The caring side of Celtic Connections
GERARD GOUGH
January 2014
WORKING as a merchandiser and roadie for some of the biggest names in the music world such as U2, Kylie Minogue and The Spice Girls has no doubt left Tommy Whitelaw with some amazing stories from his time on tour. However it’s a very different tour and remarkable set of stories that are acting as the catalyst for his current work.
For several years now, Tommy has been a campaigner for those who live with the effects of dementia—specifically careers—and currently runs his own project in partnership with the Health and Social Care Alliance Scotland (ALLIANCE), known as Dementia Carer Voices.
Personal experience
The campaign and project came about as a result of the difficulties Tommy first faced when he came home to care for his late mother Joan (right with Tommy).
In 2007, after two decades of touring around the world, Tommy had been experiencing a sense of burnout and a general feeling of exhaustion. To remedy that he decided a trip home would do him the world of good, but the world he returned to, was very different from the one he left.
“I came back up to Glasgow to visit my mum and everything had changed,” Tommy said. “I knew from a distance that something had changed but I just thought she was getting older. I had taken two or three months off from touring—for me really. I was a bit exhausted. I was taking that time off to get a bit of a break. Those three months became six months, then a year. I wanted to try and look after my mum, she couldn’t be left alone, she was struggling and confused. After the end of the first year I made a conscious decision to care for my mum.”
However, having made that decision he—like many people who care for a loved one—felt scared and alone, with nobody to turn to for help.
“The first year was a bit of a fog for the two of us,” Tommy explained. “After the third year we were really falling apart, dementia was affecting my mum’s abilities and awareness. We were just desperately lonely and lost. I went out and tried to get help and I wasn’t treated very well. I was in tears one day asking someone to help me at a social work desk. They gave me a post it note, told me to phone a 0800 number and sent me on my way. I was standing crying, as a 47-year-old man, holding my mum’s hand. I thought that was dreadful because we were in an awful situation. I panicked because I thought that at the end of this I was going to have a breakdown and my mum was going to be put into care. I wanted to know that if my mum was to be put into residential care it was because it was best for her, because of a decision we’d made, not because I’d fallen apart.
“We were desperately lonely. I thought I was the only carer and she was the only person with dementia at the beginning because we were prisoners in our own home.”
Caring people
But Tommy was not alone, and indeed, this initial feeling of isolation and helplessness triggered his campaign. He originally planned to do a carer’s tour, taking him around venues he had previously worked at and speak to people who were encountering similar situations to his own along the way.
“My idea was that I was going to do a walk around all the music venues I’d done concerts in like the Aberdeen Exhibition Centre, Hampden, Ibrox, the SECC and so on,” Tommy said. “I was going to do a carer’s version of a tour and walk it as opposed to being on a tourbus. I called it Tommy On Tour, to show you how your life can change in a moment. Amazingly because I got a bit of publicity, people got in touch and I’d go to see them at their houses, drop-in centres, churches. People would get in touch and ask me to come and speak with them and the people I met were amazing.”
Simultaneously, he began to write a blog also called Tommy On Tour about his experiences caring for his mum and invited people who were in a similar situation to share their own experiences with him. The response was almost overwhelming.
“I said that if people shared their life stories with me, I’d take them to people I thought who should read them be it government, local authorities or the NHS,” Tommy said. “I wanted to capture life stories and I learned more from those letters than from anything else. People have written to me in their hundreds and shared their experiences good or bad. They have written to me in great depth. I get to learn how husbands met their wives, for example—love and life stories. Then dementia comes and it all changes. But by reading these stories we can find a better way to support people and a better way to encourage and include people. These letters helped me become a better son and a better carer. I’m grateful to everyone who has ever sent me a letter, as I believe that they are helping other people.”
Continuing the campaign
Although Tommy’s mum sadly passed away in September 2012, he has continued his campaign which sees him giving talks about the subject of dementia care throughout the country—he gave 80 such talks last year—and his Dementia Carer Voices project works with the government as a strategic critical partner, which has seen him meet with Deputy First Minister—and former Cabinet Secretary for Health and Wellbeing—Nicola Sturgeon on a regular basis. However it’s his blog—which along with videos in support of dementia carers has had over 250,000 views to date—that he still relies upon the most, giving and others the chance to share their experiences without judgement.
“The blog has been one of my greatest helps,” Tommy said. “I’d write it every night before my mum went to sleep. I felt like I was telling someone my feelings by writing it. It helped me to share my fears and my struggles. We should all be able to tell someone how we feel. The blog was therapeutic even in the toughest times. It felt like I was exhaling. I think it’s missing from our communities, the aspect of sharing.”
Concert
These shared experiences, coupled with Tommy’s own background in the music industry gave him the idea of organising a concert to celebrate the work of the 660,000 carers throughout the country. That idea is now a reality, thanks to music promoter Mark Mackie, Donald Shaw, festival director of Celtic Connections, and performers such as Hue and Cry, Little Fire and Eddi Reader, who spoke to The Irish Voice of her own personal experience of dementia care and her delight at being involved in the concert.
“My Auntie Mollie in Dublin began to show signs of dementia in her 85th year,” Eddi explained. “She has gone from a feisty, independent woman, to an agitated, dependent and silent one in a matter of four years. The staff at the nursing home are invaluable to us, God bless them.
“We also have just discovered that Auntie Mollie was 10 years older than what she claimed to be, her whole adult life. She’ll be 98 on July 4. She was born in the same year as the Easter Rising in Ireland and on the day that commemorates American independence.
“I’m glad to sing for awareness of this condition and the nurses who help us all deal with it. It can strike anyone of us. We are all blessed when someone chooses to care for dementia victims.”
However, as Tommy explained, the concert is intended to celebrate the work of all of Scotland’s fantastic carers and he provided an insight into how an act of kindness helped bring the event about.
“The premise of the concert is to celebrate these carers,” Tommy said. “I had bumped into Mark Mackie of Regular Music and I said I’d love to do something. Amazingly in the blink of an eye he offered us a Celtic Connections event. It’s a remarkable, kind gesture from them, which fits into the kindness I’ve encountered from people.
“What they’re doing is putting a show called Letters, Life and Love Stories: A Celebration of Caring in Scotland and allowing me to invite people to a pre-concert reception, which the Deputy First Minister will speak at. I’ve given an allocation of tickets to the likes of the NHS, Alzheimers Scotland, Carers Scotland, Age Scotland and they’ll do their own thing and invite 10 or 20 people to the pre-concert reception. That’s the idea is to try and bring these people together, share their stories and we want to thank them in words and music.
“It’s all about love. Every letter that I’ve received has received the word ‘love’ in it. You know that the person who wrote it did so because they really love someone and are struggling. In every letter the words ‘isolation’ and ‘loneliness’ appear too. We can’t cure dementia but we can fix loneliness and isolation. As I said before, this event is to celebrate carers. On TV they are spoken about in monetary terms, for example ‘carers save governments £10 billion,’ but they don’t speak about the husband, wife, son or daughter. They forget about the people sometimes. My mum went from being Joan Whitelaw to a woman with dementia, which is terrible after having been Joan Whitelaw for 60 years.
“All the artists are giving up their time and I’m going to ask them to read out some of the letters and put a wee show on to say thank you to people for being so brilliant, amazing and kind.”
Celtic Connections has always been a great showcase festival for musicians and performers, but this year, thanks to people like Tommy Whitelaw, it will now showcase some of the kindness, care and generosity that exists, but is often unseen from the carers in our midst.
To read Tommy’s blog visit http://tommy-on-tour-2011.blogspot.co.uk. You can also follow him on Twitter @tommyNtour
http://www.celticconnections.com
http://www.alliance-scotland.org.uk
gerard@theirishvoice.com
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