Lois Wolffe's mum was struggling with the enforced isolation of lockdown and joined her daughter in a daily creative initiative, the 100 Days Project. Lois's mum was formally diagnosed with dementia in 2021 and never completed the project. Lois took inspiration from her mum's artistic background by embroidering her life on a smock to encourage people to talk more openly about dementia. Lois has been nominated for Creative Fundraiser of the year in the 2023 GoCardless JustGiving Awards.
Lois's story:
"Looking back, mum must have been developing dementia during the first Covid lockdown in early 2020. We all thought that mum was doing fine on her own; she said she was, and she had always been happy in her own company. Our only concern at that stage was her growing frailty. We only saw her occasionally in those months, when restrictions briefly allowed or when taking her to the hospital for appointments about her eyes.
"I would call my mum every night and we would talk about anything and everything; conversation had always come easily to us. With hindsight, those calls were the first sign. She started just listing what she had done that day, from when she had got up until the moment I called. It was strange, but it didn’t occur to me that there was anything more serious going on.
"When restrictions returned in late 2020, my brother stayed next door to my mum for three months – we were still concerned about her frailty, particularly in case she had a fall during the winter months. When I spoke to him at Christmas, he admitted he was struggling and needed a break. I moved down to be with my mum and he went back home. I had been with her less than a day before I started googling the symptoms of early stage dementia.
"We were fortunate in many ways in that my brother and I could share the caring between us. I stayed for two months at the start of 2021, then we would take turns every few weeks. It was hard to manage during Covid – I would go out the back door just before he came through the front – but between the two of us we coped. It was exhausting – we were both driving hundreds of miles every 2-3 weeks, had fulltime jobs and mum was clearly deteriorating. I dread to think how it would have been for anyone caring on their own, or without anyone to mind them.
"She was formally diagnosed in April 2021. A locum had come to see her after she had responded poorly to her Covid vaccination. After talking to her, he asked if he could carry out a short memory test and we agreed. We had previously held off getting a formal diagnosis as we were worried it would distress her. A few weeks later, we got a call from someone at the memory clinic who spoke directly to mum. Without any warning, he announced to her over the phone that she had complex mixed dementia. The next day, she said ‘I only have a little bit of Alzheimer’s, don’t I?’ and I said ‘It’s just a label, mum. You’ll always be mum and we’ll always take care of you.’ She never referred to her diagnosis again.
"My mum was an art student in the 1950s and had always drawn and painted. Not from her imagination – she would draw whatever was in front of her. I got her involved in the 100 days project during the 2020 lockdown. She drew a picture daily until she reached day 82. After that, she never picked up a pen or pencil again. It was as though that door had closed and the woman who loved to draw was on the other side. My smock project was a response to this. Mum had worn fisherman’s smocks over her clothes for years when she used to sculpt and do pottery. I found this smock in the back of a cupboard in her house and asked if I could embroider it.
"I started to stitch key themes from mum’s life into the smock. She was born in Scotland but moved between here and South Africa a number of times in her life. So I started by stitching swallows on a washing line – the same swallows she could see from the window who, like her, lived between Scotland and South Africa. I realised I was embroidering her life on the smock while her own memories of that life were fading. Stitching this smock gave me the time and space to recall and share stories of mum’s life, with her and with friends online.
"In June 2021 she went to hospital after she fell and broke her wrist. I assumed she’d be discharged as soon as she’d been treated that evening, but she was admitted at 1am. It was then I realised that this was the crisis point that people talk about, when you recognise that you can’t keep going in the way you have done, when something’s got to give. It was time to look at residential care for my mum. She now lives, quite happily, in a care home close to where we grew up. We take each day as it comes. A day when she smiles at me, when she knows my name, is a good day.
"If my fisherman’s smock project achieves anything, I hope it encourages people to talk more openly about dementia. This affects so many people, so many families, but we’re so reluctant to talk about it. Alzheimer Scotland believes no one should face dementia alone and so do I. If this helps even one person get the support they need, then it’ll have made a real difference."
You can vote for the inspiring Lois here who has been nominated for Creative Fundraiser of the year 2023. Voting closes at midnight on 25 August. Currently, Lois has raised almost £900 for Alzheimer Scotland. If you feel inspired donate to Lois here.