By Tabitha Evans Moore
Editor & Publisher

When I set out to write about Saturday’s Walk to End Alzheimer’s, I asked several Moore County residents touched by the disease if they would share their stories. I didn’t know, when I reached out to Terry Sue Fanning and Tanya Vann separately, that the two women were each other’s closest friend — or that each had spent years helping the other survive exactly what I was now asking them to describe.

I only realized it after the fact. Reading through Tanya’s answers, she mentioned a close friend who had helped her through it all. I texted her and asked, “Is Terry Sue the friend?” She said, “Yes. Happens to be one of my best friends.”

It felt serendipitous. It also turned out to be the whole point of Saturday’s Walk to End Alzheimer’s event in Lynchburg: that no one gets through this disease alone, and that the people who do get through it tend to find each other.

TWO JOURNEYS, ONE FRIENDSHIP

Terry Sue’s path with Alzheimer’s ran through two people she loved most — her mother, Betty Jo Robertson, and her younger brother, Michael Robertson. Tanya is still on her path, caring for her mother, Maggie, who now lives in assisted living in Tullahoma.

Terry Sue’s mother was 94, and what the family eventually learned was vascular dementia touched her only in the last five or six months of her life. Her brother’s journey was different, and far longer. Michael was diagnosed with Lewy body dementia — a form of the disease caused by protein deposits that attack the brain. The family spent months not recognizing what they were seeing.

“We thought, he’s really depressed, and this is hard,” Terry Sue said. It was 2020, the family was scattered by COVID, and Michael had lost his wife to ovarian cancer the year before. It took his son coming to Terry Sue with a warning — that his father was spending money strangely, that he wasn’t himself — before the family understood they were watching something else entirely. Michael passed away in August 2025, roughly five years after those first signs appeared. Betty Jo passed away a month earlier, on July 1.

“My mother did not have to know that my brother passed away,” Terry Sue said. “She really had a hard time” even sensing that something was wrong with him, and Terry Sue has come to believe it was a mercy that her mother’s own decline spared her from fully grasping her son’s.

Tanya’s experience began, in some ways, more quietly. She and her family started noticing her mother’s memory issues eight or nine years ago, well before her father’s death in 2020 made Tanya and her siblings her mother’s primary caregivers. One early moment stands out: her mother called, upset, convinced someone had been sneaking into her house at night and placing unfamiliar clothes in her closet. It was a pink coat — one Tanya and her mother had actually bought together on a shopping trip the year before.

“I corrected her and reminded her that we had bought it shopping,” Tanya said. “It didn’t satisfy her. Instead she said she wished I would at least tell her if I was going to put new clothes in her closet.”

She lived independently for five years after Tanya’s father died, but came home to Tanya’s house after suffering a fall. After eight months, her mother moved to assisted living — not memory care, since she could still feed and dress herself. Tanya now hears from her mother constantly; on one recent day, eleven calls came in, ranging from “what are you doing today?” to “I don’t have a car, and I don’t know where to go from this big house,” to asking where her late husband, Clay, was and when he was coming home.

THE PARTS NO ONE WARNS YOU ABOUT

Both women spoke about the specific, unglamorous realities of caregiving that rarely make it into public conversation about Alzheimer’s — the ones that are hardest to explain to someone who hasn’t lived them.

For Terry Sue, one of the cruelest was watching Michael lose the ability to communicate. He developed Parkinson’s-like symptoms alongside the dementia and eventually couldn’t raise his arms or speak. Ordinary moments most people never think twice about — reading a restaurant menu, pointing to what you want to eat — became agonizing.

“He would look at me, and he would try to tell me what he wanted from that board, and it would come out, and I couldn’t understand,” Terry Sue said. “The look in his face when he couldn’t communicate was a mixture of frustration and fear and anger, all at once. That’s heartbreaking.”

There was also the matter of money — the part of Michael’s story Terry Sue is determined not to keep quiet about. As his disease progressed, he became the target of financial scams and fraud, sending money to people online who claimed to be a woman who intended to move in with him and invest in his future. What the family originally dismissed as an adult making his own decisions turned out to be far more serious.

“He was involved in fraud. He was involved in some of the scams,” Terry Sue said. “When we finally said, ‘oh,’ and started looking, it was much worse than I ever thought.”

She remembers physically wrestling a cell phone away from her brother, telling him: “If you haven’t kissed these people, touched them, or hugged them, they’re not real.” He held onto that phone, she said, because whatever those strangers represented to him, it felt like something worth fighting for.

Terry Sue wants that part of the story told, not hidden.

“You shouldn’t be embarrassed about this,” she said. “People should understand it can happen to anybody.”

Tanya’s hardest adjustment came earlier and more personally — the moment her role quietly shifted from daughter to decision-maker.

“My role changed when my father passed away,” she said. “I became the decision maker, the bill payer, and the one trying to monitor feelings and reactions to situations.”

She also names something few caregivers hear anyone say out loud: the importance of not ignoring your own health, especially mental health, while you’re busy tending to someone else’s.

WHAT CARRIED THEM THROUGH

For both women, what made the unbearable bearable was largely the same: family, faith, and each other.

Terry Sue described leaning on her nephews and nieces as a team through Michael’s decline, and on her Christian faith to make sense of what she couldn’t control. She also found unexpected support in online communities for families facing Lewy body dementia — a disease rare enough that she initially assumed her brother, in his mid-fifties, was one of the only people ever diagnosed with it that young.

“It helps you understand, and you get tips and tricks,” she said. “I don’t know how people do it without friends, family, people they can talk to, places they can get information.”

That’s precisely where Tanya fit in.

“I had a friend going through something similar with not one but two family members,” Tanya said, describing Terry Sue. “She and another one of my friends have been sources that keep me focused and not let me get down on myself.”

When Tanya’s mother was living with her and resisting outside help, it was that same circle of friends who pushed her to bring in support anyway — even when her mother, unable to remember having met the helper, wasn’t happy about it.

Tanya has also come to rely on the staff at her mother’s assisted living community, who encouraged her to trust them with her mother’s day-to-day care.

“They have encouraged me to trust them to check on mom,” she said. “I have, as a result, been able to let go and not visit quite as much.”

Terry Sue found something similar in her brother’s nursing home in Lynchburg, where staff learned to turn on the football game or golf on the weekends, just because they knew he liked it.

“They loved him and loved on us,” she said. “It was absolutely one of the saving graces.”

MOMENTS OF GRACE

Both women were asked whether they had found unexpected joy in the middle of all this loss, and both answered instantly.

For Tanya, it’s a small softening in her mother’s personality.

“My mom was never one to say I love you out loud,” Tanya said. “When I leave and hug her, I tell her I love her and she reciprocates. She will also sometimes tell me she misses me when she calls and I can’t answer. That part is hard, but also a change in her previously independent personality that is sweet.”

For Terry Sue, it’s a memory from the front porch of her brother’s nursing home, looking out at Moore County High School, where they both attended. Michael could no longer speak by then, so Terry Sue would turn on the Eagles, or Chicago, or whatever ’80s music he loved, and talk to him about the friends and stories from their childhood.

“He couldn’t talk, but I could,” she said. “We would sit quietly, or I would talk, and we would just enjoy time out there. That’s one of many things — I took the time to really be in the moment because I knew there weren’t a lot of moments left.”

It’s a line Terry Sue has come back to more than once, and one that captures something true about the disease that grief books call “the longest goodbye.”

“You live in the moment because you realize there aren’t a lot of moments left,” she said. “It takes you a while to get there. A lot of tears and a lot of soul searching.”

Terry Sue also carries what she calls survivor’s guilt — grief for a brother who never got to enjoy his grandchildren the way she has hers, and a quiet sense of responsibility now to make sure his grandchildren feel loved and connected to her side of the family in his place. That guilt sits differently, she said, when it comes to her mother, who lived to 94.

“That’s a life well lived,” she said.

But even there, she carries the awareness of what her mother was spared — the full weight of her son’s decline — as its own strange mercy.

ADVICE FOR SOMEONE JUST STARTING OUT

Both women had practical counsel for families noticing the first signs of Alzheimer’s in someone they love.

“Get a journal or use the notes on your phone,” Tanya said. “Write things down and date it. When you eventually go to the doctor, use those notes to help you. It is hard to remember dates and times.”

She also urges families to talk early — while it’s still possible — about who a loved one wants making financial and medical decisions on their behalf, and to get that paperwork in place before a diagnosis makes it legally complicated.

On the emotional side, Tanya offers this: “Having patience and going with the flow of where their mind is and what they are thinking is crucial. I had someone tell me that dementia is like living a crazy dream out loud. It is real to them. If you can agree or go along without correcting, it keeps the temperature down.”

Terry Sue’s advice is about resisting comparison.

“Everybody’s journey looks different,” she said. “You can’t compare what somebody else is doing to what you’re doing. You just got to do the best you can.” And, echoing Tanya almost exactly, she said the thing she wishes someone had told her sooner: “If you have siblings or close family members, ask for help with things. I took on the role of caregiver without anyone asking or forcing me. I have found if I ask, I have whatever is needed.”

THE WALK TO END ALZHEIMER’S

Tanya will be out of town this weekend and unable to attend Saturday’s Walk to End Alzheimer’s, but she believes in what it stands for.

“I believe the walk provides unity and support to many who are going through similar situations,” she said.

Terry Sue plans to be there, at least for part of it, before heading to her grandchildren’s ball games — which, she said with a laugh, is exactly where her brother would want her to be. She still supports the research the walk funds, with an eye toward the next generation.

“There will be times when this won’t be as devastating as it was for us,” she said. “Maybe it’s his grandchildren that benefit.”

The Alzheimer’s Association’s Walk to End Alzheimer’s steps off Saturday, September 19, at the Jack Daniel’s Visitor’s Center located at 113 Lynchburg Highway. Registration opens at 8 a.m., followed by the Promise Garden Ceremony at 9 a.m. and the walk itself at 9:30 a.m. This year’s local event, sponsored by the Jack Daniel Distillery, has set a fundraising goal of $70,000 for Alzheimer’s care, support, and research, and has raised nearly $50,000 so far from 134 registered individuals across 25 teams. Donations and registration are open at act.alz.org.

Held annually in more than 600 communities nationwide, the Walk to End Alzheimer’s is the world’s largest fundraiser for Alzheimer’s care, support, and research. Worldwide, more than 55 million people are living with dementia; in the United States alone, more than 7 million people are living with Alzheimer’s, and nearly 13 million people are providing unpaid care for them — people like Terry Sue Fanning and Tanya Vann, who found, in each other, a way to carry it. ֳ•

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