- The person who only speaks in a whisper. It is a great effort for him to do so. But he does it. And he taps his feet to the beat of the songs we sing.
- The man who used to play the guitar in a band. Jeanie brought in a ukulele one time and put it in his arms, he cradled it lovingly, and he beamed. He strummed a little, but mostly he beamed.
- The woman with the delightfully sarcastic sense of humor. “Shakespeare: He never calls, he never writes”, she complained. That was at our very first session.
- We were talking about things we love, because the theme of our work together is “Colors of Love.” One woman said, with pleasure, in a gravelly voice, “I love money!” A gentleman countered, “We called my mom, “Money!”
- The woman who loves to dance, to move her arms. She is positively transported when this happens, it’s like she’s floating in outer space.
- At the end of each session, everyone gets a lightweight paddle drum and a mallet with which to beat it. It’s extraordinary to see all of them, this big group of 15-20 people with disparate attention spans, focused together on the beat of a song.
- The woman with the you-never-know-what-she’ll-say-next sense of humor also loves to sing. She starts each session by singing “Over the Rainbow,” by herself. When Jeanie started playing that at the very first session, she just got right up, stood by the piano and sang it. This has become our opening ritual for every session.
Jeanie is fond of saying “There is no wrong in this room.” We three do our best to go with the flow of the group. Every response is valid, every response is appreciated. We write down a lot of their responses and it becomes a new poem or the lyric to a song Jeanie writes music for. Some things we try go over better than others, of course, but we learn from whatever responses we get. There is a feeling in these sessions of a great relaxation, an opening, where people can just be and feel what they feel, say what they want, participate at whatever level is working for them that day, that moment. It’s a bit of an oasis for them, and for us as the group leaders as well. It’s like we are on this wonderful everchanging and enchanting island for an hour and 15 minutes. It’s very safe there.
Excellence in dementia care demands a kind of constant “you are okay with me” attitude. Not only that attitude, but a clear communication of that meaning. What the person with dementia most definitely does NOT need is to be corrected, pressured or argued into anything. We need to go to their side of the street, as they are likely NOT able to see things the way we might prefer them to see it. Trying to bully them into coming over to our point of view is wasted effort, wasted time, and a wasted opportunity to build relationship. When we see where someone is at, accept it, and communicate that we do accept it, they know they are safe with us. They know they are seen. They know they are heard. They know they matter. We then can more easily move on from a stuck place. When we send the message that we respect the person’s feelings (“I get it, Mom. You really don’t like it here right now. Tell me more about that”), we are communicating that we are willing to understand WHY they might be feeling the way they feel, WHY they might be doing what they are doing (even if that is not our favorite thing) or WHY they might be wanting what they want. We are, in effect, building a bridge. The phrase “Tell me more about that” needs to be said often, much more often than it currently is, to persons living with dementia. And the listening that must follow needs to be sincere and deep.
Let’s not forget the sense of play, either! A light touch, a sense of gentle amusement can be very helpful in dementia care. We need to not take it all so seriously! In our sessions speaking bits of Shakespeare, creating poetry and making music with people, we stimulate their creative spirits, we get them talking about things that mean something to them. We are fishing around, but with a light heart. We are playing with them. I urge anyone who is a care partner of a person with dementia, or who is in a caregiving role, to never underestimate the value of play.
Relationship with a person with dementia is a partnership! A dance! Toes that get stepped on usually recover! It just might be a FUN dance! Enjoy the collaboration!
-- Marysue Moses, email@example.com, with thanks to Jeanie Brindley-Barnett and Zoë Bird.