Caring for Loved One with Alzheimer's is "Extension of Our Faith"
he Tennessee Register, as part of its continuing series on the Corporal Works of Mercy, in this issue is taking a look at the sixth of the seven works: visit the sick.
Joan Wanca sits in the cheery kitchen of the Sylvan Park home where she lives with her son and daughter-in-law Murph and Julie Wanca, flipping through a scrapbook designed to help her conjure up memories of her family, her life. A few minutes later, she looks up at Julie and asks her, pointing at Murph, "Are you his wife? Joy?"
|Julie Wanca, right, talks with her mother-in-law Joan Wanca while helping her prepare for bed. Joan, who has Alzheimer's disease, lives with her son Murph and daughter-in-law Julie, who are her primary caregivers. Joan spends her weekdays at the Catholic Charities Adult Daycare program, but beyond that is mostly homebound. Caring for an elderly loved one with dementia, the Wancas say, is draining, but it's a duty they try to accept graciously, with faith. Photos by Theresa Laurence|
"Julie, Mom, It's Julie. She's my wife. We've been married for 32 and a half years," Murph replies with a weary smile. He's heard this before.
Julie says it doesn't hurt her when her mother-in-law, who has lived with her for the last three years, for whom she has provided the most intimate care on a daily basis, doesn't recognize her. "I love her and I always did. But she's not the same person," Julie says.
Joan, who turns 84 at the end of the month, has Alzheimer's disease. This progressive, degenerative disorder that attacks the brain's nerve cells, resulting in loss of memory, thinking and language skills, and unpredictable behavior, has no certain causes or cures, and can be incredibly frustrating for primary caregivers like Murph and Julie Wanca.
"We didn't have an instruction book," said Murph. "We've learned a lot along the way," everything from how to best disinfect the laundry to balancing the demands of full-time work and caregiving.
The Wancas are among the almost 15 million people in the United States who care for someone who has Alzheimer's disease or other forms of dementia. That number will likely shoot up during the next several decades, with longer American life spans and the effects of chronic diseases like Alzheimer's on an aging population.
|At the urging of her son Murph Wanca, Joan Wanca, 84, searches a wall of family photos to find one of her late husband Tom, who died in 1998. She searched for a few moments, then gave up after being unable to identify him. Joan has Alzheimer's disease and sometimes has great difficulty remembering even her closest relatives.|
According to the Centers for Disease Control, the population of Americans aged 65 years or older will double during the next 25 years to about 72 million. In the near future, many more people like the Wancas will simultaneously have one eye on their own retirement and the other on making end of life plans for aging parents.
Respite for caregivers
Joan's one safe haven outside of her home is the Catholic Charities Adult Daycare program at St. Mary Villa. Both Murph and Julie work full time - she at Christ Presbyterian Academy and he as a small business owner, repairing and restoring vintage Hammond organs. Murph says that the program has been a life-saver for him and his wife. "It's the only way we can do this. The only way. Without it, we'd be lost and in big financial trouble."
Additionally, he said, "their kindness and their empathy is really a blessing."
Joan spends her weekdays at the Adult Daycare program, which offers structured, supervised activities for the elderly while providing respite for caregivers. Fees are determined by a sliding scale based on the family's ability to pay, which has been essential for the Wancas. Before Joan started at Catholic Charities two years ago, she was enrolled in another, similar program, but "we burned through her money in six months," Murph said. Now, while money pressures related to his mother's care exist, he said, "it's doable."
The Adult Daycare program currently has 13 participants enrolled and most of them live with family members, according to program director Linda Edwards. This arrangement works best for a lot of families caring for elderly parents with dementia, she said. Charities' Adult Daycare, is designed not only to provide care for the elderly, but also to give families a break, "because it can be very relentless" to be a primary live-in caregiver, Edwards said.
Most of the Daycare participants, like Joan Wanca, have some form of dementia. Even if their memory is poor and they can't communicate very well, "they do benefit from that sense of participating in something. That companionship can be beneficial," Edwards said. Regular activities include art, puzzles, and visits from musicians or therapy animals.
|Murph and Julie Wanca look at a scrapbook with Joan Wanca that contains family photographs and facts about her and her family's lives. Joan's daughter made the book to help her identify family members.|
Edwards assures there is laughter and camaraderie among the participants. "They're fun to be with. They tease each other," she said. "The more time you spend with them they more you get little glimpses of who they might have been."
Love is commitment
Murph, the oldest of Joan's three children, agreed to take his mother in after he and his siblings determined that she could no longer live on her own, which she had been doing since her husband died in 1998. They brought her down from the Wancas' hometown of Youngstown, Ohio, for a "visit," then, "we told her the truth in as loving a fashion as possible that the move was permanent," Murph said.
The arrangement has been amicable for the Wanca children. Joan has spent time living with her daughter, and probably will again in the future, to give Murph and Julie a break. His brother "spent 10 years running back and forth to help Mom, so he's done his time."
When Joan first moved to Nashville, Murph and Julie tried to keep her as engaged in the world as possible, with visits from social workers and physical therapists. They took her out to church and on errands. But over time that began to agitate Joan, so they stopped doing it. "There's been a gradual decline. The apathy has grown, and the lethargy," Murph said. Now, she sometimes sleeps up to 16 hours a day.
While loss of appetite is a common trait of those with Alzheimer's disease, Joan's greatest pleasure is eating, and it remains one of the few daily tasks she can still do for herself. In fact, she often forgets she has just eaten, and constantly thinks she's hungry. The Wancas have to padlock the refrigerator and pantry to keep her from binging.
|Catholic Charities Adult Daycare program director Linda Edwards helps participants with a morning art project while staff member Kathy Minogue, back right, reads the newspaper aloud. Joan Wanca, far left, tires easily and dozes off while listening to Minogue. The Adult Daycare program has been "a blessing" to Murph and Julie Wanca, Joan's son and daughter-in-law, who are primary caregivers.|
Because Joan often feels unsafe without Murph or Julie around, the Wancas rarely go out. "We're shut in as much as she is," he said. Fortunately for them, they "do not walk on eggshells" around the house; Murph plays the electric organs he repairs in the garage at full blast and his son hosts his rock band's practice in the basement.
Outside of the Catholic Charities Adult Daycare program, the Wancas do not have much of a support network to help with Joan. In the past they have hired home health aides to assist with some of the daily tasks, and will soon have a Belmont University student helping out, but those expenses add up. It's too difficult for a well-meaning friend to stay with Joan while they go out. "Unless someone has experience with someone like Mom, it could be disastrous, and it has been," Murph said, recalling that she once became confused and scared when a neighbor stayed at the house while he and Julie were away.
"The level of care makes it really difficult," Julie said. Joan needs assistance with most all daily tasks, including dressing and personal hygiene. Every morning is like a carefully choreographed dance routine with Julie and Murph working together to make sure every task is complete, getting themselves and Joan ready for the day. One positive of caring for Joan, Julie said, is that "it's been a really unifying experience for us," strengthening the Wancas marriage rather than fracturing it.
It has also been a lesson for the Wanca's two adult sons, one of whom still lives at home. "It's a good thing for them to see," Murph said. "We've never shielded them from the nuts and bolts of living, so they see it all, the good, the bad, the ugly."
For the Wancas, taking Joan in has shown them what it means to live out the Gospel call to care for the most vulnerable. The Wancas, members of Christ Presbyterian Church, say that their faith is guiding them on this journey. "I know if I try to do it under my own power I can't do it," Julie said. "When my feet hit the floor every morning, I pray, ‘Lord help me.'"
Murph and Julie are forthright about the challenge of finding joy in caring for someone who is so needy, and so often unsatisfied. But they carry on, because it's what you do, Murph said. "There's no out" of the duty to care for family.
One of the best pieces of advice the Wancas received was from an old friend who cared for her husband until he died of Alzheimer's. Murph relays her wisdom in his best Southern lady's accent: "You're not gonna make your mama happy, all you can do is keep her safe."
"You try to accept the burden graciously," Murph said. "The ultimate definition of love is commitment," he added. "This is a commitment ... an extension of our faith in the Lord, living hopefully."