What lead you to start your awareness work around dementia and carers voices?
In 2007 I came back to Glasgow to visit my mum Joan. At the time it was more for a break for me as I was feeling burnt out, with over 25 years spent working around the world in the music industry. I had noticed changes on previous visits but hadn’t put it down to dementia. She had always kept her house perfectly, and there was always a magical welcome waiting for me when I came home. But it was very different this time.
I stayed for three months, which turned into six months, then nine…it took over a year to get a dementia diagnosis as initially her condition was put down to different things, like depression.
I’m sure my mum had been living with dementia long before I came home, but at the time, my dad had just passed away, and my mum was really sad, so we thought that had a lot to do with it. Looking back, I think my mum was also getting quite fearful and so we couldn’t really have a conversation.
One day I woke up and realised I hadn’t worked for a year and I didn’t know what had hit me. At the time I didn’t know what a carer was or the first thing about being one. I was just looking after my mum and trying to keep up.
So I stumbled into it, and through it. And then people who used to phone my mum didn’t phone her as often, and people who used to pop in for a wee cup of tea stopped. And we became lonelier and more isolated. A point came after a couple of years where it was not only my mum who was struggling; I was falling apart beside her.
In life, you can walk out your front door and experience things in the world. But if you become a carer, the city becomes your world. Because that’s as far as you can go. And then as my mum became poorly, our local community became as far as we could go, and then the house. And, in the last year, it was half of the house, because my mum was so poorly that we pretty much lived upstairs.
Why did you start writing your blog?
During that time, I started to write my Tommy on Tour blog because I wanted to find out if it was just me who wasn’t ‘a very good son or carer’, to be honest.
I wanted to know if other people faced the same struggles as us. On my blog, I made a promise that if I could get a week’s break, I would walk around Scotland, and in June 2011 I did just that, talking to people. I asked people on the walk and on my blog to write and share their stories with me. And they started writing to me in their thousands – from all around the world.
Did you have any idea your blog would be so popular when you started it?
I didn’t think anything would happen when I started the blog. I started writing it because I was just so painfully lonely, to be honest. And my writing’s not very good, but I just wanted to tell somebody what it felt like to wake up in the morning and feel silly or scared or not really know what I was doing. And I always kept my mum and her story at the heart of every post, even the ones where we were finding things very hard.
I wasn’t really able to ask my mum if it was okay for me to speak about her like that, and I still struggle with that. But I hope she’d be proud. She always cared about other people – and in a way she was still teaching me a big lesson about love and life, even in the last stages of dementia. I’m doing this because I don’t want anybody to feel the way that we felt and to try and represent people who write to me and want to tell their stories.
What did you learn from the letters?
I quickly realised that most of the people writing to me were facing a bigger struggle than we were. And importantly, that I wasn’t alone. These letters were – and are – remarkable, and people are remarkable.
They tell stories about the day people met, about how they fell in love, sometimes where they went on their first date. People have even told me where they had their first kiss. They tell me about how incredible their children are. And then dementia comes into it.
The most common word in the letters is love – but in each, loneliness and isolation also appear frequently.
Lots of people start their letters with, “You could change your mum’s name, for my dad, and my name for yours, because it’s so similar” or they will say, “I know you won’t judge me, and I just wanted to tell somebody how I feel” – which is a privilege isn’t it?
Barely a day goes by even now without someone still writing or messaging me, and the more people write to me, the more determined I am to get up and do another talk tomorrow.
What I took away from the letters was that it’s not policies or strategies that change lives, it’s people.
How did you begin doing the talks on your current You Can Make a Difference tour?
My mum passed away in 2012, and at the time the Health and Social Care Alliance was putting a project together about dementia. Dementia Carer Voices was set up as a Scottish government project – and part of it is harnessing the work I started when I was caring for my mum.
In Scotland, we work in partnership with Fiona McQueen, Chief Nursing Officer of Scotland. And in England in partnership with Jane Cummings, Chief Nursing Officer for England. In Scotland, I’m “on tour” doing 794 talks in four years around the UK, and I have done 697 so far – at care homes, hospitals, universities and other places.
We engage with the Scottish Government on policy and practice as an organisation, but my bit is about going out and trying to engage with people.
What’s the main aim of the talks, and what do you say?
It depends on the audience. There are certain things I’ll speak about – an amazing district nurse that came to our house one day and helped us, or the letters, perhaps. But the tour’s called You Can Make a Difference – because, in my experience, it was a person that changed our lives on many occasions.
In any conversation about care, we’re asking health and social care professionals to ask people what matters to them, who matters to them and what kind of information they need. Once you’ve asked someone that and you’ve listened, you have an opportunity to do something.
The first part of the talk is about my mum’s experience of living with dementia, my experience as a son and the letters.
There are certain things I’ll always speak about because they really matter to me. I’ll always talk about love – and that my mum was beautiful and remarkable and that she was sparkling. And that too often people just saw dementia and stopped seeing her.
That’s where person-centred care doesn’t work – if you don’t see the person. I make sure that everybody knows that I am talking about Joan Whitelaw and not dementia.
The second part we call ‘Turning Good Intentions into Purposeful Actions’. How do we do that every day? We all wake up with good intentions – I woke up to be a good carer and a good son every day, but often I wasn’t. It was hard.
To that end, we ask people to make a pledge around dementia care. To-date, 17,874 hospitals, universities, colleges and care homes have pledge trees up, and you can read every single pledge on my blog.
What is next for your awareness work?
Every time I speak, it feels like the first time I’ve ever told somebody how I feel, and that anybody has ever wanted to listen to how I feel. If I ever stand up and it doesn’t feel like that, out of respect for my mum, I’ll never do another talk again.
I will stop one day, but not yet. The thing I’m proud of is we don’t contact people – the tour continues purely because people are asking me to come and talk. If people keep asking, then I’ll keep doing it.
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