Mary Kay Verhoff, a former FTD care partner from Ohio, recently published a book that tells the story of coming to terms with and navigating her husband’s decline from FTD.

Published in July, “Just Breathe: A Caregiver’s Journey Through the Depths of Dementia” has 39 five-star reviews on Amazon, where it is available as a Kindle book or paperback.

In the book, Mary Kay alternates between telling the couple’s story and sharing excerpts from her journal. She explores the challenges that come when a family member becomes seriously ill, as well as the complex feelings she experienced as the wife and care partner of someone diagnosed with FTD.

Dan’s Confusing Behaviors

When her husband, Dan, was 56, Mary Kay began noticing small changes in his behavior. She wondered if they were caused by stress, but Dan assured her everything was fine. Before long, though, Dan — who “could fix or build just about anything,” said Mary Kay, and who worked at a manufacturing plant building farm equipment — became incapable of changing the oil in their gas lawnmower.

Then, on a vacation to California during which they spent uninterrupted days together, Mary Kay realized the gravity of Dan’s situation.

One morning, she told AFTD, “we stood outside of a restaurant, looking at a map of the piers and pointing out places we wanted to visit. Then we went inside, ordered our breakfast, and sat down at a table near a window that had a view of the map.” She continued, “Dan said, ‘We need to find a map so that you can find the places that you want to visit.’ I felt my stomach turn over and just knew something wasn’t right.”

Resan till en FTD-diagnos

Mary Kay received a call from Dan’s boss one day. He told her Dan’s colleagues had been covering for him, but it had become too dangerous for him to continue working. He went out on short-term disability, and the couple began to look for answers.

A primary physician specializing in brain health said Dan scored poorly on a brief mental test, but he had enough wherewithal to cheat on one of the tasks. His first diagnosis was stress or anxiety. A visit to a neurologist resulted in a diagnosis of Alzheimer’s, and his next doctor diagnosed him with the semantic variant of primary progressive aphasia (svPPA), an FTD subtype.

Eventually, the couple went back to their family doctor, who prescribed a neuropsychological evaluation. After a wait of several months, Dan met with a neuropsychologist who said he had severe brain deficits. Finally, in early 2017, Dan met with a neurologist who diagnosed him with significant shrinkage in the brain’s frontal and occipital lobes and diagnosed him with FTD.

Becoming a Full-Time Care Partner

Mary Kay worked as an X-ray technologist for 40 years, managing her hospital’s women’s health center from its inception, and overseeing multiple departments leading up to her retirement. She loved her career, but Dan’s diagnosis and increasing need for an around-the-clock care partner caused her to examine how best to move forward, so she decided to retire — five years early — to be home with him.

Dan’s condition continued to decline, but Mary Kay was able to manage their home and his medical needs. However, an increasingly debilitating back injury requiring her to have surgery changed how she could care for him. Dan had increasing visual deficits, had several mini-strokes, and started falling and getting injured. As a 5’6” woman with a bad back, Mary Kay was not able to effectively help the 6’1” Dan when he fell. Finally, she decided he needed to move into a more medically supportive environment.

After 45 years of marriage, Dan passed away. Mary Kay journaled about her grief, shared about it with family and friends, and sometimes had “pity parties” by herself. As part of her healing process, she wrote her book to help others who are on the caregiver’s journey. Her primary goal was to help other caregivers feel more normal, given their new circumstances. “I want caregivers to learn to give themselves a big batch of grace at the end of each day,” said Mary Kay.

“Just Breathe: A Caregiver’s Journey Through the Depths of Dementia” is available to purchase on Amazon and is listed on AFTD’s Rekommenderad läsning/visning webbsida.