Get-togethers provide 'therapy' for men caring for spouses with dementia.
URBANA — By the time Jack Gillespie had to turn the care of his wife, Norma, over to a nursing home, he'd lost 40 pounds taking care of her himself as Alzheimer's disease steadily wasted her brain.
His friend, Chuck Cowger, had two heart surgeries during the years he, too, cared for his dementia-stricken wife, Jan Hartman, at home.
Both men were worn out, but they agonized over relinquishing the care of their spouses to someone else.
When the day arrived for Gillespie to move his wife, Norma, into a nursing home, he recalls, "I cried like a baby after I got home — and several days after."
Gillespie, 81, and Cowger, 75, both of Urbana, met when each of their wives spent time in a program at Circle of Friends adult day center in Champaign, and ended up talking over coffee.
"Jack was really torn up that he had to put her in residential care," Cowger recalls.
They've since formed an informal coffee/support group with seven other men. All the guys range in age from their 70s to their 90s and have one thing in common: They're all husbands or widowers who are, or were, taking care of wives with dementia.
They get together once a week at a local restaurant and talk about their wives, the loss of their wives, care decisions, "everything," Gillespie says, "anything to get the pressure off."
There are still more women then men caring for loved ones at home with Alzheimer's. But the number of male caregivers doubled over 15 years, from 19 percent to 40 percent, the Alzheimer's Association found in 2012.
The organization hasn't taken another look at whether the number of male caregivers is poised to grow more, but in a new report last month it detailed the heavy toll the disease is taking on women. Nearly two-thirds of Americans with Alzheimer's are women, and the lifetime risk for developing Alzheimer's for women is 1 in 6 — compared to 1 in 11 for men.
Kathy Rhoads, co-director of Circle of Friends, says that day program for the elderly has its own Alzheimer's support group, but she was happy to see these men forming their own group to extend extra support to each other.
Oftentimes women are accustomed to being the caregivers because they raised the children, she says, and it can be more difficult for men to take on that role.
Men tend to want fix things, Rhoads said, and Alzheimer's is a disease that can't be fixed.
"I think it's difficult for men, because they can't fix it," she says.
In sickness and health
Jack Gillespie, a retired University of Illinois electrician, first met his wife when he came back from Korea. Married 59 years, they raised three children together and had "quite a life," he recalls.
When the Gillespies retired, they sold their home to their daughter and set out to see the country in a motor home.
It was during their travels that Gillespie started seeing signs of memory lapses and confusion in Norma. Always great with their bank statements, she was suddenly having trouble with one. She wouldn't know what state they were in, he said.
After Norma Gillespie was diagnosed with Alzheimer's disease, the Gillespies came back to live in Urbana, and Jack Gillespie took care of his wife at home for about six years until 2010, gradually taking over the cooking and Norma's personal care as she could do fewer things for herself.
As his wife became incontinent, Gillespie said, frequent changes and clean-ups became part of her care.
Lost sleep also became part of life. He would help his wife to bed at night and wonder if she'd stay there, Gillespie said, because sometimes she'd get up and wander about the house and lose her way. Sometimes she was up all night and slept during the daytime.
She eventually stopped reading and watching TV. He would take her out places — for walks, for ice cream — trying to fill in her life with some activity, but he has since realized filling in her time probably mattered more to him.
"It's you that thinks they need to fill in the time," he said.
After his wife began needing a wheelchair, Gillespie said, he couldn't keep up with her care any more at home. But he continued seeing her twice a day at the nursing home, always feeding her lunch and dinner.
Before she passed away in January 2013, Norma had stopped recognizing him as her husband, Gillespie said, and "the Norma I knew was long gone."
"The bad part of this is even after all this, the guilt doesn't go away," he says. "You always think you should have done more."
Cowger, a retired social work professor, says he sees his wife, Jan Hartman, every day at a nursing home.
Married 26 years, they share eight children from former marriages, plus 20 grandchildren.
Before his wife was diagnosed with frontotemporal dementia (disorders caused by the progressive degeneration in the brain's frontal or temporal lobes) in 2005, Cowger can remember making excuses for signs of the illness in her that he didn't want to see. As his wife's disease progressed, she gradually lost her speech and language, and then her memory.
Until a year ago, she still played the piano, but she hasn't recognized him for two years, Cowger says.
"You lose a little every month," he says.
In the years he cared his wife at home, Cowger said he needed to put fake keys on her key ring to keep her from driving, and remove the handles from the microwave oven. He learned to keep her occupied at times by emptying out underwear drawers so she could re-sort and fold everything.
He installed side rails on the bed and new locks on the doors to keep his wife from wandering out of the house, but still, he says, "she was an escape artist."
Incontinence and frequent clean-ups also became part of his wife's care, Cowger said, and while he was involved in the care of his children when they were young, it's just not the same doing some of those things for a spouse.
Looking back, he says, "I probably took care of her longer than I should have."
He was going to continue with being the caregiver after he underwent triple bypass surgery, Cowger said, but his coffee group helped him realize it was time to seek out nursing home care for his wife in 2011.
The group members have been at that point, he said, and the message they gave him was "It's somehow OK, that you can't do that any more."
Delaying a move
A day program for the elderly can help delay a move to a nursing home by helping both the person in need of care and the caregiver, Rhoads says.
Circle of Friends, for example, provides seniors who need monitoring and socialization a day of programs and services, and also gives the caregivers some personal time and support.
"Caregivers don't want to put their loved ones in a nursing home," she says.
Gillespie and Cowger say picking up care tips, such as how to change disposable undergarments without removing pants and shoes, helped them along the way.
They also gained a big appreciation for nursing home staffs and the job they do, both men said.
Gillespie brought in homemade brownies for the staff at his wife's nursing home and Cowger also brought in brownies, though, he adds, "I took Sam's."
"Some people don't even look at the staff," Cowger marvels.
One thing that didn't help, Cowger says, was people telling him to take care of himself.
"What does that mean?" he asks. "Do you ask friends to come stay with your wife so you can go out and have fun?"
It's a constant theme in their group, he and Gillespie say, the difficulty asking for help.
"You don't want somebody to see how bad off your wife is," Gillespie says.
What he and Cowger do encourage is for other men in their situation to seek support, as they have, with others who understand.
Their own group has increasingly become a group of widowers, Gillespie says, because five of them have now lost their wives. But you still need that support even when your wife passes away, he says.
"You really don't realize the therapy you get out of it," he adds. "It's really like letting a burden go."
Alzheimer's disease facts to know
— There are more than 5 million people in U.S. with Alzheimer's disease, 3.2 million of them women.
— Alzheimer's is the sixth-leading cause of death in the U.S.
— Risk factors for Alzheimer's disease are advancing age, a family history and genetics, and the biggest risk covers anyone with a brain — getting older.