Well I certainly am coming across some amazing people through this rather intensive blogging experience. I originally set out to post a different “in my shoes” story every day during Dementia Awareness Week, but I have had such a great response and come across such inspirational people that it has all snowballed a bit…
The series would not be complete without including a piece about “Tommy Whitelaw, a.k.a “Tommy on Tour”. I was hoping that Tommy would be able to write up his story himself for Carers’ Week but he is very busy looking after his ‘wee Mum’, Joan. The detail of their dementia journey can be found in Tommy’s own blog, and I would highly recommend that you read it. For anyone interested in dementia care, it is a “must read”!
Tommy used to have a hectic career of his own in the music industry, running global merchandising operations for the Spice Girls, McFly, Kylie and U2 and accompanying them on luxurious international tours. A few years ago he gave all this up to become a full-time carer for his Mum who has vascular dementia. He says:
“I believe the problem starts with the way people with dementia are looked upon from the day of diagnosis: almost written off and looked upon as a strain on society.”
They struggled; they felt isolated. Proud of his roots as a Scotsman, Tommy began to wonder just what he was so proud of; he actually felt pretty alone and unsupported, as he and his Mum tried to cope on limited welfare benefits. Although he had chosen to do this, he started to realise just how lonely caring for someone with dementia could be…
Tommy started a one-man mission to raise awareness. For the last year, he has had an amazing journey and some fantastic success, gathering stories from wonderful carers across Scotland, restoring his faith in his native countryfolk. I will leave you to dip into his blog yourself but this is a taste of what he has been up to…
Tommy started a year ago walking round Scotland (Tommy on Tour) and gathering real “life stories” from carers. People were encouraged to write letters, telling it “as it is” – good and bad, very similar to my Whose Shoes? approach.
Some of the stories, inevitably, are very moving; there is a strong picture of people coping alone, feeling powerless and unsupported in the face of dementia – a devastating change in a loved-one that they do not fully understand.
Quite early on, Tommy made a video. He wanted people to understand just how many people in Scotland are affected by dementia. I love his creative approach. Instead of doing a Powerpoint with graphs and charts, he visited football stadiums and made a video…
Just HOW big would the stadium need to be before it would accommodate the 82,000 people affected….?
Tommy presented the letters and the video to the “powers that be” at the Scottish Parliament and basically anyone else who would listen – or, more accurately, people who Tommy felt should listen. His compelling approach and powerful arguments would be very hard to ignore!
Tommy gets out and about and meets people, whether on the streets of his native Scotland, through Carers’ forums and action groups or by knocking on the doors of decision makers and presenting them with the weight of evidence of what needs to change.
Tommy’s blog records his journey, inter-twining his out-going, campaigning persona, often being featured on TV and radio, with the gentle man who returns home and his huge sadness in witnessing the steady decline of his much-loved mother. I last spoke to him in early June and you could hear the strain in his voice, worried not to be too long on the phone in order not to neglect his Mum.
I was very sad to read his blogpost of 16 June explaining how he had to dismantle his Mum’s bed at home to install a hospital bed and how this felt:
“As I dismantled my mum’s bed this morning I struggled through a flood of tears as all I could think about was how DEMENTIA has, and is doing its best to dismantle everything we are and have. But it has no ability to dismantle the memory I have and hold or the love and respect I have for my amazing wee mum. Dementia might have erased my mum’s memory and may try to attack her dignity, but it can’t take away the memories of all the people who have met her and love her”
Tommy has some ambitious plans for the next twelve months, constantly seeking to spread the word and raise awareness about dementia. But I’ll leave him to tell you about all of that himself…!