As the tsunami of baby boomers entering their senior years builds — and I am part of it — we must prepare ourselves for the reality that one in eight of us will develop Alzheimer's disease.
That is the current rate, with even higher numbers anticipated in the coming decades. According to an Alzheimer's Association's 2012 report, more than 15 million Americans are providing unpaid care for a loved one with Alzheimer's or related dementia.
Alzheimer's usually creeps in slowly, though in some cases decline is rapid. More commonly, affected individuals and their families have a long goodbye.
Today, we are telling the stories of two families who met each other at a Fort Wayne Alzheimer's support group. Their stories made me laugh — and cry. And though this disease has not yet directly impacted my family, I am better prepared if it does because of what they have taught me. You will be, too.
A few years ago, Jim O'Dwyer, now 68, thought cancer might claim his life.
An attorney, father of three adult daughters and husband to Judy O'Dwyer, the love of his life for more than 40 years, Jim was diagnosed with non-Hodgkin's lymphoma in 2007. It was devastating news initially.
“He told me later how once, after the diagnosis, he was home by himself and he wept,” Judy recalls. But the pity party was short-lived for the avid runner who embraces life optimistically and with practicality. He moved ahead with chemotherapy and radiation. Today he remains cancer-free.
The O'Dwyers, who lived near Columbus, Ohio, at the time, had been warned about “chemo brain,” a term used to describe the fogginess and temporary memory loss that can occur after chemotherapy. But Jim's memory loss was different. One day, he called Judy from his desk at the financial institution where he worked.
“He asked me if I could help him find the computer mouse on his desk,” Judy says.
Subsequent testing and assessment by doctors confirmed Jim had dementia and that it was not related to the cancer treatments.
At the encouragement of his employer he left his job and took Social Security disability. Judy continued working as director of Workforce Development at Ohio State University and Jim stayed home, helped with cooking and other household chores. He kept up his love of reading and running 4 1/2 miles a day.
But changes in his memory continued to affect everyday life. By 2009, the O'Dwyers knew they were living “a new normal,” Judy says. One day Jim drove to a meeting at a familiar place, but the normally 15-minute drive home took two hours.
“He said, 'I got lost. I couldn't find my way home,'” Judy recalls. Jim chose to quit driving that day.
As other aspects of the new normal descended, Judy and Jim sought to make the most of their time together. They took a trip to Ireland in March of 2010. Though Jim may today not remember that glorious week, Judy looks at the pictures and good memories flood her mind.
The new normal also included such unusual occurrences as the strange disappearance of the silverware.
“I came home from work one day and, when I opened the silverware drawer, the silverware tray and all the silverware were gone,” Judy recalls. “I asked Jim, 'Where is the silverware?' He said, 'Is it missing?'” Judy looked for it everywhere, even in the trash.
Then two weeks later, as mysteriously as it disappeared, it reappeared.
“I asked Jim, 'Where did you find the silverware?' ”
He responded, “Was it missing?” Judy tells this poignant story and others with laughter, a commodity required in abundance for those affected by Alzheimer's, she says.
In late 2010, the O'Dwyers moved to Fort Wayne, where they once lived, so Jim could be around people and places he knew in years past. They took a six-week class offered by the Alzheimer's Association for individuals newly diagnosed with dementia and for their loved ones.
“Learning Together” helps individuals and caregivers understand the physiological, emotional and social changes and challenges that lie ahead. Speakers address everything from what medications are currently available for slowing progression of the disease to caregivers' needs and legal issues.
Jackie Custer oversees Learning Together, as well as the support groups offered by the Alzheimer's Association, and says, “These families really get to know one another and some groups socialize outside of the meetings.”
Until early summer, the O'Dwyers attended the Graduate Group support group for early-stage individuals and their caregivers who have completed Learning Together. The O'Dwyers thrived on the shared knowledge and, more importantly, found a new circle of friends with whom to share laughter — and sometimes tears.
This summer, Jim's disease worsened suddenly. In July, Judy moved him to a long-term care facility with a specialized dementia unit. But the love and humor have not diminished.
When Jim complains about “this hotel not having a TV in every room,” Judy tells him to go to the lobby to watch it. He doesn't remember they have a grandson. He doesn't remember much of anything, but Judy points out, “He's not in pain. There are worse things. I'd rather have him physically pain-free and goofy.”
For now, Judy continues to attend the Graduate Support Group, even though the group is for the affected individual plus the caregiver. No one is suggesting she move on. This is family, related to one another through memories lost and friendship found, arm in arm navigating the new normal.