For Bob Pascucci of Powder Springs, taking care of his wife through Alzheimer’s has been the hardest thing he has ever done.
His journey began about nine years ago, and he wouldn’t have gotten this far had it not been for the Caregiver’s Ministry at Due West United Methodist Church.
His daughter heard about the church’s Alzheimer’s/Dementia Family Support Group and encouraged him to attend. He was resistant at first, but she kept pushing him until he went. Best decision of his life, he says.
He was one of the charter members, then helped to start a spin-off group just for spouses. It doesn’t get any harder than being a caregiver for your spouse because you’re in the trenches 24-7, he said.
“It’s much more relational. And you don’t know what you’ll get when you get up in the morning,” Pascucci said of the changing personality and needs of those with Alzheimer’s disease.
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The Spouse Support Group meets three times a month, which includes one meeting over a meal at the dining table of Sheila Welch, coordinator of the church’s Caregiver’s Ministry and facilitator of the dementia support groups.
Welch’s job is part cheerleader, part educator. She’s there to offer you-can-do-it encouragement, but she doesn’t withhold the hard, cold facts about the task at hand.
With Alzheimer’s, the brain is dying in at least two areas, and the disease is progressive, constantly changing for the worse and terminal. Skills are being lost, and the patient’s personality changes frequently, sometimes moment to moment, Welch said.
“The person living with dementia is not living in the same reality as the person caring for them,” Welch said.
That’s particularly hard on the spouse, who often picks up the total caregiving load and is quickly overwhelmed by the responsibility. Caregivers have to learn how to take care of themselves, because if they don’t, dementia can claim two lives, not just one.
Welch saw that happen with her own parents. Her mother suffered for 12 years with Alzheimer’s, and Welch’s father was the primary caregiver for seven of those years. It took such a toll on him that he died three years before she did.
After her father passed away, Welch stepped into the role and was overcome by grief, duty and fear. Looking back, she realizes that caregivers need as much care as their loved ones. Taking breaks from the daily tasks, getting outside help, finding balance in their own lives and joining a support group are ways caregivers become more empowered.
“What we try to offer in our groups is hope that together we can get through this,” Welch said. “And you can still be standing at the end of this journey — if you take care of yourself.”
The Alzheimer’s/dementia caregiver’s support groups at Due West have grown organically through the last several years. People find them because the need is increasing, Welch said.
In addition to regular meetings, the ministry sponsors conferences and workshops to help educate caregivers and give them the skills they need. An upcoming workshop will feature Teepa Snow, a nationally known dementia-care education specialist.
“A Day with Teepa Snow: Today’s Voice for Dementia,” is March 31, 8:30 a.m.-4 p.m. at the Due West United Methodist Church Family Life Center, 3956 Due West Road, Marietta. Family and professional caregivers can register online at duewest.org.
“The most rewarding part is meeting families who are loving their spouses through dementia,” Welch said. “I have met one hero after another.”
Pascucci is one of those heroes whom Welch admires. And Pascucci credits Welch and his group for helping him to press on.
He is learning to take care of himself, and that means not trying to do everything by himself. He’s hired some help, and he goes out with friends for lunch and other social events. And he recently took his first extended break, a weeklong vacation. Getting away helps energize him for the duties he faces in caring for his wife.
“It’s the most important thing I’ve ever done in my life, and I’m privileged to do it for my sweet wife,” Pascucci said.