A closer look: One couple’s experience
Soon after Nancy Niles retired from her administrative role at Moffitt Cancer Center’s thoracic unit in 2019, her life changed in ways she could not have anticipated.
She and her husband of nearly three decades were empty nesters and their life was “pretty cool.” Niles knew her husband had become increasingly forgetful, but she didn’t give it much thought.
“We had long, serious conversations regarding finances and a family illness, but he denied we had ever discussed those matters,” she recalls. “The biggest red flag was when he went to drop off our dogs at the veterinarian’s office, which he had done hundreds of times before. He was gone a long time and came back with the dogs. He was upset because he said he’d been driving around trying to find the vet’s office but couldn’t remember where it was.”
He was a few years older than Niles — 79 at the time — and she attributed his forgetfulness to aging. The following year, he was diagnosed with vascular dementia.
“I understood his memory was going to fade, but I didn’t understand this also was affecting his ability to make decisions,” she says. “No one in my family or anyone else I knew suffered from dementia, so I didn’t understand how this affects comprehension, the ability to use logic. Sometimes my husband knows where the silverware goes, sometimes he doesn’t. Memory loss, to me, meant he just didn’t remember what he had for breakfast that day. It is so much more than that.”
Niles also quickly came to the realization that after sharing all of the household responsibilities throughout their marriage, “All of a sudden, you’re in charge of everything. If the garbage is full, he can barely manage taking it to the street,” she says. “When I ask him to feed the dogs, he wants to help but he just turns around in circles, unsure of what to do.”
Another challenge Niles has faced — also common among caregivers — is isolation.
“As their world shrinks, yours does as well,” she says. “They can’t attend church, so you can’t either. Travel becomes a problem because of restroom stops — there are no family restrooms available — and staying in a motel can be problematic as they need their familiar surroundings. Going out to eat is a problem because the restaurant can be too cold or too loud.”
For the past year, Niles has had help from a certified nursing assistant, which means she can occasionally get out of the house for errands or visits with friends.
“It makes me a better caregiver, especially if I’ve been with other people, because I go home refreshed,” she says.
She strongly advocates joining a caregivers’ support group — though she describes herself as typically “a very private person.” For the past two years, she has been a regular participant in the virtual monthly support group meetings led by Eileen Poiley, director of education at the USF Health Byrd Alzheimer’s Center and Research Institute.
“I have family, I have friends, but nobody really understands this unless you are living it,” she says. “I was always one of those people who was so private. But I also realized I was about to go under and I needed support. The support group and Eileen’s podcast have served as a lifeline for me.”
She is grateful that, unlike many other caregivers, she has not experienced anger and hostility from her husband.
“He’s been very, very sweet, and that has been very strange, because so many people have warned me how agitated dementia patients can become,” she says.
What she has had to contend with over the past four years is grief.
“The man I’m with today,” she says, “is not the man I married.”
