Sunday, 4 August 2019

My Name is Tommy,I cared for my wonderful mum Joan

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

The Dementia Carer Voices team would like to say a huge thank you to everyone who has made a pledge, and everyone we have met along the way so far on our You Can Make a Difference campaign. We are absolutely delighted to have now received more than  19,000 pledges!






This is a wonderful milestone to reach and would not be possible without the commitment and passion of everyone who attends our talks, reads about our campaign and pledges to make a difference to the lives of people with dementia and their carers. We have reached over 130,000 people across more than 700 talks and have met so many remarkable people so far.


These more than 19,000 pledges are from a personal perspective so each of them is unique and from the heart. More than 19,000 people have stopped and reflected on what they can do in their lives to make a difference. And no matter what your role, everyone has the potential to transform the lives and experiences of people with dementia and their carers, often in seemingly small ways.


We are really proud to be able to work with the Chief Nursing Officer for Scotland Professor Fiona McQueen and the Chief Nursing Officer for England Professor Jane Cummings you away from our website), sharing key messages from both and feeding back on the aims and outcomes of the people we have met.


You can read all of the pledges we have received so far on our website, as well as our pledge case studies, most recent publication and 5 Steps to Change resource.

The campaign will continue throughout the year. If you have been inspired to make a pledge yourself, you can email us at dementiacarervoices@alliance-scotland.org.uk We’d love to hear how you plan to make a difference!

Commenting on this huge milestone, our UK Lead Tommy Whitelaw said that

‘it has been a remarkable experience meeting so many inspirational people who do so many incredible things. We are inspired by the pledges and how people have been turning their good intentions into purposeful action.”

ALLIANCE Director Irene Oldfather added that

“these 19,000 pledges demonstrate Dementia Carer Voice’s ability to create a social movement for change by raising knowledge, understanding and awareness of living with dementia whilst promoting person-centred rights-based care to enhance the lives of people living with dementia.”
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.
Resources
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).
Newsletter
View the May/June 2015 Dementia Carer Voices Newsletter.  Subscribe to the newslettermailing list.





Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

1 comment:

  1. My grandmother also has dementia and I realises I have been lazy in finding out about the illness. She doesn't live in the UK so I have just got on with my life and daily life takes over and I still haven't done anything to help her or take an interest. I do realise even if I daydream about helping her, it's not the same as doing sonething. Your blog is very inspirational. Wishing you every success in your advocacy work. Natasha, London

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My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

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