As the numbers afflicted with Alzheimer’s Disease continue to swell, so do the legions of loved ones caring for friends and family members. And the health of those caretakers has become a focus in the Alzheimer’s community since there’s no cure on the horizon for debilitating memory loss. Even loved ones leaning on professional help still need support to endure what’s been dubbed "the long goodbye."
"I’m finally at the point where I’m beginning to put my life together after three years," says Vicki Bartholomew of Nashville, talking to the women in her monthly support group. "But my husband’s still living, and now I’m in an even more difficult situation — I’m married, but I’m a widow."
Bartholomew started this gathering informally because she needed it herself. In this sisterhood, the women each have husbands with Alzheimer’s at varying stages. Today’s topic: when is it time to move them out of the house?
They draw the shades on a small conference room and open up.
Even those no longer responsible for the day-to-day caretaking have a complicated existence. Bartholomew’s husband — a former prominent attorney — was one of the first residents at Abe’s Garden. It opened in West Nashville during 2015 and — given the demand — filled up quickly.
And now, the facility is hosting support groups for caregivers, who go through a very particular kind of pain caring for a loved one who no longer remembers who they are. The Alzheimer's Foundation of America has also focused its efforts on caregivers, with an educational conference touring the country that stopped in Nashville last month.
A loved one’s body may seem to be in working order, but the mind is betraying both partners. And the person could even become violent toward you at times. Bartholomew says lifelong friends aren’t sure what to say or how to help.
"They’re still wonderful friends, but they didn’t know how to handle this. It was hard for them, and as you all know, your friends don’t come around as much as they used to," she says. "I was in bad shape. I didn’t think I was. I did have health problems, and I know I was depressed now."
Bartholomew figures she must be getting better because now she can remember her husband the way he used to be — when he could care for her. Increasingly, she’s become an advocate for caretakers, advising them not to crush their soul trying to keep a loved one at home.
But some are adamant. An estimated 16 million Americans are unpaid caretakers for someone with Alzheimer’s. Pam Hawkins says it’s a struggle she signed up for when she said "til death do us part."
"He’s not going anywhere. He’s staying at our home until he moves to heaven. We made that decision a long time ago," Hawkins says. "I haven’t compared the prices, and I don’t know, but it’s expensive to stay at home."
A home health aid is almost always at the house. And she knows eventually, it will be 24-hours-a-day.
"I’ve had some issues at night that I had to take care of alone. But I’m not ready to have anyone there at night," she says.
Often, the nights become a breaking point for caregivers. Alzheimer’s patients will pace the house or wake up their partner every few minutes, confused about what’s going on. Or worse — they leave.
Pressure To Stay Home
"It was not possible for us to keep Joe at home. I mean, it just wasn’t an option for us," says April Simpkins, adding that her husband was inconsolable at times.
Just before Joe came to Abe’s Garden, she’d be up all night calling his siblings so a familiar voice could calm him down. Or he would be yelling in the hallways of their condo building. Once, she even had to dial 911.
And yet, she felt some pressure to almost become a martyr.
"I feel like a lot of times, there’s a lot of — for lack of a better word — glory given to the whole idea of someone being long-suffering and staying at home and caring for their loved one and giving up their life basically," she confesses to the group. "It makes it harder for people who can’t do that."
There’s almost nowhere else caretakers can talk this candidly and be fully understood.
These caretakers also find a way to share in the humor of it all — a husband wearing a laundry-basket’s-worth of shirts and pants because he forgets he’s already gotten dressed. Even swapping tips on how to keep down the odor from incontinence comes with a loving laugh.
The session ends with hugs all around, and then back to reality. Simpkins buzzes beyond the locked doors and through an open courtyard to eat lunch with Joe.
Simpkins drapes an arm on her husband’s slumping shoulders — an otherwise spry-looking 66-year-old, a former state employee. She directs him to use his fork and pick up a strawberry as Joe interjects with an unrelated comment.
"Yeah," she sighs, "some days are clearer than others."
Between work and errands, Simpkins tries to stop by most days. But she says it’s a terrible kind of blessing that when she misses a visit, Joe no longer notices.