One Poem At A Time: Chronicling The Journey Of Alzheimer's
After getting a diagnosis of Alzheimer’s, many feel scared, anxious and uncertain about the future. One Virginia woman decided to use poetry to convey her experiences and help others understand a disease that’s often hidden. In 88.9 WCVE’s series on Alzheimer’s and Dementia, Virginia Currents Producer Catherine Komp has more.
Learn More: Find more stories and information on Alzheimer's and Caregivers and watch the November 10th 9:00 pm premiere of WCVE PBS documentary Alzheimer's: the Caregivers Perspective. If you're not in the viewing area, watch on Facebook Live.
Peg Carter had a long career in education. Back in the ‘60s, she taught social studies and language arts in junior high. Then she got a Masters degree in reading; next a PHD in Learning Theory. She used that to teach medical students and faculty how to learn.
Peg Carter: I’ve always been a teacher at heart, always, always, always. I loved science, but I did not want to be in a science. I loved what my mother did ...
Her mother was a pediatrician.
Carter: Blood didn't gross me out or anything, but I liked the humanness and personalness of working with kids. And then adults are okay too.
Now 69 years old, Carter is enjoying retirement. She’s a member of the local CERT, or community emergency response team, trained to support relief efforts if there’s a disaster. She volunteers at a local food bank, sings in a choir and belongs to a quilting group.
Carter: I only do the tying because I don’t know how to sew (laughs) but we tie the quilts, other ladies sew the squares together (laughs).
Carter loves to laugh. Growing up, her home was filled with joking and storytelling. That continues as does her love of poetry. She wrote her first poem when she was 10.
Carter: Today’s the day we honor our gods, on Mount Olympus with spears and Rods. To Zeus we bow and give him due, the other gods we honor too. (laughs) Not quite good stuff…(laughs)
As an adult, Carter continued writing poems, exploring nature, relationships, beauty. So it was natural, when the doctor confirmed she had early onset Alzheimer’s, to sit down with a pen and notepad.
Carter: It is called, the Verdict. This is when I got my diagnosis. I had sensations before that but this is when I had my diagnosis which was April of 2015.
(Carter recites The Verdict)
After getting the diagnosis, Carter says she allowed herself time to mourn. Time to get angry. Time to sit with her husband and cry.
Carter: And we just decided we were going to live and continue on. I’m not dead yet, I’m not even half done, (laughs) so let’s go on, so that’s what I did.
Carter already had an intimate perspective of Alzheimer’s. Her father, a PHD physicist, was forced from his job at age 60 because of the disease. His mother had it, and two of his siblings. The path was known, says Carter, but it’s still frightening.
Carter: Many diseases have an outward projection that can be much more easily understood. If you have breast cancer and even if you have to lose your breast, you are still you; if you have polio or something like that and can not walk, you are still you. But Alzheimer’s strikes the very essence of ourselves, our mind. Because the mind is at the center of our being, it is who we are! And [Alzheimer’s] sneaks and creeps and chews and tears away until it’s gone.
Sitting at her kitchen table, Carter pages through dozens of poems she’s written during the past year and a half. This one is called How Fast Is Slow?
(Carter recites How Fast is Slow?)
Medication helps the symptoms says Carter, but it’s still Alzheimer’s. There is no cure and it will progress. Space Docking is Carter’s look at what’s happening in the brain, what’s happening to memories and ultimately one’s identity.
(Carter recites Space Docking)
Carter: Since it is such a nasty disease, I have decided what’s best thing I can do about it. And so I want to be a chronicler of the journey and I do have gift with poetry and I’m going to continue it all the way along to see and be able to express through the different stages as far as I can.
Poetry, says Carter, can help family members and caregivers understand, on a different level, what the experience is like. Because it’s such a hidden disease, she hopes her words will help shatter the stigma, help bring those with dementia out of the darkness and show they can and should continue to be a part of their community.
Carter: I think because of my particular experience and because I do have a way with words, that I can maybe let others into what it is really like for those of us who are going through Alzheimer’s and I’d like that to be shared with a wider world.
(Carter recites the Unraveling)
Carter hopes to publish her poems, and reach more people - those diagnosed with dementia, their family, loved ones and friends. Her advice to others with the disease - first, allow yourself to mourn.
Carter: Let yourself mourn, but don’t wallow. Evaluate yourself, look to your inner self and see what are your inner strengths that you have. Think about your team work you can have, a team for yourself, your friends and a network that can support you -- and you will be supporting too. It’s a give and take, it is not a one way direction there. Perhaps find some new activities to do to stimulate your brain and get you into new experiences and out of a rut. And never give up. And still remember you are still you.
For Virginia Currents, I’m Catherine Komp, WCVE News.