A woman whose husband developed dementia in his 30s has revealed how she almost wrote it off 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, wonderful husband’ became a completely different person.
Suddenly, the notorious early riser had a hard time getting out of bed in time for work, which soon turned into missing entire days of work at the Cloudflare cybersecurity company he had helped build.
He lashed out at his coworkers, became withdrawn, and eventually couldn’t get off the couch, preferring to watch Home Alone for the tenth time that week.
Kristin feared it would be 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 affects to people between 30 and 30 years old. 40 years.
Lee and Kristin Holloway met at Cloudflare, the company he helped found, in 2013. They got engaged a year later.
Lee had been displaying behavioral changes that worried Kristin and her coworkers, becoming angry and recalcitrant one minute and apathetic the next.
It’s the same type of dementia that struck actor Bruce Willis, 69, in 2022, and television personality Wendy Williams, 59, last year.
Lee, now 43, is in the advanced throes of a behavioral variant of FTD, which has left him unable to speak or care for himself without constant help.
Lee, her parents, and her 24/7 care on a property in California and separate from where Kristin and her son live their usual lives.
Living apart from Lee was a difficult decision for Kristin to make, but she did it to give her son a childhood as close to a normal childhood as possible. She said that she had been alone in her marriage for years anyway.
When fellow 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 shuffling wordlessly from room to room.
Living with Lee and a baby became dangerous for Kristin. Some days, Lee would rush out the door, leaving the baby gate and front door open, often disregarding traffic. She finally went to live with her parents.
Thanks to the windfall from Cloudflare’s IPO, Lee receives constant care on a sprawling estate where Kristen and her 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 wild ride – 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 and I fell in love with Lee after their previous relationships fell apart (hers an engagement and his a marriage) in 2013.
Kristin feared that Lee’s changes in behavior were signs that he was unhappy in his new life with her and a baby on the way.
Kristin said Lee’s energy levels were always so depleted that he had a hard time getting out of bed even during vacations together.
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, which was believed to be the driving force behind his headaches that confined him to bed for hours on end. .
His heart came out stronger than ever, but the surgery marked a turning point in the young couple’s life together.
Kristin was about six months pregnant when Lee had to leave work, having gone from coding all hours in the office to sleeping all day or sitting at home with her hat pulled down over her face.
He was struggling, but he attributed it to post-operative recovery, and often repeated the same refrain: “I’ll do better.”
Kristin said: ‘When he stopped working, his behavior declined dramatically. She kept her pajamas on and spent a lot of time on the couch. She watched the same movies and TV shows over and over again.
‘In September, I was watching Home Alone about 10 times a week. He showed no motivation or desire to be productive. That was not normal behavior for anyone, much less my brilliant and wonderful husband.
Unlike Alzheimer’s and other dementias, which more noticeably affect a person’s memory, FTD first manifests as personality and behavioral changes such that a motivated but good-natured prodigy becomes recalcitrant and apathetic, fighting with friends and loses interest in personal hygiene.
Other hallmark signs of FTD would later make sense for Lee: compulsive behaviors like watching a movie ten times in a row or obsessively counting the trees in her backyard, or combative interactions with other people like fighting with Kristin’s obstetrician, who said she had undergo an emergency cesarean section.
The baby arrived and Kristin was left alone. Lee was offline.
Lee, now 43, is nonverbal and lives in 24-hour care. The average life expectancy after a diagnosis of frontotemporal dementia is about seven and a half years
Lee’s diagnosis is the same as that suffered by Die Hard actor Bruce Willis, 69
In couples therapy, she openly cried about her situation and said Lee didn’t seem to care about the baby or be aware of what was happening around him.
According to a report in cablingAt one point, Lee got up in the middle of a session to say she had forgotten to return the bathroom key to the therapist’s office and left the room.
Kristin said: ‘I started making appointments with all kinds of doctors, including our GP, a cardiologist, a neurologist, a psychiatrist and a neuropsychologist.
Mind you, 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. ‘He was in total survival mode.’
When a doctor mentioned the word “dementia” in January 2017, Kristin was taken aback.
She said: ‘This is the disease that old people get when they start to forget things. That’s not possible… Lee, meanwhile, was completely unaware of what this meant. She said that she was still recovering from heart surgery and that she would get better. I thought maybe she was denying it.
Lee’s MRI scans confirmed that parts of his brain that are closely related to personality, behavior and language had shrunk, a hallmark sign of dementia.
Kristin said: ‘I called my boss, explained what the scans revealed and gave him two weeks’ notice… My husband wasn’t going to get better. Every moment would be the last time she would be with a healthy version of him.
Behavioral variant frontotemporal dementia, which receives much 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 the disease.
Like Willis, the disease has affected Lee’s ability to speak. Atrophy in the frontotemporal lobes of the brain often overlaps with areas focused on language and speech understanding.
Since then, he joined the board of directors of the Association for Frontotemporal Degeneration, founded the Holloway Family Fund in Lee’s honor, and helped launch an annual summit for FTD researchers and clinicians to gather and discuss the year’s findings with the hope of one day finding a cure. .
