I wanted to write about what happened yesterday when I got home, but I just couldn't. It was all just a bit too much. The past 9 months have been a journey. And it has been. It started out at walking pace. But I'll tell you, it's got faster and faster over the past couple of months and, since yesterday morning, the life of Tommy Whitelaw has been like a rollercoaster!
There was a wee article in the Herald today, but I'm told there'll be a bigger one tomorrow about what happened at the Parliament. Well, you can see the photo from yesterday - I handed over the letters! More than that, I had my reception at the Parliament. I showed the film and I spoke for a few minutes. Usually when I speak I do it off the cuff. But I knew I only had a short time and I wanted to fit everything in that I needed to say. I got a bit emotional and I think I messed up a few lines. I've put it below, so you can all read it.
Friends, I’d like to take a few minutes to tell you how I started this journey.
I first called Alzheimer Scotland in early January this year, with the idea of doing a walk to raise awareness of caring for someone with dementia and to collect letters from people who were willing to share their experience, good or bad. I promised I would then hand those letters into the Parliament.
I had no agenda in mind. I hoped, in many ways, that the struggles I faced were mine and mine alone, as this would be easier to fix. It saddens me to say that this is not the case; the majority of people I have met have faced similar or greater struggles than myself.
It would take many hours to talk in detail about all the issues raised on this tour. I have travelled around our country and spoken to so many carers over the past 9 months, I have read many letters and I have listened to accounts from people that have moved me to tears. I have been inspired by these carers and I’m proud – I’m proud that I live in a country where individuals look after the people they love, the people who bring us in to the world, our husbands and our wives. But these carers are struggling on their own dealing with this cruel illness - they need help, WE need help. I think a healthy society SHOULD be judged on the basis of how it treats the needy – this matters to us in Scotland but my experiences this year have told me that we are not doing enough.
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. I don’t know how many times I have been told ‘oh its dementia’, ‘oh that’s the dementia’ or ‘his mum has dementia.’
So I would like to say the following to all professionals who work in the care sector, and I hope I speak for other people who have a loved one with this illness when I say…
My mother’s name is Joan Whitelaw.
She was born on the 15th of July 1939.
She has been:
• a daughter,
• a sister,
• a wife,
• a mother,
• a friend,
• a workmate,
• a neighbour,
• a valued member of her community,
• a true, honest and dignified lady...
and, like so many others of the 82,000 plus people in Scotland, she is now labelled as ‘a wee women with dementia’. An illness we, at this time, have no cure for, written off, given no value and most certainly not given the respect and care they deserve. This is first change we have to make: the attitude towards loved ones with dementia and the respect given to the families and loved ones who care for them.
I urge all people who work in the care sector to respect and listen to all who live with this illness and their carers; they just might have something to say.
I don’t think it’s too much to ask for people with dementia and their families to be able to go to a one-stop shop. So that, when someone you love is diagnosed with dementia, there’s a key worker you can go to who’ll be able to give you advice, information and help to arrange any support you might need.
To finish, I would like to thank the Deputy First Minister, Nicola Sturgeon, for her attendance here today, her ongoing interest in the ‘Tommy on Tour’ campaign and for agreeing to read the experiences of so many carers across Scotland. I would also like to thank my local MSP, Johann Lamont, for her interest in the campaign and for hosting this wonderful event here at the Parliament.
I would like to thank Henry Simmons and all the team at Alzheimer Scotland for their help and guidance since the first day of the Tommy on Tour campaign. Especially Kirsty Jardine who has held my hand for the last nine months I am glad that everything we have learned from carers across Scotland will be used to campaign further, to improve care and support for people with dementia and their families. Thank you also to Irene Oldfather, who has offered guidance and support, as well as Brendan and Jamie from Enterprise Screen, who helped me to make the film you’ve just seen.
Last, but by no means least, I want to thank all the groups I have attended, the people who have shared their stories and written their letters and a big thank you to the families and carers who have accompanied me to parliament today.
AND BEFORE I FINISH I NEED TO SAY:
FOUR AND A HALF YEARS AGO I WALKED OUT A HOSPIAL WITH MY MUM AFER HER DIAGNOSIS OF DEMENTIA - AND WE WALKED OUT ALONE.
2 MONTHS AGO I WALKED OUT A CLINIC, AFTER AN EVALUTION OF MY MUM'S CONDITION AND MEDICATION, HAVING BEEN TOLD 'THERE'S NOT MUCH MORE WE CAN DO, ITS TIME TO CONSIDER RESIDENTIAL CARE' - AND WE WALKED OUT ALONE.
WE HAVE BEEN ALONE FOR MOST OF THIS TRAGIC JOURNEY. NOBODY IN SCOTLAND SHOULD HAVE TO DO THIS ALONE
|Johann Lamont, me & Nicola Sturgeon at the Scottish Parliament|
Like I said, I got a bit emotional saying it. A lot of people got emotional hearing it. Nicola Sturgeon got up to speak after me, and I could tell she was a bit emotional too. She said my wee film was "probably the most powerful few minutes of television I have ever watched" and that she would do everything she could, politically and personally, to make life better for the carers of people with dementia. She said a lot more than that actually, really good stuff, and I'm sure somebody wrote it all down, so I'll put it on the blog when I can.
This isn't the end of the story though. More like the first chapter. The start of the next chapter is that I'm going to going to be chairing the national dementia carers action group that Alzheimer Scotland are setting up. We'll be putting togther a manifesto: there's local government elections in May next year and I know that's where a lot of carers have been having problems - at local level. Carers of people with dementia want changes and they need better support. The Group will be speaking to lots of carers so we can find out exactly what's needed. That'll help us to know what we need to campaign on and what needs to go in that manifesto - the five most important things to people caring for someone with dementia in Scotland.
Loads of people have been in touch today. People I used to know back in the days when I toured with bands rather than memory buses. It's great to hear from them. It's great to think of people in the music industry watching my film too. I've had requests to do talks all over the shop. I'll need a bit of time to get back to everyone and to work it all out in my own head. First and foremost to me, as always, is my wee mum and what's best for her.
Thanks again, everyone.