David Grayson CBE on Being a Working Carer

DSC04401David Grayson CBE is a Professor of Corporate Responsibility at Cranfield School of Management and is Chair of Carers UK. In this guest post, he draws upon his caring experience and explains why employers should now consider the needs of working carers.

James Ashwell was a 25 year-old strategy consultant with the global consulting firm Accenture when he received a phone call at work informing him that his dad, just 64, had died suddenly a few hours previously. He put on his jacket, walked out the office and never returned. James quickly discovered that for the previous three years, his parents had hidden from their children, mum’s diagnosis with a form of early onset dementia.

James and his brother moved back home to Birmingham, and promised their mother she wouldn’t have to go through it alone. Keeping this promise, as his mum declined steadily over the next five years, is the hardest thing James has ever done:

I was a gung-ho 25 year old and didn’t have a clue what caring for a mum with dementia might entail. 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. 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 5 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? 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 3 am, 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. 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.

Mum and I worked together on a bucket list and did everything on it. Including going to Venice where Mum did horse-riding for the very first time. 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 milk shakes (even if she did insist on walking through the drive thru!) brought Mum pleasure too, as did jigsaws, jewellery-making, drawing and colour- ing books — although we all fervently wished we could find some that weren’t designed for children.

Mum declined steadily during the five years I was caring for her, gradually losing the ability to do most things for herself. But there were four siblings, and together we were fortunate enough to be able to pay for extra support from professional careworkers 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. Community helped me — meeting other carers and realising I was not alone.

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. This may not be possible for everyone, she had only one hospital admission. Looking back, I realised how lucky I was to have had a mum who gave everything for her children. That’s why I wanted to give something back. I recognised how much I’d learned from other carers of people with dementia, as we shared our efforts not only to cope with the practical aspects of the condition but to seize every opportunity to connect, however fleetingly, with our loved ones as we knew them.

So many aspects of James’s story resonated with me, from my own experience looking after my mum – albeit that she was much older. Bursting into tears in front of the doctor at the Memory Clinic. Discovering the pleasure of visits to garden centres. Finding colouring books for adults — the precision of my mum’s artwork as a primary school teacher of forty years, remained formidable to the end. The slow decline in ability to do things for herself. The sense of the good death at home. The sense of mums who gave everything for their children. The fierce determination to find some appropriate way to repay just a fraction of mum’s love.

David Grayson with his mum Patricia
(David Grayson with his mum, Patricia Grayson. Photo credit: Michael Holt)

In James Ashwell’s case, this was to found a successful business called Unforgettable, in 2015, bringing together specialised products, practical advice and a supportive community to help those affected by memory loss and dementia. James had wanted to start his own business since he was a kid. Today he is pursuing his twin passions: to run his own sustainable business and to improve the quality of life for those living with dementia and their carers. Unforgettable has attracted investments from some of the heavy weights of impact investing such as Bridges Ventures and IVUK (Impact Venture UK). James describes Unforgettable as ‘a beautiful business’ — the Unforgettable Foundation has a golden share ensuring the protection of the business’s social mission both now and in the future; and the Unforgettable constitution — the memorandum and articles of association — set out the history and philosophy of the business. Unforgettable has already become one of the first of 2,000 pioneer B-Corps across the world. B-Corps have an explicit societal purpose and have to meet stretching social, environmental and economic impact criteria. To achieve B-Corps status, candidate businesses must score at least 80 points on the B-Corps certification process. Unforgettable scored 112 but when I met James, he was already looking to improve on that score when Unforgettable is reaccredited. James is a great example of a “sustainable entrepreneur.”

In my case, I have drawn on my own experience as a working carer for a number of years, as well as my voluntary work as chairman of the charity Carers UK and my day job at Cranfield School of Management as professor of Corporate Responsibility, to write a new book called Take Care: How to be a great employer for working carers. The book is part manifesto, part call-to-arms and part practical how-to guide. In the UK, 1 in 9 of the working population will be juggling their job and caring for a loved one: a parent or other elderly relative; a partner with a long-term condition or maybe a disabled son, daughter or sibling. In the USA, the figure is 1:6. In Israel it is 1:4.

In my book, I also recognise many working carers will be working for themselves – or will become freelancers in order to combine work and caring. I have a specific chapter on freelancers who are also carers.

As populations age around the world and government welfare budgets get squeezed, more of us will become carers at some points in our lives. Some of us will be multiple carers. Good employers of all sizes will see the business as well as the moral case for looking after their employees who are also caring.

About the Author

David Grayson was born and grew up near Sheffield, in the North of England. He is an international campaigner for responsible business and a social entrepreneur, and is the co-founder of Project North East, now PNE Group. In 2007, he was appointed to run the new Doughty Centre for Corporate Responsibility at the Cranfield School of Management in the UK and since 2013 he has chaired the UK’s only national membership charity for carers, Carers UK. All royalties from his book go directly to Carers UK. He lives in central London.

Twitter: @DavidGrayson_

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