Caregivers stress importance of self-care while caring for others

Jeff Littrell, at left, Dawn Kullot, center, and Robin Wolfram answer questions about what it's like to be a caregiver. GRETCHEN MENSINK LOVEJOY/CHATFIELD NEWS

Robin Wolfram, formerly of KTTC, speaks about how she was her parents' caregiver in their last years during a special program at the Chatfield Center for the Arts on Tuesday, Nov. 27, sponsored by Age Well at Home. GRETCHEN MENSINK LOVEJOY/CHATFIELD NEWS
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“It’s not an easy road. Because we love so much, that’s why we hurt so much,” stated Robin Wolfram, standing before a gathering in the Legion Room of the Chatfield Center for the Arts (CCA) last Tuesday evening, sharing her experience as caregiver to her parents as they came to the end of their lives.

The former KTTC news anchor had previously presented conversation on being a caregiver during a program held in Potter Auditorium two years ago. This time, she returned to the Legion Room with reflections on how it changed her, even as her parents have both passed away. She has returned to Rochester to establish herself as a real estate agent, but most importantly, as their daughter who gave more than she ever imagined she could or would.

She and local residents and caregivers Jeff Littrell and Dawn Kullot came before Chatfield area residents — those who have been, are or will be caregivers of someone they love — as part of a wellness session hosted by Age Well at Home Fillmore County.

Wolfram recalled how becoming a caregiver began gradually, as she and her siblings stopped in to check on their parents in Iowa and to lend a hand with household tasks that had become too difficult for them to do on their own, such as carrying laundry to the washer, cleaning their floors, checking their refrigerator to ascertain that there was food to eat and taking them to appointments.

“Had I listened when people would say, ‘You know, you’re a caregiver?’, I would have asked for some help. I did it until I couldn’t hold my mom up anymore,” Wolfram said. “My dad had Alzheimer’s and would do things that were dangerous. I remember when he would go three solid nights with no sleep, and he was manic. I had to stay up with him while he was manic. I remember that he grabbed a knife and a broom, and I could see that he was going to cut himself, but what he really wanted to do was cut broom stems to clean his pipe which he no longer had. I grabbed for the knife because he fell, and if I hadn’t grabbed for it, it was obvious that he would have cut his finger off. My dad fell three times right in front of me…I was exhausted, and I spent hour upon hour taking care of him. What I wasn’t doing was spending quality time with my mom and dad.”

She related that having given up her comfortable existence in Rochester meant she sacrificed not only that, but her finances, a reliable car, countless hours of sleep and her social connections — the thread that held her in contact with other people and kept her from losing sight of why she needed to take care of herself in order to carry out her commitment to care for her parents.

She said that by choosing to move in with them in their sunsetting, she saved the state of Iowa a total of $16,000 a month in nursing home costs for their care. It took her six months of research and endless amounts of paperwork that would be returned because she’d missed something.

“I didn’t know how much longer I could go on. Your health is at risk when you become a caregiver,” Wolfram said. “Take my advice because it is free — there’s so much that it cost me. It was a heartbreaking memory. I found the memories to be heartbreaking, but…I can describe the time I spent taking care of my parents as the worst but the most tender and best time of my life. I got to watch them through the rest of their lives and go on to the next life.”

Wolfram said it was the best of times and the worst of times, but she learned to be more patient, more loving. “Your caregiving journey may be difficult, but there is help,” she said. “You have friends available. There are nonprofits, government funds sitting waiting for you to take advantage of them. They will even do some of the paperwork for you. You have to make preparing for the unexpected your number-one priority.”

Littrell stood up to speak next, introducing himself as the guy who grew up in a family that was rather opposed to staying in one place for very long — meaning he got to go to more than 20 different schools between elementary and graduation. He also noted they weren’t at all at peace with chatting with God. He noted that over his career, he’d been CEO of a fertilizer business and also dug ditches, but for quite some time had been a traveling salesman for an agribusiness company, leaving his wife, Holly, at home with their two children.

“In 2008, I came back from a trip and found her at home with about 30 pounds of fluid on her body. On Sunday, we took her up and they put her on the scanner…I asked the nurse, ‘What’s wrong?’ The nurse said, ‘We think it’s cancer,’ and they sent her to Mayo. Fifteen days later, there was still no answer.”

On Valentines Day, 2014, his wife was admitted once again to the hospital with pain. Littrell was away on business at the time, so his son drove her to the hospital.

“On the way home, riding with someone from our company, I had a real deep talk with our Heavenly Father, and the only words that kept coming back to me were ‘Choose between all the businesses and her, and choose her.’”

His wife went into the hospital for what they thought was an intestinal rupture, but they also found out she had rheumatoid arthritis, and she retains salts and flushes fluids, leaving the salts to build up.

“From February to mid-May, I put in IVs, cleaned drains, did all the stuff that I never thought I would have to do, but my choice was her,” Littrell said. “I’ve had to learn how to put my faith in the doctors and God.”

That meant Littrell had to accept that while Holly had been diagnosed with something that resembled cancer, it “wasn’t quite cancer” and therefore didn’t seem to register with others — including with the insurance companies.

“She comes first, I come second,” he said. “It’s hard, because you get worn out. I’ve got a great church and others who help. If you’re a caregiver, find someone to vent to. My minister has heard just about everything under the sun. I’ve learned to never give up. There are always two choices we have — being reactive or proactive, to allow evil or to see God’s blessings.”

Kullot’s account of her time as a caregiver of both her newborn son and of her parents included how she, as a caregiver, needed someone to be her caregiver. Her son was born with Opitz Syndrome, a completely random, anomalous disease that she explained was a very rare midline anomaly that some babies even die from.

“It’s a fluke,” she said. “We started with a geneticist, then we dealt with his hands and feet, splinting his hands at night to keep them open and casting his feet because they were in a ‘C’ shape. I thought at the time, when he was six months old, crying all night because he had casts, ‘Why are we doing this?’ But I see now the strong 14-year-old football player he’s become.”

She said, “At one point, I lost count of how many trips to the OR he’d had, because he’d had 14 (surgeries) before the age of five. Routine surgeries would reveal new conditions or cause others to arise.”

By the time her son was two, Kullot said he hadn’t learned to sleep well because he’d experienced so much medical trauma that he couldn’t cope.

Additionally, her mother had suffered injuries in a car accident, and two years later, almost to the day, her father was pinned between his tractor and the manure spreader as he attempted to jump when he realized the tractor was going to tip over.

“I ended up with a stroke. I didn’t recognize the symptoms. I’d had a really bad headache for three weeks, and I would go to the chiropractor to get adjusted,” Kullot said. “I had a stroke at the chiropractor’s, and they called Mayo One in, flew me to Rochester. I remember the doctor asking what I needed to do to take care of my children, and I relearned how to walk, how to talk, remembered that my children loved apples, so I learned how to cut up apples for them.”

She stated, “My husband became a caregiver then, too. I share my story with you because I wasn’t taking care of me. I’m a teacher of special education teachers, and a lot of our teachers are so busy trying to take care of their kids that they don’t take care of themselves.”

She elaborated that she’d enrolled in Age Well’s “Powerful Tools for Caregivers” class to teach herself how to take care of herself as a means of being a better caregiver.

“The amount of stress you push aside…you can take better care of the people you care for if you make sure you go for a walk, go back to an old hobby,” Kullot said. “I can’t encourage you enough to sign up for this, because you’re held accountable to do things for yourself.”

The trio took questions from the gallery at the program’s close, each reiterating that seeking assistance from outside resources is the best thing that a person in a caregiving arrangement can do for themselves and for the people they love.

Wolfram admitted frankly, “My burnout factor was very high, and I had a pretty bad meltdown while caring for both parents. I came to my mom and said, ‘I can’t do this,’ and she said, ‘We’ll go to a home.’ That’s when I knew I couldn’t do that.”

She observed, “I have three people from my office who could not be here tonight because they said they had to stay home to take care of their loved ones. There is such a need, and we don’t recognize the need for help until you’re in the situation and so busy, so by all means, reach out to your legislators and tell them that things have to change, reach out to people on social media and to your churches. There are people there who want to help and are rewarded by helping you. Because at the end of the day, what does pride get you?”

Age Well at Home Fillmore County, part of Catholic Charities, has resources available, as does the Area Agency on Aging — better known as the Senior LinkAge Line. These resources can be found online as well as at the upcoming Age Well Chill Fest health fair to be held this year at Chatfield Lutheran Church, with more vendors and booths focusing on caregiving.