July 2, 2015
by Linda White
My name is Tommy Whitelaw, and for five years I was a full-time carer for my mum 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.
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 through the project 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 many 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.
Dementia Carer Voices pledge background
Dementia Carer Voices has now gathered over 4500 personal pledges as part of the “You Can Make a Difference” campaign. The campaign encourages people to listen to the experiences of people who have cared for a loved one with dementia and to think how they can make a positive difference in people’s lives. The team are delighted to have gotten such a strong response, and would like to take this opportunity to reflect on our journey up until now and how we have gotten to this point.
A fundamental aspect of the campaign has been about involvement. Throughout the UK tour, we have engaged with many thousands of health and social care professionals, students, MSPs and members of the public, and have noticed a distinct increase in the number of pledges we have received when people are encouraged and supported to do so by colleagues and friends. We would therefore like to ask you to share this campaign, to encourage people you know to get involved and make a pledge to make a difference in the lives of people who have dementia, their families and carers. Through our own dedicated blog site, twitter account and website, the campaign is easily shared, and links people to a range of information.
Pledges can be submitted via email, twitter @DementiaCarerVo or on the blog site, and are also collected at every talk. We would very much appreciate it if you would promote this campaign; the talks and our films and encourage people to reflect on what they can do and how they can make a difference.
Video: Dementia Carer Voices
Dementia Carer Voices took the Make a Difference campaign to the Scottish Parliament in October 2014. View the pledges from First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland.
NHS Ayrshire & Arran and the University of West Scotland (UWS) were key partners in the ‘#make a difference’ pledges and dementia awareness campaign. This video includes interviews with First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland, Fiona McQueen (Executive Nurse Director NHS Scotland), Professor Paul Martin (Deputy Principal UWS), Derek T Barron (Associate Nurse Director – Lead Nurse North Ayrshire Health and Social Care Partnership), Janice McAlister (Alzheimer Scotland Dementia Nurse Consultant), Lynn McLaughlin (Senior Charge Nurse).
View the May/June 2015 Dementia Carer Voices Newsletter. Subscribe to the newsletter mailing list.
Contact Tommy at: Tommy.Whitelaw@alliance-scotland.org.uk