Teacher Caroline Preston has been left to raise her four-year-old son
as if a single parent. But, she says, although her best friend has been
‘stripped away, piece by piece’ she knows he would be proud of her.
Here, Caroline shares her story with Metro.
I have a single copy of our wedding video from 2009 and sometimes I watch it to see Mark – his shoulders back, filled with life and energy and so excited about the future. Later, when our son William was born, Mark was over the moon and so looking forward to teaching him about maths and science, or taking him places. I can imagine Mark on the school run or at sports day and I know he’d have been 100 per cent involved – the best father ever.
Instead, when Mark was about 40, in 2018, I started noticing subtle changes in his behaviour. He was one of the most thoughtful and generous people I knew – but he didn’t have the same caring nature. When Mark’s grandma died, he wasn’t upset at all, and they’d been really close. He stopped asking how my day had gone and became dismissive.
Even when I was pregnant and choosing baby names he didn’t show that much interest. I dismissed it as tiredness but the signs started to build up. He started overeating. Secretly, he’d buy family packs of biscuits and eat the lot and hide the wrappers in the car. He also started repeating himself a lot.
There was strange behaviour, like waking in the night and banging clothes hangers together, or forgetting how to load the dishwasher. Yet Mark had been a Mensa member, and did a master’s degree at Oxford University.
Realising something was really wrong, I tried to get help. But then Covid hit; no doctor would see Mark. He eventually spoke to three counsellors but due to the pandemic the consultations were by phone. They concluded Mark was missing the routine of work – but I knew they were wrong.
It was confusing and sad, becauseI was starting to lose the person I’d married. His behaviour became manic. He changed into somebody I didn’t know. You’d be out and he’d talk about somebody’s weight and be rude, and the Mark I fell in love with would never have been like that.
Mark and I met at a mutual friend’s wedding in 2004 and we just hit it off straight away. We were very similar and liked going walking, travelling and doing DIY. We were married in 2009 and Mark moved to Derbyshire to join me and start work as a commercial manager for Rolls-Royce. We had so much fun together and when William arrived ten years after our wedding, our happiness was complete.
But by 2021 I knew something was really wrong. Finally, I managed to get an appointment with a GP who really listened to me and understood. He arranged for a psychiatric nurse to see Mark and she sent us to hospital, where a CT scan revealed significant shrinkage of the brain.
Mark got his diagnosis of frontotemporal dementia (FTD) in August 2021 at the age of just 42.
I felt like the world had collapsed around me – it was the news I was dreading. I knew there was no cure and no drugs to slow it down. Since then, Mark has deteriorated quickly. We’d expected to have this lovely family life and bring William up together, but I’ve turned into a single parent and a carer. It has been really hard bringing up William on my own. I’m always thinking about what Mark would have wanted. He can’t say it, but I know him and I can feel he’s proud.
I have to be strong for Mark and for William
Mark has an extremely aggressive type of dementia. He started to struggle with personal care. He stopped being able to dress himself and now he’s non-verbal. He will also eat things that aren’t edible – he grabs fancy soaps, dog food, cat food, stones, and he grabs at berries on trees when he’s out on walks.
But I have brilliant support from family and friends, and I use theAlzheimer’s Society website to inform myself of his rights and how to access help. I feel extremely fortunate to have an excellent GP, community team and neurologist that I can turn to for help.
Yes, some things in our life are out of our control. But there are things I can change, and I focus on those. The future is bleak and it’s devastating, but I have to be strong for Mark and for William, so I try to focus on each day.
William is four now and has grown up with his daddy this way. 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. Then he wanted to take him to a brain doctor to get him fixed.
I really miss Mark. I’ve lost my best friend. He’s stripped away piece by piece. But I’m speaking out to raise awareness, and to show it does affect younger people, but you’re not alone. I’m keen for more research, and Alzheimer’s Society do fund programmes and one day they could hopefully change people’s lives.
‘I’m studying to help my grandad’
Jayden James, 19, is so keen to help his beloved grandfather, Raymond, that he is studying psychology at Liverpool University. Jayden says:
‘I have always been so close to my grandad. He advises me on every aspect of my life and I Facetime him often. One of my happiest memories is seeing Grandad playing in a steel band. He made a steel drum with me, taught me how to play it, and when I played it in the school assembly he was so proud.
‘We’ve always enjoyed such a special bond. Grandad has met the majority of my friends over the years, and perhaps that’s when some of the first small signs crept in that something wasn’t right. My friends would come into the room and chat and Grandad would ask me what their names were.
‘He was diagnosed in 2017 when I was 13. I didn’t understand it at the time but as I grew older I realised I was the youngest person in the family and the one with the least knowledge about dementia. So I started to educate myself about it – and that’s how I decided I wanted to study psychology – so I can understand people like Grandad and help.
‘I’ve visited the Alzheimer’s Society centre where Grandad goes twice a week and joined in the activities. I chose to do a big presentation on dementia during my first year at uni.
‘The reality of Grandad’s condition is harder for my dad, Richard, and my grandma, Cynthia. But for me, he’s still my grandad. We talk about football, friends, my studies and the future, and I go to him for advice.
‘He’s always been there for me – and I want to always be there for him.’
The real faces of dementia
A couple in their 80s sitting in a tattoo parlour, having matching love hearts inked onto their arms.
The family who celebrate Christmas every day – with a freezer full of turkeys – because Dad thinks it’s 25 December. The little boy who tells his Mummy that Daddy is ‘broken’ – as she continues to raise him alone. The son who realises something is wrong when his father keeps ordering pork pies.
The motorbike lover who suddenly can’t turn the handlebars. The nurse who heartbreakingly diagnosis her own symptoms. The scientist who has devoted his life to helping them all.
Meet Ron and Sheila, Jules, Caroline and Mark, Grant, Anita, Fran and Tim. They are the real faces of Alzheimer’s and dementia – loving couples and families who know only too well that grief for an old life can make way for a new one you never planned. They know the love, the laughter, the compassion and the fear of facing Alzheimer’s and dementia – the UK’s biggest killer.
This week and next, Metro brings you the truly inspirational stories of how they have coped, how they have laughed as well as wept and how the Alzheimer’s Society has provided them and their loved ones with vital support.
Alzheimer’s and dementia: the facts
The most common forms of dementia (symptoms of a decline in brain function) are Alzheimer’s disease followed by vascular dementia.
Alzheimer’s is caused when plaques and tangles form in the brain making it increasingly hard for it to function properly. Early symptoms include forgetting recent events, struggling to remember words, becoming disorientated in familiar places and finding it difficult to concentrate.
Common early symptoms of vascular dementia include problems making decisions or following a series of steps, such as cooking a meal; slower speed of thought and trouble sleeping. The condition can also cause significant mood changes and depression and make people behave completely out of character.
Dementia is the UK’s biggest killer – and one in three babies born today will develop dementia in their lifetime. The risk of developing both Alzheimer’s and vascular dementia roughly doubles every five years from the age of 65. Women and men are affected equally. Diabetes, obesity, heart problems and high blood pressure all increase the risk.
However, you can significantly reduce your chances of developing the diseases by leading a healthy lifestyle – not smoking or drinking to excess, eating a balanced diet and getting regular exercise. Keeping mentally and socially active is also beneficial.
The third most common form of dementia – accounting for an estimated 20 per cent of cases – is Lewy body. With this condition, tiny clumps of protein appear in the brain’s nerve cells, causing a range of issues including mood swings, problems processing thoughts, hallucinations, difficulty balancing and walking slowly. Although DLB (dementia with Lewy body) can affect people under 65, it is much more common as we age, affecting men and women equally.
There is currently no cure for any of the forms of dementia. But getting an early diagnosis is very important in allowing you and your loved ones to access all the medical and social support available. If you are worried that you have any of the symptoms, your GP will be able to refer you to a specialist who can carry out a range of tests.
If you are worried that yours or someone else’s symptoms may be dementia, download the Alzheimer’s Society symptoms checklist, on alzheimers.org.uk; for more information or support on anything you’ve read here, call our support line on 0333 150 3456 or visit our website.
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