Mum was always busy and always laughing. As well as having four children, she was a florist, a trained chef, and a pillar of the community who ran the local Scouts club, and raised funds for a nearby hospice. To me, she was the best Mum ever. So when I came home from school one day and found her crying, I was puzzled. ‘I don’t know what’s wrong with me,’ she said, brushing it off. ‘I’ve got nothing to be depressed about.’
Her increasingly disorganised behaviour and moments of sadness were something we learnt to live with, blaming 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. Then she developed a habit of chewing repetitively with her mouth empty. ‘Stop it, Mum!’ I’d say, getting really irritated. I feel terrible when I remember because I know now that it wasn't her fault, but I was 18 years old and didn’t know anything about dementia, except it was something old people got and Mum was only in her fifties.
A dementia diagnosis
Mum and Dad had been happily married since 1968. They were a good team. Dad worked extremely hard and, aged 64, he 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. Perhaps the idea that they may now be robbed of their future together was too much, he couldn’t face it. Instead, he played it down and protected her – and us – from it, which wasn’t too difficult because by then we’d all left home.
Consequently, we never had the, ‘Mum’s got dementia’ conversation. 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. I put on my jacket, walked out the office and never returned.
Dad’s death changed everything in my life. It was clear that Mum’s condition had worsened considerably, compounded no doubt by grief. It was only after Dad died that friends told me that when he was at work, they’d find her sitting in the dark in the living room, just waiting for him to come home. I got really upset thinking about her in that room. How many hours and days had she spent on her own? I made her a promise that she would never be alone again – and she wasn’t. I kept my promise, but it was the hardest thing I’ve ever done.
Becoming a carer
I was a gung-ho twenty-five-year-old and didn’t have a clue what caring for a mum with dementia might entail. I also took on a full-on job in Birmingham, but many carers are employed and I was very fortunate to have siblings all prepared to help practically and financially. My brother Mark moved back home, too, which was just as well because those first few years were absolute hell, especially when she kept waking during the night. I remember tying string to Mum’s bedroom door and putting it on my finger so I’d know if she left her room in the night.
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. In fact, I felt so overwhelmed that I burst into tears in front of the doctor.
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. How, I wondered, did people cope on their own?
Coping with stress
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. Sometimes Mark and I didn’t sleep much for a week and the stress and tiredness took their toll as they do with many families. One night we had a fight about nothing – we actually punched each other – which was horrible, but looking back I can see that the pressures were simply too much for both of us.
The stigma of dementia
Mum used to have a packed social diary and lots of friends so when all but a few disappeared I quickly realised that other people couldn’t handle it. I felt bitter and upset but then I didn’t talk much about her illness either, especially at work, because I didn’t want colleagues to know what was going on at home.
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. If only we could find ways to bring her back. We wanted more than anything to see her face light up, and those moments when she looked happy or excited, however brief, became precious.
With this in mind, we made a bucket list and did everything on it – from taking her to Venice, to going horse riding – but the dementia journey is long, and even if you can afford special trips and outings, you can’t spend every day doing them.
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.
Love and loss
Mum declined steadily over seven years, gradually losing the ability to do anything for herself. But there were four siblings, and so together we were fortunate enough to be able to pay for extra support from professional carers to help us out when things got really tough. And 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. Did I do the right thing? Who knows? I certainly mucked up my career which she wouldn’t have liked. But I also found a passion I never knew I possessed; to help other people affected by dementia to live well and to know that they, like my mum, aren’t alone.
- James Ashwell's story is reproduced with kind permission of Unforgettable.org. Founded by James, Unforgettable.org (now Live Better With Dementia) aims to improve the lives of those living with memory loss and dementia by bringing together specialised products, practical advice and a supportive community.