February 9, 2007

Aging Connection

Alzheimer’s Disease (Part I): a personal journey

By Vivian Silva
Special to the Times

Caregiving can be exhausting and stressful. Hopefully within our role of taking care of our loved ones, we can find moments that we’ll cherish for as long as we can remember.

I have a deeper compassion for caregivers since I’ve watched my mother care for my father, who passed away recently. I’ve been asked to chronicle my own personal journey and observations of my father’s battle with Alzheimer’s disease and this is the first of three articles regarding my own personal journey.

The first time I really understood that my father had Alzheimer’s was when I was leaving his garage and went to turn off the light. Painted next to the light switch was an arrow pointing up next to ‘on’ and an arrow pointing down for ‘off.’
With a knot in my stomach and sadness in my heart, I cried as I drove home. That incident was about five years ago. As a gerontologist, I knew what was to come.

I dreaded the havoc that this disease might bring to all of us. Should we bring in someone to help my mother care for him? “No way!” he’d likely shout. Or, what if he would need a secure or locked Alzheimer’s unit? “Over my dead body,” I could hear him say.

When a caregiver calls to ask for help with their parent or spouse, often they say, “My parent (or spouse) is very difficult, and I just want to prepare you because I can’t get them to listen to me about…” to which I always answer, “I can’t imagine anyone more difficult to work with than how it might be if I were working with my own father.”

My dad, the macho cowboy and former prizefighter, documented his hunting trips with film and loaded his own shotgun shells. His basement was his private getaway. He loved all his buddies from the Navy, deer hunting, fishing and the old childhood friends from the Italian neighborhood where he grew up in Santa Clara.

Their photos were tacked everywhere in the basement. He had enjoyed a lifelong passion for photography, so he took most of them himself.

He documented when one of his friends died. He told me one time that 18 of his buddies had died—he always knew their names. However, the disease eventually took away his memory and one day when I was chatting with him in the basement, he began to point to his Navy comrades one by one to tell me their names.

With a frown and a confused look on his face, he said, “I can’t remember all of their names. I just don’t know anymore. My brain isn’t working.” This was another day I cried driving home.

His friends meant the world to him, but eventually he wasn’t able to reminisce like he had always enjoyed doing. He kept dated scrapbooks and photo albums of all his friends and the activities in his life that gave him pleasure. These were the subjects his four daughters used to engage him in conversation until it became too challenging for him.

A country western movie fan, he watched all the reruns on television. But, what did change because of the Alzheimer’s disease was that he often turned off the sound. Was it because the sound provided too much stimulation for his brain? Perhaps. Or that he couldn’t focus on the story anymore? Probably not.

My family was in denial at the beginning of his disease. They didn’t notice the subtle changes in his behavior. I educate others about normal and abnormal aging; but, I was failing to get my mother to admit there was a problem with her own husband.

My father began to fixate on certain foods. For a time, he insisted on cooking steak every night for dinner. A few times my mother came home from a meeting to find a smoke-filled kitchen. My father had forgotten to stay at the stove while cooking his steak and wandered into another room of the house.

Soon he became fixated on Burger King’s cheeseburgers. He’d take off and walk to the El Camino Real, which was almost a mile away. A physically fit walker, he’d get there okay but after a while he simply couldn’t find his way back home.

Reminding my mother that he was at risk for getting lost, she thought he’d be fine. She wasn’t ready to face what changes like this would probably mean for the both of them. So, I knew I had to take action. I ordered an I.D. bracelet from the Alzheimer’s Association. If he couldn’t find his way back home, the police would be able to access his contact information on the system wide network.

I don’t even remember the words I used to convince him to wear the bracelet but he did. I just remember thinking that I had to be strong because he was a not a “macho” John Wayne wannabe anymore and remember not to use the term bracelet.

(To be continued.)

For more information about Alzheimer’s Disease visit the Northern Calfornia and Northern Nevada Chapter of the Alzheimer’s Association web site at www.alznorcal.org or call (800) 272-3900.

Vivian I. Silva, Gerontologist/ MSW is the director of Geriatric Advisory Program at Almaden Valley Counseling Service. The service educates and advises adult children and elders on aging issues and provides individual and family consultation. For more information call (408) 975-2988 or e-mail vivsilva@aol.com.