Every day, 10,000 people turn 65 as America’s Baby Boom generation ages. By 2040, the number of people 85 or older will more than double and the need for caregivers will grow dramatically.
In a new episode of Us & Them, host Trey Kay moderates a community conversation focused on some of the unique caregiving needs in West Virginia where nearly 21% of the population is over 65. We’ll also hear excerpts from a recently released PBS documentary called Caregiving from producer Bradley Cooper.
With the potential for Medicaid cuts over the next decade, access to caregiving programs may be a challenge especially for rural regions.
This episode of Us & Them is presented with support from WETA, the Greater Kanawha Valley Foundation and the CRC Foundation.
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West Virginia Public Broadcasting hosted a community conversation timed to the PBS and WETA documentary “Caregiving,” executive produced by Bradley Cooper. The film explored caregivers’ experiences — including Cooper’s own as he cared for his father. Because West Virginia has one of the nation’s highest shares of older residents, we used the occasion to convene caregivers, families and advocates to share stories, surface needs and connect to resources. We recorded the event and produced this “Us & Them” episode.
View the “Caregiving” documentary.
Orlando Craighead, executive director of the Kanawha Coalition for Community Health Improvement, discusses caregiving across West Virginia and how community health partners support families.
Photo by Bobby Lee Messer
“I work with different organizations and try to get resources to our community through events, coalitions and our community health fairs to show that seniors have options. When my grandmother was sick in Kanawha County, we were looking for resources and we didn’t know where to go.
It’s community-based]giving. We can’t rely on the same old system to help us. We, as West Virginians, have to help ourselves and each other. We have to bring our community together and bring organizations together to provide the care we need.”
— Orlando Craighead, executive director of the Kanawha Coalition for Community Health Improvement
Learn more about the Kanawha Coalition for Community Health Improvement.
Eric Hicks, president of Right at Home, an in-home care provider, discusses nonmedical support for West Virginia families. The company’s Charleston office serves Kanawha and Putnam counties, with three additional offices in southern West Virginia. Hicks also founded the I started the Home Care Association in West Virginia.
Photo by Bobby Lee Messer
“That’s one of the reasons I started the Home Care Association in West Virginia: We need a unified voice across the state to push for higher reimbursement so we can pay caregivers more. There are so many people with a kind, caring attitude who want to do this work, but many were forced to take jobs at big-box stores like Walmart or Target because the pay difference was $3 or $4 an hour.
Working with the state, we were successful. In October of last year, we secured a 34% increase. Now we can pay $15 an hour, and we’re working to ensure caregivers are better compensated so people with that caring spirit can be hired and do work they find fulfilling.”
— Eric Hicks, president of Right at Home
Learn more about the Right at Home: In Home Care & Assistance.
Kimberly Taylor Newsome, program director of the West Virginia Aging and Disability Resource Center, or ADRC, discusses caregiver support and services for older adults and people with disabilities across West Virginia.
Photo by Bobby Lee Messer
“We’re a statewide resource agency. We’re not a direct service provider — we don’t send people into your home — but we connect you with the agencies that do. We want the fragmented resources across the state gathered in one place so everyone can find what they need without calling five or six or 10 different numbers. Often people don’t know what to do because they don’t realize how deep they’re in until it’s too late. We always say: We want people to know us before they need us.”
— Kimberly Taylor Newsome, program director of the West Virginia Aging and Disability Resource Center (ADRC)
Learn more about the West Virginia Aging and Disability Resource Center.
From left, Kimberly Taylor Newsome, program director of the West Virginia Aging and Disability Resource Center; Eric Hicks, president of Right at Home; and Orlando Craighead, executive director of the Kanawha Coalition for Community Health Improvement, take part in a Us & Them community panel on caregiving, moderated by host Trey Kay, at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
Between excerpts from the PBS documentary "Caregiving," the panel takes questions from audience members — many of them caregivers, advocates and advisers — at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
Learn more about the University of Charleston Downtown Innovation Hub.
Debbie Boese Elkins, a longtime nurse and childhood friend of Us & Them host Trey Kay whom he hadn’t seen in more than 40 years, shares her experience as a full-time caregiver for her spouse, who has significant memory loss, at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
“I still haven’t wrapped my head around it. When we first noticed issues in 2017, I was in denial — is something wrong? As a nurse, I thought I would recognize the signs, but when you see changes in your own loved one, you second-guess.
Getting a diagnosis was a journey — from asking his primary care physician in 2017 to seeing a neurologist who said he was fine, to an Alzheimer’s diagnosis, and then learning it wasn’t Alzheimer’s. We saw four different neurologists. I was so exhausted I didn’t have time to think about what providing care might mean.
I didn’t reach out for help at first because I didn’t know who to call. With cancer or other conditions, you know the steps and people show up with casseroles. With dementia — in my husband’s case, frontotemporal degeneration — you don’t know who to call; you’re just trying to get through the diagnosis.
And when you finally get the diagnosis and realize there’s no treatment and no cure, the anger, grief and shock hit. Even though I saw it coming, I had a period of paralysis.”
— Debbie Boese Elkins, a full-time caregiver for her spouse, who has significant memory loss.
Check out Debbie Boese Elkins blog where she shares about caregiving.
George Manahan, who runs a statewide Parkinson’s support group, fields calls from families seeking help for loved ones with the disease. Echoing audience concerns about where to start, he says a memorable 1-800 number for caregivers could make a difference in West Virginia, at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
“I get calls from Illinois and Virginia — from adult children whose parents live here. They can’t move home and can’t move their parents to them, so they ask, ‘What do we do? How can we help?’
What we don’t have is a simple entry point. I keep asking: What if there were a single number — 1-800-CAREGIVER — for families to call? It would take money and time, but at least people in another state could find help quickly.
I’ve also wondered about federally qualified health centers — FQHCs — and whether this is a burden they could help carry; they’re in 60 to 70 communities.
Parkinson’s is a slow-moving disease; people can live with it for years. That means we need care in our homes as long as we can. If it moves fast, it’s probably something else.”
— George Manahan, founder of the West Virginia Parkinson's Support Network
Bonnie Dunn, featured in a 2020 Us & Them story about grandparents who are caregivers, speaks at our community conversation at the University of Charleston Downtown Innovation Hub in Charleston, W.Va. She explains how she raised awareness of her program as many attendees cite awareness as a major barrier to finding help.
Photo by Bobby Lee Messer
“I went to the Legislature with my grandmother’s apron — holes and all — and told our story. There’s already an infrastructure — Healthy Grandfamilies coalitions, Area Agencies on Aging, the Aging and Disability Resource Center, senior centers. What we need is something that resonates, like 1-800-CAREGIVER. Most people don’t know acronyms; a simple number is self-evident.
My caregiving started when my stepfather’s checkbook was off by a penny . . . later he stood in the kitchen and asked if there was something that makes coffee — while the same pot had sat in the same place for 35 years. After his dementia diagnosis, I had to find a caregiver and figure out the money. Because my name was on the house and accounts, we could make it work.
We built Grandfamilies in all 55 counties. People knew our number and county contacts, and we moved mountains. The Legislature kept funding because they saw the results.”
— Bonnie Dunn, founder of the Healthy Grandfamilies in West Virginia.
Read more about the Healthy Grandfamilies organization that Bonnie Dunn founded.
Rachel Carrico, a family and elder law attorney, explains how advance directives and other legal documents can guide medical and financial decisions. She urges families to have a basic estate plan so caregivers can act legally on a loved one’s behalf, during a community conversation at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
“The most important document is a durable power of attorney — the ‘golden egg’ of estate planning … Without it, even a spouse can’t access an IRA or 401(k). The alternative is often a court conservatorship or guardianship — stressful, prolonged and expensive; it’s about 70% of my practice.
If you take nothing else from tonight, get a durable power of attorney.
Also consider a written caregiving agreement. Under Medicaid rules, family members are presumed ‘gratuitous’ caregivers; if you pay a child without a properly drafted agreement, you can be penalized when applying for Medicaid."
— Rachel Carrico, a family and elder law attorney.
Find out more about the law practice Rachel Carrico founded: Good Grief Law.
J.T. Hunter, founder of R.E.M.T. Care Partner Coaching, speaks about educating, enlightening and empowering care partners — especially those supporting loved ones with Alzheimer’s and related dementias — at the University of Charleston Downtown Innovation Hub in Charleston, W.Va.
Photo by Bobby Lee Messer
“Caregiving is a big puzzle. If we don’t have every piece — every one of you — it doesn’t work in West Virginia. Too often we’re siloed and short on systems, but the people in this room are bringing back the village and starting a movement.
I’ve spent more than 17 years talking with legislators in Charleston and in Washington, D.C. I can take your stories to them, but what truly moves them is you telling your own story. We all have a mother, a brother, a grandfather — when they hear and see you, they change.
So find your organization — AARP, the Alzheimer’s Association — or contact me if you don’t know where to start. That’s how we change the system. Never underestimate your story; when you’re ready, please tell it.”
— J.T. Hunter, founder of R.E.M.T. Care Partner Coaching
Learn more about R.E.M.T. Care Partner Coaching.
