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For Caregivers, The Holidays Mean A Tough Job Gets Even Tougher

Woman helps her mother at home
Ted S. Warren
Nearly 1 in 5 Illinois adults are caregivers, according to the U.S. Department of Health and Human Services and the Centers for Disease Control and Prevention (CDC). Of those, about 16% are 65 years of age or older themselves.

The holiday season can be tough even if you’re lucky enough to have a perfectly healthy family who gets along well and lives under the same roof.

For caregivers, the holidays can be downright daunting.

Angie Raymer is a Bloomington-based caregiver advisor with Community Care Systems Inc. She facilitates support groups for caregivers, often adult daughters and sons who’ve been hired into a demanding job they never applied for—caring for their aging mom or dad.

“I get the highest attendance during the holidays. Because people are stressed,” said Raymer. “People are trying to figure out, ‘Should we take mom or dad or sister or brother out of the facility for the holidays to spend time with us? Or is that going to be too stressful on them and leave them at the facility?’ At a support group we did last week, people just kept coming in.”

Rosalynn Carter
Credit Ron Harris / AP
Former First Lady Rosalynn Carter has spoken about her upbringing as a caregiver and the health of her husband, former President Jimmy Carter.

Former First Lady Rosalynn Carter says there are “only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” And the numbers bear that out. Nearly 1 in 5 Illinois adults are caregivers, according to the U.S. Department of Health and Human Services and the Centers for Disease Control and Prevention (CDC). Of those, about 16% are 65 years of age or older themselves, and almost a third provide care for at least 20 hours per week.

For caregivers, the holidays can amplify the challenges of what’s already a difficult job. WGLT asked those who’ve gone through it for a little advice.

Leaving Time For ‘Me’

Diana is a part-time caregiver for her father, 86-year-old Gordon, who lives in Normal. For a while Diana lived and worked in Chicago and helped from afar. But coordinating overnight care got more difficult, so Diana decided in March to get a job in Bloomington and move in with her dad.

Now she stays with him overnight—with the help of a baby monitor that keeps an ear on him.

“It’s a challenge,” Diana said. “My sleep pattern has changed considerably. I kind of liken it to when you have children and you have babies and infants, you’re able to wake up and tend to their needs, when they’re crying and fussing and when they go back to sleep, you go back to sleep.”

Diana prepares her father’s meals and helps him buy groceries, get to his doctor’s appointments, do laundry, and bathe. That’s on top of her full-time job.

Now that Christmas is near, she’s also driving her dad to holiday parties for different organizations he’s involved in. And she still found time to squeeze in a trip to Colorado to see her own children and grandchildren for Thanksgiving.

“Be patient with your patient, and be patient with yourself,” said Diana, who asked that her last name not be used. “Make sure you take care of yourself. You want to make sure that you're eating, that you're resting, that you're getting enough nutrition and food too, because you can be so busy and overwhelmed, that you forget to take care of yourself.”

“It's important to be able to have a little of your own me time,” she said.

Holidays are a challenge for caregivers, especially if there’s been a change with the person they’ve caring for, said Rose Stadel, who worked in the long-term care industry for over 35 years and now facilitates a monthly support group for caregivers in Bloomington-Normal.

As Mom or Dad get older, they may no longer be able to host family parties for the holidays, Stadel said. And caregivers may face resistance if they offer to help by hosting instead.

"You want to think everything should look like a Hallmark card. But it's not possible."

“Well, sometimes your help can be a viewed as a threat to their independence. So you have to turn that around to make it look like the helping part of it is not because they can’t do something. It’s because you want to more involved,” she said. “We always want to keep them a part of things. We don’t want to treat them like, ‘Oh, you’re not able to do that anymore.’”

During the holidays it’s important to recognize the signs of stress and burnout, said Illinois Department on Aging (IDoA) Director Paula Basta. That can include withdrawal from friends and other loved ones, changes in sleep patterns, or feeling blue, irritable, hopeless and helpless.

“You want to simplify your holiday activities,” Basta said. “Don’t make them so stressful or overwhelming that you can’t get stuff done. You want to think everything should look like a Hallmark card. But it’s not possible. You can put some stuff on the backburner and just be able to enjoy the holiday itself and not work so hard.”

Home For The Holidays

For grown children who live out of town, the holidays can be eye-opening. Picture an adult daughter who talks regularly to their mom on the phone and thinks everything is fine.

“But when they come to visit, they realize there’s a major decline,” said Susan Real, executive director of the East Central Illinois Area Agency on Aging. “And they’re from out of town, they don’t know what to do. Many times the caregivers then see they need help, but they’re not in a position to be able to really stay and pull together a support system for their mom and dad.”

That’s when it’s time to ask for help. Experts tell WGLT that asking for help is the most important advice they can give to a caregiver—new or experienced.

“We help a caregiver recognize it’s OK to accept services,” Real said. “They don’t have to be a super caregiver and try to do it all. Because many times caregivers can get in over their head.”

It’s not easy asking for help. Some may feel guilty for getting frustrated with their patient, or resentful of siblings who aren’t helping as much. Almost 1 in 10 caregivers said they had no one to talk to about private matters, and 1 in 5 said they had no one to call for help, according to IDoA.

“Caregivers feel kind of isolated,” Stadel. “And they’re very hesitant to reach out for help because they don’t want to be judged. They feel like they should be able to do this.”

A support group is a good place to start. Stadel started her monthly group 14 years ago.

“What I see is, people look around and they listen to everyone else’s situation, and they realize, wow, they’re not alone,” Stadel said. “There are so many people in this situation.”

Another good place to start is by talking to someone like Angie Raymer, the caregiver advisor at Community Care Systems (CCSI). That agency serves as a central hub of information for seniors in McLean, Livingston, and DeWitt counties, Raymer said.

Raymer is happy to meet with caregivers, give advice, and make referrals to programs that could help, such as in-home care services. (Through grant funding from the state, CCSI also provides in-home services itself to help seniors stay independent and living in their home as long as possible.) Advocate BroMenn’s Adult Day Services is another daytime option.

The most difficult questions Raymer faces are about balance. How am I going to do this while working full-time? How am I going to do this while raising my own kids? (That’s called a “sandwich caregiver,” by the way. They’re sandwiched between caring for two generations)

“Their lives kind of go on hold while they’re in this role, a lot of the time,” Raymer said.

Diana, the Normal woman who cares for her dad, was willing to ask for help. She’s hired someone to come and help her dad and give him his medication during the day while she’s at work. Her brother, who lives about 45 miles away, is also part of the caregiving team.

That makes it easier. But it’s not easy.

“It’s a little heartbreaking to see the transition (with your patient). So you have to kind of deal with that emotionally. Because you see someone that was vibrant and full of life and able to make decisions on their own, and then not able to do that as much as they were before. But it’s a blessing for me to be able to help take care of him,” Diana said.

It can be an emotional rollercoaster, like if her dad gets angry about something.

“And then you’ll experience some casebook caregiver animosity. We’ve gone through all those things,” Diana said. “But right now, I think we’re pretty much in a groove.”

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Ryan Denham is the digital content director for WGLT.