Chuck Kelly, 74, smiles at his wife, Barbara, 86, who has dementia and lives at Baldwin Healthcare and Rehabilitation Center in Baldwin City. After caring for her for years at home, Chuck now stops by the facility a few times a week to feed and spend time with her.

BALDWIN CITY — “Hey, hey, hey,” Barbara Kelly said, signaling that she was ready to eat.

Her husband, Chuck, tucked a napkin into the neck of her shirt. He mixed her some chocolate milk. After a nurse brought over a plate of pureed carrots and potatoes, he started spooning them into her mouth. “Doesn’t that look appetizing?” he said. “Mmm.”

It’s a routine Chuck has grown used to. Since his wife’s move to the Baldwin Healthcare and Rehabilitation Center last September, he has been feeding her supper a couple times a week. But in the years prior to that, he cared for her at their Lawrence home, where she might still be, had an infection not caused her to be hospitalized.

That’s when he first found out his wife had dementia. Before that, he just thought she just getting old and senile. But doctors recommended that he place in her a care facility.

What if they hadn’t? he now wonders. Would he have accidentally fed her the wrong thing, or not enough? Would she have hurt herself? Would he have eventually taken matters into his own hands, like the Lawrence man who killed his wife last year because of her deteriorating health? Chuck says he now ponders these questions regularly, and wonders how many other seniors are out there who haven’t had the kind of intervention that may have saved his wife’s life.

Barbara grabbed the silverware of the woman sitting next to her. “That’s our neighbor’s,” he said, taking it back. When she reached for them a few minutes later, he again corrected her. “Those are Mable’s,” he said, displaying the monk-like patience of someone who’s been doing this for a while.

Support group helps

To deal with this emotional roller coaster, Chuck Kelly has turned to the caregivers support group held twice a month at the Lawrence Senior Center. The group is made up of current and former caregivers who share their experiences about topics like how to take away your loved one’s car keys, pick the right nursing home and deal with loneliness.

Support systems like this one should become even more critical in future years, with the retiring baby boomer population and increasing number of dementia diagnoses. Dementia is already the most common reason people seek out the local meeting.

Earl Nehring, a retired Kansas University political science professor, was once the primary caregiver for his late wife, Harriet, who had dementia. He received help along the way from the caregivers support group at the Lawrence Senior Center. Even though he's no longer a caregiver himself, he continues to attend the group in the hopes he can help others.

Earl Nehring, a retired Kansas University political science professor, started attending the group in 2001, when he was caring for his wife, Harriet, who had dementia. Even after her death six years later, he kept going to the meetings. “Hopefully those who have been through the experience can provide a little moral support and practical advice,” said Nehring, who is a spry 94.

Janet Ikenberry, the Douglas County Senior Services staffer who leads the meetings, said the fact that the group has so many longtime members, people who are themselves no longer caregivers, makes it unique. “The group has always felt there’s real value for those people continuing to attend to share their information,” she said.

Ikenberry said some of the major lessons to come from the group are that caregivers must watch out for their own physical and mental health while caring for a loved one, and that whatever emotions they’re feeling are OK. “The main theme is to be gentle with yourself,” she said. “You do the best you can every day, and some days are better than others. Caregiving is such a tough job, but it’s done out of love and commitment.”

Not just couples

The group isn’t just made up of people who care for their spouses; there are also those caring for adult children or elderly parents.

Marilyn Roy, 63, of Lawrence, is now the primary caregiver for her mother, who has Parkinson’s disease. She often gets frustrated when her mother rebuffs her assistance. For example, she once replaced her mother’s microwave, which had become old and unsafe, with a new one, putting the old appliance in her basement. When Roy’s mom found out, she gave away the new microwave and put the old one back in its place.

“I needed emotional support because my mother was just rejecting everything, right and left,” Roy said. “I came to find out it’s pretty typical among the older folks that are set in their ways and suddenly has changes happen like this.”

Christine Adams, a 57-year-old gallery assistant from Topeka, says she started going to the meeting several months ago when was feeling “low and beaten down, depressed.” A few years earlier, she found out her mother had dementia — and that she would become her caregiver. She studied up on the disease, researched nursing homes and took over her mom’s financial affairs. Then one day, her mother no longer knew who she was. Adams was feeling overwhelmed.

“The group helps me tremendously,” Adams said. “I get to talk to people who understand and have been or are going through this. They listen and encourage me.”

‘You’re just lost’

All these years later, Chuck Kelly still can’t believe how lucky he was, a self-described Kentucky hillbilly who ended up marrying an East Coast girl from an accomplished family. During a stint in the military, he traveled to Boston, where he met his future wife at a night club. Both of them loved to dance. They married, even though she was several years older. They moved around the country because of his job as a lineman, eventually settling in Lawrence.

In recent years, as he cared for his wife at home, he believed her diminishing mental capacity and increasing anger were a result of old age. It was frustrating, but he had no idea what his options were, or whether any even existed. “You’re just lost,” he said. “You want to do something, but you don’t know where to turn to, who to ask.”

Her condition continued to regress. He thought he was doing what was best for her — until he found out he wasn’t.

After the doctors recommend she enter a care facility, Kelly called nursing homes but most wouldn’t accept her since the couple didn’t have long-term-care insurance. He finally found Baldwin Healthcare and Rehabilitation, which referred him to a Lawrence attorney who helped him figure out how to pay for his wife’s care. The lawyer then told him about the local caregivers support group. If not for that chain of events, Kelly would likely still be in the dark about all of these issues.

The fellow group members help Kelly deal with the emotions of having a spouse who is fading away, and the loneliness that comes with it.

“I think the hardest part is at night. All of a sudden, you look over at that chair and she’s not there,” said Kelly, 74. “She’s gone, but she’s not gone. You can’t grieve. It’s like you’re in limbo. I’d like to go on that Oregon Trail, but I can’t go and leave her here. I can’t go on and check the sports bars because I’m still married and have a wife.”

Back at the Baldwin City nursing home, it was time for dessert.

“Do you want some of these?” Chuck said. “I think they’re peaches.”

“OK,” said Barbara, whose speech was mostly nonsensical or inaudible during the recent visit. She started trying to scoop the peaches herself.

“Hold on a minute, hold on,” Chuck said, grabbing the spoon from her.

Barbara shrugged and rolled her eyes, like many a wife before her has to her husband.

She then reached for her chocolate milk. He handed it to her.

“Oh, thank you,” she said, as her husband of 56 years kissed and rubbed her hand.

“We had a good time in life, huh?” he asked her, not expecting a response. “A beautiful, beautiful life.”