I knew something was wrong with Mum when she changed her stew recipe

We knew that her dad had died of dementia in his late 70s but we didn’t join the dots. Mum was just 58 and, if she suspected what was going on, she didn’t let on. She just laughed any mistakes or forgetfulness off and said she must be tired.

It was only when her boss rang my dad to say he was worried about her that we realised something was very wrong. Mum was an efficient and accurate medical secretary – and now mistakes had started creeping into her work.

We still thought it could be 100 different things and getting a diagnosis took a year. That wait was horrendous. Mum was getting increasingly confused, wandering in and out of rooms, not knowing what she was doing. I would take her into town clothes shopping and she would just wander off with no explanation.

I was living with my elder brother, James, in London. I was on TV every Saturday morning trying to be all happy and jovial and then belting up the motorway to Sheffield to see Mum. There was no room for tears.

Dad meanwhile was trying to hold the fort while working as an architect and surveyor. The strain was terrible.Then finally, in 2005, Mum was diagnosed with frontotemporal dementia (FTD). It’s a rarer form that commonly affects people aged between 45 and 64.

I just remember thinking ‘this can’t be happening to my mum’. We all felt completely helpless. Dad got sent away with some leaflets and never heard from the hospital again. He was determined to care for Mum himself so he gave up his job and we all mucked in.

Mum was the one diagnosed but the effect on our whole family was devastating. We knew it was a terminal illness but we didn’t know what to expect. Dad was under terrible pressure. It was 24/7. I would belt home every week and clean and cook. Seeing your mum change week by week is dreadful. I saw lots of things I don’t want to think about. She lost her mobility and her speech. And she could do nothing for herself.

As if the isolation for my dad wasn’t bad enough, good friends fell away. The stigma around dementia is bad enough now, but 20 years ago it was even worse. People were scared as though it was catching or didn’t know what to say.

I didn’t talk about it either. I was in my 20s. None of my friends were going through anything similar. It was almost like a burden of shame and I thought people wouldn’t understand. I remember one really good school friend telling me he didn’t know dementia could kill you. Shockingly, even now, only 10% of people know dementia is a terminal illness.

Dad struggled on by himself for the first few years. Then he managed to find a wonderful retired nurse to help. Sylvia turned out to be our fairy godmother. She lived locally and was there for Mum for the last few years – our ray of sunshine.

Dad also got tremendous support from the Alzheimer’s Society. They pointed him towards day clubs and singing groups, which Mum loved. She had a beautiful soprano voice and used to sing in choirs. Right until the end she would respond to music and try to lip sync along to the words. Her favourite for some unknown reason was The Beatles’ Yellow Submarine.

Amid all the awfulness there were lovely things. We had always enjoyed wonderful family holidays – Spain, Portugal, Italy and Disneyworld in Florida. Dad is very spontaneous and the Christmas before Mum died, he decided we should all go to New York. It was a mission but Mum loved it. She was there in her wheelchair, smiling and trying to laugh with happiness. We were fortunate that Mum always knew who we were and she seemed content. She never got angry or aggressive.

Mum died in September 2010. She was just 64. I was in London. I’d turned off my mobile phone. It’s the only time in my life I’d ever done that. I still can’t explain why. I woke to Dad’s message. I’ll always wonder if Mum was looking out for me. She didn’t want me racing through the night to get to her. Walking into the house that next morning with Mum dead was really strange. It was as
though I had known two different people – Mum before dementia and Mum with dementia.

I don’t know whether it’s a good or a bad thing to have those two people in my head. As time has passed, I think more of the mum of my childhood. When I’m cooking, I’ll be chatting to my daughter, who’s only three, about what her grandma used to make. It brings Mum alive.

It’s almost 20 years since Mum was diagnosed and I get angry when I see how little things have changed.

Families are still left completely unsupported. It’s shocking that governments have known this is a crisis and still do nothing. And yet it’s a time bomb. One in three people born today will suffer from dementia.

Over the past10 years, we have also lost mum’s sister, Jean, and her brother, Peter, at a similar age, to this terrible disease.

I got involved in helping the Alzheimer’s Society after Mum died because it’s crucial to spread the word. I’ve raised a fair few thousand pounds – I’ve run the London Marathon a few times, trekked the Great Wall of China and twice cycled to Paris. The bonus for me is that working with them has helped me talk about my lovely mum – to meet others and as she would have wanted, to spread the word.

Dementia’s devastating impact is enormous – it’s the UK’s biggest killer – but often the realities of the condition remain hidden behind closed doors.

As told to Tessa Cunningham

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