Kevin's story
19 Nov 2025
We started noticing changes in Kevin about four years ago. At first, we put it down to a midlife crisis and shrugged it off. But over time, things began to shift again, he started avoiding work, making up stories that sounded completely real, and talking about things he’d just heard as if they were his own memories, or reminiscing endlessly about the old days.
Then one day, Kevin did something so out of character that I thought, “this isn’t Kevin.” I assumed it might be depression or a cry for help. I got him into a men’s group and arranged a phone screening for depression he passed, and they found no concerns.
This pattern went on for around three years. Then, in April this year, something very concerning happened, and he needed medical clearance to have his licence reinstated, He failed his cognitive test. Blood tests showed his vitamin B12 was extremely low, and we thought, “great we can fix that”! But after treatment and another cognitive test, he failed again.
By this stage, his workplace had started noticing a big change in his performance. They raised concerns and held a meeting, and they were extremely supportive and wanted to help with whatever was going on, at that stage we all thought it was b12 deficiency.
We went back to the doctor, who arranged a CT scan. It showed “mild atrophy”. We were sad, but we thought, mild dementia we can manage that, many years with patience, understand and grace….however.
Then, on August 24th, we got a call from the doctor. She told us Kevin’s CT had been misread it actually showed severe atrophy. Two days later, on August 26th, he was diagnosed with Behavioural Variant Frontotemporal Dementia (BvFTD). We were left shocked and heartbroken. Yet suddenly, everything from the past few years started to make sense.
Within six weeks, Kevin was diagnosed with BvFTD (never had we heard of it) lost his job, his income, and his driver’s licence. We’re now selling his truck it’s like losing another piece of him. He’s lost his purpose and structure, and the decline is becoming more obvious every day. The vacant look in his eyes, the changes in his behaviour… sadly, the beautiful husband, dad, brother, and friend we know is slipping away right before our eyes. This disease steals and it will never give back. It will keep taking.
It’s stolen so much yet in its cruelty, it’s also given back a sense of respect, dignity, and his Mana, and brought with it more grace, patience, and love.
BvFTD is a cruel, exhausting, heartbreaking disease. It’s incurable, progressive, and ultimately terminal. We don’t know how long we have left with Kevin, but the progression is noticeable.
The day the doctor called me, I remember seeing a clip of Emma Willis’s documentary on social media and thinking, that’s Kevin. Those words have never left me.
If you notice a massive change in someone’s personality or behaviour, don’t take it lightly. This disease hides behind so many faces, depression, stress, burnout, even midlife crisis. The earlier it’s recognised, the sooner families can get help and understanding.
💙🦋THE LONGEST GOODBYE 🦋💙
by Jacqui Sawford
In 1987, two hearts began, A love that grew, hand in hand.
Through laughter, trials, hopes, and fears, A journey carved by passing years.
Seven children filled the days, Chaos, wonder, countless ways.
Through scraped knees, tears, and joyful songs, You held each other, steady, strong.
A father’s hug, a steady voice,
And when the world would seem too tall, Your love would help us when we fall. All now echoes— grief, no choice.
Amid life’s trials, joy remained,
Grandkids whisper Poppa’s name.
Love still blossoms, bright and true, In every hug, they carry you.
There were hard times, nights of doubt, Choices made, both right and out. Questioned paths and roads unknown, Yet always, love had made its home.
And now a shadow, soft but near, The whisper of FTD you hear. It steals the light, the words, the song, Turning right into something wrong.
Husband, Father, Poppa, Friend, Brother, Son— these roles won’t end.
Though sadness drapes the fading sky, Your story shines, it will not die.
This is our longest, hardest goodbye, With aching heart and tear-stained eye.
But love began in eighty-seven,
And love will carry you to heaven.
