Edward Harper has three areas of focus each time he meets with a client. First, he listens to the person’s story. He provides an attentive ear and gauges the situation. Second, he offers a two-part strategy, actionable items for now and things to consider for later. Finally, he suggests resources and connects clients with professionals who can help.
One glance at his day planner provides a glimmer into what his average workday must be like: nearly every line on each day has a name written down. There are scribbles in the margins, and the pages are worn from all the flipping and note-taking. The rainbow of highlighted information only makes sense to Edward, but it’s the method that works best for him. Over the course of an hour’s interview, his phone rings and chirps multiple times. Edward is a wanted man.
In fact, within the first fifteen minutes of sitting, his phone rings, and he must take the call. It’s a Knoxville woman whose sister is in a skilled nursing facility in Texas, and she wants to bring her to Tennessee. Edward gently asks if this is time-sensitive so he can do some digging and get back to her at a better time. He agrees to call her back around 6 p.m., well after traditional working hours.
“That’s what I do,” he says. “People from all over the world work here – in Oak Ridge, at UT, DENSO – and they all have aging parents in Hong Kong, Italy, Great Britain, New Zealand… I’m not a case manager or therapist. I’m a consultant. I’m responsible for the caregiver.”
The landscape of caregiving has expanded exponentially over the last few decades with people living well into their 90s. The statistics are staggering. A 2020 study by the National Alliance for Caregiving and AARP found that caregiving now spans four generations, and the number of caregivers increased by 9.5 million in the previous five years. Currently, one in five adults is actively caring for an aging family member.
Edward Harper is no stranger to this experience. By his mid-30s, he and his wife were caring for her father, who had Parkinson’s, and then his father, who had Alzheimer’s. By his mid-40s, Edward was driving back and forth to his parent’s house south of Greensboro, North Carolina, every couple of weeks to check on them, to offer care. He’d been working in mental health and family therapy since 1975, so while this process was familiar to him, Edward wasn’t immune to the toll it would take.
“I was coming back late one night and had a feeling that I wanted to talk to someone. I was a therapist, but I didn’t want to talk to a therapist. I wasn’t depressed. Maybe talk to my faith leader? But I wasn’t angry at God. I talked to my friends, but that can change the dynamic of the friendship,” he says. “So, one night, I’m at Big Lots, and the cashier asks how I’m doing. I was up to here (gestures to his forehead), so I said, ‘I don’t know. I just came back from North Carolina where I’m taking care of my parents…’ and she says, ‘Me too,’ and then we were telling our stories. That was it. I realized there was nothing organized for this.”
By November 1999, Edward had started a caregiving support group at Blount Memorial Hospital in Maryville, where he’d worked since 1986. By 2001, the hospital established his position as the Senior Services director and provided the funds for him to be the go-to person for caregivers in need of advice. For more than two decades, Edward has been answering calls, offering advice and a listening ear, and helping people navigate the emotional and physical space of caregiving.
“This is ambiguous grief,” he says. “People come in and don’t want to talk about how they are feeling because there’s too much to feel. We’re able to compartmentalize and get things done so the feelings can come later. In the moment, people want to know what to do. I’m able to put emotions aside. If I can assist you in your caregiving, you’ll be safer, stronger, and a better caregiver.”
Edward has upwards of 400 face-to-face sessions each year and hosts support groups twice a month. The amount of phone calls and texts are too many to count. The need is astronomical, and Edward is a one-man show.
He gets a text. The woman on the other end must navigate transferring a loved one from one facility to another, and she’s feeling pressure from the hospital. Unable to make a decision, she reaches out to Edward for advice. He is careful to avoid directives but rather offer some things to consider, to suggest some questions to ask, and to affirm her concerns. He finishes the exchange with, “I agree with your decision” and “Keep me in your loop.”
“That’s how it goes some days. Every 30 minutes,” he says. Edward carries two cell phones and communicates in every possible way – emails, texts, Messenger. “I don’t keep office hours. When I designed this program, I knew the urgency was now.”
This stage of life has often been called the sandwich generation, people who are caring for aging parents while also still raising their own children and retaining full-time jobs, but Edward thinks the term club sandwich makes more sense because there are many more ingredients in play.
“The family caregiver is the pivot point for everything. There’s no time between the next duty, the next emergency. Younger folks are taking care of their parents, who are in their 60s and 70s, because there’s been some health emergency, like chronic illness that’s reached critical mass, or something like a stroke. There are financial incidentals that aren’t covered by insurance,” says Edward. “We used to have seven caregivers for every one person, but now there are about four caregivers to one. For Millennials, they are taking care of three generations.”
Edward does what he can. He listens. He vets companies for referrals. He makes suggestions and empathizes. He wonders what this program will look like as his own retirement looms later this year. Yet, the public need for caregiving support is growing as the average American lifespan grows. Edward believes the answer lies in more adult day service programs, organizations and companies positioned to help Millennials and Gen-X provide in-home care to aging parents.
He also wants everyone 18 years old and older to have an established power of attorney.
“These are not old people documents,” he says. “It is necessary for you to have someone to speak for you, someone who has the authority to speak on your behalf medically and financially. Being married does not constitute power of attorney. It’s a constitutional right to assign someone.”