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I thought my husband, 36, was falling out of love with me - it turned out to be symptoms of DEMENTIA
A woman whose husband developed dementia in his 30s has revealed how the condition was almost dismissed 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 an entirely different person.
Suddenly, the notoriously early riser struggled to get out of bed in time for work, which soon turned into missing whole days of work at the cybersecurity firm Cloudflare he had helped build.
He lashed out at coworkers, became withdrawn, and eventually couldn't leave the couch, choosing instead to watch Home Alone for the tenth time that week.
Kristin feared it was a problem in her marriage - maybe this life was not what Lee wanted after all.
But in January 2017, a neuropsychologist told the couple that 35-year-old Lee was experiencing one of two things: a severe psychotic break or the beginning stages of frontotemporal dementia, rare and aggressive form of the disease that strikes people in their 30s and 40s.
Lee and Kristin Holloway met at Cloudflare, the company he helped found, in 2013. They were engaged a year later
Lee had been showing changes in behavior that worried Kristin and his coworkers, becoming angry and recalcitrant one minute and apathetic the next
It is 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 behavioral variant FTD, which has left him unable to speak or care for himself without constant help.
Lee, his parents, and his 24/7 care on a California estate and separate from where Kristin and their son live their regular lives.
Living separately 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 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 bolt out the door leaving the baby gate and front door open, often without any regard for traffic. He eventually went to live with his parents.
Thanks to the windfall from Cloudflare going public, Lee has constant care on a sprawling 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 wild journey: When my son became potty trained, Lee became incontinent.
'When my son started talking, Lee stopped.’
Kristin Holloway joined Cloudflare in 2011 as a communications specialist and fell for Lee after both of their previous relationships had crumbled - hers an engagement and his a marriage - in 2013.
Kristin was afraid that Lee's behavior changes were signs that he was unhappy in his new life with her and a baby on the way
Kristin said that Lee's energy levels were always so depleted he would have a hard time getting out of bed even on 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, believed to be the driving force of his headaches that confined him to his bed for hours on end.
His heart came out stronger than ever, but the surgery marked a turning point for the young couple's life together.
Kristin was about six months pregnant when Lee had to step away from work, having gone from writing code at all hours in the office to sleeping all day or sitting at home with his beanie pulled down over his face.
He was struggling but chalked it up to post-surgery recovery, often supplying the same refrain: ‘I’ll do better.’
Kristin said: ‘When he stopped working, his behavior sharply declined. He didn’t change out of his pajamas and spent a lot of time on the couch. He watched the same movies and TV shows on repeat.
'By September, he watched Home Alone about 10 times a week. He showed no motivation or desire to be productive. That wasn’t normal behavior for anyone, let alone my brilliant, amazing husband.’
Unlike Alzheimer’s and other dementias, which most noticeably affect a person’s memory, FTD manifests first as personality and behavioral changes such that a driven yet good-natured prodigy becomes recalcitrant and apathetic, picking fights with friends and losing interest in personal hygiene.
Other hallmark signs of FTD would later make sense in Lee: compulsive behaviors such as watching a movie ten times in a row or obsessively counting the trees in his backyard, or combative interactions with other people such as fighting with Kristin’s obstetrician, who said she had to undergo an emergency c-section.
The baby came and Kristin was largely left on her own. Lee was disengaged.
Now 43, Lee is nonverbal and lives with round the clock care. The average life expectancy after a frontotemporal dementia diagnosis is about seven and a half years
Lee's diagnosis is the same suffered by Die Hard actor Bruce Willis, 69
In couples counseling, she cried openly about their situation, saying Lee did not seem to care about the baby, or be clued in to what was happening around him.
According to a report in Wired, at one point, Lee stood up in the middle of a session to say he had forgotten to return the therapist’s office bathroom key and wandered out of the room.
Kristin said: ‘I started making appointments with all kinds of doctors, including our general practitioner, 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 in between all of these appointments for my husband who, at this point, had trouble getting out of bed. I was in complete survival mode.’
When a doctor brought up the word ‘dementia’ in January 2017, Kristin was flummoxed.
She said: ‘This is the disease older people get when they start forgetting things. That’s not possible… Lee, meanwhile, was totally unaware of what this 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 that are closely involved with personality, behavior, and language, had shrunk, a hallmark sign of dementia.
Kristin said: ‘I called my boss, explained what the scans revealed, and gave my two-week notice… My husband was not going to get better. Every moment would be the last time I’d be with a healthy version of him.’
Behavioral-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.
Like Mr Willis, the disease has affected Lee’s ability to speak. Atrophy in the fronto-temporal lobes of the brain often overlaps with areas centered around language comprehension and speech.
She has since joined the board of the Association for Frontotemporal Degeneration, and she started the Holloway Family Fund in Lee’s honor and helped launch a yearly summit for FTD researchers and doctors to gather and discuss the year’s findings in the hope of one day finding a cure.