For the past 10 years, I have volunteered in the US and abroad, but this summer I have made no such plans. Instead, I am embarking on a different journey: an adventure with my grandmother, Mama Eula. Six years ago, my Mama Eula started forgetting things—how many eggs she put in the cake batter, where she had placed her keys, people’s names. The doctors diagnosed her with Alzheimer’s.
At first, the disease wasn’t noticeable, but every winter and summer when we visit as a family, the disease has progressed and she is still the same person, but different. Two years ago, she came to stay with us for a few months, but talked more and more of returning home to rural Kentucky. So home she went where she lives now with my grandfather. But she is not an easy person to live with anymore. She is paranoid and comes up with the craziest stories, stories that are not only not true, but hurtful. She has forcefully yelled at my younger sister for something my mom did as a child, and accused people close to her of adultery and evil intentions.
Sometimes her stories create situations that are just so impossible that we have to smile and laugh. Once, she told the delivery man she was being held against her will, but by the time the poor man had called the police to the scene, she had forgotten everything. Another time, my grandfather’s sister (who is 90 something), was crying because she was worried her baby brother would drown in the lake. Inappropriately, Mama Eula just laughed and laughed. Sitting between them, my siblings and cousins and I tried not to laugh too.
I watch my grandfather and only hope that I have inherited some of his patience, compassion, and dedication.
Summer 2010—that which only I can do
There are drugs to slow down the memory loss, but there is no cure. She will never get better. I haven’t heard her say my name in at least a year, and I’m not sure I will ever hear it again. If I don’t spend time with her now, I really might not get another chance.
I want to take her to the places that hold a lot of meaning and ask her to tell me stories. I want to document those stories and put them together in a book for her to read. The last time I saw her, she could read words slowly, and if she read them enough, sometimes she understood their meaning. I don’t know what condition she will be in now or if she can still read words or not… maybe the book will contain only photographs and names. I don’t really know what we will end up with. But… I think the journey and the creative process IS the destination here.
Preparation
I approach this project with only my life experiences and a creative arts therapy class where I did my final project on working with patients with Alzheimer’s. That, and love. I have searched the internet and found various projects online. I am going to get in touch with some
Ideas (besides documenting stories)
Trying out different activities with her: cooking, gardening, playing with animals, creating art, and listening to music…
I think I will write to share our journey with anyone who is interested be it family, friends, or strangers. According to one website, 54% of the adult U.S. population has been touched by Alzheimer’s. I really don’t know how I can help other people who have family members suffering from the disease. But maybe, at the very least, I can share my experience with my grandmother here for others to see that they are not alone.
I don’t know if I already mentioned this, but I am scared. Actually, I am terrified. I am terrified of seeing my grandmother’s condition deteriorate, and I am scared I won’t be strong enough. But it really doesn’t matter how scared I am because tomorrow morning, I am jumping in the car, and off to Kentucky I go!
This summer I hope to learn how to have no expectations, to go with the flow, to know that I am not in control, and to be in the present. With a loved one suffering from memory loss, I think that’s all we can do. I will write to share my challenges and joys. I will write to share the strength of the human spirit in the face of this degenerative disease. And I will write as usual, for my own sanity.
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