Karen Custer was a math teacher and coach at Kimball Union Academy. She sang in a group at Meriden Congregational Church. She spent summers sailing off the coast of Maine, where her family had a home on an island in Penobscot Bay.
In her early 50s, the mother of two teenage boys was leading an active lifestyle and seemed “perfectly healthy,” said her husband, John, a KUA history teacher. “Physically, there was no way of really knowing anything was wrong. It took a long time for her to say anything to me.”
She quietly asked the couple’s younger son, Nicholas, a KUA student, to help her with the grading of homework assignments.
“She was pretty calm about things, so I didn’t make the leap that something was seriously wrong,” John Custer said. “She really gutted her way through it as much as she could, but clearly something was going on. She was having trouble with numbers, which is a problem for a math teacher.”
Her doctor ordered a brain scan. The results showed no evidence of a brain tumor, but the news was far from good.
At 52, Karen Custer was diagnosed with Alzheimer’s disease, the most common form of dementia for which there is no cure. She lived for nine more years before her death on July 5, 2013.
The disease usually affects older adults, but it can occur in middle-aged people as well. Roughly 200,000 Americans under 65 are living with what is known as younger-onset Alzheimer’s, according to the nonprofit Alzheimer’s Association.
“It’s not just an old person’s disease,” Custer said. “The faces of Alzheimer’s are not always wrinkled.”
Since Karen’s death eight years ago, Custer has for the most part kept private the struggles and challenges that his family faced during her lengthy illness.
But with encouragement from Kathy Harvard, whose late husband, Andy, suffered from younger-onset Alzheimer’s, Custer agreed to share his family’s story.
Harvard firmly believes that hearing from people who have seen Alzheimer’s up close can make a difference in the way the disease is perceived.
“Instead of running from the disease, society has to be more open,” she said. “We all learn from each other.”
(After meeting Kathy and Andy Harvard in 2015, I wrote about the impact Alzheimer’s had on their family. Andy, a world-class mountaineer, died in 2019. He was 69.)
Kathy Harvard recently put me in touch with Mick Byers, an Upper Valley nurse who has been caring for patients with Alzheimer’s and other forms of dementia for more than a decade. Byers also encourages families to talk about their experiences with the disease.
“It would be great if we could normalize (discussions about dementia) instead of stigmatizing it,” he told me.
With Byers’ help, Harvard came to understand that Alzheimer’s is a medical condition, like cancer and heart disease. “It’s not about normal aging,” she said.
Currently, 6.2 million Americans are living with Alzheimer’s, according to the Centers for Disease Control and Prevention. The number is projected to more than double by 2050, barring any major medical breakthroughs.
Alzheimer’s and other forms of dementia can result in not just a loss of memory, but can affect a person’s judgment, decision making and ability to understand directions, among other things.
In 2004, Karen Custer’s disease had progressed to the stage where she could no longer teach.
With their sons in college, John Custer hired a caregiver to stay with his wife for part of the day while he was teaching nearby at KUA, the 200-year-old boarding and day high school in Meriden.
One spring day before the caregiver arrived, Karen walked a mile to the KUA campus, crossing Route 120, in search of her husband. She wandered into a KUA administrative office, where she was recognized.
John Custer was faced with a difficult decision. At his age — he was six years younger than Karen — he couldn’t afford to stop working and become his wife’s fulltime caregiver. At the same time, it wasn’t safe to leave her alone for even a few hours.
In 2008, Custer moved his wife to an assisted living facility with a memory care unit in Newport, N.H. For the next five years, he’d finish classes in the afternoon and then get in his car to make the 30-minute drive to Newport. Sometimes, they’d go for short walks before dinner.
Custer felt he was more fortunate than many people in his situation. Karen still recognized him and she didn’t suffer from drastic mood swings. “She was calm and friendly to people,” he said. “She appreciated people talking with her, which was nice.”
In 2006, Karen made the trip to Washington to attend her son Nathaniel’s graduation at Georgetown University. Three years later, however, she wasn’t up for traveling to Nicholas’ graduation from the U.S. Coast Guard Academy in New London, Conn.
Over the years, she lost her ability to communicate and her memory faded.
A person’s life is made up of memories, “but she lost that,” Custer said. “She spent the end of her life not knowing how well her boys were doing.”
On Saturday morning, the annual Upper Valley Walk to End Alzheimer’s will be held at Hanover High School. The event starts at 9 a.m. More information, including how to pre-register, can be found at act.alz.org/upper valley.
Custer, who remarried in 2018, will be among the people joining Harvard, who is spearheading the effort. A dozen or so students from KUA, where Custer is in his 28th year of teaching and coaching, will also participate in the walk.
Jim Kenyon can be reached at jkenyon@vnews.com.
