When to interfere

Margueritejudy

My sister, who has mild dementia, lives in independent living in a separate apartment in the same retirement community as me. One of the activities here is a “guitar jam,” twice weekly where she has become the vocalist. She loves it and it is good for her mind. However, the group leader wants her to sing the lyrics from memory, which is difficult for her at this time. Even if she can memorize the lyrics, she is concerned that she will forget them during a show. I keep telling her to talk to the group leader to say that she’ll need to have a music stand in front of her with the lyrics on it and that even though that’s not how singers usually perform, we are all old fogies at this point and it should be accepted that we can’t remember the lyrics. 

She seems a bit intimidated by the leader and forgets that we had the discussion that she should advise him of her limitations and request that looking at the lyrics is okay. She is putting too much pressure on herself to memorize the lyrics and it is stressing her out. On the other hand, the participation in the group makes her very happy and is probably good for her brain. 

Should I talk to the group leader to explain the situation or will my sister get annoyed and I’ll be in the hero/victim/villain situation? If I ask her if it’s okay to talk with him, I know she’ll say that she will do so, but it won’t happen because she’ll forget that we had the conversation. On the other hand, I wouldn’t want to see her embarrassed if she forgets lyrics or if she get’s dismissed from the group.

Thanks for all your wisdom.

mommyandme (m&m)

My first thoughts:

Does the leader know of her mild dementia diagnosis? Are you her medical POA? If not either of these you may be overstepping by discussing her health with the leader, unless she gives you permission.  

On the other hand, it could be a very kind and gentle thing to do as your sister’s supporter.  

Just my 2 cents.  Hope it goes well and she can continue singing without worries.  

abc123

It's so nice that your sister has something that she enjoys! Good for her! This could be a tricky situation, I hope others come along to add input. Some members have mentioned that people without dementia may resent PWD in a facility setting and tend to not include them in activities. I think it was HB who mentioned this happening to an aunt of hers. Hopefully she will see your post. 

I listen to live music at least once a week. One of my favorite local groups has started using little stands holding their ipads. This band takes request and doesn't always know or remember the words to plenty of songs. No one has complained about it. I hope this gets ironed out soon for your sisters sake and she will be able to enjoy singing for a long time! Merry Christmas to you and her!

Stuck in the middle

I would probably offer to go with her to talk to the band leader.  That way, there's no question of you talking about her behind her back.  

Or she can do what Elvis did.  He said when he forgot the words, he "just squalled."

GothicGremlin

Hi Margueritejudy - I was in kind of a similar situation as you. When my sister was in the early stages she was still a member of a choir. They did three or four big performances a year. The last year she was in the choir, she struggled. She struggled with the song lyrics, and she struggled with getting up and down from the risers.

Peggy was intimidated by the choir director, and some of the people who stood by her in her row.  We gently explained to the director, and a couple of the members, what was going on, and once they realized that Peggy has AD, they worked hard to accommodate her. Their whole demeanor changed. The choir members on either side of her made sure she safely got up onto, and off of, the risers. It was really nice to see. 

The result was she got to complete that last year of choir, and she got to perform with them one last time. It was clear, even to her, that she wouldn't be able to sing with them the next year, so she used that last performance to go out on a high note.

So, I don't know, leaders are all different, but what worked for us was to just explain the situation and see what happened.  If you feel comfortable, maybe talk to the leader - he might try to accommodate her.