Dementia and caring brings many struggles and of course moments of joy, love and inspiration. My mum inspired me many times and amazingly at the most crucial moments when I was really struggling to cope and understand. That kind of sums it up, there is my wee mum facing all that dementia brought and over the last months nearing end of life, but always able to comfort her son and get him through it.
As a campaigner I am trying to raise awareness, understanding and empower people to help prevent families reaching crisis situations. All too often on our journey we were lost, lonely and isolated but looking back my heart can sometime smile and this is thanks to the kindness of the special people we dealt with.
Like the District Nurse who put her arm around me one day when I was in tears and said “You’re doing ok Tom you’re doing ok.” I can’t tell you how much I needed someone to do that as I was scared of what was happening and scared of letting my mum down.
Or the nurse (speech & language therapist ) who was involved in the last months of my mums life when she could no longer swallow and had been in hospital for a few days. On her returning home I was struggling to get my mum to eat or take fluids and the nurse said call me if you have any problems, so I did and she took the time to pass by after work to sit down to show me again what to do, holding mum’s hand and putting us both at ease.
There is an important lesson here, it’s people who change lives through their help, kindness and understanding and it is important to celebrate this so that others can take notice and follow. A big part of my talks is celebrating the people who made our experience better, even if was just for a day. Then there are the amazing carers and families who I have met out and about or online on Twitter or Facebook who have shared their life stories and are the inspiration behind my campaign.
Over and above policies, strategies or reports it’s people who have the potential to transform people’s lives throughout what can be a very difficult and lonely journey. I still smile to think of the special people who helped me and the thousands out there helping others in the same manner, most of whom I have never met.
Tommy on Tour
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 had 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.