Laura, 40, reveals the highs and lows of three years living with dementia
Laura Borrell tells how the cruel condition caused her to forget her own mother's voice, how she reacted to her diagnosis at 37, but how it has produced some of the best memories with her husband
LAURA Borrel was just 37 when she was left "shell-shocked" by her dementia diagnosis.
Here she tells how the cruel condition caused her to forget her own mother's voice, how she reacted to her devastating diagnosis, and how she's making the most of the time she has left.
Reading the arrivals board at London’s King’s Cross station, I repeated the details of my husband’s train over and over.
Yet as the destinations moved down the screen, suddenly I had no idea what was going on. Confusion engulfing me, I became frantic. Where was I? What was I doing?
Thankfully, just seconds later my phone buzzed as my husband Phil called to say that he was five minutes away, and my memory came flooding back.
Although I’ve grown accustomed to scenarios like this over the past three years, it doesn’t make living with dementia any easier.
It started in early 2014. In the beginning, it was funny when I would get my words muddled up or leave my bag somewhere silly.
I put it down to having a lot on my mind, or as a side effect of the medical conditions I’d been diagnosed with at 32: Ehlers-Danlos syndrome, which causes digestive problems and painful joints, and blood-clotting condition Hughes syndrome, which sadly means I’m not able to have kids.
At the time, I was studying law at the University of London and some days I couldn’t keep up with lectures, while others my speech would slur.
But I didn’t realise how serious my memory issues had become until one day in December 2014, when I couldn’t recognise my mum Frances’ voice on the phone.
As Mum pleaded with me to remember who she was, I became panicked and confused and tried to hang up. Then Phil grabbed the phone and showed me the caller ID. I burst into tears. Why didn’t I know her voice?
After that, I was beside myself with worry – was I going mad? Did I have a brain tumour? I saw my GP soon afterwards, but he quickly passed off the symptoms as stress and being too busy. I knew it was something more, yet never in a million years did dementia even cross my mind. That was a condition for the elderly, not a woman in her 30s.
After months of going back and forth, the following summer I was finally referred for brain scans and blood tests. Then, in June 2015, I was given the shock diagnosis of frontotemporal dementia – a condition rarely seen in anyone under 65.
I had expected to be called into hospital to see the consultant, but instead he rang. Phil answered and I can still remember the colour draining from his face as he whispered: ‘So, it’s dementia?’
I felt like the ground had been pulled from beneath me. I sank to my knees and cried on the kitchen floor.
As Phil relayed his conversation with the doctor to me, I couldn’t believe what he was saying. I was only 37, yet I would soon forget those I loved, my precious memories and places. And my independence would be lost too, as eventually I wouldn’t be able to dress, wash or feed myself. To make matters worse, the doctors couldn’t predict how quick my decline would be.
For weeks, Phil and I were completely shell-shocked. It was so cruel, so unfair. We’d only been married for five years and we’d already had to come to terms with never having kids. Now at least I don’t have to put any children through the cruelty of being forgotten by their mum.
Determined not to let dementia beat me – despite there being no cure – I was put on medication that seemed to help with my cognitive issues.
But, of course, in just under three years since my diagnosis, life has changed a lot.
Before, I had a big group of friends that I’d regularly go out for dinner and drinks with, but gradually they’ve dropped off the radar.
It’s really upsetting, but a lot of them never understood what was wrong with me and kept asking when I was going to get better. I still have a couple of close friends that either call or drop in for a chat, and I really treasure those relationships now.
These days I tend not to leave the house too much on my own in case I forget where I am. Once, last year, I was driving back home from the shops, and all of a sudden my surroundings felt completely alien to me. I had no idea where I was and was so scared I started to cry. In the end I called the police and they brought me home. I felt humiliated and useless.
Phil and I used to love going on dates to the cinema or for walks, but because my brain can get foggy now, whether we go out at all depends on if I’m having a good or bad day. It’s as simple as that.
I know that my mum finds it all so hard – I’m her little girl, after all – but whenever I need to have a cry she’s always there for me.
Phil’s amazing, too. He still works as a software project manager, but if I’m having a bad day I rely on him to help me understand what’s going on around me or to calm me down when I become disorientated.
Some days I can get really upset and panicky, almost like a toddler, while others, because I don’t even know that I’ve forgotten anything, I don’t react at all.
There have been times when I’ve caught Phil holding back the tears, which is heartbreaking. It must be so difficult because he knows he’s losing me, bit by bit. But it has also reaffirmed our love for each other and we’ve vowed to embrace the months or years that we have left before things become too hard.
Ironically, since the diagnosis, we’ve had some of our best times together.
Just last year, we travelled around America for my 40th birthday, visiting Boston – where we’d been on our honeymoon – Washington and the Grand Canyon, which was something we were determined to do before my dementia truly took hold.
That holiday inspired us to focus on making amazing memories together while we still can. We have a list of places we want to visit and we hope to tick one off each year, such as Sweden, and Norway to see the Northern Lights.
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I’m also trying to keep my mind agile by going back to my law degree in September. I had to leave in 2015 because of my condition. It will be hard and I’ll need support, but I can’t wait.
As for the future, we try to stay positive. One of the hardest parts is not knowing when my last day as ‘me’ will be.
It could be 20 years from now or I could wake up tomorrow and not know anyone. It’s hard preparing for that but for now, I’m still Laura.
‘I try to stay strong and positive. it’s difficult though’
Laura’s husband Phil, 43, says: “The diagnosis was devastating. Laura wasn’t even 40 – it seemed so unfair on her and on us as a couple."
“Suddenly our lives were thrown up in the air. I had so many questions: would we be able to do the things we’d planned to do in the future? How fast would the condition progress? And, ultimately, how long would she have left before she was no longer the person I fell in love with?"
"It’s quite difficult to determine whether her health is deteriorating because we just don’t know what to expect. As I’m with her so much, whenever she forgets something or slurs a word, it’s hard for me to gauge whether it’s something she’s been doing for a while now or a new sign that things are slowly getting worse."
"Either way, I try to stay optimistic. Of course, that can be difficult and we both have bad days, but Laura is determined to fight this condition and to have as normal a life as she possibly can. I will always stay strong and positive for her, even if she cannot.”