Guest blog: My mum, dementia and me

Tommy and his mum, Joan

Today’s blog is from Tommy Whitelaw, who cared for his mum Joan for five years until she sadly passed away in September 2012. Tommy will be speaking about his experiences at Age UK’s Annual Conference on 18th November 2015- you register to attend the conference here.

When my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” I soon learnt as her carer that dementia is an unpredictable illness. Her illness 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 had suddenly changed again.

I wondered whether the struggles I faced were mine, and mine alone. I questioned how other carers who had been on the journey I was just embarking on, had managed to cope.

What struck me throughout was the lack of awareness about and understanding of dementia, and the unhelpful way we perceive the illness in 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.

This realisation led to my first venture into the world of awareness-raising, through my ‘Tommy On Tour’ campaign. The campaign involved collecting life stories from people across Scotland who were caring for a loved one with dementia. The hundreds of letters I received proved that the challenges I was facing were far from particular to me, and yet that everyone affected by dementia has a unique story to tell. By sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.

Dementia Carer Voices Project

Improving people’s understanding is something I continue to be passionate about. I’m now building on my work with ‘Tommy on Tour’, 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. Through this, it aims to raise awareness among health and social care professionals and wider society, about the impacts dementia has on families and the importance of empowering carers as they carry out this difficult but vital role. I give regular talks as part of my project work, the key focus of which 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, as they continue to do so now.

To book your place at Age UK’s annual For Later Life conference head to www.ageuk.org.uk/forlaterlife.

For advice and support on caring for a loved one, visit our dedicated website pagesIf you have a caring story you want to share, email the Campaigns team at campaigns@ageuk.org.uk to get in touch. You can also find more about Tommy’s work on his blog.

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