Language has always played an important role in Judy Prescott's life.
As a young child, Prescott grew up composing poems and showing them to her mother, Mary (called "Cecy" by her friends and family), who was her editor. As an adult, language has allowed Prescott—an actress who has appeared in movies and television shows including True Blood and Grey's Anatomy —to communicate the thoughts and feelings of a variety of characters to her audience.
Now, as the author of, "Searching for Cecy: Reflections on Alzheimer's," a book of poetry written by Prescott about her mother's battle with Alzheimer's, language is helping her connect with her most challenging role to date: being a long-distance caregiver to her mother who was diagnosed with Alzheimer's more than 12 years ago.
"In the beginning, I was very much alone because my mom was so young. I wasn't the kind of person to go to a care group. I never followed through and attended a group, although I called to find one, but it wasn't for me. Through my poetry, I was able to cope."
In the early stages of her mother's diagnosis, Prescott made the long, aerial commute from her home in Los Angeles, California, to Maine, where her mother lives, several times a month. She even spent some time living in the dementia ward where her mother was staying.
It was an immense struggle for Prescott to balance caring for her mother in Maine, caring for her daughter (who was born after Cecy's diagnosis) and husband in LA, and her career. "The first few years were intimidating—in the early stages. Sometimes my mother said that she wished she could just walk into traffic."
Prescott sought to move her mother out to LA so that she could take care of her on a more regular basis, but the rest of the family wanted Cecy to remain in Maine.
Faced with the fact that her mother would remain on the other side of the country, Prescott had one of the most profound (and necessary)revelations that a long-distance caregiver can have: "I'm not as necessary as I thought I was," she says, "I was trying to control her life, but I needed to honor her life, her journey."
Learning to speak the language
Letting go when you're a long-distance caregiver is not a simple task.
"It's a painful thing, to be so far away," Prescott says, "The hardest thing to come to terms with is not forgetting yourself, you can't drop your entire life to be with them. It's not what mom would have wanted."
One key to successfully caring from afar is having a good care team and communication system in place for your loved one.
Prescott continues to visit her mother on a regular basis. When she can't make the trip, she makes phone calls. She calls her Aunt Petey, who visits Cecy regularly, and reports on how Prescott's mother is doing. She calls the nurses who care for Cecy, and she calls (and Skype's with) Cecy herself.
As Cecy's dementia progressed to the point where she had difficulty communicating with her daughter, these constant calls lead Prescott, a lifelong student of the power of the spoken and written word, to re-define what language means to her.
After reading the book, "Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease," written by Joanne Koenig Coste, Prescott says she realized that she needed to change the way she viewed communication with her mother.
"I don't speak Alzheimer's. I realized I needed to learn this language and help my mom have a nice life," she says, "because it is a life, they have a life and they are here for a reason."
Prescott urges caregivers to seek out that reason, and admits that it can be extremely difficult to find.
"We don't see the wisdom, and what they have to give because they don't have the ability to express themselves. But my mother is teaching me things that she probably couldn't have taught me if she wasn't in this situation. I don't know if she wouldn't have been able to teach me, or I wouldn't have been able to hear them."
Helping caregivers decipher dementia
Over the last decade, Prescott's poetic sanctuary has helped her uncover some of the meaning hidden in her role as a long-distance caregiver. "I learned how to mourn the loss of my mother while living a life that would make her proud," she says.
An unintended byproduct of Prescott's self-exploration, her book was never meant to be published. It started out as a collection of poetry and artwork, created and compiled by Cecy's family as a tribute, to be shared at her funeral.
But, as the manuscript began to take shape, Prescott and her relatives realized that their project could be more than that. "For us, the book was community, it was support—it was honoring the journey. We wanted to help others by making it more universal."
In the book, Prescott takes on the role of translator, creating a kind of caregiver's Rosetta stone—giving voice and life to the collective feelings of those struggling with caring for a loved one with dementia.
Being an Alzheimer's caregiver has taught Prescott a lot, but she says that one of the most important things she's learned is the value of interacting and sharing with other caregivers. "For many years, I didn't look for that community, but it is very important," she says, "Community isn't weakness, it's extremely valuable."
Prescott was extremely nervous to present her book to its most important critic—Cecy herself. "If she had an adverse reaction, I wouldn't have allowed it to be published."
But Cecy did approve, taking the book and tucking it beside her, hidden, so that no one could take it away. Prescott says, "It's like she just knows that the book is honoring her journey by allowing her to help others."
Proof
She disappears before me,
Silently slipping into a realm
In which I don't figure,
Quietly busying herself with
New vistas, devoid of reason
If she cannot know me
Do I exist?
My history is erased systematically,
As each neuron misfires
And no longer seeks its intended connection
As the night rain displaces
The dust of daily life,
So am I displaces,
Destined to build my own boat
And sail to higher ground
-by Judy Prescott, in "Searching for Cecy: Reflections on Alzheimer's"