‘My husband has dementia at 44 – these are the symptoms I didn’t
Caroline Preston talks about the crushing impact that Mark’s illness has had on their lives and how she plans to raise awareness
By Anna Moore
The first changes I noticed in Mark might not sound like a big deal, but they were just so unlike Mark. One example that sticks in my mind was when we talked about baby names – I was pregnant with our son, our first child, at the time.
Mark’s attitude to names was: “Oh, whatever! Whatever you want!” He’d become dismissive about things when he never was before, and slapdash. I remember him putting a blind up in the baby’s room.
Before, he’d have measured and measured again and it would have been perfect. This time, the blind didn’t close properly. He’d chipped the paintwork and he wasn’t bothered.
Mark was 40 by then and we’d been married nearly 10 years. We’d met at a mutual friend’s wedding in 2004. Mark had just finished his Master’s in physics at Oxford University. He’d been a member of Mensa, he really was the most intelligent person I knew, but he was down to earth too, so practical and generous.
There was nothing he couldn’t do. He’d help someone at the drop of a hat – whether it was help with a computer, someone’s car, DIY, a problem on their roof. You could go to him with anything and know you were in safe hands. When he moved up to Derbyshire to be with me, he got a job with Rolls Royce where he was doing really well.
When he started to change – just subtle things here and there – it was so confusing. He began losing interest in things he used to love. Mark was an avid Formula 1 fan, but stopped watching the races. He’d always been friendly and sociable but stopped wanting to go out.
We stopped going out walking, which we’d always loved. He wasn’t interested in how my day had gone, where before he’d always been really caring and empathic. Nothing took the place of any of this – there were no new interests or preoccupations except for secretly overeating.
He’d go to the shops and buy family packs of biscuits and I’d find the empty wrappers. I’d say: “Crikey. You’ve eaten a whole pack of chocolate digestives?” Mark would say: “Oh, I was hungry.” And that would be it.
I was starting to lose the person I’d married, but didn’t know why. You don’t think of dementia when someone is only 40. It was around the time our son William was born, so I wondered if it was this? Was he tired? Was it his work?
By now we were in lockdown, I was on maternity leave, Mark was working from home and I noticed how disorganised he was. His paperwork was disorganised. He’d call into a meeting and if the person was a bit late, he’d say: “Oh well! They’re not here!” and disconnect. He was just really, really odd. I started to think he needed help.
This was lockdown, access to GPs was by phone, and I wasn’t able to speak directly about Mark – it had to be Mark speaking for himself.
He was signposted to talking therapies, and spoke to three counsellors over the phone in this identical monologue, talking about work and some stories about his school days, the reasons why he was acting that way.
If you didn’t know him, it sounded plausible. The counsellors all concluded he had stress and anxiety. We ran into a brick wall.
His antidepressants weren’t working. I managed to see a GP who did a memory test and Mark flew through it. I now know that frontotemporal dementia, which is what he has, doesn’t affect memory in the early stages.
After lots of pushing, we were referred to the community mental health team. Mark was 42 at this point. He wasn’t sleeping, he was flitting around at 100mph, fiddling with things. He would make rude comments about people when we were out, which he’d never done before. A psychiatric nurse visited us at home, watched Mark and really listened. She told me I needed to go to A&E and get a CT scan.
We waited in the A&E of the Royal in Derby for 13 hours and it was absolute hell on earth. By now, Mark couldn’t sit still for two minutes. When he was finally seen, they still diagnosed depression and anxiety, but I put my foot down and insisted on a CT scan.
It showed significant shrinkage of the brain. That’s when they admitted him for further investigation – lumbar punctures, MRIs, CTs, memory tests, blood tests.
Two weeks later, I was called in to see a consultant. Mark was there too but I couldn’t take anyone else because of Covid rules. I was told that Mark had frontotemporal dementia – by now I’d Googled, I’d done my research and it was the news I was dreading. I knew there was no cure, no drugs to slow it down, there’s nothing.
Mark’s reaction to being told was: “Are we done now?” Then he got up and went back to his bed on the ward. I cried and the consultant then left too, after telling me I could stay in the room as long as I liked.
No support was offered, no treatment plan, no signposting, no leaflets. I can’t tell you how lost and frightened I felt. I walked down the hospital corridor and it felt like the longest corridor I’ve ever walked. I felt like I was in a different zone. Everybody around me was living their normal life and I was just alone, terrified.
It’s a living grief. Mark looks like the person I married, but he has been stripped, piece by piece. He has deteriorated an awful lot since his diagnosis. He can’t dress himself. He started to lose his speech last year.
First he would talk in a whisper, but now he’s completely non-verbal. He can still chew, but he overcrams his mouth which makes him choke, so you have to supervise him.
He got aspiration pneumonia this summer because either food or drink ended up in his lungs. He also eats things that aren’t edible – soap, berries on trees, stones. He needs one-on-one care to keep him safe.
How do I cope? That’s a really tricky question. I know that some things in life just happen, you have no control over them and I try my hardest not to fixate on them.
Instead, I try to focus on today and what we can do at the moment. I’m a very pragmatic person and I’ve got to be strong for Mark and for William.
Mark, now 44, has an absolutely brilliant personal assistant to help him during the day at home. He goes to a day centre twice a week. I still work part-time as a primary school teacher and I’m, in essence, a single parent to William, who is now four. My family and Mark’s brother and sister help a lot.
One of the things I find really hard is not being able to ask Mark what he thinks we should do. We used to discuss everything, every decision was joint. Am I making the right choices? When do I think about full-time care?
It’s the silly things too. The oven wasn’t working the other day and I didn’t know what to do to fix it. It’s been really hard bringing up William on my own as I’m absolutely positive Mark would have been the best dad in the world.
He was kind, affectionate, calm – he had far more patience than I’ve got. He’d have been 100 per cent involved and was so looking forward to teaching him about science and numbers.
‘Daddy’s heart is broken’
William has grown up with his daddy this way, but he has started to become aware that he’s different. Just the other day, he said: “Daddy’s heart is broken”.
When I asked what he meant, he said: “Because he can’t talk.” I explained that daddy’s brain was broken, not his heart, and William wanted to take him to a “brain doctor” to get him fixed.
When the Alzheimer’s Society asked if we would be photographed and filmed for their campaign, I agreed – not because I wanted us to be seen, but because I wanted the condition to be recognized.
I’d like more people to know that dementia does affect younger people and it isn’t just about memory problems. When Mark was first diagnosed, I felt like the world had collapsed around me.
It was so lonely. I didn’t know where to turn. I hope that by doing this, people who are going through the same thing will reach out for support. They’re not alone
Mark and Caroline will appear in adverts across the UK for the Alzheimer’s Society’s Ultimate Vow campaign, which marks World Alzheimer’s Month. If you are worried by dementia, call Alzheimer’s Society’s Dementia Support on 0333 150 3456