Support for the journey

Caring for a loved one with dementia

By Barbara Pierce

caregiver“Any of us, given a choice between having Alzheimer’s and caring for someone who does, would choose the caregiver role. But being a caregiver is hard. It is definitely the hardest thing I’ve ever done in my life,” says Don Gasby in “Before I Forget,” the book he wrote with his wife Barbara Smith, diagnosed with Alzheimer’s.

“Your loved one is on a journey you cannot block or prevent. All you can do is join the journey,” he noted.

LutheranCare, an affiliate of Community Wellness Partners, supports caregivers on the difficult journey of caring for a loved one with dementia. With a grant, it has expanded existing support services and offers them at no cost to caregivers in Oneida, Herkimer, Lewis and Madison counties. Its focus is on rural communities with limited access to services.

“Alzheimer’s disease affects thousands of New Yorkers each year and takes a devastating toll on both patients and the caregivers,” Governor Andrew Cuomo said online when approving grants for organizations to develop programs supporting family caregivers.

“The Department of Health awarded us a $500,000 grant,” said Patricia Defrancis, director of the LutheranCare Caregiver Support Program. “We provide support groups, training, and resources to caregivers whose loved ones are memory impaired.”

The goal of the program is to give much needed respite and support to persons caring for a loved one with dementia.

“Caregivers definitely need respite,” emphasized Defrancis. “They need time for themselves, a break, so they can have their own social life. Caregiver burn out is a major problem; caregivers get sick because they aren’t caring for themselves.”

“I promised Gail I would be there for her, in sickness and in health, for better or worse. It’s the promise we all make when we marry and it’s a healthy promise — unless it’s taken to excess,” said T.R. Kerth in the Naples (Fla.) Daily News.

“When Gail’s abilities deteriorated, I took my promise to an unhealthy extreme. I felt I was abandoning her if I let any other caregiver help shoulder the load, other than a few hours every couple of weeks or so. The rest of the time, 24 hours a day, every day of the week, it was just me,” Kerth said.

“That arrangement is fine for saints. But I’m not a saint; I’m flawed. And because I’m flawed, my care giving was flawed too.

Fit to be tied

“More times than I’d like to admit, my weariness nudged me to frustration, even anger, at the end of a long, tiring day,” Gasby said. “More times than I like to admit, I resented that others went so freely through the days of their lives, while I sat at home with my wife. More times than I like to admit, the halls of our home echoed with my curses at God.

“Going it alone doesn’t make you a hero; it just wears you out. It burns you out so you can’t be the caregiver you need to be. Take enough time off to recharge. If you burn out, that helps neither of you.”

LutheranCare offers respite in several ways, explained Defrancis. Its day program gives a full day of respite each week. For their loved one to receive respite, the caregiver must be involved in one of the support groups it offers.

“The support group gives you the tools you need to be a successful caregiver,” said Defrancis.

“The most important thing caregivers get from the support group is they learn they’re not alone,” said Defrancis. “You’re not alone. You’ll find you build a network of friends that support each other and share ideas about problems you’re running into. Someone may have run into the same thing and can offer a solution.”

In addition to the full day of respite offered, respite is available while the caregiver attends a support group.

“A support group can be enormously helpful,” says Gasby. “Not only do they give you perspective and insights into day-to-day challenges, they also put you in touch with resources. And a support group is the best place to admit the dark thoughts you’re sure to have.”

Lisa Woodard, intake coordinator for the program, said for caregivers, the most important thing to remember is to have patience. “Be patient and understanding; the person with memory impairment is not here to give us a hard time — they are having a hard time,” she said.

“Patience is the watchword. I sure learned that,” says Gasby. “Gently repeat what your loved one has forgotten; gently answer the questions again and again. There’s no point correcting or criticizing.

“Try not to show exasperation; that only deepens their anxiety. Anger and frustration are no help; they simply provoke hurt and resentment.”

For more information, call LutheranCare at 315-235-7141 or see and click on caregiver support.