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Volunteer helps nurture patients' memories

August 2006 Enterprise article by Pam Eimers

Friday and Saturday nights, for as long as Ed Lindley can remember, his family gathered around the piano. For two hours his sister played their favorite hymns, and their voices harmonized together in their Midwest home. Today-some 25 years later-Ed has vivid memories of his mother singing these familiar hymns, even when she could no longer remember his name.

"That hurt," Ed recalls. At the time he didn't know that this dichotomy of memory is in fact normal for patients with advanced Alzheimer's disease and other dementias. As the disease progresses it affects the brain in various ways, causing changes that are revealed in often confusing behaviors such as remembering a song but not a loved one's name.

Ed Lindley lives in Dixon now, retired from a Vacaville food manufacturing business. Since 1995 Ed has been a Patient Care Volunteer for Yolo Hospice.

He was drawn to this work to honor his mother. "I truly enjoy working with people with dementia," he says. And he understands firsthand how complicated communication becomes for dementia patients and their loved ones.

Think of the brain as a collection of filing cabinets where everything a person has learned or experienced in life is stored in a neat and orderly fashion. Now imagine removing files and destroying them, a few every month, until no files remain. That is what is happening to the person with dementia. The memory and language region of the brain is first affected, while the area regulating singing remains until much later.

Communication is a dilemma for patients and family members. At first common words are forgotten, then forming or understanding sentences becomes difficult. Later the patient has few words to draw on and may rely on a single phrase to convey myriad thoughts, feelings and needs. In time, whole blocks of information or recall are lost.

It's important to remember that the patient is doing the best she can. For the person with dementia the words, information, memory or name is simply not accessible. Caregivers must find ways to talk and interact with patients to facilitate communication.

For his part, Ed has developed a very effective, rewarding way to achieve this. When he visits a patient, Ed takes along a large picture book to help trigger old memories or word recall.

Turning the pages, a patient may spot, for instance, a picture of a tree. The patient remembers a wonderful climbing tree that shaded his back yard. By watching the patient and listening carefully, Ed is able to understand that there is something there the patient wishes to share. At a minimum, the patient enjoys the visual stimulation of things she may not otherwise see. At times the exchanges can be deeply satisfying, however brief they may last.

Family members and caregivers can do much the same thing with old photos or memorabilia, keeping in mind that as the disease progresses, their loved one is going back in time. Grandchildren may be viewed as strangers every time they visit while a spouse may be mistaken for a sibling. At the same time, the patient may recognize childhood friends or recall old war stories.

Late-stage dementia due to Alzheimer's and related disorders is a terminal diagnosis, qualifying the individual for hospice care. Whether the patient remains at home with the family providing care, or lives in a nursing home, hospice provides comprehensive comfort care and support services, including trained volunteers, like Ed, who offer companionship to the patient and provide a welcome break for the caregiver.

About his hospice volunteer work Ed says, "I'll keep working as long as I live. It means so much to me-I almost get goose bumps now just talking about it."

Yolo Hospice cares for patients in Yolo and Solano Counties and area of Sacramento, Sutter and Colusa counties. For more information about hospice services or volunteer opportunities, call Yolo Hospice at 530-758-5566.

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Quotes

Judy Alexander
"What I am always taken by in this work is people's willingness to become exactly who they are - to be real and completely present to what each moment brings, as if each moment were a gift."
~Judy Alexander, RN, CHPN, Director of Patient Care Services