I’m scared my dementia will make me forget who my wife is
Diagnosed with dementia at the age of 51 , Andy Moxon, a sports technician from Lancashire, and his wife Christine, 45, a nurse, share how his illness has affected their marriage. Christine has two daughters in their twenties from a previous relationship. Here's their powerful account of living with dementia...
Christine's story
Standing at the finish line of a triathlon where my boyfriend Andy and I had been volunteering, I was a little confused when I was called over to meet him. Looking across at Andy, he was down on one knee with a ring, the crowds were cheering, the photographers were clicking away and as athletes raced past us, of course I said yes. It was a lovely moment.
Andy and I had been friends for years before getting together. Both instructors for the army cadets, we would often work with each other at sporting events and although he seemed kind and made me laugh, at first there was no romance.
But nine years ago, we were due to meet up with a group of friends for the weekend. I joke to this day that he paid them all to not turn up because it ended up being just the two of us. Somehow, we simply looked at each other differently and Andy asked me out. But I was a single mum in Bolton while he lived miles away in St Anne’s and I didn’t think it could work. However, later I rang him to say I’d made the wrong decision.
"Let’s see how things go," I said. It’s a phrase we still use all the time today.
A few months later, Andy let it slip that he’d bought a ring. He talks in his sleep! But the proposal at the triathlon was still a huge surprise.
Early warning signs
We got married seven years ago and for the first few years, life was good. Andy was doing his triathlons and my daughters play football, so every weekend we were at a match. We’d go camping together and were enjoying life.
But about three years ago, I noticed Andy was becoming more forgetful. He’s never been great at remembering things like birthdays but this was different – he was forgetting everyday words or they were coming out wrong. What was even more strange was that he didn’t seem to realise. For instance, he’d say the name of our favourite pub The Dog and Gun and it would be The Dog and… then a very rude word. But he had no idea he was saying it.
Andy has never been great at remembering things like birthdays but this was different – he was forgetting everyday words or they were coming out wrong.
When I pointed it out, he’d be slightly defensive so I decided to start recording him on my phone. I didn’t want to embarrass him but I needed to show him and besides, if something was really wrong – like a tumour on the brain – then perhaps these recordings might be helpful for the doctors.
Andy was reluctant to go to our GP, thinking I was making a fuss but eventually he booked an appointment in November 2022, mostly to stop me 'nagging'. I was relieved. Perhaps nothing was wrong and all he needed was some vitamins. But I’d noticed he was getting worse, becoming more clumsy and stumbling more.
Devastating news
The nurse at the GP did some basic tests – asking him to count backwards in fours from a hundred and to remember a name and address, then report back minutes later. Andy came away thinking he’d smashed it, but it turned out he’d got lots of things wrong and the nurse said she wanted to refer him to the memory assessment team.
Waiting for the appointment was really hard. Andy kept facing the issue with humour saying he would be fine, but I was pretty sure it wouldn’t. Scans didn’t reveal much at all. Blood tests were clear. It was in March 2023 that a consultant finally said the words 'neurogenerative dementia' but he couldn’t say which type.
A consultant finally diagnosed 'neurogenerative dementia'. To hear those words was devastating and I remember looking at Andy thinking, 'Have you taken in what the consultant just said?' – I knew he hadn’t.
To hear those words was devastating. I remember looking at Andy thinking, 'Have you taken in what the consultant just said?' – I knew he hadn’t. He was chatting away to the doctor while I went numb. Andy was only 51 and immediately I started to worry about how this disease could change him – and us.
When we arrived back at the car I said to Andy again, "You do realise what you’ve just been told." And that’s when it seemed to hit him hard. But he was determined to carry on as normal. He even went into work the next day and told his colleagues.
He first started on medication to help delay the dementia but it didn't suit him. It made him stumble even more so he came off it a few weeks later and saw another specialist.
Facing the harsh reality
By now, the shock of the dementia diagnosis had worn off and Andy started a kind of 'grieving process'. He went from shock to denial to anger. His mood became low, he started drinking and we began having rows. He couldn’t understand why it had struck him – he was healthy, he exercised and looked after himself. He kept asking: "Why me?"
Andy couldn’t understand why dementia had struck him – he was healthy, he exercised and looked after himself.
The nurses could tell it was affecting his mental health and at his lowest point, he said he wanted to end it all. On one very frightening occasion when I was out running with him, he tried to do that very thing and I managed to stop him. But he was angry with me for stopping him – and angry with himself for not being able to do it.
It wasn't long after this that we made contact with the charity Dementia UK and booked an appointment with an Admiral Nurse – a specialist dementia nurse who provides support for families like ours.
Getting support
The first time we met our Nurse, she was lovely and having someone else explain to Andy what was going on with his condition seemed to really help him. Knowing that we could call her for advice and support was such a relief.
Three years on, we’re now on more of an even keel, but it’s still a rollercoaster. Andy can become very confused and simple tasks like cooking can be hard because he forgets things and burns them.
Andy was only 51 when he was diagnosed – immediately I started to think how this disease could change both him and us.
Andy has a tracker on his phone so we can find him as he’s gone out once or twice and got lost, even when he's been on familiar walks such as in our local park with the dog. But he finds that distressing. He describes his condition as feeling a bit detached from his surroundings. I can understand why others describe it as a 'fog'.
Testing our marriage
His employers have been brilliant, with Andy’s boss even ringing the Admiral Nurse to see how they could best adapt to help Andy. For instance, he has a real problem with certain colours such as black. If he’s walking on a black surface, he can’t gauge depth so will stumble a lot. Andy’s boss allowed him to have a colleague with him to help him occasionally and Andy makes 'cheat sheets' to help remind him how to do certain tasks.
Andy started a kind of grieving process. He went from shock to denial to anger. His mood became low, he started drinking and we began having rows.
Today, the disease has made us refocus. We no longer wait to do special things, such as holidays and outings, because life is too short. We take tonnes of photographs, otherwise Andy can’t remember short-term what we’ve done, although he knows that we’ve had a good time and can see from the pictures that he’s enjoyed himself.
He wants to carry on working and racing for as long as possible. This year we’ve already done the Manchester and London marathon, the Rob Burrows run and two half Ironmans. Andy wants to keep raising awareness of dementia, which is great. We’ll do it for as long as we can but there’s a strong sense of fear about the future.
Today, the disease has made us refocus. We no longer wait to do the things we want to do such as holidays because life is too short.
I have to keep reminding myself that when Andy is angry or not himself, it’s the disease doing this to him, not Andy himself.
No one can give us a prognosis as every individual is different, so we take each day as it comes. As we’ve always said, We’ll see how things go."
Andy's story
When I was first diagnosed, I was expecting to be told I had something like a vitamin deficiency or scar tissue on the brain, so when I was told it was dementia, I couldn’t believe it. I was 51 and thought you couldn't get it at that age. I had a cry with Christine but went into work the next day and told my boss and friends. I wanted to try and be as 'normal' as possible.
Around a week later, my dad came to stay with us and I broke the news to him. I decided to play it down a bit and say nothing would change. But it was as I was telling him, over a glass of whiskey, that I realised nothing could be done to help me and there was no remission. That’s when the anger started to build up.
Christine kept saying, 'You’re drinking every day' but it was helping me sleep, though I’d then wake up worrying about what would happen to us and to our relationship.
I’m fit, healthy and barely even drunk alcohol, so I kept questioning: 'Why me?' With the anger came drinking and nightmares. Christine kept saying, 'You’re drinking every day' but it was helping me sleep, though I’d then wake up worrying about what would happen to us and to our relationship.
I was given so little support or information at the time. If I hadn’t spoken to the Admiral Nurse last year, I question whether I’d still be here. I know it’s selfish to end things but there were occasions where I tried. I just didn’t want to be here any more.
Help with my emotions
I still feel low sometimes, but the Nurse has helped me so much, because she told me everything straight about dementia, without any sugar-coating. It's so vital to have those facts. But she also gave me some positives.
My biggest fear is forgetting who Christine is and the Nurse said that although that might happen, I will also know that I'll always feel safe and loved when I’m with her. That was a huge comfort.
The Nurse also explained why I felt so angry, and why I was suddenly drinking and depressed. She said I was grieving for the life I might not be able to have anymore. And knowing that being angry was normal was a massive relief to me. I finally stopped beating myself up.
I can still be angry but I control it better. I accept the feeling and won’t let it fester. I did 16 weeks of Cognitive Behavioural Therapy (CBT) which helped me to notice the signs of depression and anger, and find ways to deal with it.
I really don’t know how Christine coped in those early days, working in the hospice and dealing with death and dementia during the day, then coming home to me like this. I couldn't help disturbing Christine with sleepwalking and nightmares – I don’t know how I earned her love but our relationship must be very strong.
One thing I find upsetting is someone coming up to me and saying hello and sometimes I will say, "I’m really sorry, how do I know you?" The look on their faces is heartbreaking. They’ve known me for years but I don’t recognise them.
Keeping physically fit and going for a run can help me clear my head if I get too emotional. I’ve been racing since I was 16 or 17 and while I love it, having to rely on a guide gets tiresome and takes some of the enjoyment out of it.
One thing I find upsetting is being at a race, someone coming up to me to say hello and sometimes I'll reply, "I’m really sorry, how do I know you?" The look on their faces is heartbreaking. They’ve known me for years but I don’t recognise them.
People see me as this brave, fit, active person who is not giving in and fighting as much as he can but they don’t see the hours and hours of sitting at home and crying.
Everyone says how amazing I am for raising awareness of Dementia UK but without Christine and all my friends who step up when I need them, I wouldn’t be able to do any of this. I’m really so grateful.
Andy and Christine's story is featured in Dementia UK’s new podcast series 'My life with dementia.' To find out more, visit Dementiauk.org/dementia-podcast.
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