A year ago, almost to the day, my dad died of frontotemporal dementia (FTD).
My dad, who’d been an award-winning journalist, was just 67. It was utterly devastating for me, as well as for my mum, brother and sister.
Dad was diagnosed in 2017, aged 62. Around his 60th birthday, he’d started acting strangely, but initially, we thought he was depressed because of the big 6-0 coming up.
But then he didn’t want to get out of bed, and started falling behind with the bills. He kept asking us the same questions over again: ‘What did you have for lunch? How did you get to work?’
Increasingly worried by his behaviour, we eventually persuaded Dad to seek help. After a GP appointment, he was referred to a neurologist who ran a number of tests, which came back negative.
A brain scan was next, which revealed a deterioration at the frontal and temporal parts of his brain, which is how he got his FTD diagnosis.
FTD is a quite rare form of dementia, accounting for around one in 20 cases of the 850,000 people who have dementia in the UK, although it is one of the leading causes of the condition in under 65s.
I was at the appointment with my parents when they showed us the brain scan and what it meant. My dad only had a few years left to live. I went back to work like a zombie and couldn’t talk about what I’d just found out, I was just on auto-pilot.
As well as his personality and behaviour changing, after his diagnosis, he thought it was Christmas everyday for six months. Because it’s difficult to buy a turkey in July, he kept buying chickens and, at one point, there were six in the freezer. It might sound funny, but it was awful, and heartbreaking for us all.
We ended up going along with it, merrily saying: ‘Happy Christmas!’
Poor Dad had no idea there was anything wrong – despite us often telling him. When we did, he didn’t react with any emotion – it was like he was behind a glass pane, his normal human reactions so blunted by dementia.
But for my mum, who’d been married to Dad for 34 years, it was immeasurably hard, particularly the loss of the emotional relationship she had with him.
Dad was quick-witted, an original thinker and a real laugh. We all experienced a kind of pre-grief, mourning the loss of the person he used to be.
There were some really scary times too, like when he was supposed to meet Mum at Kings Cross, but got on a random train instead and we couldn’t find him for four hours.
My brother called Dad, and could hear him having an argument with someone in the background about his lack of ticket. Every time my brother asked if he could talk to the guard, Dad kept putting him on hold.
It turned out Dad had got turfed off at Swanley, Kent, because his Oyster wouldn’t take him further. Luckily, staff there guessed he wasn’t well and sat with him until we were eventually reunited.
Dad was unwell for about seven years, which is just under the average time doctors say you have to live with an FTD diagnosis
Luckily, we got lots of help from FTD support groups and charities like the Alzheimer’s Society. The best thing we got via them was the support of other families in the same situation. We had a ‘children of people with FTD’ group, which would meet every few months down the pub. It was strangely comforting.
Overall, Dad was unwell for about seven years, which is just under the average time doctors say you have to live with an FTD diagnosis.
The whole experience was anxiety inducing – I was just starting out in my career, my sister was finishing university and my brother was still at school. We were always on edge, worried about what was going to happen next. We felt totally helpless and powerless.
But the main responsibility fell on Mum. She ended up getting lodgers to help towards household bills and, later, with the carer bills. Carers would make sure Dad didn’t choke on food, or get lost. They were brilliant, helping him get dressed and with his hygiene.
As Dad’s needs became more intensive, we moved him to a nursing home, where he died, surrounded by his family, last April.
I’m a creative at London-based advertising agency New Commercial Arts, so when the opportunity arose to help make an awareness-raising campaign for Alzheimer’s Society last September, I seized it with both hands.
My Dad had died two weeks after I’d started my job there, and two weeks before I was due to get married, so I was thinking a lot about what marriage vows really mean.
So, I helped create an advert called ‘The Ultimate Vow’, which has just debuted on TV. The ad shows Adam and Laura, a loving married couple in their sixties, just like my parents, going about their daily lives – until it becomes apparent something is amiss.
The emotional ad shows Adam’s battle with dementia progressing before an Alzheimer’s Society dementia adviser arrives to help.
Like Bruce Willis’s announcement he had FTD recently sparking a huge rise in traffic to Alzheimer’s Society’s website, I hope my advert can help raise awareness of both Alzheimer’s and dementia, because there are still too many fears, taboos and a lack of understanding around them.
More funding into dementia research is also desperately needed.
I feel very lucky to have the chance to make a difference. Hopefully, I’ve made something beautiful from something so brutal.
Because at its heart, it’s a love story, inspired by my parents. The promise to love and cherish Dad, in sickness and in health, until death did indeed part them – that was Mum’s ultimate vow. Mum is pleased with the ad, but finds it hard to watch as it reminds her of Dad.
I was always a daddy’s girl and we always had a close relationship. I will miss his chipolata-shaped fingers, how he could make the sound of water pouring from a jug with just his cheek, his documenting of our family life in home videos, and how he would cheerily look over anything I wrote, from speeches to dissertations – and most definitely this piece.
My ultimate vow is to keep trying to make him proud.
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.
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.
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