A 36-year-old woman has revealed how early on-set dementia has robbed her of precious memories of her wedding day.
Jes Caruss, from Lansing, Michigan, USA, believes a car crash and head injury in her early 20s caused her to develop the condition at just 32.
According to the Alzheimer’s Association, “certain types of traumatic brain injury may increase the risk of developing Alzheimer’s or another form of dementia years after the injury takes place”.
Today, Jes sometimes leaves laundry in the washing machine for a week and forgets where groceries go in the kitchen, putting refrigerated goods in to cupboards, which eventually go off.
Heartbreakingly, Jes’ car-parts manager husband Sam, 41, once showed her photos of their wedding day to jolt her memory – but now he can only show her the one image as the album was on a disk that no longer works.
But, while doctors cannot tell her how fast she will deteriorate, she remains light-hearted about her dementia, saying: “It doesn’t have to be horrible. It’s not the end of the world.
“I’m living my life to the fullest and use humour to talk about it, as it can be uncomfortable for people.”
Jes believes her problems began in late summer 2006 when, aged 24, she was a passenger in her friend’s car, when I was involved in a collision with a truck on the motorway.
Despite wearing a seat belt, Jes was thrown forward into the windscreen and the airbag inflated in front of her, causing second-degree burns to her throat and chest and first-degree burns to her face.
Also left with bruises across her body and torn ligaments in her chest and hips, she was taken to hospital in a neck brace and on a back board.
There doctors x-rayed her spine and she was told she had suffered a minor head injury, but was discharged the next day.
She said: “I was only in the hospital overnight, because I appeared stable. I was sent home on strict bed rest and was bedridden for about six weeks due to the torn ligaments in my chest, and hairline fractures in my neck.”
When she returned to her then-job as a healthcare provider, around two months after the crash, she found the 45-minute journey to work exhausting and needed several naps a day to get through.
She said: “I felt like something might be wrong but I assumed my body was still healing from the accident. I thought I had to build myself up again. It didn’t seem like a big deal.”
Then, soon after the accident, she began to notice that she couldn’t remember whole days, from before it and immediately after.
She would also go to the shops, but forget what she was there for.
She explained: “At first I didn’t notice I had any issues with my memory. I lived alone, so didn’t tell anyone about it and there was no one there to point it out. Then I was knitting, which I enjoyed and I realised that I was forgetting how many stitches I’d done.”
In October 2011 Jes met her now-husband, Sam, online, and, clicking immediately, they moved in together after a week.
Early the following year, she underwent memory, educational and physical tests – also seeing a psychiatrist for help dealing with post-traumatic stress disorder.
But she was shocked when experts diagnosed her with early on-set dementia.
She said: “My initial reaction was fear of the unknown, how rapid it would develop. I assumed the worst case scenario.
“After that I had to tell Sam, but I was scared. He’d commented on my memory before, like when he worked shifts and I forgot when he was coming home from work.
“We’d only been together a few months and I thought he might want to leave. But he was amazing. He said, ‘I love you no matter what.’”
To prove his devotion, on Valentine’s Day 2013, Sam proposed at home, over dinner.
“Sam was nervous. He was scared I might say no… As if! I wasn’t nervous about marrying him. I was excited. I’d actually been pestering him about it.”
Four months later, on 19 June, Sam and Jes, who wore a red dress, were married by a judge at the local courthouse, in front of her parents, his mum and her cousin.
“That day I was so happy. I cried tears of joy. I was falling more in love with him at that moment.”
But, startlingly, within that same day, Jes had already forgotten moments of her big day.
She said: “Now I have to look at a photo to realise I was there, but that doesn’t bother me. It’s nice to look and remember the day all over again, how I was feeling.
“The day is a bit of a blur for both of us.”
Her memory of other special occasions is equally sketchy.
“People often need to remind me that I was actually there,” she confessed.
On their fifth wedding anniversary next June (2018), Jes and Sam have now planned to renew their vows, surrounded by their friends and family.
She said: “Well we’ve made it five years. It’s a big deal considering what we’ve been through. I want to enjoy it, I want to recommit to him. Even if I won’t remember it.”
Jes has noticed an acceleration of her memory loss over the last year or so, and feels embarrassed when she forgets things.
“Getting to the till at the supermarket and realising I’ve forgotten my wallet is mortifying,” she said.
“People wonder what’s going on. I’m too young for some to realise I have dementia.
“Fortunately I’m not the only person this happens to and in that situation I just say, ‘you’ve got to be kidding!’ And I live in a community where a lot of people know me and my condition.”
Jessica also feels frustrated when she cannot remember dates or times.
“I lose track of what I’m trying to say, too,” she explained.
Meanwhile, Sam tries to help her by writing notes to remind her to run errands and complete household chores.
“I forget whole movies and TV episodes we’ve watched together too,” Jes said. “Sometimes we’ll end up watching a film nine times in a couple of weeks. My husband will sit there while I watch it again, then I’ll remember I’ve seen.”
Remarkably, Jes and Sam share the same birthday – 7 April – but even that doesn’t mean she remembers until her husband presents her with a card and gift.
“It often slips my mind,” she said. “But now Sam takes his birthday off so I don’t forget as much as I did.”
While Jes accepts her condition, she hopes it won’t mean she forgets seeing her 18-month-old nephew grow up.
“I want to teach him how to read, to love books like I do, and swim, and ride a bike,” she said.
“I try to stay positive. I continue to take part in the activities I’ve always adored, like rock climbing and hiking.
“I’m a volunteer proof reader for a university too, although sometimes I forget I’ve read pages or chapters and have to go back to the beginning again.”
Still, Jes remains determined to stay positive in the face of adversity.
She said: “I don’t want people to pity me because of my condition. I’m taking life as it comes. I’m making the best of it.”