The love of my life was diagnosed with dementia at 48

Sarah Frith, 50, from Sheffield, was just 48 when she was diagnosed with frontotemporal dementia (FTD). Here, her long-term partner and fiancé Gareth Heslop, 50, who works in financial crime compliance, reflects on the heartbreaking challenges of caring for a partner with young onset dementia.

Words: Marie-Claire Dorking

As the car meandered through the dark, country lanes, I turned to Sarah to suggest she put on the full beams. We’d been to a village fair near my parents’ and were heading home to Sheffield.

Sarah couldn’t quite work out how to switch on the full beams, so I told her to pull over so I could help, but though she slowed down, she couldn’t seem to be able to stop. In the end, our eldest son had to physically press the brake.

That was the first real indication that something wasn’t quite right with Sarah, but not for a second did I suspect dementia.

Sarah and I met when we both worked in a call centre in 2001. I think we both knew early on that our relationship was going to be long-term and things moved fairly quickly.

Within months, we’d moved in together and around a year later, Sarah was pregnant with our first child, Lewis, now 21, followed later by Euan, now 12.

I first noticed some potential warning signs in Sarah when she was 46. It was 2019, which was a pretty bad year for us as we both lost our jobs and my dad died from kidney cancer.

I started to spot some changes in Sarah’s behaviour. For example, instead of a toothbrush she referred to it as a tooth-cleaning thingy. Another time she asked if they had cows in America. We all have days when we say something a bit silly so I just dismissed it as that.

Struggling with everyday tasks

The following year, however, Sarah got a job working from home and I noticed she was struggling with day-to-day tasks she’d previously had no trouble with, like drafting an email.

In September 2020, she was really anxious about how the job was going, so she went to the GP who signed her off work with stress and anxiety.

At the time, this seemed like a plausible cause for her behaviour, but looking back there were other signs too – replies to text messages that didn’t make sense, going out without a jacket on a cold day, for example. It was only little things, but I started to become worried.

The devastating truth

The incident with the full beams was a turning point – and I decided to book Sarah an appointment with her GP who referred her for a memory test.

She passed, but I now know that the test isn’t always suitable for people with frontotemporal dementia as memory loss isn’t always one of the first symptoms.

In the summer of 2021, I wrote a letter to her doctor listing all the things I was worried about – finding it difficult to hold conversations or going to the supermarket for one thing and coming back with something totally different.

The doctor was sufficiently concerned to refer Sarah to a neurologist and, after various scans and tests, Sarah was formally diagnosed with frontotemporal dementia in October 2022, aged just 48.

I’d already suspected that’s what we were dealing with, but hearing the words was still heartbreaking.

Breaking the news

As a family, we made the conscious decision not to tell Sarah about the diagnosis. We worried that her knowing might make her deteriorate more quickly, but I still had to break it to the boys, who were 20 and 11 at the time.

I planned for us to go somewhere we don’t normally go as I didn’t want them to associate a regular place with a bad memory. We talked it all through and I tried to be as honest with them as I could, but it wasn’t an easy conversation to have.

On the way back, Lewis asked lots of questions but Euan remained silent. At home I could hear him banging in his room, so I went up to ask if he wanted to talk.

"What’s the point?" he replied. "It’s not going to change things?"

I told him that it wouldn’t but that it was good for us to keep talking.

Losing speech skills

Things have progressed quickly for Sarah and I’ve effectively now changed from being Sarah’s partner to her carer, while also still working full-time.

She can’t dress or look after herself anymore, so I have to do it all for her, which isn’t easy on either of us.

She also has trouble with certain foods. Frontotemporal dementia affects the frontal lobe of the brain, which is linked to behaviour, and can cause some challenging issues around food, including swallowing and chewing. It means I’m constantly worried about her choking.

Sarah can also no longer communicate verbally, which we all find really difficult.

Evenings are particularly challenging as Sarah often gets up late at night because she is worried about something and isn’t able to tell me what it is. Sometimes I’m so physically exhausted that I don’t want to get up and check, but I have to because otherwise she won’t settle.

Adjusting to a new life

Most days I wake up with my eyes red raw from tiredness and have to push myself to get up.

It’s the little things I miss too – having someone there looking out for me, who thinks of the special Christmas presents I’d love, someone to give me a hug when I’m upset.

It’s hard also having to make decisions on my own and not having the reassurance of the person you’d previously have turned to. All the responsibility sits on me.

There’s a financial impact too. I’ve estimated that to look after Sarah properly for the next six years is going to cost an additional £150K, because of making adaptations to the house, for example, which places greater emphasis on me keeping my job.

But it’s hard to concentrate on work with so many distractions – co-ordinating Sarah’s care needs and health appointments is a part-time job in itself.

My own health is deteriorating too, because I don’t have any space to think about looking after myself.

Thankfully, we’ve now received funding for 35 hours a week’s care for Sarah, which means I can have someone here while I’m working during the day and on a Tuesday there’s a carer here until 9pm. That means Euan and I can get some respite.

Lewis is at university, so he’s slightly more removed, but he worries a lot about whether his mum’s condition is progressing whilst he is away.

Euan sees his mum declining on a more day-to-day basis. Sometimes, Sarah will forget to pack enough lunch for him to take to school or will wake him up in the middle of the night for no reason.

I make sure I talk to the boys and encourage them to open up as much as possible, but it isn’t always easy.

Making the most of every day

A few months after telling the boys about Sarah’s dementia, Euan asked me if his mum would be still alive this time next year.

Sometimes I can reassure them but I can’t always give them the answers they would like. I try to support them as best I can and let them know I am here. I’m fiercely devoted to giving them as much of the life they were expecting as possible.

With Frontotemporal dementia, your life span is a lot shorter – the average time from diagnosis is around six years – so it’s difficult to look back at the hopes we made for our future together and not feel sad that we won’t get to realise them.

The plan was to get to the age that the kids were starting to go off to university and go travelling, which of course we can no longer do. But we are trying to enjoy as much time together as a family as we can.

For Christmas I’m asking people not to buy us presents but to give us vouchers so we can make as many memories as possible.

Still Sarah inside

Of course, Sarah has changed a lot, but she’s still Sarah. She’s always had a mischievous sense of humour and still loves to laugh. The boys are always saying things to make her giggle and she still loves watching Gogglebox.

I try not to get too sad, but one thing always guaranteed to make me cry is when people say I’m doing a good job, which I find hard to accept. I love this person so I’m doing it all because I love them not because I have to.

I’m hoping by sharing our story people may know not to dismiss behavioural changes in loved ones even if they’re younger.

I’d also like people to know there is support out there. When Sarah was diagnosed I did hours of research, so we were prepared as possible for the future, but I’ve spoken to a lot of people who feel abandoned.

I know at some point I’ll probably have to make a decision about putting Sarah in a care home and the guilt is already there. My hope is that the dementia will have developed to the extent she doesn’t recognise where she is.

The decision will be made slightly easier knowing I’m making it not just for Sarah, but also for the kids. Obviously Sarah’s needs are paramount, but I have to think about them too.

It’s hard enough losing a parent when you’re young, but with dementia it’s basically like a long goodbye – you’re grieving before they’re actually gone.

Carers Rights Day is on 23 November, 2023. For advice and support on living with dementia visit the charity Dementia UK.

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