Alzheimer’s sufferers and their loved ones struggle to live in the now.
By Jillian Tyler
Between Maine and New York is a 300-mile trek Elizabeth Jackson knows well. This is the route the 53-year-old takes on frequent visits to see her uncle Dave Zeglen. The mismatched pair, Jackson with mop-top curls and Zeglen with a shiny head, is extremely close. Their relationship sprouted in Jackson’s youth and continued into her adult life. So when Zeglen began to forget words such as toothbrush, Jackson instantly sensed something was off.
Having worked in a nursing home for many years, Jackson, whose calm presence and infectious laugh makes her a favorite among patients, has grown familiar with the gradual changes age brings—like the early signs of memory loss. Despite a series of red flags, she decided to chalk up her uncle’s memory lapse to fatigue and old age. But when the 78-year-old refused to talk about geography, his longtime passion, Jackson’s gut told her something was wrong.
“I began to recognize small things,” Jackson says. “He became more quiet and wasn’t engaged in conversation as much.”
Jackson confronted her uncle, but was surprised to learn he thought something was off too. He hadn’t told his wife yet, and had been relying on a stack of jotted notes to remember things. The pair decided to go to a doctor, knowing if it was simply old age, they could learn to cope with the changes together. But Jackson knew it was something more. Still, nothing could prepare her for the reality she was about to face, one that would permanently erase a lifetime of memories from her uncle’s mind. Zeglen had Alzheimer’s disease.
Dave Zeglen is part of an estimated 5.4 million Americans with Alzheimer’s, a chronic brain disease that damages cells and the connections between them. It starts in the region of the brain responsible for converting short-term memories into long-term ones. Then the illness progresses, eroding a person’s sense of time by stealing away old memories and preventing the retention of new ones. Enduring this degenerative process often means letting go of a past sense of self, while forcing others to accept their loved one for who they are at any given moment.
Zeglen’s sudden dependence on Post-it Notes is an initial symptom of Alzheimer’s. Everyday routines become a new challenge. Planners and calendars become key in helping Alzheimer’s patients remember their schedule, Dr. J. Riley McCarten, a professor of neurology at the University of Minnesota who works at several Twin Cities locations, says.
“It’s harder to maintain your social contacts, you tend to become isolated, and you’re physically inactive and mentally bored,” says McCarten. “It’s kind of a Petri dish for bad outcomes.”
Although adopting a new style of living enhances how Alzheimer’s sufferers cope with their illness, these changes can also force family and friends to recognize their loved ones will gradually become different people. Learning to accept the inevitable personality changes proved crucial for Lane Simonian, a soft-spoken teacher from Reno, Nevada, whose mother was diagnosed eight years ago.
“I’ve come to terms with the fact that this is not the person she was, but I’ve learned to relate to the person she is now,” he says.
Splitting the role of caretaker with his sister, Simonian admits he’s never considered placing his 89-year-old mother in a nursing home. Instead, he’ll take care of the woman who did the same for him when he was a child. This role-reversal is common, but comes with an enormous emotional strain.
“Alzheimer’s often places the caregiver in a constant state of ambiguity,” says Adine Stokes, a social worker at the N. Bud Grossman Center for Memory Research and Care. “The more comfortable they are with the fact that you don’t know what’s going to happen means it will be easier to move through the stages of the disease with that person and accept who they are at that moment in time.”
Finding comfort in the unknown is easier said than done, a truth that Zeglen’s petite, curly-haired wife, Sylvia, learned the hard way. While Jackson telephoned weekly to check in on Zeglen, Sylvia struggled to muster up the same type of support. Suddenly, post-retirement plans enveloped her in fear. For over half a decade she had acted as Zeglen’s other half, but now she no longer knew what would become of their marriage, or the role she played in her husband’s life.
“She was so scared and angry. It’s a disease that affects everyone in the household,” says Jackson of her aunt. “They’re starting to realize together what’s happening and they have become more of a team. Their definitions of each other changed. She eventually had to step down from wife and become caregiver.”
Today, the disease affects less than 2 percent of the country’s population. But as baby boomers enter the high-risk age range of 65-years and older, society will see an unparalleled increase—up to 5 percent of the population—in the number of people affected. By 2050, the Alzheimer’s Association predicts as many as 16 million American families will face situations similar to Jackson and Simonian. A few medications on the market can manage certain symptoms for short periods of time, but right now, there’s no cure.
But this truth hasn’t gone unnoticed. In 2011 President Obama passed the National Alzheimer’s Project Act (NAPA). The act calls for an investment of $156 million in research funding over the next two years, while also proposing additional investments from the National Institutes of Health. Overall, the bill will boost current research funding by a quarter percent and pave the way for increased awareness. But for those currently dealing with the illness, accepting present reality as one with no cure and no prevention isn’t an easy pill to swallow.
Accepting the Unknown
More than a year has passed since Jackson learned of her uncle’s diagnosis. Although the reality is hard at times, Jackson understands one day her uncle will no longer be able to recognize her or recall the memories they’ve shared. Despite this difficult realization, she vows to make the most of the time she has left.
“I’m visiting more and calling more while I can,” she says. “I’m sensitive to making sure I have time with him. It’s so important to do that as much as I can, while I can.”
Sitting in Zeglen’s living room, in the ‘50s-style house he has lived in for most of his life, Jackson treasures the small moments they now have together. The two spend time gazing out the large bay window at the perfectly tailored lawn as Zeglen identifies the birds outside—a new pastime he’s adopted.
Jackson flashes her signature smile as she watches her uncle perched in his overstuffed, worn ottoman, sporting his trademark golf socks, and reminds herself everything will be okay. She knows no matter what happens, some things won’t change, like her love for the person Zeglen has and will become.
“So many people talk about being in the moment,” Jackson says. “This is exactly what these people have, what Dave has. That’s all they have, is the moment.”