At the beginning, you wouldn’t have known that Neil had dementia unless you spent time working or living with him. If you met him in the street, you might think he was just a bit eccentric.
Alarm bells started ringing seven years ago when we were thinking of moving to the south coast. Neil would forget conversations we’d had around the dining table about big life decisions. I ended up taking minutes of our conversations and emailing them to him to prove it. His behaviour seemed strange and irrational. Suddenly I felt I didn’t want to make such a big change after all.
We’d met while serving in the police. Initially, he was referred to an occupational therapist by the force in February 2015. Neil wasn’t the type to go to the doctor, but they’d noticed something wasn’t right. They were worried about his well being and his performance, and because they had an in-house occupational therapist that was the first step of their procedure. Because his place of work had noticed too, I started paying a bit more attention. Until that point, I’d put his forgetfulness down to stress.
I was 41 at the time, and Neil was 51. Our daughters Bessy and Milly were 5 and 6. We moved house locally instead, which was the straw that broke the camel’s back. During the move, Neil couldn't cope at all. A few months after he’d first seen the occupational therapist and a week after we moved house, he broke down because he couldn’t face going to work. Enough was enough, and I took him to the doctor.
Neil had never taken a day off work in his life before, apart from when he fell off his motorbike, but he explained to the doctor that he was forgetting things, stressed and not sleeping. He was signed off for two weeks and burst into tears of relief.
When that was extended by another six weeks, the GP did a few basic tests and referred him to our local memory clinic, who referred him to a psychiatrist for more in-depth memory tests. The results showed how bad his memory really was. He wasn’t formally diagnosed with young-onset Alzheimer’s until later in 2015, about six months after he’d initially been signed off, which is quite quick for a dementia diagnosis.
The psychiatrist asked Neil if we would accept the diagnosis, he said yes. Lots of people request more tests. They don’t want to accept it, because of the stigma. It was deeply shocking and a lot to take in, but at least we knew what we were dealing with, and Neil didn’t have to keep pretending that everything was all right.
Before the diagnosis, he’d been a hands-on dad, always taking the girls to the park and playing games. While I was at work, I gave him a timetable instructing him when to walk the girls to school, and set alarms on his phone to remind him of things. We muddled through for a couple of years while he could still drive.
Although his brain was slowing down, he was physically fit and able. He decided to walk the Thames Path in 2017, which helped him to come to terms with the diagnosis and accept how it would change our lives.
People don’t expect to be diagnosed with dementia in their fifties, but according to the Alzheimer’s Society, over 42,000 people in the UK are living with young-onset dementia. Overall, the exact cause of Alzheimer’s is unknown. There isn't one definitive answer as to why someone may develop young onset dementia. People can be diagnosed with a range of subtypes under the age of 65, including vascular dementia which can be linked to lack of exercise or poor diet. Dementia is more likely to occur at a younger age with genetically inherited types of dementia, such as frontotemporal dementia or familial Alzheimer's disease - but when he was gene tested, Neil didn’t have the genes that meant he would be likely to get it.
I’ve never been able to 'switch off' ever since the diagnosis. Over time, he stopped being able to tell the time, drive or use his phone or a bank card, or find his way home.When your partner has dementia and you’ve also got young children to think about, you’re torn in all directions.
In 2019, at 46, I made the decision to leave work and become his full-time carer, which I found really hard. I was embarrassed to not be working, and it was isolating, but my primary role had to be looking after Neil and the girls. I felt stifled by the house and by being at home a lot.
There are still glimpses of Neil’s sense of humour, but before, he was confident, loud and gregarious. He can’t find his words or have conversations now, and he doesn’t know his date of birth. I miss his personality, which has ebbed away. These days, I dress, shower and feed him, and help him go to the toilet. It’s not the life I envisaged for my 40s, and it wasn’t the plan that Neil and I had for our lives together. When we retired, we wanted to buy a campervan and travel around Europe.
We’re lucky to live in Berkshire near a charity called Younger People With Dementia (YPWD) which supports people with young onset dementia. We’ve also been lucky to have an Admiral Nurse, Lizzie, a registered nurse who specialises in dementia, giving time and support to family carers. It’s a postcode lottery, and not everyone has access to an Admiral Nurse. It’s made a massive difference for me. The charity Dementia UK train and support them, but they’re funded differently in different places.
I swim every week to help me cope. I drop Neil off at my brothers while the girls go trampolining or swimming, and get in the pool myself. When I pick Bessy up afterwards, she says, “I can tell you’ve been for a swim, you seem much happier”. Fundraising and raising awareness has helped too. It makes us feel proactive. In lockdown, Bessy and I wrote a cookbook, Bessy Bakes: Fond memories and fun recipes to support families affected by dementia (you can follow @bessiebakes.uk on Instagram) with all proceeds going to Dementia UK. Both Bessy and Milly are resilient, caring and resourceful, which they’ve had to be.
It’s also helped to be open and honest. There’s still a real stigma around dementia. Neil and I decided very early on that we wouldn’t be ashamed, and that we’d talk frankly with the girls. I’m so glad Neil and I had important conversations when we were able to, because now I’m at the stage where I’m thinking about care homes, and I can make decisions that I know the Neil of old would be happy with.
Dementia UK has launched a new campaign, #ILiveWithDementia, highlighting the need to support family carers and the life-changing support that specialist Admiral Nurses can offer them; dementiauk.org/ILiveWithDementia