Mum was a florist, a trained chef, and a pillar of the community. To me, she was the best Mum ever. However, she was becoming increasingly disorganised, which she blamed on hormones, tiredness or simple forgetfulness. It was only when she picked me up from army cadets one day and started driving home on the wrong side of the road that I realised there was more to it.Mum and Dad had been happily married since 1968. Dad worked hard and, aged 64, was looking forward to retiring and enjoying his sunset years with Mum. Maybe that’s why he couldn’t bring himself to tell us that Mum had been diagnosed with frontotemporal dementia in 2003. Instead, he played it down and protected her.
None of us realised just how much her illness had progressed until 17 January 2006 – just before I turned 25 – I received a phone call at work informing me that Dad had died suddenly a few hours ago. Dad’s death changed everything in my life. I returned to Birmingham to be with Mum, but it was clear that her condition had worsened considerably, compounded no doubt by grief. At the time I was a gung-ho twenty-five-year-old and didn’t have a clue what caring for a mum with dementia might entail.
My brother Mark moved back home, too, which was just as well because those first few years were extremely difficult. The first time I took Mum to the memory clinic, she dressed nicely, looked lovely and answered all the questions in the Mini Mental State Examination surprisingly well, but I was falling apart. I had a thousand questions for the doctor – including “Is she going to die?” – and only five minutes of allotted time to ask them.
Eventually Mark and I did what most other carers do; we learnt to muddle through each day as best we could, always mindful that at least we had each other. But the toughest part was the lack of sleep. Mum got days and night mixed up, and we’d find her packing suitcases for an imaginary holiday at 3am, or getting dressed for a lunch date at 4am. We quickly realised that if Mum wasn’t going to spend all day sat staring at the TV, we needed to find new ways to keep her busy and give her a sense of purpose. We wanted more than anything to see her face light up, and those moments when she looked happy or excited, however brief, became precious. We soon discovered that visiting garden centres or going to McDonalds for milkshakes (even if she did insist on walking through the drive thru!) brought Mum pleasure too, as did jigsaws, jewellery-making, drawing and colouring books – although we all fervently wished we could find some that weren’t designed for children.
Mum declined steadily over seven years, gradually losing the ability to do anything for herself although we still had many happy, hilarious moments with her, right to the end of her life. She died peacefully at home on 17 February 2011, a few hours after I turned 30. She was aged just 67. If there is such a thing as a good death, I’d like to think that she had it. Looking back, I realise I was very lucky to have a mum who gave everything for her children, which is why I probably felt compelled to give everything back. I found a passion I never knew I possessed; to help other people affected by dementia to live well and it’s what prompted me to set up Unforgettable.
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