Karen Russell watches her husband Bill, who has Alzheimer's disease, wander through their backyard in Watsonville on Friday. (Kevin Johnson/Sentinel)
APTOS -- More than 1,000 walkers are expected to participate in the 20th annual Santa Cruz Walk to End Alzheimer's at 10 a.m. Saturday at Seascape Park to raise funds to find a cure for a disease initially diagnosed more than 100 years ago and is now the nation's sixth-leading cause of death.
More than 5 million families in the U.S. are coping with caring for a loved one with Alzheimer's, a disease that progressively and relentlessly erodes thinking and language skills, long-term memory and the physical ability to independently perform activities of daily living.
Last year, 15.4 million caregivers provided more than 17.5 billion hours of care valued at $216 billion, according to Patty Guinto, director of communications for the Northern California and Northern Nevada Alzheimer's Association chapters.
The personal cost, emotional as well as financial, can be devastating to a family caregiver even as their love for a relative remains steadfast. Watsonville resident Karen Russell knows this all too well.
"I am a prisoner in my home," said Russell, 57, a cafeteria manager at Pajaro Valley High School. "I go to work and then come home to care for my husband who doesn't know who I am."
William Russell, 59, diagnosed with Alzheimer's three years ago, worked at Graniterock in Watsonville for more than 28 years where he drove a concrete mixer and poured concrete. About 200,000 Americans younger than age 65 are diagnosed with younger onset dementia, Guinto said.
A gifted mathematician, five years ago William gave up doing the family taxes realizing before others that his cognitive abilities had significantly declined, his wife said.
Karen and a caregiver who works 40 hours a week help William take a shower, dress, eat and brush his teeth as well as ensure that he doesn't hurt himself as he paces throughout the home rediscovering his surroundings each day.
"To watch this smart man turn into someone who is dependent on me is just too much for anyone to understand the impact," Karen said. "I have lost my partner who I shared my feelings with and family celebrations. He can't have a conversation with me."
After William took his shirt off in a local hardware store three months ago, Karen said she no longer feels comfortable taking him to do errands or to have a meal at a favorite restaurant.
Last week Karen and William marked their 36th anniversary. And although Karen said that she deeply loves her husband, she often feels isolated, lonely and depressed given her overwhelming responsibilities and sense of loss.
"We both had so much to look forward to," said Karen who visits her recently married 30-year-old daughter, Leslie, in Mar Vista in Southern California whenever possible. The increasing cost of William's care limits the opportunity for vacations and entertainment. Karen spends up to $3,000 a month for a caregiver and anticipates the cost will soon double. "The disease has taken both of our lives."
Karen is considering placing her husband in an assisted living home in the future, but for now she wants him to stay in their home, close to her where she can better monitor his care.
Santa Cruz resident Kimlin McDaniel Keith, 54, a registered nurse, has also proven to be a resourceful "care manager" for her spouse, John McDaniel Keith. John Keith, 62, a former software engineer at Creative Technologies was diagnosed as having Alzheimer's nearly four years ago. The couple has been together since 1977.
"I have learned to be inventive and quickly respond to the new normal," Kimlin Keith said. "Time is short and John and I focus on living the best life now and not on the future, and that perspective can be a gift."
John Keith continues to be able to take 25-mile bike rides but now a neighborhood teenager joins him and John wears a global positioning system device and he also walks dogs assisted by a volunteer at a local animal shelter.
"I have learned to adapt to a shifting landscape," she said. Kimlin Keith left her job as a labor and delivery nurse at Dominican Hospital for a Santa Cruz County health care position assisting uninsured hospital patients that enables her to be more nimble in responding to her husband's needs.
IF YOU GO
Walk to End Alzheimer's
WHERE: Seascape Park in Aptos
WHEN: Walk begins at 10 a.m. with registration starting at 8:30 a.m. Saturday
PURPOSE: To heighten awareness of Alzheimer's disease and to raise funds for care, support and research to find a cure.
DONATIONS: Visit alz.org[1]
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