think the issue here is that's its a community band so no one wants the hard job of telling this unfortunate lady she isn't up to normal standards.



But the director taking that out on you is completely unacceptable.



Personally, I wouldn't have any more face to face contact with her. You could message her you are no longer able to transport her and leave it at that. Or maybe she doesn't operate a cell phone anymore? If not, you just need to decide if you want to tell her over the phone. I agree family would be the best people to tell her she can no longer play, but it sounds like you don't know the family.



Whatever you decide even if it's ghosting her don't beat yourself up about it. Sounds like you have done a lot for this lady, however that doesn't mean you have to keep doing it.



You sound like a great caring person and people like you often get into situations like this, as in no good deed goes unpunished..

It was a stressful situation him as well as myself. We're friendly now. It is so much better not having her there.

 

[EastWest Gal]

I'm going to pursue option 2. I listened to the message today and she only asked me to give her a call, but she called late last night. I'm going to talk to the band manager, since I don't have the conductor's contact info. Thanks for all your input.

 

[f35phixer]

You're a WONDERFUL Friend !!!!!!!!!!!!!!!

We had to go through dementia with DW's uncle. She was the love of his life, but after a while he got down right MEAN to her, broke her heart! Its bad to deal with a loved one with it.