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Aging in Appalachia

Families Struggle Against the Unknowns of Alzheimer’s across Appalachia

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Carol Ware points out a photo of Keith playing with his youngest grandchild early into his diagnosis. Keith now often calls is grandchildren his childrens' names. Photo: Kara Lofton/West Virginia Public Broadcasting

For families struggling with Alzheimer’s in Appalachia, the road can be lonely and long. Alzheimer’s is a brain disease that is the most common cause of dementia in older adults. Patients with the disease can live as long as 20 years after diagnosis.

During that time they become increasingly dependent on loved ones for care — you might have heard of someone forgetting how to get home or go to the grocery store they’ve been frequenting their entire life. But they also may forget to eat or to take medicines properly, and eventually, memories of loved ones begin to pass too.

“I am a caregiver. You’ve changed from wife to caregiver,” said Carol Ware. “I don’t get hugs. That kills me — I don’t get hugs. He doesn’t have the emotion he used to, it’s just really hard.” Ware and her daughter Traci Eddy live side by side in homes on a quiet street in Marietta, Ohio. Carol’s husband of 46 years, Traci’s dad, has Alzheimer’s.

Carol Ware looks through old albums at photos where Keith was doing better than he is today. Photo: Kara Lofton/West Virginia Public Broadcasting

Keith Ware first began displaying symptoms of Alzheimer’s 12 years ago in his late 60s. At first he couldn’t remember his youngest grandchild’s name. Then he began to forget where his favorite restaurants were and stopped caring about his personal hygiene.

“I don’t understand Alzheimer’s at all,” said Ware. “One day he seems like he’s fine and the next he can’t even pick up his fork. Part of the time he can and part of the time he can’t.”

Each day, Ware said, she doesn’t know what she’s waking up to.

The incidence of Alzheimer’s is increasing in every state in our nation.   

“It takes a lot to care for someone with Alzheimer’s disease,” said Marc Haut, director of clinical research at the Rockefeller Neuroscience Institute and a clinical trial team member at West Virginia University. “It is very draining. It is a really hard task and job to do. Because typically you’re caring for somebody who means the most to you in the world and you’re watching them change in front of you. And not only is it physically draining, but it can be emotionally draining seeing that person change in front of you who is no longer becoming that person that you know.”  

More than 220,000 Ohioans are living with Alzheimer’s, according to the Alzheimer’s Association. It’s the 6th leading cause of death in Ohio, according to the Centers for Disease Control and Prevention. In West Virginia those numbers are 37,000 and 7th leading cause of death. Which, Haut says, may not accurately represent the disease’s impact on the state.

“So that might be a counting problem.”

Haut says that people who live in rural areas have less access to health care and have higher risk factors — like high blood pressure, obesity, high cholesterol, coronary artery disease — that cause vascular problems in the brain.

Traci Eddie, Carol and Keith Ware’s daughter, looks at albums with her mom. Eddie and the Wares live side by side homes on a quiet street in Marietta, Ohio. Photo: Kara Lofton/West Virginia Public Broadcasting

“We know those run very, very high in this state. And those aren’t the cause of Alzheimer’s disease, but when you get those factors combined with the genetic risk it seems to bring it out more.”

Haut’s team at West Virginia University is running a clinical trial to see if ultrasound could be used to address early Alzheimer’s.

But he said it’s hard to treat Alzheimer’s when scientists still don’t understand the disease. “It’s a really complex disease, and we don’t know the basic causes and how the mechanisms actually work to produce the symptoms,” he said.

The not-knowing — and the paucity of societal support — makes life super difficult for caregivers like Traci Eddy and Carol Ware.

Every day Keith goes to an adult daycare in Marietta, which Ware said is a lifesaver for her. She pays $20 a day for him to go 5 days a week.

Keith Ware attends adult day care at the O’Neil Senior Center in Marietta. Each day his wife Carol puts him on and off the bus. Photo: Kara Lofton/West Virginia Public Broadcasting

“I don’t know if I could keep him at home if he didn’t have that because I would be nuts,” said Ware.

When he comes home, though, Carol said he’s worse than he is at daycare — sometimes pacing around the house saying he’s got to do something but unsure what.

“And I don’t know why. I don’t know why he’s worse with me than he is with other people. And that’s one thing I’ll never understand — they say the caregiver gets the blunt end of everything.”

Last year, Keith was put on hospice. The experience was a welcome relief for Ware. She loves her husband deeply, but the extra daily help and the allocation of five days a month of respite hospice meant that she was able to continue to care for her husband AND care for herself.

Carol and Traci greet Keith after he’s dropped off from adult daycare. Photo: Kara Lofton/West Virginia Public Broadcasting

But Keith didn’t decline quickly enough and legally hospice had to withdraw, so now she’s back to where they were before. When she needs a break, she says she has to pay out of pocket for respite caregivers.

There are some services available in Ohio for respite, but daughter Traci Eddy said her family has been just over the income-asset guideline for the services they’ve sought. She also said even with help from the Alzheimer’s Association, finding available resources is really challenging and it’s possible there are some they haven’t been able to discover. Or maybe not.

The current plan is to keep Keith home as long as possible and hope a spot comes open in a Veterans Administration nursing home before his wife can’t care for him any longer. If one doesn’t, Eddie said Ware will have to spend down their retirement to pay for care. Eventually, when she runs out of funds, Keith will qualify for Medicaid. But she hopes it doesn’t come to that.

“The phrase we use a lot is, ‘You can’t take care of so and so unless you take care of yourself,’” said Haut.

Keith and Carol Ware talk after he came from adult daycare. Keith was a Vietnam War veteran and spoke about building planes. Photo: Kara Lofton/West Virginia Public Broadcasting

“That’s really easy for us to say as healthcare providers, and we know it’s really hard for families to be able to do that. Because somebody’s got to be there. Sometimes somebody’s got to be there 24-7. So who is going to go to the store? Who is going to pick up the prescriptions? So having that kind of respite and backup and stuff like that — particularly if you live a mile off the hard road as some people do in West Virginia — makes it really challenging.”

In West Virginia, the Bureau for Senior Services runs a program called Family Alzheimer’s In-Home Respite that provides up to 16 hours a week of respite care to families on a sliding fee scale. There are also some federal programs that provide respite. But for people like Eddie and Ware, who spend years of their lives caring for a loved one with Alzheimer’s, programs like this just aren’t enough.

Editor’s Note: Clarification 4/17 A previous version of this story said “Ware plans to spend their savings down so Keith qualifies for Medicaid.” It now reads “Ware will have to spend down their retirement to pay for care. Eventually, when she runs out of funds, Keith will qualify for Medicaid. But she hopes it doesn’t come to that.”

This article was originally published by West Virginia Public Broadcasting.

Aging in Appalachia

Dying with Dignity

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Shelia Brown sits on her couch below framed pictures of she and her husband over the years. The two were married for 50 years. Her husband Waitman passed away from lung cancer in 2018 after being in hospice for almost a year. Photo: Kara Lofton, WVPB

Hollywood tells us that love stories are about the beginning — catching an eye across a crowded room, a first date, a dramatic proposal. We see little, if anything, after the fairytale wedding. But for many, the greatest testament to love is not the first moments, but the last.

And, for some of us, navigating the last moments means asking for help.

Yet people in Appalachia can be suspicious of end-of-life care, especially hospice care. There’s a perception that when hospice comes in, it’s only for the last hours before someone dies, rather than easing the last weeks or months of life. That was certainly what Sheila Brown thought.

Sheila and Waitman Brown were married for 50 years. They were high school sweethearts and raised two children in rural Wyoming County — in southern West Virginia.

“He was a coal miner,” said Sheila. “We got married in ‘67, I graduated high school in ‘68. And then I got pregnant with my son in the latter part of ‘68 and he was shipped to Vietnam.”

There, Waitman was exposed to Agent Orange. Combined with later years in the coal mines, Waitman struggled with his health. He had three bouts of cancer.  The last time he was diagnosed with stage four lung cancer.

“I would walk him down the stairs and put him in the shower and I’d have to get in the shower with him and bathe him and stuff,” she said. “I’d get him out and sit him on the commode and by the time I’d get him dried off I was worn plum out. I stayed real tired all the time and they said ‘this is what hospice is for — hospice will help you with all this stuff.’”

At Sheila’s urging, Waitman decided to try treatment, which the doctors told them would not cure the cancer, only prolong his life. He couldn’t keep it up. So someone at the hospital recommended hospice.

Sheila was pretty resistant at first. She said she was scared because she had always been told that when hospice comes, you only have a few days left.

Sheila Brown, 2019. Photo: Kara Lofton, WVPB

And hospice doesn’t always have the best reputation. A 2017 joint investigation between Time Magazine and Kaiser Health News found over 3,000 complaints filed over a five-year period against the nation’s 4,000 hospice organizations. The complaints referenced everything from hospice workers failing to show up to unreturned phone calls and broken hospital beds.

Medicare now has a link on its website from which you can compare hospice agencies in your area. Most, like the one that served the Browns, are non-profits and rate well. And most people, like the Browns, have a good experience. In fact, hospice worked with their family for almost a year.

“It helped my husband [with] what time he had left when he felt good,” said Sheila.

Landon Blankenship is the chief nursing officer of Hospice of Southern West Virginia,the agency that worked with Sheila and Waitman. He said from his perspective, the point of hospice is exactly the benefit that Sheila described.

“Our goal is to make the last days, the best days. A lot of people think hospice is for the dying. We tend to think hospice is for the living.”

Blankenship said when hospice staffers come in, they aim to help the patient live their last days as comfortably as possible: with no pain; able to breathe freely; able to accomplish that last bucket list item — attend their daughter’s wedding, go to the family reunion, make one more birthday. Yet in southern West Virginia, he said there are a couple of hurdles for getting people to use hospice in the first place.

“Well, we [West Virginians] take care of our own,” said Blankenship. “Getting in the home is the problem. Once you’re in, you’re treated like family, so it’s just breaking through that barrier there to actually have some to accept you into their home.”

He thinks the hurdles start with late referrals from medical providers

“A lot of physicians are hesitant to make referrals earlier on,” he said. “Our rule of thumb is if you have a patient and you think that there’s a possibility that they can pass in the next year, that’s probably an appropriate time to make a hospice referral.”

Yet doctors are taught to treat. They often try and “save” the patient no matter the cost, which Blankenship thinks is the wrong tactic.

“I don’t think there’s a lot of framing of goals,” he said. “Everybody wants hope. Everybody wants that next best treatment. Everybody thinks it’s in that next chemo, it’s in that next pill, but it’s in that next surgery. The unfortunate thing is sometimes there is no hope in another treatment. So we need to get to the point in my opinion that we do a better job in the medical community of reframing our goals.”

Which may mean teaching medical providers to sit down with patients and their families and to truly talk through what their goals are for the next phase. For Waitman Brown, that was getting to his 71st birthday, which he did. Sheila threw him a huge party and the community, including one of the hospice nurses on her day off, turned out to celebrate his life.

“It was snowing that day,” said Sheila. “But my house was packed out full. I mean we had him a big birthday party and he was tickled to death, but he didn’t have hardly enough oxygen to blow his candles out.”

Two months later, he was moved to the Bowers Hospice House in Beckley, where he could receive even more attentive care. He passed away shortly thereafter.

Blankenship continues to check on Sheila periodically. She’s got health problems of her own and her son moved her from Wyoming County to just outside Charleston to be closer to him and her doctors. But she said when her time comes, she won’t have any problem with using hospice herself.

Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.

This article was originally published by West Virginia Public Broadcasting.

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Aging in Appalachia

As Appalachians Age, Their Caregivers Struggle with Isolation

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85-year-old Betty Jones sits at Capitol Market in Charleston. Faith in Action helps Jones go to the grocery store, run errands and get to the doctors office when she needs it. Courtesy of Faith In Action

Caring for loved ones as they age can be incredibly demanding. It can also leave the caregiver feeling forsaken by society — especially as families move away from the home base, leaving fewer people to share responsibilities.

“I have two sisters who I love dearly, but they both live in Florida, so it’s me,” said Tricia Kingery. Kingery is part of what some social scientists call the sandwich generation. She’s simultaneously responsible for caring for her daughter — age six — and her aging mother.

“We have some family, but over time family shrinks and people move away and really I’m the only one my mom can count on, so there’s a lot on my shoulders.”

Kingery is an educated small-business owner and the epitome of an energetic go-getter. But after her father died and the responsibility of caring for her mother fell to her, she said she struggled to find help.

“I have found finding the services, support, resources, friendships, whatever, to be the most challenging thing I’ve ever seen,” she said. “I’m a little bit angry that our society and our culture does not take care of our senior citizens. It baffles me — they’re so vulnerable and they’re so lonely.”

Not only is Kingery in the sandwich generation…trying to balance work, marriage, motherhood and caring for her own mother, but her mom, a retired English teacher who was married to a retired principal, is middle income. Which means that she makes too much to qualify for a lot of the state services, yet also doesn’t bring in enough each month to afford private care. Kingery said there are a handful of programs in the state that offer sliding fee rates for their services.

“But still that’s an hourly rate, and if you multiply that by 24 hours or 8 hours or even 4 hours, there goes her whole money,” she said.

Jenni Sutherland, executive director of Putnam County aging, said Kingery’s situation is not an anomaly.

“I find that the people who really struggle the most are those who are just over the income asset guideline for Medicaid and have worked hard their whole lives and have saved — and then they’re not eligible, because they have a couple thousand extra dollars in the bank or whatever,” said Sutherland.

Part of the problem, Sutherland said, is that people — especially in the more urban areas — aren’t staying in their home communities the way used to.

“If you get out into some of those really rural areas, you’ve got five generations of a family maybe living in the same holler, and they’re all right there and they can provide support and help to each other. But you get into Kanawha County and Cabell County — some of the more urban areas — and a lot of those kids have moved on and they [the elderly] don’t have the family support.”

Faith in Action

As baby boomers age, and their children leave the state, some residents are seeking innovative solutions to make senior care more affordable.

Years ago, when Jennifer Waggener was working for the Alzheimer’s Association while caring for her own aging parents, she found there were big gaps in services available.  To change that, she started Faith in Action in 2014.

Faith in Action is a volunteer-driven organization that provides transportation to doctors’ appointments, and the grocery store, plus home visits  and “Honey Do” crews that provide maintenance, painting and yard work free of charge. In October of 2018, Faith in Action had more than 200 volunteers serving more than 530 seniors in Kanahwa and Putnam counties. Waggener said as West Virginia ages, she expects the need for the services like Faith in Action to grow even more.

“We have to find and exploit creative and innovative ideas that are out there in the community… There needs to be a lot more collaboration, there needs to be a lot more discussion and conversation and actual acknowledgement that this problem is coming,” she said.

A couple of months ago, Kingery was desperate for help with her mom — even if it was just someone her mom could talk to on a daily basis other than her. After extensive research, she stumbled upon Faith in Action, took Waggener to lunch, and recently submitted an application for her mother. But Faith in Action isn’t in every county in West Virginia. Which means although the program will provide some relief to Kingery’s mother and similar families, many more families will still struggle.

Editor’s Note 3/13/2019: An earlier version of this story spelled Jennifer Waggener’s last name as Waggoner.

Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.

This article was originally published by West Virginia Public Broadcasting.

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Aging in Appalachia

Isolation and Loneliness in Older West Virginians

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Debbie Young delivers a meal to a senior in South Charleston. Photo: Kara Lofton/West Virginia Public Broadcasting

Cheryl Powell lives in senior housing in Nitro. She’s  63 years old and has been receiving Meals on Wheels for a couple of years. 

“Because I’ve had strokes and different things wrong with my body,” she explained.  

After her strokes, Powell really couldn’t get out to grocery shop. Or go anywhere for that matter.

“I’m blind in this eye and I’m getting cataracts in this one, so it’s hard,” she said. 

In some ways, Powell is lucky. She’s extroverted and although she doesn’t walk well, she leaves the door to her apartment unlocked and some neighbors stop by and chat when they feel like it. 

For other seniors in rural Appalachia, meal delivery programs like Meals on Wheels may be the only contact they get with another human on a day-to-day basis. 

“The things about the home delivery program is if our driver is five minutes late, the senior is calling them. And that lets me know exactly how important the interaction is with that senior,” said William Carpenter, president of the West Virginia Directors of Senior and Community Services Association. 

“You know it’s not just delivering a meal, it’s a friend showing up at the door every day. And to me that’s the most important aspect of that program,” he continued. 

The new National Report on Healthy Aging found that 1 in 3 American seniors report being lonely. This is huge in terms of the potential impact on health. Laurie Theeke, a nursing professor at West Virginia University who has conducted studies on loneliness, said isolation and loneliness can have a big impact on human health. 

“We know that loneliness has a negative impact on human health — let me just say that,” she said. “And it also is linked quite clearly to inflammatory problems like hypertension, coronary artery disease, stroke and depression. And we know it leads to functional decline and overall mortality in older adults samples… from many countries.” 

Theeke said loneliness in seniors may be worse in Appalachia in part due to how rural the area is, but there isn’t a ton of data to back that up. 

“Nationally the prevalence [for loneliness] is 16-17 percent for adults age 50 and older,” she said. “And so in West Virginia we’re seeing that, for example, in one study we did of older adults, we only had one person who was technically not lonely. Many, many of our older adults had some perception of loneliness.”

Debbie Young works for the Kanawha County home meal delivery program as a driver. She said she used to deliver to a gentleman who had a huge spider web across his front porch. She’s rather short, so she was able to duck under it when she delivered his meal. The spider web wasn’t broken for weeks. And she said she doubted any other visitors were ducking. 

“Some of them I know I’m the only one who sees them….at all,” she said, by way of  explaining that the cobweb example wasn’t unusual. 

Health professionals say simple interactions, such as chatting with the mailman or a meal delivery person, can have some impact on loneliness. But the amount of impact varies from person to person. 

Carpenter said he suspects it’s a lot, though. 

“It means so much for a very simple program to those seniors,” he said.  

Yet across the state, home meal programs like Meals on Wheels struggle with funding. Meals on Wheels gets funding from both the federal and state governments. But the federal reimbursement rates haven’t changed in years, while the cost of providing the service — wages, gas, maintenance on vehicles — has risen. The state has increased its portion to try and make up the difference — which Carpenter said has helped — but it’s not enough. Fundraising also helps a little. But still, some programs have had to move from delivering five days a week to three. 

“In Lincoln County we have about 25 people on the waitlist,” said Carpenter. “However, our funding has been so low for such a long time we haven’t actively recruited people. I guarantee you that if I went in Lincoln County and looked, I could come up with 100 people. And that’s the situation we’re in. We love what we do, but without funding we can’t promote the services to the seniors for fear they’ll use them. Because of cost. And that’s a sad situation.” 

And for senior West Virginians for whom the Meals on Wheels driver is the only person they have regular contact with, reducing delivery days means they literally won’t see an actual human being that day. With 27,000 West Virginians turning 60 every year, the burden on programs like these is only expected to grow.

Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center. This article was originally published by West Virginia Public Broadcasting.

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