I have noticed that as Mom's dementia has progressed and she can communicate less, people tend to ask her "Do you know who I am?" or "What is my name?" I completely understand why they are asking this. We have this need to know that our loved one still knows us. We wait in anticipation for our name as if that means our loved one can recognize us and we still have a relationship with them. We ask this question out of our need. Out of our fear that we will be forgotten and that our loved one has changed forever. As if their memory of us proves that we are still here. I have asked this before too, however I now have come to realize it is a terrible question to ask.
I see in Mom's eyes that she wants to be able to say the person's name and she can't. She gets agitated and upset when she can't respond to you. It is painful for her that her brain does not work the way she wants. Asking her "What is my name?" is extremely degrading and upsetting. We don't mean for it to be that way, but it is because we are making it abundantly clear to them that something is wrong with them rather than celebrating what is still wonderful about them.
In the work that we do with the Carolyn L. Farrell Foundation for Brain Health, we focus our programs for people with dementia on creativity and imagination rather than memory. This is because it is SO frustrating and devastating for people with mid to late-stage dementia when people ask them to use their memory. It is a reminder to them of all they have lost and it makes them think they can not contribute to the world because they do not have the precious knowledge we are asking them to produce.
Too often I see in nursing homes and adult day cares activities based on memory. A caregiver stands at the front of the room and asks questions about "the old days," as if this will comfort people. "Who was a famous baseball player in the 1930's?" the caregiver calls out. Most people sit and stare at the wall or fall asleep. "What were your favorite kind of shoes to wear when you were a kid?" Silence, and some people's brows furrow and they get anxious. Does no one realize that they are asking these people things they can not remember? It is like asking a two year old "What is sixteen divided by seven?" This is not something most of them can do and it is aggravating for them and honestly makes them feel bad about themselves.
However, you can do things like tell stories about "the old days" and then usually people talk about the story. You can show pictures of events, like Christmas and all of the sudden someone will say "I used to love Christmas. We ate cookies." They feel happy and know they can contribute to the world. They are not being tested or judged on the basis of what they remember.
Mom has not called me by my name in at least six months. She does call me "honey" when she sees me. She still remembers my son's name sometimes or asks me "Where is the little one?" Just because the exact name does not come out or just because someone does not recall any baseball players from the 1930's, that does not mean we have lost our loved one. Even when they can not speak and seem to stare off at the wall all day, certain things will still bring light to their eyes. Play some of their favorite music, tell favorite family stories. If they can still use their hands, create art with them.
Tapping into creativity and imagination reaches deep into their soul, touches their spirit, and does not ask of them to use the memory they have lost. It does not remind them of their illness but celebrates their abilities.