Last week, I had the huge privilege of attending the ‘Concert for Caring – a celebration of carers and caring’ in Glasgow. I must admit Mr #WhoseShoes raised his eyebrows when I announced that I was going over 300 miles north … for one evening.
I didn’t know quite what to expect but knew that, with 1300 carers in the audience, this celebration was going to be very special and indeed emotional. It would also be a chance to meet Tommy Whitelaw, the man who has campaigned tirelessly to share the story of isolation and loneliness, as he cared for and sought support for his beloved late mother Joan, who was living with dementia. I have followed his progress, collecting carers’ stories and sharing them with Scottish Government – making a difference. I could only imagine how he must feel seeing this huge vibrant audience united in celebrating care.
I looked around the audience and wondered what their stories were. What had brought each of them here? How many were still caring for loved ones and no doubt had had to make really special arrangements to be there at all? This is always a very tricky tension, and one that Tommy would be the first person to acknowledge; the irony that in arranging any event for carers, the most isolated and most lonely carers are frequently unable to attend. They cannot leave those they care for and get the chance to do something special: a much needed bit of ‘me’ time to re-charge batteries running permanently on empty.
My own thoughts and feelings inevitably focused on my parents-in-law who, over a period of thirteen years, both died of dementia. And indeed my own dear Dad where, with Dad thankfully keeping his very sharp mind, we rode the roller coaster of eight heart attacks. Very different stories but all very personal and difficult in their own particular ways. I thought of the many happy times too, one of them captured in a little audioboo that I made for the Department of Health.
As the music of the concert played, I thought of Betty, my Mum-in-law, gradually coming out of her shell as I gently encouraged her to try new things after she became a widow, until she gained the nickname Betty Boogie. With hindsight, I think the early stages of dementia gave her permission to let go of some society-ingrained inhibitions. She and Howard had always loved Abba and I remembered her doing the Super Trooper actions with me, standing at an Abba Tribute Band concert at the Civic Hall in Bedworth. I thought of “I believe in angels” playing at both of their funerals. In my experience, it is always the details that trigger the most powerful and personal response.
I thought about all the different ‘in my shoes’ blogs in this series and the wealth of stories that people have kindly shared. I thought about how I have met and connected with all the contributors including, at a very early stage of his campaign, Tommy himself.
I have learned so much about the many different forms of dementia, including less well known ones such as Korsakoffs; the additional complications of looking after loved ones at a distance or even abroad. And, inevitably, each of the stories is unique. I looked again around the people in my room as they laughed and chatted and had fun. Wow.
The evening passed in a flash as it so often does amidst friends, music and new experiences. I reflected afterwards how hard it was to fit everything in! There were some wonderful stands in the exhibition and I was glad I had the chance to hang my label on the ‘Letters, Life and love stories’ tree : what did caring mean to me? A big question, more easily answered in a blog than in a nutshell.
I will leave others to give a commentary on the more detailed proceedings of the evening: the speeches, the celebration and the talented Scottish musicians who delighted us all evening.
There have been some excellent reviews, including the one that Tommy included in his own blog here.
My blogpost is a purely personal reflection.
So, in addition to the above, what were the personal highlights for me?
Firstly, bumping into Agnes Houston on the stairs and having a big hug!
I had met Agnes and the rest of the European Working Group of people living with dementia in Malta. Wonderful feisty lady, wonderful feisty group. I am delighted to keep in touch with them and truly honoured that Helga Rohra (the Chair) and the rest of the group understand and support my Whose Shoes?®, work and know what it is trying to achieve.
It was wonderful to return to Glasgow, the setting for one of my earliest Whose Shoes?® workshops and a real centre of creativity around use of our tools (see Case Study 9) and exciting collaborative work (see Case Study 1).
Tommy had very kindly given me some extra invitations and I was delighted to be able to invite some Glaswegian friends, people who live and breathe personalisation and person-centred approaches, including fantastic work with young people with learning disabilities.
So thank you Charlie, Ashleigh, Maureen, Pauline, Sandra, Jenn… The list goes on.
I was particularly looking forward to meeting two wonderful medics who have made a huge impression on me and become a big part of the fascinating, challenging, unpredictable journey that is called Whose Shoes? The rich and wonderful journey that has fired my life for the last five years, since I jumped ship from my ‘day job’, and brought me into contact with so many special people.
Firstly, Dr Peter Gordon (@Peterdlrow). Peter is part of the fabulous Grassroots GPs initiative – “The fellows who cut the hay” is their self-effacing epithet. My translation would be the guys who are prepared to stand up and be counted when they feel that their patients’ interests might be being jeopardised. I had already met Dr Martin Brunet (@DocMartin68) and Dr John Cosgrove (@DrJohnCosgrove) who have both been involved in ‘taster’ versions of my Whose Shoes? workshops. Now I have met Peter. 🙂
So that leaves Sam – who has become a dear friend over the last few months. Mr Sam Majumdar (@SamMajumdar) is a revelation. A consultant surgeon who has a special interest in dementia, in mental health, in psychology … well in pretty much everything really.
So why would this surprise some people? Why do so many people put themselves or indeed others in boxes where they are expected only to be interested in their own specialism or professional expertise? Surely this is the whole point – we are all human beings, complex beings who can have any combination of different ‘conditions’; simple human beings united by vulnerability and the need for love and kindness. I have mentored Sam on Twitter; he has mentored me in going with the #flow, finding the energy of the universe. Wow again.
And this word ‘love’ brings us back to the beating heart of the concert, pumping through every speech and energising every performance:
The Twitter hashtag #icarewecare says it all really. We are all carers in a day-to-day way. At some points in our lives, a lot of us become carers in a really intensive and all-consuming way. If we are not, we could be: as fragile human beings, our circumstances and those of our loved ones can change in a moment.
On Friday, I attended the funeral of a friend who broke his neck eleven years ago in a cycling accident, whilst cycling with my daughter and group of young people. The first thing I do when I wake up in the morning is stretch and I have been haunted by the fact that for the last eleven years this lovely, gentle, previously very active man has been unable to move anything but his head. Life can be very very cruel.
R.I.P. Alan, nicknamed ‘Smiler,’ who carried on giving, as well as receiving, love until the day he died.
We care for our family and friends, we care for people we meet. I sat writing most of this blog in a cafe in Glasgow, waiting for my train home. It was a nice place, warm and welcoming – caring, in that day-to-day way. Nobody bothered me as I sat typing away on my iPad by the window.
It was only when I came to pay and leave that I got properly chatting to the woman who had served me. I asked about the picture on the wall – a striking juxtaposition of old and new Glasgow. It turned out that I was in the ‘Glasgow Tearooms’ 87, Glassford Street and that it had only been open under new management, a family business for twelve weeks.
They cared for me and I promised to tell people. I wish them every success with ‘The Glasgow Tearooms’ and recommend highly.
I hope it is not too long before I get to visit Glasgow again. Quite a few people have asked me if I am coming up for the 24th European Alzheimer ‘Dignity and Autonomy’ conference in October. Well, given how much I enjoyed the 23rd Annual Conference in Malta and the way our Whose Shoes? workshop was received, just try and keep me away!
So thank you Tommy Whitelaw for inviting us all to the wonderful celebration evening in Glasgow. It was a truly #purple event. (But readers probably need to follow #dementiachallengers to understand the full significance of this 😉