CHAPEL HILL, N.C.– Caregivers around the Triangle find community and support at the annual Duke Caregiver Community Event on Sept. 3 and 4, emphasizing the importance of providing resources for caregivers.

The event was catered toward individuals currently caring for a loved one, typically an older adult, with a chronic or serious illness like dementia, Parkinson’s disease, ALS, multiple sclerosis and others. It was aimed to educate and support caregivers in the surrounding communities.

Nicole Clagett, director of community development and caregiver support at Duke HomeCare and Hospice, said it is important to build support services for family caregivers to prevent burnout.

“We know based on years of experience that family caregivers often don’t take care of themselves, and a lot of times they actually become ill and pass away before their loved ones due to the stress of providing that care,” Clagett said.

She said the event had different educational sessions for caregivers about how to take care of themselves and their loved ones. The sessions varied from information about finances, legal actions, Medicare and the different diseases caregivers see.

There were 113 organizations at the event that had “anything you could imagine that you might need if you were a family caregiver trying to provide care from your loved one,” Clagett said. This included ramps, wheelchair-accessible vans and private in-home care providers.

She said they had over 60 volunteers at the event and around 1,500 who attended. The venue was at the Sheraton Imperial at Triangle Research Park in Durham.

Paula Tah-Sherman, a registered nurse care manager for DukeWELL which provides care and support for Duke Health patients, volunteered at the event by educating attendees about skincare.

Aside from volunteers, the event featured guest speaker Carl William Kenney, an assistant professor at UNC-Chapel Hill in the UNC Hussman School of Journalism and Media. He spoke about his book, “My Daddy’s Promise: Lessons Learned Through Caregiving,” which he published in 2020. The book is about his experience caring for his father before he passed away in 2016.

Kenney moved back to his hometown in Missouri when his father was found naked in a diabetic coma on his bathroom floor in 2012.

“I had to make a decision to go back home to take care of my dad and uprooting completely, giving up my work and giving up my home,” Kenney said. “It was the hardest thing I’ve ever done.”

He took care of his father for four and a half years and is currently trying to find care for his 88-year-old mother.

He said it was difficult to find resources surrounding housing, insurance and social security, which are crippling to his bank account.

According to a 2021 Caregiving Out-of-Pocket Costs Study by the American Association of Retired Persons (AARP), the average family caregiver spent 26% of their income on caregiving. Half of the caregivers in the study reported using their own money for household-related expenses and said they have experienced financial setbacks. Nearly eight in 10 caregivers reported having consistent out-of-pocket expenses from caregiving.

Half of the caregivers in the study reported using their own money for household-related expenses and said they have experienced financial setbacks. Nearly eight in 10 caregivers reported having consistent out-of-pocket expenses from caregiving.

Kenney stressed the need for a broader conversation about the caregiving processes and what people have to do to take care of their parents. He added that there is an assumption that people can afford to pay for the countless resources elderly folks require and that most people can leave their jobs to care for their loved ones.

The biggest lesson he learned is that caregivers must find ways to prioritize what they need as individuals.

“Our parents are very important, but we are too,” Kenney said. “And I think it’s easy to forget that your whole life cannot be dedicated to doing what you can’t do by yourself. It’s imperative that people recognize that you’re a person too, that you can’t die in the sake of taking care of your parents.”

During the event, he tried to show the audience the human side of being a caregiver.

“We are people who have desires for vacation,” he said. “We have a desire to fall in love and to get married and to build a life with a partner. And what caregiving does is put most of that on hold.”

Clagett has also been a caregiver on three separate occasions and said there is some beauty in the hard times.

“Being able to usher someone out of the world is very intimate and special,” Clagett said. “Family members often talk about how hard it was, but also how special it was that they were actually able to be there and to be with that person during that time.”

She said it is crucial to have conversations about the needs of caregivers for the future.

“Caregiving is going to happen to all of us and if we don’t become a caregiver, we’re gonna be an individual that’s gonna need care at some point,” Clagett said. “So I think it’s super important to have open conversations about what your wishes are.”

 

Edited by Olivia Gschwind and Emily Gessner