Tommy Whitelaw and his mission to collect life stories of dementia carers

“I think everybody in this country should be allowed to live their life as close to a love story and as far away from a tragedy as possible.”

Those were the words of Tommy Whitelaw when he spoke at the Alzheimer’s Show on 19 April about his campaign to raise awareness of people who care for family members with dementia.

He has asked other dementia carers in Scotland to write to him and share their experiences. Mr Whitelaw has so far received more than 500 letters and many other stories via social media sites, through email and by meeting people in person. The letters will be used as the basis of a report, which will be turned into a book and will provide help and support for other carers.

Mr Whitelaw cared for his “loving, magnificent mum” Joan, who had vascular dementia, from August 2007, until she passed away in September last year.

He first discovered his mother’s illness when he went back to Scotland to visit her following the break-up of a relationship with his former girlfriend, who he had been living with in London.

Mr Whitelaw said: “I went back to visit my mum and what I walked home to was in my eyes and my heart was the beginning of a broken heart and tragedy.

“For the first time in my life I had to put my arms around my mum and try to make it better for her.

“Dementia was doing everything in its power to affect my mum’s greatness, her awareness.”

He immediately gave up his successful music career, moved in with his mother and became her full-time carer.

He described reaching a “crisis point” after two years of caring for her and visiting a community psychiatrist as a result.

Mr Whitelaw said: “I asked for help and they handed me a post-it sticker with an 0800 number and told me to phone. If they couldn’t see how lost we were then no one was going to help us and we cried all the way home on the bus.”

In the five years he cared for his mother, he only had one week’s respite and during his week off he travelled around Scotland collecting letters from other people who were in similar situations.

Speaking about his decision to collect letters, Mr Whitelaw said: “My only promise was if they did that, I would take them to the Scottish parliament and show them.”

He decided to ask people to share their experience in the form of letters because a letter he received from his former girlfriend when their relationship ended made him see things differently.

Mr Whitelaw is now a dedicated campaigner, who travels around the country collecting letters and stories from others who have or are caring for somebody with dementia as part of his Tommy on Tour initiative. He has taken the stories he has received to the Scottish government, the NHS and other organisations in an attempt to raise awareness of dementia and change policy.

The letters he collects are helping him paint a picture of what life is like for people who are caring for a family member with dementia and he travels the country sharing those stories with others to raise awareness.

During his talk, Mr Whitelaw read one of the thousands of letters he has received of the last year where the writer claims none of her “family seem to understand, none of my friends seem to understand”.

Mr Whitelaw has now teamed up with Health and Social Care ALLIANCE Scotland, an independent charity funded by the Scottish Government, to run the Dementia Carers Voices initiative.

The aim of the project is to give a voice to carers, increase awareness of carer rights, capture the experience of family carers and to reduce the isolation of people caring for someone with dementia.

Mr Whitelaw also travels around Scotland giving talks about his experience and his campaign. Recently he has been guest speaker at Victoria Infirmary, City of Glasgow College and Gartnavel Royal Hospital.

For more information about Dementia Carers Voices, visit www.alliance-scotland.org.uk.

If you care for someone with dementia and would like to write a letter, email tommy@i-woz-there.com or visit his blog at tommy-on-tour-2011.blogspot.com.