One mans mission to raise awareness of dementia.
Son, Carer, Campaigner.
Are you a carer?
Please watch my short film, which includes families and carers reading from the letters they sent me.
If you would like to share your story or make a persoanl pledge to make a difference please email firstname.lastname@example.org
Monday, 20 January 2014
Daily Record and Scotsman Articles - Concert for Caring - letters lifeand love stories
Tommy Whitelaw and his late mother, Joan. Picture: Contributed
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
A MAN who gave up his job working for the world’s biggest bands to look after his mother is staging a star-studded gig to thank other carers.
Tommy Whitelaw, 51, spent 20 years handling merchandise for acts ranging from U2 to Kylie Minogue before caring for his mum Joan for five years until her death from vascular dementia 18 months ago.
He has been campaigning for three years to raise awareness of Scotland’s hidden army of carers.
And on Monday, he will welcome hundreds of them to Glasgow’s Royal Concert Hall for an event featuring acts including Eddi Reader, Hue and Cry and Admiral Fallow.
He explained: “It’s to say thank you to people for their love and their devotion.
“All the artists are giving up their time for free – it’s an amazing gesture.”
Tommy now works with Health and Social Care Alliance Scotland, speaking to carers’ groups, medics, social workers, students and politicians as he campaigns for people with dementia and their families to get the care they need.
He said: “I used to think that I was the only carer in the world and my mum was the only person with dementia.
“But when people started sharing their stories, I realised there were actually 660,000 carers in Scotland and we all had similar hopes, struggles and dreams.”
His mum won’t be far from his thoughts as the curtain goes up.
Tommy added: “This makes me happy as I think she’d be happy about it.
“People ask what it was like travelling the world with bands for 20 years but it’s nothing compared with the people I’ve met in the last five years.
“It’s love and devotion that gets people through it when they’re caring for someone and so I hope they have a wonderful night on Monday.”
The first review of the Concert for caring is in via @mrpinkster
As part of this years Celtic Connections, Glasgow’s Royal Concert Hall played host to a concert for Alliance this evening. Some of Scotland’s finest musicians, both young and a little less young had come out to support a number of charities including Age Scotland, Sense Scotland, Carers Trust, Quarriers and Unity. A celebration of all caring in Scotland, it was all about Letters life and Love.
Host for the evening Cathy McDonald spoke of how humbled she had been whilst reading some of the stories that carers from across Scotland had shared. And although the night was a celebration, bringing together some fine musical talent, it was evident to see just how much the cause meant to everyone. And of course, what would a concert celebrating caring be without carers. In numbers, carers from Ayrshire, Glasgow, Aberdeen, Dundee, Skye, Shetland and Orkney but to name a few places from across Scotland came and made their presence felt. After all, this concert was for them.
The music started with Little Fire. Hailing from Ayrshire, his acoustic melodies were just the ticket to kick start the night. Keep an eye out for his debut album later this year. Such a packed line up meant only time for two or three songs for each act and next up was the hypnotic voice of the mesmerisingly talented Siobhan Wilson. Simply put, her first track The Terrible Woman was acoustic bliss. The guys from Kassidy followed, a sound, which rightly or wrongly reminded me of The Beach Boys meets kings of Leon with John McEnroe on bass. (Check them out, you might see what I mean) Their guitar sound and energetic drumming provided a really good groove. They gave way to Horse MacDonald, who started by sharing a story about caring that was very close to her heart. She told of the gift she had given to her own mother when she was dying… then duly shred the song “Carefully” with the audience. A very emotional rendition reminded everyone just why they were there. Scottish favourites Hue and Cry then took to the stage and closed the first half of the evening performing Labour of love, Violently and the song they encouraged us all to make the opening song of the 2014 Commonwealth Games… Mother Glasgow. Following the interval, Joe Nisbet Jr kicked things off with a few songs from his new album that took 4 days to record but he reckoned had been 30 years in the making. His blend of easy bluesy sound and sing along toe tapping had everyone back into the swing of things. Next, Emma Pollack performed three numbers with the Cairn string Quartet including Don’t make me wait. Tommy Reilly started off by fooling the light technicians by taking his seat at the piano for his opener, Out There Somewhere. Just Woken up on acoustic guitar was next. A super cool sound from a super cool guy. Admiral Fallow then shared a couple of songs about friends, family, self evaluation – real life really, including Beatle in the Box. And so Eddi Reader took to the stage, donning apparel we have come to know and associate with her so well. As had many before her on this beautiful evening she shared a few stories of caring, of ownership and of the love that makes the Scots such magnificent people. She closed with a fantastic rendition of Mona Lisa, delivered in the true style of that cigarette yielding Scottish Auntie that everyone knows and loves so well. Finally, the whole gang of artist were then reunited on stage for one last song. And, as if anyone needed any reminding what the evening was all about, the closing number summed it all up perfectly. Lean on Me! And who better than Tommy Whitlelaw, the man who organised the evenings event, to give the closing words. Asked to be introduced simply as carer and son, Tommy told the audience his mothers life had been a love story. And that the night had felt like a love story too. I doubt anyone in the audience would disagree!