Tosay speaking South Ayrshire Carers Dementia Awareness Event

With great thanks to David Roxburgh and all involved with South Ayrshire Carer Center for inviting me down to speak at their Dementia Awareness event Today I was a guest speaker there on carer rights day last Year and look forward to seeing them all again

David does great work and we have met many times since at different events

I look forward to showing my Film and updating them all on my progress and future plans and hearing from families who care for a loved one as I have done

You can get more info on the work they do at the links below

Tommy

David Roxburgh

Service Co-ordinator

South Ayrshire Carers Centre

43 Sangate, Ayr

KA7 1DA

Tel:  01292 263000

http://www.unity-enterprise.com/default.asp?contentID=65

Feeling Helpless nearing a crisis .we can change that ,we have to

Feeling Helpless nearing crisis .we can change that ,we have to change it 

My journey caring for my mum is repeated in so many ways time and time again in the letters I receive .I look back and as dementia took its toll on my wee mum .it took its toll on me also .I was a son who was trying to care for his mum .why was it so hard .to many days I stood by my mums feeling helpless and fearing a crisis coming towards. I don’t know what courage I have or had but it was tested too often .add the loneliness, isolation, lack of understanding on my part and on the part of too many other often with the best intentions but no real understanding. We were almost designed to fail.in the end our cry for help was a campaign ,but we should not need a campaign to succeed .we should be given the best of advice the best of understanding and be allowed with the clearest of heads to care at home .be cared for in residential or hospital admittance .I never really had the clearest of heads it’s hard to when your heart is breaking inside .that’s  where a better understanding  of the journey ahead would have helped. In fact  a better understanding across society on dementia and caring would have helped and I suppose that’s what I am trying in my own small way today

This is ultimately  an awareness campaign we should never be allowed to feel helpless ,be lonely or isolated we should be furnished with and surrounded by the best of understanding

I don’t want any other son, daughter ,husband ,wife in fact anyone for fell like I felt. My mum Joan was the kindest  most caring person you could ever wish to meet ,she as with so many other deserved / deserves better .my mums story was a love story to often it felt like a tragedy in waiting

We as a society can allow love stories to continue we can allow dementia to change that or the pressure of caring

Tommy

You can help me by sending your love / life story thoughts or opinions to tommy@i-woz-there.com  my promise to you is the same as my promise to my mum to try and help keep life stories as love stories 

More - talks - Meetings- projects -hopes -dreams

February 15^th speaking Caledonian university 3^rd year mental health students

February 19^th speaking South Ayrshire carer’s dementia awareness day

February 20^th       speaking 1st year mental health nursing student’s Caledonian university

February 21st    attending Carers link Milngavie

February 21^st Meeting new carer engagement film ITS OK TO ASK

February 22^nd dementia working group Glasgow city council 2^nd meeting as per my motion passed 

March 7^th     attending steering group Art in the Gart

March 14^th    speaking at Lockerbie carers dementia group

March 8^th       conference at City Chambers NHS  GG*C  caring for older people

March 12^th       speaking Glasgow Caledonian Uni Nursing students  

March 22nd speaking at SDRCN Conference Stirling

April    speaking at labour party conference fringe meeting

 On-going projects 

Academic paper                  with a leading university on the life stories

Carer engagement film                  working title (its ok to ask)  

Dementia through art project          in partnership with Gartnavel royal hospital a permanent exhibition

Glasgow city council dementia working group based on my motion passed last February

Talks

I have many talks lined up across the NHS and universities based on caring for my mum and the life stories

You can help make all of the above all they can be by sharing you’re story, thoughts, opinions or experiences good or bad at tommy@i-woz-there.com

Thank you ,

Thank you

I was having a wee cry earlier ,I walked into the house and it was very cold and dark after being out all day ,and that’s strange in itself ,I barely left the house over the last years whilst caring for mum, I had a set amount of hours each week that I  used to start and do my awareness campaign .Along with the struggles dementia brought our way .we where painfully lonely and isolated   this is something that is repeated time and time again in the letters I receive along with a lack of understanding .We at this rime cannot cure dementia but we can cure loneliness ,isolation ,understanding and respect .And what a difference curing them could make to people living with dementia and their loved ones. I thought I knew what loneliness was until mum passed away .but in many ways I was never as lonely I thought with my wee mum here, No matter what we faced even as we neared the end my mum could change it with a smile or hold of a hand, she was in ways stronger than me and in so many ways it was mum who cared for me even against all odds

What else this campaign has shown me is the kindness of people most of whom I have ever met, that has for me helped get me though the darkest and hardest days I wish you could have met my mum ,you would see how lucky I was ,how kind she was ,how caring she was and why this Story  is hers not mine and I WISH Mum could have met you and hope she realized we where never really alone there are so many kind people out there just like her

What I am really trying to say is thank you ,thank you for the kindness ,for the support and for reminding this son how great people can be

Tommy

Speaking at SDCRN conference Stirling University March 22nd

Hi

With great thanks to the SDCRN for inviting me to speak at their annual conference on March 22^nd .I look forward to speaking about life caring for my wee mum ,the life stories I receive and the people I have met  on my tour along with showing my short film .

Speakers over the two day event are as follows  

Professor John Obrien (Cambridge)

Professor Peter Passmore (Belfast)

Dr Patrick Kehoe (Bristol)

Simon Ridley (Alzheimer research UK)

Professor Pauline Banks (UWS)

Dr Gary Stevenson (Stratheden hospital)

Dr Maggie Robertson (University Highlands and Islands)

Shirley Law (DSDC Stirling)

Tommy Whitelaw Tommyontour / dementia carer voices

You can get more details on the 2 day event at the link below

www.sdcrn.org.uk

www.sdcrn.org.uk

Facebook page: sdcrn

Twitter: @TheSDCRN

Tommy

No one ever asked..

No one ever asked

My wee mum was the kindest most caring person you could ever hope to meet, her ability to love and care for others was inspiring.

Her parents both passed away when she was very young and my mum was brought up by her big sister Agnes along with her other sister my Aunt Blondie. My Aunt Agnes had a large family of her own but cared for my mum and perhaps this was the building block of my mum and made her the caring person she went on to become. My mum met my dad one day and there began a  true love story, two people made for each other and that was the start of a new love story, my parents love for their children. My mum like my dad lived for us and many other family members and friends and was always there to help out in any way she could. She worked hard all her life, especially over the last ten years my dad was alive as his health stopped him from working and took him away too soon. My mum would go out to work night shift after putting me to bed off she would go and work in the thread mill and be there in the morning to get us up for school. Fourteen long years mum worked her fingers to the bone to give her family the best. Across her many jobs she was always the hardest most thought of worker and when my wee dad passed away ten years ago my mum’s heart was broken.

I often thought that my mum would die from a broken heart and later as dementia took its cruellest toll I often questioned what was crueller; to die of a broken heart or to no longer remember the reason that your heart was broken? My mum gave so much to so many people, she made the little things better and she went without so others could be happy or succeed and I miss her. 

This is just a brief description of my mum and if you are reading this you now know more about my mum than most of the people we dealt with since diagnosis till she passed away, because no one ever asked .This highlights one of the biggest issues we faced, too often too many people over the last few years saw dementia first and not much more. Too many people even with the best intentions involved in this journey only saw a wee woman with dementia and that’s where we fail people. My mum was much more than that. If we only use dementia as the starting point, then we deny the life we led and can still lead for as long as possible. The starting point should be the person themselves, their life story, abilities, likes and dislikes.

My mum was kind caring, loving and wonderful friend and over the last few years too many people missed this because they never asked, they simply saw dementia and for that reason, missed out on knowing and understanding a remarkable lady who would have given them so much more than they gave her.

Tommy  

Speaking Labour party conference fringe meeting this April

Hi 

a few  weeks ago  I popped through to the Scottish Parliament to meet labour leader Johann Lamont and shadow health secretary Jackie Baillie about my awareness campaign. We had a chat about life caring for my wee mum and the life stories I receive .while I was there I was invited to speak at  the Labour party conference in April up in Inverness look forward to speaking as a son who cared for his mum and about the many hundreds of people who share their life stories .Over the last years the SNP  have been very supportive of my campaign in particular the Deputy First Minister Nicola Sturgeon who I have great respect for ,I am also grateful to Johann and Jackie for this opportunity  After all this a story about a mum a son and many other husbands ,wives ,sons ,daughters and families

 this is an awareness campaign about love ,heartbreak ,hopes struggle .and dreams respect and dignity 

Tommy

 at parliament with  Johann and Jackie

My motion passed Glasgow city Council your words can help #dementia #Caring

Back in February I took life stories and reports on the life stories people send me to Glasgow City Council and had a cross party motion passed as below We met a few weeks ago to set this group up and meet again early February to start the new GCC dementia working group ,this was based on peoples lives in their own words I hope you can help me collect more thoughts and opinions before the next meeting to keep this a motion by people for people you can send you’re thoughts to

tommy@i-woz-there.com

With thanks to all who passed this especially Cllr McDonald Cllr Flanagan Cllr Kerr and Ann Cumming from SW GLASGOW

MOTION

Council recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign

Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s findings be presented by Council to the Scottish Government.

Tommy

Son, awareness campaigner

#rememberjoan

Today Meeting carers Alzheimer Scotland south Ayrshire services

Hi

With thanks to Jenni  Mckeand who runs the Alzheimer Scotland  South Ayrshire Service for inviting me back down to attend and update carers at their next meeting

I was down last year very early on in my campaign  and look forward to returning to see Jenni and all who are part of the group

The group meets at St Quivox Church Hall, St Quivox Road, you can get more details on the services  Jenni and the team supply at the link below

Alzheimer Scotland – Our Services » South Ayrshire Services 

I will see Jenni again a few weeks later on the 19th at PRTFC  south Ayrshire dementia awareness day 
 when I will be a guest speaker and Jenni will be doing a presentation with thanks to David Roxburghe  for the invite to this event 

Tommy 

had a lovely day down at Prestwick  with Jenni  and families who attend 

With thanks to Jim Hume MSP for mentioning at Scottish Parliament Tommyontour Campaign during mental health Strategy debate

With thanks to Jim Hume MSP  for mentioning  at  Scottish Parliament Tommyontour  Campaign during mental health Strategy debate

Hi

With thanks to MSP Jim Hume (LIB Dem)  for mentioning my Tommyontour campaign during a debate at the Scottish Parliament on Mental health strategies .I would also like to thank Jim for inviting to speak at his healthcare conference in Biggar on Saturday Past     

When Kevin Stewart referred to the many mental health champions in Scotland, he should perhaps also have mentioned Tommy Whitelaw. For many years he cared for his mother, who had dementia, and witnessed her writing her name and date of birth on her arm to hide the fact that she was suffering from the condition. He is now taking his Tommyontour campaign around Scotland to spread his good word.”

Tommy 

Dementia CarerVoices -Tommyontour update on projects

Dementia Carer voices -Tommyontour updates on  projects ,hopes and dreams




Dementia Carers Voices Update

Dementia Carers Voices is involved in the early stages of a number of exciting projects to raise awareness of the impact that dementia has on families and put the voices and experiences of carers at the forefront of discussions on future dementia care strategy.

Academic paper and book

The University of the West of Scotland will be collaborating with Glasgow Caledonian University to produce an academic study into dementia in Scotland, based upon the life stories collected by Tommy Whitelaw during his ‘Tommy on Tour’ campaign. This report will then be transformed into a book in which carers can pass on support and helpful tips they picked up during the course of their own journey caring for a loved one.

‘Letters through Art’ project

Dementia Carers Voices will be working in partnership with NHS Greater Glasgow and Clyde and ‘Art in the Gart’ to use carer’s life stories as the inspiration for an art display in the new wing of Gartnavel Hospital. This exhibition aims paint a picture of what caring means in different communities across Scotland to inspire and comfort patients, visitors and staff.

Carer engagement film- “It’s okay to ask”

In partnership with NHS Greater Glasgow and Clyde Community Health Partnerships, Tommy Whitelaw aims to build on the success and profile of his previous awareness raising campaign by fronting a carer engagement film to highlight the role of carers and encourage them to seek help to prevent crisis situations. This message will be spread further through ‘roadshow’ events in public spaces across the GGC area to interact with carers in their local communities.

Tommy admits that he himself waited too long to ask for help, and it is for this reason that he is so passionate about empowering and enabling others. “One of the biggest issues for me is that many people are unaware of the support already available to them that could avert crisis situations and literally change their lives.”

Talks to health and social care professionals

Thanks to the cooperation of NHS GGC, Tommy will continue to deliver presentations sharing his experiences as a carer with health and social care professionals and students across a variety of settings including hospitals, universities and colleges. These events are intended to raise awareness amongst the professionals that people come in to contact with during their journey as a carer and feedback from these events to date has been extremely positive.

 Meeting with Cabinet Secretary

Programme Director Irene Oldfather and Project Officer Tommy Whitelaw recently met with Cabinet Secretary for Health and Wellbeing, Alex Neil to update him on the Dementia Carers Voices work programme and some of the projects outlined above. We look forward to sharing the key findings from carer’s experiences with him over the next two years in order to put dementia carers in the spotlight and ensure that their views are incorporated in to future carer’s strategies.

 We want to hear from you

We are passionate about providing a platform upon which carers can voice their hopes and concerns. If you would like to share your experience of caring for a loved one living with dementia, please contact tommy.tommy@i-woz-there.com

All of the above is based on the words .thoughts ,experiences of familes who write to me ,Our lives in our Words