Alzheimer's Services Keynote Address

Comforting Words

from The Advocate 12/21/2010

By ELLYN COUVILLION

Advocate staff writer

Sherry Smelley’s mother raised her with a love of literature.

It seems fitting that after Smelley lost her mother in 2009 to Alzheimer’s disease she found a way to turn her sadness into a book.

Smelley, a licensed clinical social worker and adjunct faculty member in LSU’s School of Social Work, has written, “The Girl, The Star and The Spider.”

As the cover of the soft-bound book says, it’s a “fairy tale for grownups dealing with Alzheimer’s and similar dementias.”

The simply, but well-written tale conjures a thread of magic and meaning to comfort those dealing with the devastating illness that slowly but steadily robs sufferers of their memories, personalities and eventually their ability to respond to their environment or control their movement.

“People lose themselves. The individual does disappear slowly, slowly,” Smelley told an audience of caregivers in November at the “Alzheimer’s Disease: Finding Your Way” program presented by Alzheimer’s Services of the Capital Area.

The event was held Nov. 19 at the Pennington Biomedical Research Center.

Smelley talked about her mother’s experience and about love and grief.

Her mother, Alice Van Atta, was already beginning to show signs of memory loss when Smelley’s father, Bob Van Atta, a clear-minded and active 90-year-old died in 2001 after a fall, Sherry Smelley said.

“My dad was her rock,” Smelley said of her mother.

After the loss of her husband, Alice Van Atta seemed to quickly decline, her daughter said.

“The decline was rapid. It was almost like she jumped off a cliff,” Smelley said.

Her mother lived in a nursing home the last seven years of her life and in the final six years was unable to talk, Smelley said.

Caregivers of those with dementia struggle with feelings of grief for a long time over the course of the illness, she said.

“When our hearts hurt a long time without end, there is chronic sorrow,” said Smelley, who has counseled terminally ill persons and their families for more than 20 years and teaches graduate classes in grief and bereavement and undergraduate classes in aging, at LSU.

Grief, however painful, is healthy and normal, she said.

It’s an “expression of love. It is the ransom paid to love,” she said.

“The only way to avoid grief is to avoid love; that is unthinkable,” Smelley said.

“If we’re closer to that person … the grief will be larger,” she said.

In her book, “The Girl, The Star and The Spider,” a young girl has her wishes for safety and love and a family granted, but with a caveat — when she is very, very old, her memories will begin to disappear.

There is still triumph for the girl, at the end.

While it doesn’t mention her mother in the book, Smelley said that the story is based on her mother’s life.

Like the little girl in the book, Alice Van Atta and her 11 siblings were put up for adoption by their impoverished father, after his wife died, Smelley said.

The book, which is available for $6 on Smelley’s website, http://www.SherrySmelley.com, was illustrated by Dallas artist Christine Anderson Guldi, Smelley’s good friend since first grade.

It was published by the online publisher, Createspace.com.

At her presentation at Pennington, Smelley encouraged caregivers to take care of themselves, to maintain a good support system with friends and family, to exercise and to find times of respite for themselves.

She also suggested they find outlets for their pain and grief, such as keeping a journal, writing poems or drawing.

Smelley said that she came across an old weathered book, before her mother died, in a box of books the family had packed.

In the front of the book, in her mother’s handwriting, were the words, “Read 427.”

Smelley turned to page 427 and found the poem “Remember, ”by Christina Rosetti:

It reads in part:

“… Remember me when no more day by day

You tell me of our future that you plann’d:

Only remember me; you understand

It will be too late to counsel then or pray.

Yet if you should forget me for awhile

And afterwards remember, do not grieve:

For if the darkness and corruption leave

A vestige of the thoughts that once I had,

Better by far you should forget and smile

Than that you should remember and be sad.”

Smelley said that “somehow, this gave her voice back to me and I had not heard it for a long time.”

“I started writing letters to my mother and would read them to her while visiting,” Smelley said.

“At some point, I began to write letters from her to me,” she said, sharing one such letter with the audience.

“My dearest daughter,” it said. “You knelt by my bed reading poetry and prose. I do love that.”