James and his mother, Fay
‘Over the past few months I’ve got to know the wonderful, passionate and driven James, who for very similar reasons to me, has devoted his life and business to helping improve the lives of people living with dementia,’ says Nourish founder, Jane Clarke. ‘James asked me to speak alongside him when he launched his Unforgettable products on the high street at the John Bell & Croyden pharmacy in London. And when he introduced the new Dementia Carers Coffee Mornings in the same venue, James invited me to talk about the challenges we face when looking after someone with dementia. From his own experience, he understands how important it is to tackle issues around nourishment in a way that brings joy and dignity to people’s lives.
James has huge commitment and energy, and he’s bringing a breath of fresh air to the way we think about dementia. I'm thrilled that Nourish and Unforgettable are working together and look forward to seeing what James does next. Read on to find out more about his story…’
Nourish: When did you find out your mother, Fay, had been diagnosed with frontotemporal lobe dementia?
James Ashwell: ‘There’s a big difference between when you know and when you accept. My mum was diagnosed in 2003, when she was only 59, but my dad protected myself and my three siblings from the reality of her condition. It wasn’t difficult as we were all living away from home at the time. When someone is functioning with only occasional slip-ups, it can be easy not to take too much notice, especially as she was so healthy and young looking. That all changed when my dad died in 2006. When I went home to Birmingham it immediately became clear that mum’s condition was much worse, compounded by grief about the loss of my dad.’
You were only 25; why did you decide to take responsibility for your mum’s care?
‘In a crisis, you can decide to run away or run into it. My dad had just died and my mum was ill, and my way of coping with the shock and upset of this was to be busy. The job that needed to be done was to look after my mum, so that’s what I decided to do. She had cared for us, so the decision seemed obvious.’
How did your day-to-day life change?
‘My brother Mark moved back home, too, and my other brother Simon and sister Gemma were on hand to help. I was working full time and looking after Mum was exhausting, especially as she would get day and night mixed up and we’d find her packing suitcases or getting dressed at 4am. Having the four of us really helped, as we could have time off and recuperate when we needed it. We muddled through those first years and like anyone struggling with a job, finances and care, keeping up Mum’s interests was way down the list. But gradually we realised that we needed to find new ways to keep her engaged and entertained, and give her a sense of purpose.’
Your mum was a trained chef. Did dementia affect her ability to cook?
‘Mum always loved to cook, even though she didn’t much like eating – she found it inconvenient when she had so much else to do! She loved providing for others, though, and would give us a cooked breakfast every morning and a three-course meal each night. As her dementia progressed, she found it more difficult to prepare food and was told it was too dangerous for her to cook any more. Mark and I managed to find Kevlar cut-resistant gloves from a chicken factory and that enabled her to continue cooking for another three years. In fact, she became more experimental with her cooking – she made Chinese food for the first time after her diagnosis; it was to do with losing her inhibitions. Cooking was so ingrained in her, such a part of her routine, that our job was just about keeping her safe, so that she didn’t burn or cut herself, and could continue to enjoy it.’
Was eating an issue for your mum while she was living with dementia?
‘Her appetite was definitely affected and she developed the habit of chewing repetitively with her mouth empty. Looking back, we could have done so much more to encourage her – cake baking, picnics. We could have reminded her that dad’s favourite pudding was Spotted Dick and encouraged her to make it, and that might have helped keep her weight up. It’s one of the reasons I’m so keen to work with Jane and Nourish. We can inspire families and carers of those with dementia to cook and eat together. We could help care homes to help people with dementia incorporate activities like cooking and washing-up into their day. One of the leading causes of hospital admissions for people with dementia is malnutrition, followed by dehydration. At Unforgettable, we sell products that help make eating and drinking easier for those with dementia. Jane helps people to enjoy delicious, nourishing food and to find a way around the challenges to eating and nutrition that dementia brings.’
What other interests did your mum maintain after her diagnosis?
‘Mum loved drawing, colouring and making jewellery, and doing puzzles and jigsaws, but a lot of the kits on the high street are designed for children. We made do with what we could find and improvised where we could. Gemma went to craft shops to source grown-up beads and accessories, and bought bigger beads as Mum’s dementia progressed so she could continue her hobby. Mark and I got so fed up of watching Mum do children’s jigsaw puzzles that we made some ourselves using family photos, a laminator and Velcro – it had the bonus of helping Mum remember family members. In the seven years I cared for Mum, I spent a lot of time trying to find solutions for problems like this. Before Unforgettable, there weren’t any dementia products available on the high street. I realised there needed to be – that we needed a Mothercare for dementia.’
Why did you launch Unforgettable?
‘After my mum died in 2011, I saw a therapist as I was struggling to cope with the grief of losing both my parents. At the same time, I was freed up from the responsibility of caring. I wanted to turn my experience, my passion and sense of injustice about the lack of products to support Mum, into something that would help other people. Our mission at Unforgettable is to improve the lives of all those affected by dementia and memory loss by providing products and services to support them. We began online but now Unforgettable products are available in Lloyds Pharmacy. We also have an incredible Unforgettable community, bringing together people affected by dementia. I believe there’s plenty of life to be lived with dementia and I want to play my part.’
You might also like to read…
Dementia Carers Coffee Mornings
James’ story: ‘How caring for my mother led me to Unforgettable’