Dan and Mary Kay Verhoff
Photo courtesy of Mary Kay Verhoff
COLUMBUS GROVE — Mary Kay Verhoff knew something was amiss when her mechanic husband asked her how to replace a light bulb.
Then she got the dreaded call from Dan’s boss: Dan could no longer operate heavy machinery; the company was letting him go for his own safety.
“He politely asked, ‘Do you want me to tell him, or do you want to wait for him to come home?’” she recalled.
So begins Verhoff’s 10-year journey as a caretaker to a partner with frontotemporal dementia, which she recounts in her new book, “Just Breathe: A Caregiver’s Journey through the Depths of Dementia.”
Few resources exist for caregivers whose spouses, siblings or children are diagnosed with frontotemporal dementia, or FTD, as Verhoff learned when she searched for information about the disease that was slowly killing her husband.
The disease is often misdiagnosed as anxiety or Alzheimer’s disease, the most well-known form of dementia. The brain’s frontal and temporal lobes deteriorate, causing behavioral changes and aphasia, or trouble with language.
Verhoff knew something more serious than anxiety was causing Dan’s memory loss, but it took doctors a year and a half to reach a diagnosis.
Verhoff retired early so Dan could live at home as long as possible, until Dan’s seizures and strokes were too frequent for her to manage alone. She took him to the Meadows of Kalida, where he died Aug. 25, 2022, eight days before their 45th wedding anniversary.
Dan eventually lost his vision, his ability to bathe and eat with utensils.
“He’d hold up a sock and ask, ‘What am I supposed to do with this?’” Vehroff recalled. But Dan never forgot names: “He knew everybody right to the very end,” she said.
The book’s title, “Just Breathe,” is a reference to the countless times Verhoff found herself holding her breath while she cared for Dan. The phrase became her mantra, as she reminded herself to breathe. Now, she wants to remind her fellow caregivers to breathe — and forgive themselves for the emotions they experience along the way.
“Just Breathe” draws on Verhoff’s journal entries from her caregiving days, offering 10 years’ worth of advice and wisdom.
She found community through Facebook, where she met fellow FTD caregivers who answered practical questions like which adult diapers are the most absorbent or what to do when a spouse with FTD wanders away.
“They’re the people dealing with it one on one,” she said, adding: “Unless you live it 24/7, you don’t understand it.”
“Just Breathe” is on sale at Amazon and Barnes and Noble.
