CBS News reported late last year that Alzheimer’s disease is surfacing in a younger population—as 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 we—John, our adult children, and I—believe 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 cast doubt on his diagnosis or rushed to reassure us that medical breakthroughs would deliver us a miracle. At this stage of the game the most helpful responses were, “Doggone it. What a blow.” “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, specializing 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.”
In addition, Volwiler maintains that families of early AD sufferers are less prepared to integrate necessary lifestyle changes because their relative may not qualify yet for benefits like Medicare and Social Security. Hence, family members are frequently left to their own to research eligibility for alternatives such as government disability benefits.
Early Alzheimers diagnosis is critical
“To be diagnosed with AD—memory 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 problems—or 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 trip—paramedic buddies included—on the Middle Fork of the Salmon 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 despairing moments for me—like needing to repeat myself, take over paper work, or help with tasks he used to perform so easily (no, I haven’t changed the oil yet but now I’m on a first-name basis with mechanics).
The emotional gauntlet I have traveled since a medical professional finally confirmed what I knew in my heart about this man I have known for over 48 years is daunting. I miss him already.
But there 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 go—to find a place that can handle me.” Likely not until that day arrives will I fully appreciate his offer and then I can reach into our memory bank savings account and feel assured, not guilty, about honoring his wishes.
Having witnessed the progression of my mother-in-law’s journey with AD, occasionally we are plagued with a late-night horror show or two. But at this point, we are taking good care of ourselves.
John remains hopeful about impending medical discoveries and has followed his doctor’s advice to get in the best physical 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 the premise 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 grounds?
For starters, I would say this to others in my shoes: Do your homework—learn all you can about this disease and hang out with a devil’s advocate or two. Share concerns with your loved one. Invite others to impart their perceptions with him or her rather than taking on the role of “representative” for others. Run hypothetical scenarios to prepare mentally for what ever might come. Laugh WITH each other when something’s funny.
At work, acknowledge that elder-care issues are impacting the workplace, especially those employees who are dealing with a spouse or parent with Alzheimer’s, and lend support where possible. Become an activist for AD. Volunteer at the Alzheimer’s Association chapter here or participate in its Memory Walk this fall.
Stay hopeful, but not naive. Join me in helping demystify this dark disease by shedding more light on it.
About the Author
Gail Goeller, with a Master’s Degree in Applied Behavioral Sciences, left a 16-year career as a management consultant and speaker to write, present seminars on eldercare, and is the author the book, Coming of Age with Aging Parents: The Bungles, Battles and Blessings
. In June 2005, her book was a finalist for the Book of the Year contest/Book Expo America sponsored by ForeWord Magazine and featured in New York City at the Jacob Javits Center.
Gail is a featured Senior-Preneur and an active advocate of Senior Approved Services.
