FINLEYVILLE – Larry Withum sits absently at the kitchen table, a spilled plastic cup of water in front of him, a guest going unacknowledged. Occasionally, the 80-year-old gazes at a colorful book on baby animals designed for toddlers.
In the next room, his wife, Gloria, is passing the time in front of a picture window being pelted with rain. Katie Couric's television talk show is cranked up, but Gloria is more preoccupied with quietly, assiduously grooming a doll she's holding in her left hand.
The Withums' daughter, Debra Masters, is taking care of them this afternoon, as she does three other days of the week. While she explains that keeping her parents in their Finleyville home as Alzheimer's disease consumes both their faculties is an act of love, the routine that comes with it is profoundly back-breaking and extremely exhausting. Neither of her parents can verbalize their wishes anymore, and her father now uses a wheelchair. While walking a visitor through their house on a quiet street adjacent to Gastonville Elementary School, she points out the boxes of diapers and wipes that are necessary components of their daily lives.
By the time Masters hands off duties to a sister for the weekend, the 54-year-old is usually bone-tired, too worn out to go out and do much. Just as she once dedicated all of her time and energy to raising her children, she is now doggedly tending to her parents' needs in their waning days.
Sometimes people will ask her if, at this stage, either of her parents have even the vaguest inkling of who she is. “I don't know,” Masters said. “But I know who they are.”
That said, aren't there some moments where Masters wishes that she, and the rest of her family, could be liberated from this?
She doesn't flinch: “Oh, yeah.”
“That's something we all feel, but no one will say it,” she added. “You go through all kinds of feelings. But love takes over.”
Although being a caregiver for someone being ravaged by Alzheimer's disease is a supreme act of self-sacrifice, a complex stew of emotions come with it – grief, frustration, burnout, stress and, despite the abdication of their own desires and needs, nagging guilt.
More often than not, caregivers are not medical professionals, so they end up relentlessly second-guessing themselves on whether they are doing things right. They daydream about the life they have set aside and feel guilty about it. There's guilt about friendships or other relationships that have been neglected. They feel guilt when the time comes to place their loved one in a nursing home. And then there are the moments, before the disease tightens its grip, when it's easy for caregivers to keep a smile on their face when they've answered the same question twice in the last 15 minutes. When it gets to be three or four or five times, the urge to replace the smile with gritted teeth can be impossible to resist.
Followed, of course, by a flood of guilt.
“We see so many caregivers put their own health and well-being on hold,” said Kristen Jackson, who supervises a program for caregivers with the Southwestern Pennsylvania Area Agency on Aging.
One suggestion offered to caregivers to cope with their feelings is simple: Talk about them. Jackson explained that some fall into isolation simply because friends or family don't drop by the way they once did, or they are reluctant to invite people over for fear that their Alzheimer's-afflicted loved one will do something cringe-worthy. Organizations like the Area Agency on Aging can point them in the direction of a support group, where they can gather comfort and encouragement from other people who are confronting the same difficulties.
Often, “all the caregivers want to do is talk,” Jackson said. “All they need to do is vent.”
The role reversal between parents and children can be a source of frustration and stress. Johnna Pro, a Charleroi journalist who has worked at the Pittsburgh Post-Gazette and as a spokesperson for the late Lt. Gov. Catherine Baker Knoll, said, “You have someone in the house who has no ability to think, reason or learn ... There were days when I was not at my best.”
Masters said her mother would yell at her about things she was doing “wrong” around their home. Sometimes, Masters would yell back, and then feel guilty about it.
“I thought, 'This is my job. Don't yell at them.'”
She also had to take away her father's car keys, despite his continued desire – something he stated emphatically – to get behind the wheel. The onetime vice president of Coen Oil Co. in Washington would also take flight from the house, leaving Masters to trail after him.
“We have gone through hell with my father,” she said. “He would urinate and defecate all over the house. He would just irritate me. But if you stick it out, it gets easier.”
Learning to understand and accept the negative emotions that come with caring for someone with Alzheimer's disease is the first step to dealing with the guilt and frustration, most experts say. They also stress maintaining realistic expectations, and above all, that caregivers give themselves a break.
“The most important thing we stress to them is they have to take care of themselves,” Jackson said. “Caregiving is a selfless act. But they really need it.”