KC Cares: Rachel Hiles provides imperative support through Sandwiched KC

Photo Courtesy of Sandwiched KC

When you’re caring for a loved one in addition to all your other life responsibilities, it can feel like no one understands the pressures and demands of your life. Sandwiched KC is here to say that there’s someone in your corner.

“My life changed when I realized I wasn’t alone as a family caregiver, that there were people out there doing the same thing,” Sandwiched KC Founder Rachel Hiles says.

While Hiles looked for local support groups when working full-time and caring for her grandma, who had Alzheimer’s, she was left feeling burnt out. She discovered that most support groups were in-person only and were disease-specific, even if the problems caregivers deal with are pretty universal.

“I’m a millennial, and my preference is to connect online. I know it’s hard to believe nowadays, but back in [2018], there certainly wasn’t anybody connecting online,” she says.

What was a once-a-month virtual group has now increased to twice a week, with morning and evening times.

“So much can change in a month, even in one week. We found that caregivers really need continuity of support,” Hiles says.

Although it’s more common now to find virtual support groups, Hiles says having one that is local to Kansas City is important.

“We know what’s here, what works, what’s available, and we can share that with each other,” she says.

Groups often discuss solutions with each other, and talking about their experiences also helps them see where some gaps in the system are.

People who attend might be caring for a spouse, parents, grandparents, grandchildren, friends, or even neighbors.

“We have all kinds of people come through our door. They love connecting with us because, at the heart of it, we all struggle. We all have challenges. There’s something to be said about connecting with other people who understand what you’re going through,” Hiles says.

Photo Courtesy of Sandwiched KC

There are also monthly talks from experts about topics such as fall prevention, navigating Medicare, and estate planning.

Until this year, their only in-person meet-up has been their annual conference, where they showcase resources that can help caregivers with the work they need to do.

“One of our favorite things to do is shower family caregivers with love and affection. They are doing such important work. Honestly, most of the time, they’re doing it without any pay, often at great sacrifice,” Hiles says.

This year’s conference will be held on Nov. 1 at St. Joseph Medical Center, and it’s completely free for caregivers to attend. Hiles hopes that the conference and other resources reduce the amount of time caretakers have to spend searching for the programs they need.

Due to popular demand, they are starting up some new in-person support groups in September. Virtual or in-person, the connection is important.

“Caregiving, although it seems like everyone will do it or has done it at some point, is so lonely. It’s just so isolating. We make so many sacrifices, often at the expense of our own health and wellbeing,” Hiles says. “It’s something to be able to create this space where caregivers can pause, have some time to themselves, and listen to each other share, troubleshoot, problem-solve, and commiserate. We also celebrate. We have our victories as well.”

Jerry Peters cares for his wife, who has Parkinson’s disease. Although he’s part of a men’s group at his church, he says the support he’s gotten in the last year and a half from Sandwiched KC is different.

For one, he found out about various resources, from accessing physical therapy to getting a home health aide paid for through Medicare. Beyond that, having people he feels comfortable talking with about the tough things is vital.

In other social groups, he can enjoy himself, but “I don’t feel like there’s a place I can be genuinely, completely, and totally honest about what’s going on with someone that’s not in the same situation. There’s things I would never discuss with my family. There’s things that are too private that Sandwiched offers an opportunity [to share]. I can be completely open, and they will totally understand and just be a helpful ear and a great sounding board,” Peters says.

Although his family is very supportive, he doesn’t want to burden them with some of the more difficult details of his wife’s experiences.

“I couldn’t tell them what their sister is going through. It would be devastating,” he says.

He finds the support group a valuable resource for working through his heavy feelings.

“If I didn’t have that space, it would be nothing that I would ever voice to another person. It would be something that I would always hold inside of myself and couldn’t get any feedback over how I’m feeling, why I’m feeling the way I’m feeling, or who else went through the same thing and how they were able to journey through,” Peters says. 

Hiles says they can always use volunteers for their conference and for fundraising, but she’s also looking for people who have caregiving experience who can help coach new caretakers on how to handle specific circumstances. 

In the future, she’d love to be able to offer a volunteer respite program to give people a break. Right now, she has some donations that support a one-time 25-hour respite care voucher for a caregiver.

For more information about Sandwiched KC, visit sandwichedkc.com.

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