Tommy Whitelaw gave up working with some of the world’s top bands to look after his ill mother. Now he’s helping to say a musical thank you to all of Scotland’s carers, discovers Susan Mansfield
SOMETIMES, life throws you a curve ball which changes everything. That happened with Tommy Whitelaw, a music-industry merchandiser who worked with some of the world’s biggest bands, came back to Glasgow in 2007 to visit his mother, Joan. A short visit turned into a life change as he stayed on to care for his mother through her journey with vascular dementia.
Whitelaw, who had toured the world with artists such as U2, Elton John, Kylie and McFly, swapped the rock’n’roll life for a spare room in his mother’s house. He lived with his mother as a full-time carer for nearly six years until Joan died in 2012. He is now a full-time advocate for carers working with Health & Social Care Alliance Scotland, but a chance meeting with an old contact from the music business inspired plans for a unique concert on Celtic Connections’ biggest stage.
Admiral Fallow, Eddi Reader, Emma Pollock, Horse McDonald, Hue & Cry and Little Fire are among the artists signed up to take part in Letters, Life and Love Stories – A Celebration of Caring at Glasgow Royal Concert Hall on 20 January. While tickets are on sale to the public, a quantity have been put aside for carers, professionals and volunteers, who will be nominated to attend the event as guests.
“It’s really to say thank you for caring,” says Whitelaw, who has organised the concert along with Mark Mackie from Regular Music and Celtic Connections director Donald Shaw. “To say thank you to carers for caring for their loved ones, and thank you to nurses and other health professionals for caring for us when we need support. We’re going to celebrate the organisations that help carers, and celebrate the carers themselves, give them a good time.”
Many full-time carers don’t have a lot of chances for an evening out. When Whitelaw was looking after Joan, he rarely went out in the evenings, fearing that she would be unable to cope alone, and quickly lost touch with his “old life” in music. “I only went out nine times in the evenings in the years I was caring for my mum. My previous life was forgotten to me, my passion was for caring. My mum was my best pal, and I stopped working because I wanted to care for her, but it was a completely different world.”
As Joan lost her memory, music formed an important bond between them. “My mum couldn’t speak for the last months of her life because she’d lost her vocabulary, but when I sang to her she would sing the last words of the song. My dad used to sing Perry Como songs to her at parties, and although she couldn’t remember my dad, the man she loved for 40 years, she would remember the song. My mum didn’t know who I was, she didn’t know who she was, but in the morning if I sang to her, her eyes would light up. That brought me great joy. It was amazing just to hear her voice.”
As a full-time carer, Whitelaw often felt lonely and isolated, and found accessing services difficult. “At one point, we reached a crisis when I didn’t think I could go on any more. Nobody was showing me how to care for my mum. I went to a local health organisation and asked for help and I was told to go home and phone an 0800 number. I was standing there, crying, holding my mum’s hands, asking someone to help us, and they gave me a post-it sticker with a phone number on it. It felt like nobody was helping us.”
These frustrations inspired him to launch his own blog and invite other carers to write to him about their experiences. He received hundreds of letters. Joan stayed in a nursing home for a week while Whitelaw launched Tommy on Tour, a journey across Scotland, mostly on foot, to share experiences with other carers, and to present their letters to MSPs at the Scottish Parliament. The project continues as Dementia Caring Voices, under the umbrella of the Alliance, and some of the stories he has collected will feature in A Celebration of Caring.
“A lot of people told me they felt lonely and isolated, but all the letters have the word ‘love’ in them. They might be having a difficult time, but the reason they send the letter is because they love that person. I hope the concert engages with people, lets them know they’re not alone. There’s no cure for vascular dementia, but we can cure isolation and loneliness.”
Stories are crucial, he argues. Support for carers would be better if it could be more person-centred, taking into account the individual and their life story. “We often talk about carers and caring in terms of money [unpaid carers save the Scottish economy an estimated £10.3billion per annum]. We rarely talk about the fact it’s somebody’s husband or wife, or their mum or brother or sister. I think they have to take into account who we are, who we’d like to be and who we were. If you take those into account we’ll be able to support people better.
“All too often we judge people by a diagnosis or a condition. For 68 years my mum was the most hard-working, kind, amazing woman – I was lucky to have such a mum. Then she got diagnosed with dementia and in people’s eyes she stopped being Joan Whitelaw, she just became someone with dementia.”
• Letters, Life and Love Stories – A Celebration of Caring in Scotland, Glasgow Royal Concert Hall, 20 January 20. www.celticconnections com