My husband Geoff used to tell me he loved me every day, but he hasn’t said that for at least two years now.
He doesn’t hold my hand, kiss or hug me unless I do it first.
It’s not because we’ve fallen out of love. I still adore him more than anything and I can tell he still loves me. No, the reason is far more devastating than that.
He has frontotemporal dementia (FTD) – a dementia that causes problems with behaviour and language. It’s changed our lives, as well as the trajectory of our futures immeasurably.
I first met Geoff when I was 16 and he was 18 years old, when we used to go to the local discos in village halls and became part of the same crowd of friends.
We both married and moved away, but returned to our home county of Rutland in the early 2000s, both divorced. As we share the same birthday, we’d often text or have a drink on our birthday.
Then, in 2005, when we were both in our early 40s, a mutual friend had invited me to her birthday party and Geoff offered me a lift. That night, we talked and talked. Something just clicked.
He had a larger-than-life personality, made friends with everyone and was incredibly spontaneous, and generous – life was never dull.
Early in our relationship, he was going sailing with friends in Greece and asked me to go with him. On that holiday, I noticed he was picking up stones from the beach.
Back home, he got a jeweller to make them into a necklace and bracelet as a Christmas present for me as a memory of our first holiday together. I was bowled over by the sweet and thoughtful gesture.
A year later, on a trip to Paris to celebrate our joint birthday, he proposed on an evening boat trip along the River Seine.
My dad had already died by the time Geoff and I got together, so he’d asked my mum for my hand in marriage, which delighted her.
We got married the following year, in 2007. My mum still has her favourite photo of the wedding on display, where Geoff has a protective arm around me. She thought my future was secure. Little did any of us know that I would become the carer and protector.
A few years later, Geoff’s cousin mentioned that Geoff’s mum had been part of a London clinical trial at Queen Square Hospital and they found she had a genetic mutation for frontotemporal dementia (FTD), that gives you a 50% chance of passing it to your children.
I researched FTD and became scared as I read about the dementia that led to a relatively short life expectancy (two-12 years from symptoms). Afterwards, consumed by the knowledge, I sat down with Geoff and explained it.
After lots of discussion, we decided we wanted to know if he’d inherited the gene. It took us a year to organise the referral, have the required genetic counselling and then have the testing and while he was waiting, Geoff would toss a coin. ‘If I get enough heads, I haven’t got it,’ he’d say.
In July 2015, at 52 years old, we got his results: positive.
Geoff was devastated – we both were.
As we’d waited, I’d been keeping a constant watch and thought I’d noticed him taking longer to process what I’d said and showing a sweeter tooth, two classic symptoms.
But even though he had tested positive and was showing symptoms, doctors wouldn’t diagnose Geoff until there was sufficient evidence from an MRI scan and clinical cognitive assessment.
That didn’t happen until September 2017, by which time he was losing vocabulary, was slow at processing complex text or speech and wasn’t absorbing things people said. He avoided reading anything longer than a couple of paragraphs.
Suddenly, our future together had shortened and we both knew life would be difficult.
We both stopped working in February 2018 and travelled that summer, spending five months driving across Europe, staying a while in Greece.
Thankfully, although he was losing more vocabulary and understanding, other skills remained intact – like the ability to drive and navigation. The trip was amazing. We used an app to record our journey and produce an album, which he still loves looking through now.
But the trip was also a reminder that he was changing, and quickly. He didn’t do any of the planning or arrangements, he didn’t want to explore the places we stopped at, he didn’t want to eat out and the journey was quiet as it was clearly hard for him to process the spoken word. But we were together 24/7 and that was priceless.
Since coming home, Geoff’s symptoms have worsened. He hasn’t been able to say my name for a year and has long forgotten the dogs’ names, so he whistles for them – and sometimes for me, too.
We do a lot of hand signals – like a thumbs up or miming eating or sleeping. If he has a dental appointment, I Google pictures of a dentist, then show him the date on the calendar. We have a small photo album of people and places that I use to explain where we are going or who we are seeing.
Being together is still comfortable, but he can’t engage in much anymore. We have a lovely garden, and we love to sit there in the afternoon but it’s in silence. I know how hard it is for him if I ask questions that he can’t understand or answer.
He can no longer care for or protect me as he always wanted to, he can’t do any household jobs or communicate verbally at all either. We’ve shifted from being husband and wife to cared-for and carer.
Our days are repetitive. Geoff likes being driven around the countryside or being taken for a quick beer by his brother. Other times, he’ll watch his favourite films.
He has recently started refusing dinner and going to bed at 5.30pm, but even then, I couldn’t go out and leave him.
We’re managing on our own now, but I know he will continue to deteriorate. He will become more dependent upon me, stop all personal hygiene (it’s a struggle to get him to have a shower now), he will become immobile, go into his own world even more, stop eating or drinking properly, before finally becoming bedbound. Ultimately, he will fade away or get pneumonia and die.
Having been a nurse, I cope best when I know what I’m facing so I’ve researched it and am realistic about what is to come. It doesn’t make it any less painful though.
I’ve been on the Alzheimer’s Society website numerous times for their information leaflets to pass onto family and friends and also to be signposted to community groups.
We also took part in a Memory Walk with friends to raise £1,000 and awareness of the condition. I don’t think Geoff understood, even though we were both wearing Alzheimer’s Society T-shirts.
People have asked me how I do it or say, ‘this wasn’t what you signed up for’. But I disagree: it is exactly what I signed up for. You don’t abandon someone you love in their hour of need. And I know, if it had been the other way round, Geoff would have looked after me.
Alzheimer’s Society have launched their campaign, The Ultimate Vow. If you would like to make a vow of support to help people with the condition, you can find out more here.
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