2016 is a big year both personally and for our Dementia Carer Voices Project. This will be my 5th anniversary campaigning, starting from my house when caring for my beautiful Mum, Joan, who had Vascular Dementia and sadly passed away September 2012.
This will also be the 5th anniversary of my. Friendship and collaboration with ALLIANCE Director and my Mentor Irene Oldfather who's passion I Share to make a difference
.
I started campaigning whilst caring for my mum, Joan, back in 2011 and this has continued with my new role as Project Engagement Lead at Dementia Carer Voices at the ALLIANCE Scotland, a three year Scottish Government funded project (in part to harness the work I started whilst caring for my mum)
The photo below was taken for the campaign launch January 31st 2011
At the time my Mum was diagnosed with Vascular Dementia, I thought
to myself “it’ll be okay, we’ll get through this.” What I soon learned as her
carer, 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. An issue that struck me during my journey of
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 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. I felt passionately that no one should have to face
the confusion, loneliness and isolation that we felt. On 6th June 2011 I
began my walk to collect life story letters detailing the experiences of
individuals caring for a loved one living with dementia.
Since then, we have engaged with thousands of carers through my ‘Tommy on Tour’ blog and now as Project Engagement Lead with the Dementia Carer Voices Project at the Health and Social Care Alliance taking the life and
love stories of carers who have written to us, carers we have met in person,
spoken to on the phone, heard from through email or through our online survey. As a team we have
shared these with health and social care professionals, students, MSPs and
members of the public, to raise awareness of the impact of dementia on families
and the importance of empowering carers in carrying out their difficult but
vital role.
Our 'Make A Difference’ Campaign and Tour started
back in 2014 with 187 talks and continued over 2015 with 205 more, reaching
42,000 people in person at the talks. This has led to 7,500 people,
Hospitals, Universities, Colleges, and Organisations pledging to make a
difference for people living with dementia, families and their carers.
Many journeys have been made along the way by
train, bus, and on foot. There have been early starts and late nights, but
every single journey has been worth it, the many days and nights traveling home
with a smile in my heart, thankful for the people I have met, the care I have
witnessed, the desire and commitment to make a difference every day for others.
There are too many to mention in person and all the
great initiatives I’ve seen along the way, but the thing that stands out
is people, over and above polices and strategies. It is people who
change lives. I am lucky to work with amazing people, Irene, Ian, Laura,
Ashleigh and all the team at the ALLIANCE, and feel so lucky to work with them
and to have met so many people over the years.
Thank you for all you do to make a difference for
others and thank you for making a difference to my life.
tommy
A special thanks to First Minster Nicola Sturgeon for meeting my mum and holding mums hand 4 weeks before my mum sadly passed away
Every time I read your words I have tears in my eyes, it takes me back to caring for my own parents, you are amazing Tommy, I still hope to persuade somebody to invite you to @sfhft, as we spoke about in Derby when we met along with @emmaaap, I ll keep trying just as you keep on with your incredible journey . Alex @missfrilly xx
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