TAMPA — The first shock was hearing the doctor say: “Your husband has Alzheimer’s.”
But what followed for Leslie Harvey over the next three years until her husband’s death was something she wasn’t prepared for, “not in any way.”
“Unless you’re going through it, no one can possibly understand. Not your best friends, not your family members,” says the Tampa woman. “You feel like an island.”
To help her cope with the emotional and physical stress of taking care of a loved one with Alzheimer’s, Harvey turned to the Caregivers Sanctuary, a faith-based support group that meets at noon on the second Tuesday of the month at Hyde Park United Methodist Church in Tampa. It is one of several groups in the Tampa Bay area that offer free educational help and emotional support in dealing with dementia.
And that’s a good thing: Statistics show that 65 percent of caregivers die before the person they are caring for succumbs to the disease.
Harvey, who was married for 23 years, admits it isn’t a club you want to be a member of, “but you can’t do without it.”
“We laugh, we cry, and we just feel better when the 90 minutes are over,” she says. “Now that my husband is gone, I’m still coming, because I want to be a support for others going through what I did.”
According to the Alzheimer’s Association, more than 5 million Americans are living with the disease. Millions more are affected by it, however.
“Caregivers will bear the brunt of it,” says Eileen Poiley, director of education at the USF Health Byrd Alzheimer’s Institute. “The first inclination is to think, ‘I can handle this by myself.’ By the time they learn they really can’t, it’s too late. They’re burned out and at risk themselves.”
She compares the caregiver’s responsibility to that of a passenger on a plane: Put the oxygen mask on yourself first, so you can be of help to others.
“Educate yourself. Don’t insolate yourself. And build a support system with people who understand,” she says.
Poiley had no idea when she went into this line of work in the late 1980s that she would one day have a personal connection to it. Her father died of Alzheimer’s last year.
More people will be in Poiley’s situation as baby boomers grow older. The Alzheimer’s Association predicts that by 2025, the number of people 65 and older with the disease will reach 7.1 million — a 40 percent increase from today’s figures. And by 2050, it will be 13.8 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.
“There’s a tsunami coming,” says Eric Pfeiffer, author of “The Art of Caregiving in Alzheimer’s Disease.” The Tampa physician is considered a pioneer in dementia research, and is a nationally known expert on health and aging issues. “It’s going to wipe us out financially. And the toll it takes on caregivers is something that is so hard to measure. We just know it’s astronomical.”
Support groups were unheard of when he began working in this field 30 years ago. Now that they are available, “take advantage of them,” he says.
Support “is the centerpiece of caregiving,” he says. “There’s no shame in realizing you can’t do this alone.”
Mimi Buderus, a volunteer facilitator at Hyde Park’s Caregivers Sanctuary, spent 24 years caring for her parents, who both died of Alzheimer’s.
Her experience led her to leave a career in human resources and open a Right at Home franchise in Tampa, which provides in-home care and assistance.
“It takes a village to help caregivers with this disease. But we have to start with getting over our fear of it,” she says. “It’s here with us, we have to deal with it and we have to talk about it. Because at some point, most every single one of us will be affected by it in some way.”