Wednesday, February 20, 2013

"Do You Know Who I Am?": Tapping into Creativity Instead of Memory

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.


Rev. Katie

Sunday, February 10, 2013

Mom's German Chocolate Cake

The cake most of us in the family requested from Mom for our birthdays was a German Chocolate Cake. Mom has made that cake for all her kids, many grand kids, and on family occasions. She has taken it as a carry-on to bring to one of her children living out of state. I think we have even shipped it out of state. My Dad's birthday is this month so it was only fitting that we made him Mom's German Chocolate Cake. You can't use a boxed mix for this and the recipe has a cooked egg frosting. Many of the techniques of making this cake are not things most of us do anymore because there are so many boxed items or mixes that we use instead. However, I like making this cake because I know the tricks to making it having helped Mom with the cake so many times before. Like how the frosting really takes about 45 minutes to make rather than the 12 minutes the recipe says, and if you cook it on medium as the recipe says, you will get scrambled eggs. Or making sure to line the bottom of the pans with waxed paper because this cake really will stick to the pan even if you grease it, and it falls apart easily. All little things that Mom taught me from the many times we made this cake together over the years.
Click to read Mom's note. Photo by Jeff Norris

Every time I make one of Mom's signature recipes, I am proud and sad. It always reminds me of the end of an era, expect that it is not quite the end because Mom is still here. When I went to get the recipe out of my recipe box, it was hard for me. Almost all of the recipes in the box are handwritten by Mom, given to me at my wedding shower 13 years ago. Mom has not been able to write for a long time now and I have not seen the smooth, beautiful curves of her cursive in years. When I read her letter to me on the inside of the box and the instructions for the recipes, I realize that I have not heard her say a full sentence in at least eight months. She has not been able to make any recipes for over a year. It is hard for me to know what she used to be like, and I feel like that is not my mother anymore. Not that she is not longer Mom, but that I barely remember what she used to be like. Which is strange, because she only started her journey with really visible dementia about six years ago. I feel bad that I do not really remember her as she was before.

As I saw my beautiful niece feed Mom small bites of the cake, I thought of how my son and my younger nieces and nephew may not really remember Mom as she was before. In fact, some of them have never tasted Mom's famous cake made by her hands. While they love her and like helping care for her, I still feel sad that they did not also get to experience her as cooking up a storm, knitting, laughing, and helping take care of them when they were sick.

I loved making the cake for Dad because I could make sure a bit of Mom as she was before was still there even while we enjoy having Mom there as she is now. It was kind of a way to bridge the two times in her life together for both Mom and Dad.
Me and Dad with Mom's cake

It is a hard transition, loosing someone in this way and seeing at special times in our lives how one day they may not be there at all. It is all the little things, like a cake, that make you realize how things have changed and how different they will be in the future. It is a weird combination of sadness from what you have lost, but also happiness to still have them in your life, and joy that you can carry on some of the things that are special to them which they can no longer do.


Rev. Katie