Tommy tells us how he intends to build on his Dementia Carer Voices awareness raising work.
My name is Tommy Whitelaw, and for five years I was a full-time carer for my mother Joan, up until she sadly passed away in September 2012.
At the time my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” What I soon learned as her carer, was that dementia was an unpredictable illness which brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to have suddenly changed again.
I wondered whether the struggles I faced were mine and mine alone, and how other carers who had been through the same journey as I was embarking on, had managed to cope. This was the basis behind my first venture in to the world of awareness raising – the ‘Tommy On Tour’ campaign, which involved collecting life story letters from people across Scotland caring for a loved one with dementia.
The hundreds of letters I received let me know that the challenges I faced were far from unique to my own situation and I have to say meeting and speaking to others in the same situation was one of the most beneficial things I could have done.
An issue that struck me during my journey caring for my Mum was the lack of awareness and understanding of dementia and the way in which we perceive this illness as a wider society. My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.
Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.
This is something I am passionate about promoting as I build on my previous awareness raising work, as Project Engagement lead of the Health and Social Care Alliance’s Dementia Carer Voices Project. A three year project to harness my work and the work the ALLIANCE were involved in around Dementia.
The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia, with a view to raising awareness among health and social care professionals, and wider society of its impact on families and the importance of empowering carers in carrying out this difficult but vital role.
A key focus of my talks is to highlight the impact that inspirational health and social care professionals can make to the journeys of carers across Scotland. People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer if I was propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world.
The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, and continue to do so now.
Make A Difference Campaign 2014
We launched the ‘You Can Make a Difference’ Campaign in February of this year and it has been so inspiring to see it grow. Tommy Whitelaw has given over 100 talks already this year, with 170 scheduled in total, and we wanted to really thank those who have gotten involved and made it all possible. The talks involve Tommy sharing his own personal experiences from caring and the experiences of others who have written to him since he went on tour in 2011, to help people understand some of the issues that carers face, and what we can all do to help overcome these issues.
The campaign has really shown the difference that every single person can make, no matter how small it may seem. This has been through asking people to reflect on carers experiences, and to make a pledge about one key action they could take to really have a positive impact in the lives of others. Some of the pledges have been about a simple change in attitude such as “I pledge to listen with open ears and open heart.” This type of change is one that we can all implement in our own lives, no matter who we are, where we live, or what we do.
Dementia Carer Voices to harness the work of Tommy On Tour
You Can Make A Difference Campaign Tour Dates 2014 – 140 talks
The kindness of people