Heartbreak and hope

Hiya,

I'm not a man who's often lost for words. It might be difficult sometimes, emotional. But usually the words are on the tip of my tongue and I'll find them eventually.

This time, though, I just don't have the words. So you'll have to bear with me if this isn't the best written blog update in the world. It's tough when you feel so very much that you can't do your feelings justice.

Last week I got the chance to meet with MSPs and show them my film. And I thought that was as good as it could get. That reaching the Parliament was the big achievement.

I was wrong.

Yesterday and today I have had the privilege of speaking at the Glasgow North East Carers AGM and the Carers Link AGM. I am completely and utterly overwhelmed by the reaction my fellow carers have had to the 'Tommy on Tour' campaign and to my wee film. They embraced the campaign and the film - they took them to their hearts - and they thanked me for all that I had done. For speaking out. For taking their stories and making sure they were listened to. They thanked me for making sure they were heard and recognised. I feel humbled by it and so very glad that the people whose opinions most matter in all this support what I have done.

I really wish I could tell you how much all this means to me. I'm in awe of the kindness and generosity and goodwill shown towards me and the 'Tommy on Tour' campaign over the past couple of days. Most of all, I have a sense of shared experience, of heartbreak and hope. Heartbreak in what we've already been through, all the difficulties we've faced, heartbroken by dementia itself. But hopeful, so hopeful, that there are better things ahead. People are enthusiastic about the new carers group that I'm chairing and how it's going to build on the work that 'Tommy on Tour' started. They think it can really make a difference.

If our stories can be read, can be heard, imagine the difference it'll make if all those decision-makers start to act on them. Imagine how much better life could be if politicians and doctors and councillors and social work and everyone who is involved in caring for someone with dementia read those stories and thought about a new way of doing things. A better way. A way that carers themselves have wanted for so long.

I have to thank each and every person who has spoken to me at these events. Who has told me what the campaign means to them, or just held my hand in a way that makes their feelings clear without words. Such kind, wonderful, caring people. Thank you.

Tommy

Back to Bellahouston

Hiya,

Back in June, my own wee tour of Scotland (well, a few bits of it anyway!) started from outside Bellahouston Leisure Centre in Glasgow. This Sunday, a young lad called Kris Rodden will be starting another walk from the very same place. Kris' mum has dementia, same as my mum. His mum was diagnosed with Alzheimer's disease when she was just 59.

Kris and a lot of other people, including Tom Urie from River City and Davie Anderson from City Lights, will be doing a sponsored 10K at Bellahouston in aid of Alzheimer Scotland's services in Glasgow and East Dunbartonshire this Sunday at 10am. I'll be there too. If you can come along, you'll be made very welcome. To find out more, you can read Kris' Facebook page or his Justgiving page.

Cheers,

Tommy

November news

Hiya,

Thanks to Frieda and Jasmine, I've got a wee bit more Nicola Sturgeon's speech that I can pass on. Firstly, she promised to personally read all the letters and emails that were sent to the campaign. Secondly, she made this pledge:

"I will do everything I can, in the priveledged position which I hold, to make things better for people with dementia and help in areas more than ever.  I will provide support that carers need to allow them to keep caring."

Which is good, really good.

You might think I'd be having a bit of a rest after last week's excitement. Not a bit of it! I've been asked to go to the Glasgow North East Carers AGM on Thursday (a place really close to my heart, as many of their carers wrote to 'Tommy on Tour' and some of them are in my wee film). Then I'll be at the Carers Link AGM in Milingavie on Friday. Tommy's still touring!

Here's another photo from last Thursday: me and some of the other carers with lots of MSPs after First Minister's Questions. You can see me next to Johann Lamont in her red jacket.

Cheers,

Tommy

Still a bit emotional...

Hiya,

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


Thank you.

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.

Cheers,

Tommy

I'll do a proper update soon

But in the meantime...

Don't think I'll be able to sleep tonight!

Hiya,

Well, here we are. Almost there. Tomorrow I'll be handing in all the letters & emails sent to 'Tommy on Tour' into the Parliament. Straight into the hands of Nicola Sturgeon. Me, and a big group of other carers, will be meeting MSPs and talking about the big issues related to caring for someone with dementia in Scotland. We'll be watching my wee film too. If you haven't seen my film yet, please watch it and share it with your family and friends. Stick it on your facebook or your twitter. I'd like as many people as possible to sit up and take notice of what carers of people with dementia have to deal with on a daily basis.

It's been a long journey. An amazing journey. I've met some wonderful people and I've heard a lot of stories. Some happy, but many more sad and some absolutely heartbreaking. I hope my wee campaign can make a difference. I hope the politicians and the doctors and the councillors and all the other people who make the big decisions sit up and take notice. The carers of Scotland deserve nothing less.

Thank you to everyone who wrote to me or shared their story with me.

Thank you to my wee mum, wee Joan Whitelaw, the best mum a man could have.

Cheers,

Tommy

One more week to go

Hiya,

So, on Thursday 10th November, at around 1pm, I'll be handing over the Tommy on Tour letters to Nicola Sturgeon. I still can't quite believe how far 'Tommy on Tour'' has gone since the start of this year, when I first thought about doing some sort of walk to meet carers of people with dementia, collect letters and make people sit up and take notice about the struggle carers face on a daily basis. I didn't have an agenda in mind. I didn't want to influence the letters people sent me. I just wanted to hear their stories. I suppose I really wanted to know if I was alone in what I was going through - caring for my lovely wee mum.

Well, Alzheimer Scotland have put together a report on the all the letters and the emails that were sent. There's quite a few. From the Highlands to the Borders. And if I've learned one thing from collecting the letters and meeting so many wonderful carers across Scotland it's that I'm not alone. I was never alone. But in some ways I almost wish I had been. If it was only me struggling, me finding it hard to cope, me banging my head against a brick wall, then maybe there was a simple answer and it would be easy to fix. But there's loads of carers like me. They've written to me, emailed me, met me and spoke to me. They've given me their stories in good faith and now I'm taking them to the Parliament - to the people who should be able to make at least some of the things I've been told about a bit better.

You might have seen an article in the Sunday Herald at the weekend. Russell, the journalist who interviewed me way back in January, did a follow-up interview about everything that's happened. You can read about it here Letters from the edge (you need to sign up to the Herald website to read it, but you can sign up for free). I'm also going to be on Radio Scotland again this Sunday morning, with Cathy Macdonald, on Sunday Morning with....

Last, but not least, I've got the video I'm going to be showing MSPs and you can now have a look at it on my blog. It's powerful stuff. I'm grateful to all the other carers who agreed to be filmed for this - thank you so much to Sandra, Margaret, John and Irene.




Cheers,

Tommy

A lovely return to the Glasgow North East Carers Centre

Hiya,

As part of my day at the Parliament on 10th November, I'll be showing a wee film about 'Tommy on Tour' to MSPs. In that film, there are some of the carers who wrote to me reading their letters out loud. I've never got used to being filmed and I take my hat off to anyone brave enough to go in front of a camera!

We filmed 3 carers from the Glasgow North East Carers Centre up in Easterhouse yesterday. I visited them a while back and it was lovely to see them again. Like so many of the carers' groups I've talked to, they made me feel really welcome and their support means a lot to me.

Me with all the wonderful folk at the Glasgow North East Carers Centre.

You've still got a couple of weeks left to get your letters and emails in to the Tommy on Tour campaign. All the contact details are at the top of the blog.

Cheers,

Tommy

It's the final countdown!

Hiya folks,

It's been a quiet couple of weeks on the blog, but I'll tell you, it's been a busy fortnight for me! I've got loads to talk about, so you might want to fix yourself a cup of tea now...

First things first - I'll be handing in my letters to the parliament on Thursday 10th November. There'll be a display of the letters for MSPs, they'll be shown a wee film about the tour and I'll be talking about everything that's happened over the past few months. I'll have some other carers with me: people who've written letters about what it's like to look after someone with dementia. A few of the folks from Alzheimer Scotland will be there as well. But the main part is that I'll be handing all the letters and emails over to Nicola Sturgeon, Deputy First Minister. The words, opinions and experiences of carers in Scotland will reach the people who need to read them. The whole shindig is being hosted by my local MSP, Johann Lamont and there's been lots of help from Irene Oldfather too.

In the meantime, I'll be at the Evening Times Community Champion Awards this Thursday night. I was very kindly nominated by Stuart Horsburgh at Strathclyde Police (who helped so much with the start of my tour in Glasgow back in June) and somehow I made it onto the shortlist! It feels a bit strange, if I'm honest - I think every carer's a champion. But if it generates more publicity and gets more letters in, then it's a good thing.

You might have seen me on the telly or heard me on the wireless last Wednesday. I was on BBC Radio Scotland in the morning, then BBC Reporting Scotland that night talking about poverty and how it affects carers. Given the last couple of winters we've had, it's clear to me how fuel costs affect anyone caring for someone with dementia: it's a lot of money that most of us just can't afford. I'd like to thank the Princess Royal Trust for Carers for their involvement in that coverage.

There you have it, Tommy on Tour is back at marching pace again! You've got until Thursday 10th November to send your letters and emails in. I'll make sure that every one of them is handed into the parliament.

Cheers,

Tommy

On his bike for Tommy on Tour!

Hiya,

One of the nicest things about 'Tommy on Tour' has been the way I've got to know loads of people in my own neighbourhood. There's a lot of talk in the newspapers about people not knowing their neighbours any more, not recognising people in their own street. Well, it used to be true for me, but not any more. I feel like I know so many people in my wee part of the world and it's mostly because so many of them have got behind me and supported me in my campaign.

One of those people is Colin Singh. He's from the local hardware shop near me on Paisley Rd West. They were one of the first places to put a 'Tommy on Tour' poster up and, if you look back at my earlier blog posts, they treated us to samosas when I started the walk in June.

Colin, my mum & me outside the hardware shop.

Anyway, Colin did the Pedal for Scotland bike ride earlier this month in aid of Alzheimer Scotland and he's raised a lot of money. Thanks, Colin! He's not stopping there, either - he says there's more fundraising on the way!

It can be easy to feel like a stranger in your own community. But it doesn't have to be like that. Chat to people, get to know your local shops and businesses. Honestly, there's some wonderful people around.

Cheers,

Tommy

September already - where does the time go?

Hiya,

I can't believe it's September. Sorry for not posting much on the blog, I'll have to fire my secretary ;-). Truth is, I'm keeping really busy. Tommy on Tour might not be on the front pages (well, not right now), but it's definitely still moving forwards.

I've got involved in a few different projects that are looking for carers' opinions about support for people with dementia and their carers. I might not get to meet as many people as when I went to the carers' centres (and I miss that), but it's been great to share what I've learned with some people making big decisions that'll affect carers like me. It's not just my own experience - I've learned so much from so many people these past few months.

We're still on track for the big letter handover. I'm hoping it'll be in early November, but as soon as I know for definite I'll be posting it on the blog. Thank you so much to everyone who's sent a letter or an email. Every single one of them will be handed over to Nicola Sturgeon. That's a promise from Tommy. For those of you who've not had a chance to write something yet, or don't know how to say it, there's still time. I'm still collecting letters and emails.

This has been a huge part of my life. When I look back at 2011, I can't quite believe how much has happened. It's changed me, I can tell you that. I'm not the same man I was way back at the start of this. I hope I've managed to make a wee bit of a difference - only time will tell.

Cheers,

Tommy