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A year ago, almost to the day, my dad died of frontotemporal dementia (FTD).\u00a0\u00a0<\/p>\n
My dad, who\u2019d been an award-winning journalist, was just 67. It was utterly devastating for me, as well as for my mum, brother and sister.<\/p>\n
Dad was diagnosed in 2017, aged 62. Around his 60th birthday, he\u2019d started acting strangely, but initially, we thought he was depressed because of the big\u00a06-0\u00a0coming up.<\/p>\n
But then he didn\u2019t want to get out of bed, and started falling behind with the bills. He kept asking us the same questions over again: \u2018What did you have for lunch? How did you get to work?\u2019<\/p>\n
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.\u00a0<\/p>\n
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.<\/p>\n
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.\u00a0<\/p>\n
I was at the appointment with my parents when they showed us the brain scan and what\u00a0it\u00a0meant. My dad only had a few years left to live. I went back to work like a zombie and couldn\u2019t talk about what I\u2019d just found out, I was just on auto-pilot.<\/p>\n
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As well as his personality and behaviour changing, after his diagnosis, he thought it was Christmas everyday for six months. Because it\u2019s 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.<\/p>\n
We ended up going along with it, merrily saying: \u2018Happy Christmas!\u2019<\/p>\n
Poor Dad had no idea there was anything wrong \u2013 despite us often telling him. When we did, he didn\u2019t react with any emotion \u2013 it was like he was behind a glass pane, his normal human reactions so blunted by dementia.<\/p>\n
But for my mum, who\u2019d been married to Dad for 34 years, it was immeasurably hard, particularly the loss of the emotional relationship she had with him.\u00a0<\/p>\n
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.<\/p>\n
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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\u2019t find him for four hours.\u00a0<\/p>\n
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.\u00a0\u00a0<\/p>\n
It turned out Dad had got turfed off at Swanley, Kent, because his Oyster wouldn\u2019t take him further. Luckily, staff there guessed he wasn\u2019t well and sat with him until we were eventually reunited.\u00a0<\/p>\n
Dad was unwell for about seven years, which is just under the average time doctors say you have to live with an FTD diagnosis<\/p>\n
Luckily, we got lots of help from FTD support groups and charities like\u00a0the\u00a0Alzheimer\u2019s Society. The best thing we got via them was the support of other families in the same situation. We had a \u2018children of people with FTD\u2019 group, which would meet every few months down the pub. It was strangely comforting.<\/p>\n
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.<\/p>\n
The whole experience was anxiety inducing \u2013 I was just starting\u00a0out in my\u00a0career, 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.\u00a0We felt\u00a0totally helpless and powerless.<\/p>\n
But the main responsibility fell on Mum. She ended up getting lodgers to help towards household bills and, later, with the carer bills.\u00a0Carers\u00a0would make sure Dad didn\u2019t choke on food, or get lost. They\u00a0were brilliant,\u00a0helping\u00a0him get dressed and with his hygiene.\u00a0<\/p>\n
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