Loving son James Ashwell, 35, didn’t know anything about dementia when his mom Fay was first diagnosed. Here he tells the story of his family’s journey and how caring for his mom gave him a passion to help others.
As told to Kate Corr
I was only 18 when I realized Mom was acting a bit weird. She’d always been a vibrant, kind and happy person with a busy, organized life. Now she seemed increasingly distant, disorganized and sad. Once, I came home from school and found her crying. “I don’t know what’s wrong with me, I’ve got nothing to be depressed about,” she said, quickly brushing it off.
Mom was diagnosed with early onset dementia in 2003, aged 59, but my three siblings and I had all left home by then and Dad didn’t tell us. He and Mom were a good team and would probably have continued to hide the true extent of her condition for a long time. But then on January 17, 2006, I received a phone call at work from a neighbor saying that Dad had died suddenly — and that’s when everything changed.
I was 25 years old and losing Dad out of the blue was harrowing, but there was no time to grieve because, without him by her side, it was plain Mom’s condition had worsened considerably. Friends told me they’d find her sitting in the dark living room just waiting for Dad to come home from work, which was so upsetting — how many hours and days had she spent alone?
I never wanted her to be alone again, so I gave up my job in London and moved back home to Birmingham to be with her. But I was a gung-ho 25-year-old, and didn’t have a clue what caring for a mom with dementia might entail.
The first time I took her to see the doctor, I was falling apart. I had a thousand questions, including ‘is she going to die?’ and only five minutes of allotted time to ask them. I felt so overwhelmed that I burst into tears.
Luckily my brother Mark moved back home too, so at least we had each other. But those first few months were hell, especially when Mom woke constantly during the night. I remember tying a string to her bedroom door and putting it on my finger so I’d know if she was out of bed.
Mark and I did what most carers end up doing: we muddled through. We soon realized that if Mom wasn’t to sit watching TV all day we had to find new ways to keep her busy and try to focus on what she could still do, rather than what she couldn’t do.
Gradually we found activities that brought her pleasure. She enjoyed jigsaws but it was upsetting to see her with ones designed for children, so Mark made some himself using laminated family photos and Velcro. My sister Gemma took her to jewelry-making classes and Mom started making necklaces at home. She was a trained chef and I was keen to help her continue cooking without hurting herself, so I called up the manager of a chicken factory and asked if we could buy a pair of cut-resistant gloves for her to wear. He kindly sent us several pairs free.
Of course there were bad days when nothing helped and the stress got to us all — Mark and I had a physical fight once and punched each other. But the moments of joy, when Mom laughed or grew excited about something, were absolutely precious. What we all wanted, more than anything, was to see Mom’s face light up the way it used to. I suppose we were looking for ways to bring her back to us, however briefly...
We couldn’t stop the illness, though. Mom continued to decline steadily. She died peacefully aged only 67, on February 17, 2011, the day after my 30th birthday.
Although devastating, the experience of caring for Mom changed my life and gave me a passion I never knew I possessed. I founded www.unforgettable.org to share what I’ve learnt and to make dementia-friendly products easily available to everyone.
There’s plenty of life to be lived with dementia – the reason I know this is because Mom showed me.
This story was told by James Ashwell and the post was written by Kate Corr. For more, check out our sister site Yours.