Breaking taboo to talk loudly about Alzheimers disease

Goeller family is adjusting to life-changing intrusion by addressing it head-on

By Gail Goeller,
Special to the Spokane Journal of Business
January 10, 2007

CBS News reported late last year that Alzheimer's disease is surfacing in a younger populationas many as 600,000 people under the age of 65, and still growing. For my family, the statistic is personal.

When my husband, John, was diagnosed with early-stage Alzheimer's disease (AD) in October 2004, he was just 62 years old. Though I had been quietly cultivating hunches about his out-of-character behavior, not until blood tests and a spinal tap rendered the verdict could weJohn, our adult children, and Ibelieve this was really happening.

John had drawn the joker card, suffering the same malady from which his mother died. Our lives changed forever. We grieved; we grieve.

Choosing to be open regarding his diagnosis, we shared the news with others. Some embraced us; others ran for the hills. We were educable: Akin to the taboo frequently invoked in our culture regarding discussions of aging and death, we realized that talking about Alzheimer's was tricky. Some friends and acquaintances of similar age would confide occasional fears about their own memory lapses. Others were skeptical about his diagnosis or rushed to reassure us that we would be delivered a miracle. At this stage of the game, the most helpful responses were, "No fair! What a blow," and, "How can we be supportive? Please keep us in the loop."

"People don't want to deal with the subject of Alzheimer's," asserts psychologist Darrelle Volwiler, who owns Spokane-based Volwiler Counseling, which specializes in issues related to aging and coping with chronic illnesses. "Everyone avoids it, including many primary-care physicians. And the younger the afflicted, the more in denial are families and some health-care providers."

Also, the families of many AD sufferers are ill-prepared to make the necessary lifestyle changes because their afflicted relative might not qualify yet for Medicare and Social Security, Volwiler says. Hence, family members frequently are left to their own to research eligibility for alternative funding sources such as government disability benefits.

Early diagnosis is critical.

"To be diagnosed with ADmemory impairment is mandatory, but other behavioral changes are also at work such as confusion, difficulty with speech, poor organization, and ability to complete tasks which are routine," says Volwiler.

"Diagnosis is imperative for two reasons. For those who fear they might have Alzheimer's, it can be that they are having memory lapses because of depression or other medical problemsor just natural aging," she says. "For the person with Alzheimer's disease, early diagnosis gets the patient and their family on the road to education, allows them to prepare for a somewhat-known future, and access drug therapy that can slow the disease."

Because John's disease was discovered early, our family has been able to take preparatory steps and enjoy memorable family outings that aren't available to those who wait until the intermediate or late stages of the disease. Our "kids" and friends, for example, helped us move to a home where we can live on one floor if necessary. On the recreational side, we went to Oregon in 2005 for a week's family vacation at Belknap Hot Springs, and then last summer, our son, Greg, facilitated a 10-day rafting tripparamedic buddies includedon the Rogue River with his dad.

Also, our daughter, Kaaren, and John bike and attend concerts together. Similarly, our children's spouses pitch in at the drop of a hat. (Did I mention how lucky we are to have our adult children and their families in town?) And friends upon friends are ever there, letting us train them that it's okay to talk about AD with us. Health-care professionals, such as Dr. David R. Greeley, of Northwest Neurological PLLC, are our rudder.

Fortunately, the progression of John's disease has been gradual. Yes, there are frustrating and despair moments for melike needing to repeat things, or take over for some of the tasks John used to perform so easily. The emotional gauntlet I have endured since a medical professional finally confirmed what I new in my heart about this man I have know 48 years has been daunting. I miss him already.

But there also are sweet moments. Like John bringing me coffee one morning, along with a request. "Please take this seriously," he implored. "When I get to a stage where my Alzheimer's is destroying your life, I want you to let goto find a place that can handle me." Likely not until that day arrives will I fully appreciate his offer, because today we live mainly in the moment, anticipating the future while not saturating ourselves with the ultimate negative pictures. Understanding that when things get tough and emotions are running amok, I can reach into our memory bank savings account and feel assured, not guilty, about honoring John's wishes.

Having witnessed my mother-in-law's journey with AD, occasionally we are plagued with an imaginary horror show or two. But at this point, we are taking good care of ourselves. John remains hopeful about possible medical discoveries and has followed his doctor's advice to get in the best medical shape he can. I continue to write, lead an occasional seminar, and spend as much time as possible with grandchildren. Today we live mainly in the moment, anticipating the future while not saturating ourselves with the ultimate negative pictures.

No context is exempt as this cruel disease continues its march. Acknowledging that there's no way to fully control any process in aging, what can we do besides hope and pray that research will carry us and the generations to come to higher ground?

For starters, I would say the following to others in my shoes. Do your homework. Learn all you can about this disease, and research the research. Share concerns with your loved one, especially if they are early stage, or just beginning to demonstrate AD behavior. Run hypothetical scenarios to prepare mentally for whatever might come. Laugh with each other when something's funny.

At work, acknowledge that elder-care issues are on the increase. If some employees are dealing with a spouse or parent with AD, lend support where possible. Become an activist. Volunteer at the Alzheimer's Association chapter here or participate in its Memory Walk this fall.

Stay hopeful, but not nave. Join me in helping demystify this dark disease by shedding more light on it.

Gail Goeller co-founded Spokane's Directory for Seniors and Their Families and is the author of "Coming of Age with Aging Parents."

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