I thought my husband, 36, was no longer in love with me

A woman whose husband developed dementia in his 30s has revealed the illness was almost seen as a mid-life crisis.

Kristin married Lee Holloway in Maui in 2015 and they had a baby in 2016 – but within months, her “brilliant, amazing husband” became a completely different person.

Suddenly, the notorious early riser found it difficult to get out of bed in time for work, which quickly turned into missing entire days of work at the cybersecurity company Cloudflare that he had contributed to create.

He lashed out at his coworkers, became withdrawn, and ultimately couldn’t leave the couch, choosing instead to watch Home Alone for the tenth time that week.

Kristin worried it was a problem in her marriage – maybe this life wasn’t what Lee wanted after all.

But in January 2017, a neuropsychologist told the couple that Lee, 35, was experiencing one of two things: a severe psychotic break or the early stages of frontotemporal dementia, a rare and aggressive form of the disease that strikes people in their 30s and 40s.

It’s the same type of dementia that struck actor Bruce Willis, 69, in 2022 and TV personality Wendy Williams, 59, last year.

Lee, now 43, is in the advanced throes of behavioral variant FTD, which leaves him unable to speak or care for himself without constant help.

Lee, his parents, and his 24/7 care on a California estate, separated from where Kristin and their son live their usual lives.

Living apart from Lee was a difficult decision for Kristin to make, but she made it in order to give their son as close to a normal childhood as possible. She said she had been alone in their marriage for years anyway.

When Cloudflare founders Matthew Prince and Michelle Zatlyn saw Lee in 2018 for the first time in months, they didn’t recognize their old friend. To them, he looked like a zombie moving wordlessly from one room to another.

Living with Lee and a baby has become dangerous for Kristin. Some days, Lee would run out the door, leaving the baby gate and front door open, often without worrying about traffic. He eventually went to live with his parents.

Thanks to the Cloudflare IPO windfall, Lee has constant care in a large estate where Kristen and their son can see him whenever they want, but they have separate lives.

Kristin said: “The juxtaposition of my son’s development and Lee’s progression has been a crazy journey: when my son was potty trained, Lee became incontinent.

“When my son started talking, Lee stopped.”

Kristin Holloway joined Cloudflare in 2011 as a communications specialist and fell in love with Lee after their two previous relationships fell apart – hers being an engagement and his being a marriage – in 2013.

When the two got engaged in 2014, Lee decided to get to the bottom of his migraine attacks by undergoing surgery to repair a heart murmur, believed to be the driving force behind his headaches that kept him bedridden for hours.

Her heart came out stronger than ever, but the operation marked a turning point in the young couple’s life together.

Kristin was about six months pregnant when Lee had to take time off work, going from writing code at all hours in the office to sleeping all day or staying at home with her beanie pulled down over her face.

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He was having difficulty, but he attributed this to his post-surgery recovery, often repeating the same refrain: “I’ll do better.”

Kristin said: “When he stopped working, his behavior decreased significantly. He didn’t take off his pajamas and spent a lot of time on the couch. He watched the same movies and TV shows over and over again.

“In September he was watching Home Alone about 10 times a week. He showed no motivation or desire to be productive. This was not normal behavior for anyone, least of all my brilliant and incredible husband.

Unlike Alzheimer’s disease and other dementias, which specifically affect a person’s memory, FTD first manifests itself in personality and behavioral changes such as a motivated but good-natured prodigy. becomes recalcitrant and apathetic, arguing with friends and losing interest in personal hygiene.

Other characteristic signs of FTD would later take on meaning in Lee: compulsive behaviors such as watching a movie ten times in a row or obsessively counting the trees in his garden, or combative interactions with other people, such as fighting with Kristin’s obstetrician, who said she had to have an emergency C-section.

The baby arrived and Kristin was left largely alone. Lee was disengaged.

During couples counseling, she cried openly about their situation, saying Lee didn’t seem to care about the baby or be aware of what was happening around him.

According to an article in Wired, at one point, Lee got up in the middle of a session to say that he had forgotten to return the key to the bathroom in the therapist’s office and had walked out. the room.

Kristin said: “I started making appointments with all sorts of doctors, including our GP, a cardiologist, a neurologist, a psychiatrist and a neuropsychologist.

“Be careful, our baby was only a few months old. I was pumping milk in the car between all these appointments for my husband who, at the time, was having trouble getting out of bed. I was in complete survival mode.

When a doctor mentioned the word “dementia” in January 2017, Kristin was taken aback.

She said: “It’s the disease that older people get when they start to forget things. It’s not possible… Lee, for his part, had no idea what that meant. He said he was still recovering from heart surgery and would get better. I thought maybe he was in denial.

Lee’s MRI scans confirmed that parts of his brain closely involved in personality, behavior and language had shrunk, a hallmark sign of dementia.

Kristin said, “I called my boss, told him what the tests showed, and gave my two weeks’ notice… My husband wasn’t going to get better. Any moment would be the last time I would be with a healthy version of him.

Behaviorally variant frontotemporal dementia, which gets far less attention than other forms of dementia such as Alzheimer’s disease, entered the mainstream last year when it was revealed that actor Bruce Willis had been diagnosed with it.

As with Mr. Willis, the illness affected Lee’s ability to speak. Atrophy of the frontotemporal lobes of the brain often overlaps with areas focused on language comprehension and speech.

She has since joined the board of directors of the Association for Frontotemporal Degeneration, and she launched the Holloway Family Fund in Lee’s honor and helped launch an annual summit for researchers and doctors in the FTD to come together and discuss the results of the year in hopes of one day finding a cure. .