Struggles of caregivers to aging and ill spouses, parents to be surveyed

Published: Monday, Sept. 5 2011 12:28 a.m. MDT

Michael Pope helps his wife, Karren, into bed for a nap in their Sandy home on Thursday, September 1, 2011.

Laura Seitz, Deseret News

SANDY — Earlier this week, Mike Pope went on a much-needed golf outing with some buddies.

He didn't get to finish his round because the game was interrupted by a telephone call. His wife, Karren, had fallen. He was needed at home. Fortunately, she was not injured.

This is a small glimpse into the couple's life the past 2 ½ years, as Pope has become a primary caregiver to his wife, who has a form of dementia called frontotemporal degeneration. She rarely speaks, except for occasional one word utterances. Her mobility is dwindling by the day.

"We've been married 48 years. We probably won't make it to 50," he said, choking back tears.

Pope is among a growing population of people caring at home for ill and/or disabled spouses, relatives and friends. There is also a growing number of grandparents raising grandchildren.

"We’re beginning to see a radical transformation in Salt Lake County's caregiver population — more racially and ethnically diverse and significantly larger," said Sarah Brenna, director of Salt Lake County Aging Services.

The agency is seeking to better connect with the needs of this burgeoning population through an online survey that went live Thursday. Survey results will be used to design programs and services for caregivers of aging adults and grandparents who are primary caregivers of grandchildren living in their homes. The survey will be conducted throughout the month.

Pope, 69, plans to complete the survey. He believes that caregivers need outside help and emotional support. As Karren's condition has worsened, he's assumed more household duties.

"One of the hardest things for me is trying to come up with something for dinner every night," he said.

Watching his beautiful wife come unspooled by dementia and a recent diagnosis of a neuromuscular disease takes a toll on both of them. Pope said he is grateful that he was able to retire young enough that he and Karren were able to enjoy time together before her health declined.

He relies on a monthly support group. His wife receives care from a hospice provider. Volunteers from Salt Lake County Aging Services and Jewish Family Services provide respite care, which gives him a chance to recharge his batteries.

"You just do it with love," he said of caregiving. "You do the best with what you got. That's what my dad taught me."

When times are tough, he thinks back to the sacrifices Karren made for him. When he worked the 3 a.m. shift at a refinery, she got up at 1:30 a.m. to cook breakfast and pack his lunch.

"We had a relationship that was the best anyone could have," he said.

Gwen McPherson of Herriman also cares for a spouse at home. Her husband, Oliver, also has dementia, but he no longer recognizes her.

"He hasn't known me for a few years as a spouse. He thinks I'm a good friend that allows him to stay here on occasion," she said.

Nevertheless, McPherson treats Oliver with compassion. After 11 years of intensive caregiving, she is pragmatic about what the future will bring.

"In your mind, you know it's never going to get better," she said. "But we'll do what we have to do."

For the past two months, a volunteer from Salt Lake County Aging Services has provided respite from 24/7 caregiving responsibilities.

"The lady that is serving us is wonderful, just wonderful. She would do so much more for us if I would allow it," McPherson said.

Because of her own health issues, McPherson does not often leave the house.

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