March 1, 2007

Aging Connection

Alzheimer’s Disease (Part 2): a personal journey

By Vivian I. Silva
Special to the Times

Alzheimer’s disease has been described as the longest good-bye. Over a five-year period, I heard my father struggle with his speech; watched his physical decline and worried about his cognitive functioning. He lived about five years with this disease.

His speech patterns began to change. He’d struggle to find the right words. At times he would hesitate before speaking. And, what frustrated my mother the most was when he’d ask her a question that she’d already answered. The repetition can be maddening for the caregivers.

Burning food on the stove can happen to anyone. But, repetition is the red flag. My mother would tell me the times my dad burnt food on the stove, or she’d walk into a smoky kitchen. I began to worry that my father would burn the house down or worse, burn himself.

He took care of his body so he could go deer hunting, which required walking miles. But, his gait changed. He faltered when he walked. After falling when getting out of his recliner, I noticed a note he taped to the lampshade near his chair—‘don’t cross legs.’

Years can pass before the family realizes the need for medical attention. At first the Alzheimer’s victim may cover up that he or she can’t remember where to put something or what to do. I noticed blank stares, yes glazed over and unfinished sentences. At times he never really answered my questions but had an evasive reply.

Bizarre behavior patterns began to emerge. He’d go to bed at 6:30 p.m. and wake up at 10:30 a.m. Mixing days and nights is a common behavior with Alzheimer’s disease, and I worried he’d get up in the middle of the night and walk out the front door. My mother said she’d hear him get up. One night she didn’t but in the morning found signs that he’d been in the kitchen.

My mother began to look stressed and tired. I worried about her as well. She resisted encouragement to hire a caregiver. “Your father won’t like someone in here he doesn’t know,” she’d say. “He’s got dementia and has poor judgment, ” I pleaded. “I don’t want you to compromise your health—just give it a try.”

Time for an action plan--I began to make phone calls to caregivers to get the rates and information for my mother. I asked her to write a two-week schedule of activities so we (her three daughters) could take turns staying with him.

Security didn’t last long. One afternoon, he walked to Burger King where he had a seizure. The police recognized the Alzheimer’s I.D. bracelet and accessed the emergency numbers. He remained in the hospital for 10 days but declined rapidly.

He yelled, screamed, swore and caused havoc. He was paranoid, hallucinating and threatened to sue everyone. The medications didn’t seem to help much—he became fixated on various tasks.

Hospital staff began talking about his release--perhaps home or a 24-hour care facility. We knew with his unruly behavior, my mother would not be able to care for him at home.

During the hospital stay, however, he had moments of clarity. I doubted that he had Alzheimer’s disease. My sisters also admitted their doubts. We were confused—one day an improvement, next day incoherent sentences.

The transition from home to hospital was a painful and sudden goodbye. I doubted he would be able to go back home. My mother couldn’t get him to eat at home so how would she be able to now?

The hospital discharge planner recommended hospice because he was not eating. Did he forget how to eat or was he consciously refusing as a way to end his misery? Or did he not recognize food that he once liked? I don’t really know.

What I do know is navigating the last goodbye was even more difficult than I expected; yet, there were some beautiful moments I will never forget. I will share those in my next, final column, on my father’s journey with Alzheimer’s disease.


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.