Monday, 30 April 2012

Emergency Care and Medical Services n NHSGG&C. invite me to speak at out care patient’s event

Hi 

Last month I was invited to talk about caring for my mum ,the letters I receive and show my film  to invited heads of departments and members from the  Nhsgg&C.I am happy to say I have received some feedback, and have now been invited to talk at an event in August to staff who work in the  Emergency and medical wards in Glasgow(around 100 members of staff) I am really grateful for being asked and for being  given the opportunity to speak about Dementia, and caring for my wee mum .I feel its important people within the care sector hear from and communicate with carers and families. This is something I would like to do more of, and feel it’s a positive step by NHS Glasgow
Thanks to Con for inviting me, I will post more details once finalised

Tommy


Speaking Today at Event for Palliative Resource Nurses

Hi
I will one of the guest  speakers today at an event for city wide Palliative Resource Nurses under the heading Dementia put yourself in their shoes
I was invited by Christine Hamill who attended a talk a few weeks ago that I was speaking at, I am grateful for this opportunity to speak openly and honestly as a son about dementia and caring and as with all I do this will be done on a voluntary basis and within the 22 hours cover I get a week
Tommy

Sunday, 29 April 2012

Thank you for the Life Stories Letters and e-mails

Good Evening
As I sit here at home after another lonely weekend caring for my wee mum ,watching her suffer and struggle with this terrible illness and struggling as a son to bear witness ,It confirms my belief that in order to bring better understanding and help to others who will face this tragic journey,we have to share our stories on how we live and feel.Only the true story of dementia can bring the correct understanding  and help So even though I sit here in sadness I sit feeling privileged and overwhelmed by the amazing people who have shared their stories not Dementia from a text book but Dementia by the families who face and have faced this illness, together we can tell the true story of living with and caring for a loved one

Tommy

Tommyontour film on NHS Glasgow Sites This Week

Good Morninig
Thank you to Daniel Connelly and the NHS Community Engagement Team for offering to put the Tommyontour film on some NHS web sites. The film should be up this week under a carers experience also a wee thanks to Brendan and Jamie from Enterprise Screens for their help in formatting and adapting the film for this purpose, I would also like to thank them for their direction and craft in making this film and also for the respect and dignity my mum was shown when they filmed at my house, I will add a link as soon as I have it Here is a wee link to the film I hope if you are reading this you will copy the link to share with others
Short film shown at parliament http://tv.enterprisescreen.co.uk/watch?v=347
Tommy

Saturday, 28 April 2012

With Thanks to the ALZ Association WA Chapter Seattle

           Hi
 A big thank you to Alzheimer's Association, Western & CentrWashingtonStateChapter for sharing my blog and film also for the kind words on thier site
From Scotland - the work of one man to raise awareness not only about dementia, but about the carers (care partners and caregivers) of those with dementia.
Tommy Whitelaw used this video and the letters he gathered from carers to build awareness with Scotland's parliament.
Beautiful, testimony of his love for his Mum.
Tommy

Dementia and Caring, With Thanks to my Local Carer Center

I have been traveling around in my 22 hours I get a week for the last months trying to meet as many people caring for a loved one as I can If you look back over my blog you will see all the carer centre and groups I have visited or been a guest speaker at, Dementia is a long term condition and it affects not only the person suffering but takes its toll on the families and carers i have met so many amazing people both at the groups and who work at the centers and many have a special place in my heart. A few months ago I joined my local carer group as this journey was taking its toll on my wee mum and I ,.we have faced a few issues lately and I  just have to say thank you  to Linda who runs my local center, It’s a relief to have someone take time to look at how we live and our needs  this allows me more time to concentrate on caring for my mum and I am getting good advice on what help is available to allow me to continue caring for my mum at home ,she is also working closely with our social worker who I have to say came to my recue when my mum lost day care and helped fund the cost of a befrienders service (I always thought befrienders  was a free service supplied by charities )anyway for all the things we wish we had or are not available at this time we have to celebrate the good help that’s out there and protect it .i would advise anyone caring for a loved one to call their local carer center and get advice,i know its not for everyone all i can say is I wish I would have ,long before I did
it goes back to the old saying help the carer through this journey ,that will allow them the time and strenth to care for somone they love

Tommy

Friday, 27 April 2012

Dementia and Caring Why I Believe in Life Stories

Good Evening
I have been caring for my wee mum Joan for nearly 5 years. Just over a year ago we nearly reached a crisis point as we struggled to cope and live,
I picked myself up best I could and decided to go out, raise awareness and try and find out how others lived and coped. It saddens me to say that most families face greater struggles than us , my campaign to collect life stories is based on my own experience on receiving a letter ,A letter that changed my life. In my previous life before dementia and caring I travelled all around the world with my job ,My long term girlfriend at the time also travelled with her job .for quite a few years my girlfriend kept trying to tell me that things had to change ,that we had to stop traveling and settle down, I had to grow up amongst other things, the more she tried to discuss this or shout or even in the most intimate of moments plead the less I heard ,I always seemed to be able to get out of talking about or discussing our future. One day as I arrived at my destination with my job I opened up my suitcase to find a letter. In that letter I read all the things my girlfriend had tried to tell me for many years ,for the first time I understood all the things she said and why we had to part
My heart was broken ,but that letter told me more about my life than I ever knew before ,that why I collect letters and life stories to take to the powers that be ,I truly believe our life’s in our own words is  the best way to bring more help ,understanding and awareness. We as families and carers are best placed to describe how we live and feel we are the ones who can guide to a better future and care for all. To often I hear others speaking about dementia and caring who have no experience, it bears no resemblance to how my mum the people I meet on my tour and I live and feel .A letter changed my life, our letters can change the lives of others
Please help a son and carer tell the story of living with and caring for a loved one ,we have a Deputy First Minister who is listening and who I will be meeting with again on May 9th
Thank you
Tommy

Popping in to see Glasgow City College Social Care Students

Hi
I will be popping in to Glasgow City College today to chat with some Students and Lecturers, who invited to me talk about caring for my mum and the life stories I get sent  last month, I left them with a report on my tour and letters last time and we are looking to do a project together looking at dementia and caring through the eyes of future carer sector workers. I am looking to forward to this and reading their thoughts and findings on my campaign and hope this helps with all they do in the future .I have 4 hours cover on a friday so i best get a move on
I also thought I would put up a wee phot of my amazing wee mum and me

Tommy

Thursday, 26 April 2012

Sporting Memories Network Thank You for the Article

Sporting Memories Network Thank You for the Article

Hi
Big thanks to Tony and all the team at the sporting memories network. This is a great idea. I met with Tony at the care road show in Glasgow a few days ago and we are planning to meet again soon I believe they are opening an office in Glasgow soon, you can find out more about them and the service they provide  along with a wee piece on my campaign at the links below

Wednesday, 25 April 2012

Tommyontour Article about Caring for my Mum in the Sun Today

Hi
I have an article in the sun newspaper.about dementia, caring for my mum and the letters I receive.please see a wee link to the article below
Tommy

Dementia and Caring, Meeting with Deputy First Minster again 2 Weeks Today

Good Morning
As a son and carer I will have another unique opportunity again two weeks today to meet and talk with out Deputy First and Health Minister Nicola Sturgeon.
And I grateful for this chance to meet and talk about caring for my wee mum Joan ,the people I meet and the emails and letters I receive ,
I started this campaign a year ago as we felt lost, isolated and as a son frustrated that no one would listen to how we lived and felt I have learnt so much over the last year meeting so many families who face the same struggles as we have,along with meeting so many people doing great work to support families over the journey dementia brings
One of the reasons I continue to go out and meet people and collect life stories is the way I hear dementia and caring being discussed and described  by others.To often what I hear bears little resemblance to my life and the life’s of the people I meet. That’s why I believe in life stories ,who better to describe how we feel an live than us,the families facing this tragic illness and caring for a loved one, help me tell the true story on living with dementia and caring, direct from the people facing this journey on a daily basis .We have a Deputy First Minister who is listening and I for one believe and trust her, and until I hear or feel  otherwise will continue to relay the thoughts and opinions from carers like us  for her to hear and read about ,our lives in our words  
tommy  
.

Tuesday, 24 April 2012

Chill4uscarers, Thank you for the post on you’re site


Chil4uscarers, Thank you for the post on you’re site

A big thank to chill4uscarers for putting up the post about my awareness campaign on their site ,you can view the post at the link below
Thank you
Tommy

Today at The Care Road show in Glasgow,

Hi
Firstly thank you to Emma and all the team for inviting me along to speak about caring for my mum and the letters I receive, .also thanks to all I met with and a big thank you to all who turned up for my wee talk, a few people came up and made contact after I had finished. and might result in more opportunities to raise awareness  It was lovely to meet some of the people exhibiting and I made some new friends also nice to see John from the North Dementia Forum. I will update more later, just got home and have to make sure my wee mum is ok and get the dinner on
Once again thanks to all who took the time to listen to my talk and watch the film
  
Tommy

Speaking at Event for Nurses - "Dementia: Put Yourself in Their Shoes” Wednesday 2 May 2012

Hi
Thank you to Christine Hamill, Jane and all the team for inviting me to speak at the City Wide Palliative Recourses Nurses - "Dementia:  Put Yourself in Their Shoes” Wednesday 2 May 2012 event. I was a guest speaker last month at a palliative care day of discussion at st Margaret’s hospice and bumped into Christine I am grateful for this opportunity to meet with nurses and talk about caring for my mum ,the letters I receive and the families I have met with
Tommy

Monday, 23 April 2012

Dementia, Caring, Collecting life Stories, Raising Awareness

One man's mission to raise awareness of dementia.
Son, Carer, Awareness Campaigner.
If you're a carer and you'd like to send a letter in, you can post it to Tommy on Tour, 39 crosslee street Glasgow g521sl. You can also email it to tommy@i-woz-there.com
Tommy

Article in daily record tomorrow on Tommyontour

Hi  
I have a wee article in tomorrows Daily Record ,looking back at some of my campaign ,not sure how it will be as I was interviewed a few months ago and quite a bit has changed
I hope it’s ok and still relevant to my campaign and personal thoughts
Tommy

Dementia and Caring, Our Experiences Can be Part of Future Decisions and Strategies

Good Morning
For the last year I have been voluntarily collecting life stories from families, meeting carers and talking about dementia to anyone who will invite or listen to me
I feel with the amazing input from other carers sharing their experiences and life stories  that we now ha a great chance to be part of future discussions and change on how will live with and care for a loved one with dementia .The Deputy First Minister has introduced me to the civil servants who work on dementia at st Andrews house .I for one believe this is a unique opportunity for carers like me to take their thoughts ,feelings and life stories direct to the heart of government ,along with having an input  in future discussions and decisions I am overwhelmed by the people who have already shared the experiences and hope others will share theirs. We can only bring the best help to others if we really understand the challenges they face, this is the reason our letters are so important, we as families who have faced or are facing this tragic illness are best placed to do this and help others
I hope if you can, you will share you’re experience on living with or caring for a loved one with dementia
You can e mail me direct at tommy@i-woz-there.com    or send by letter to the address at the top of the page
Thank you
Tommy
Son ,carer ,awareness campaigner

Sunday, 22 April 2012

Tommyontour Awareness Campaign, the Next Steps,

Hi
I had a very positive meeting last week with Government Civil Servants working on dementia and Strategies via the Deputy First Minister; this is a positive and encouraging step, this allows me to take the thoughts, feelings, letters and e mails direct to the heart of Government for the forcible future. This also allows me as a son and carer the chance to keep this campaign going in the manner it started, our words, our feelings, our life’s direct to the powers that be without interference or dilution,I have had many offers to join up with other groups or organization as this awareness campaign gains pace but I feel this has to stay as started ,true life from the people who have faced or are facing dementia and all it brings. I  will  be meeting the DFM again on may 9th and will be back in touch soon to meet with the dementia strategy civil servants to agree on how we move forward and work together on issues that come up on my tour meeting families and carers .I also hope my other plea to get all the voluntary ,charitable, funded dementia and care organizations together happens, as I feel everyone has to work together in order to bring the best possible help and understanding to all, I have many talks lined up based on this campaign,the letters and caring for my mum including one being put together along with NHS Glasgow ,I hope we can take this to other health and local authorities across Scotland ,I will update more on all above once confirmed
Please keep the letters and life stories coming, our experiences are the best and most honest way to guide and help with a better understanding and future for all
I have a few things lined up with the media at the moment to discuss and highlight dementia and caring and will update once confirmed
Tommy

Friday, 20 April 2012

Dementia, Caring Heartbreak and Hope

Hi
It’s Friday night, I have just checked on my we mum and she is sleeping peacefully as I left her room to walk to mine I can hear a sound that I used to be part ofThe excitement of people getting in a cab looking forward to a night out, something I used to enjoy but not anymore, I have only left my house at night 8 times over the last, well nearly 3 years. you try and ignore how life used to be, you have to in order to carry on, there is a constant sadness in this house I would never compare how I live or feel to the destruction that dementia is trying its hardest to bring to my mum, or how she feels or lives, I wont compare it , but I have to, as her son and carer witness it every day and night and it breaks my heart that’s the reason I raise awareness , heartbreak ,I feel it inside all the time ,I read it in letters and I hear it from the people I meet ,I hope we find a way to bring a better understanding on how we live as carers ,I  hope we find a new and better way of understanding and discussing  dementia to the wider public ,and I hope we do all we can to stop people feeling so alone and helpless. In the letters I receive certain words and phrases are repeated time and time again, no one understands, lonely, isolated .and why do we have to fight for everything, we have to start discussing and understanding dementia and caring in a new way, we have to bring a better and more honest  understating to the wider public on how we live and feel as lonely and isolated as we are, its less than it used to be ,I have travelled round in my 22 hours respite over the last year meeting and talking to carers who attend carer groups and centers and I see the friendships and help they provided ,I joined my own local care center a wee while back and I encourage people to get in touch with their local center and see what help is available I feel more able to concentrate on giving my mum the best care I can at the moment as my local carer center is  dealing with all the little bits of my life that ignore or never understood or had time for .it wont take the dementia away, its not a golden ticket ,but it helps ,in an ideal and perfect world we would have all we need and dream of. For all the things that are not available to help us at this time is it not as big a tragedy to not be aware or able to get the help that is available
Good night
Tommy and wee Joan

Thursday, 19 April 2012

Can a letter and Life Story Bring More Help and Understanding?

Can a letter and Life Story Bring More Help and Understanding?
I believe they can, I had a positive meeting today with government civil servants as I have had in the past with the Deputy First Minister, I Have never put a heading or claim on this campaign but I have always believed telling our own stories in our own words will be more powerful and helpful than we may think .
What is dementia?  What is a carer? , I know what they are not, they are not a statistic, or a sound byte or a headline they are Husbands, Wives .Sons , Daughters, Family members ,we have to remind and show people how we live how we feel and remind them of the love ,care and dedication it takes and we give
That’s  why I collect  and believe in life stories ,I hope if you have a story you would like to share, a story that will help bring more understanding to not only the powers that be but to the wider public then you will e mail it to me
You can e mail to tommy@i-woz-there.com
I listen to often to others describing how we live and feel, we are more than capable of describing this ,our lives in our words
I hope you will share with others and help make the most of this chance to be heard

Tommy

Positive Meeting at st Andrews House Today

Hi

I have just returned home from Edinburgh and my meeting with civil servants who work on dementia and strategies, and feel it was a very positive and encouraging meeting
It really feels like this little campaign collecting life stories and raising awareness is moving in the right direction, our life stories and experiences are being read and listened to
So thank you to everyone who supports this and thank you to the DFM and the team I met with today for their ongoing interest in our feelings our words and our life’s
I feel today was another step forward in bringing more understanding on dementia and caring, and as long as we keep moving forward then that’s a good thing
We parted company today on a positive note and will be back in touch soon to work on some ideas from today’s meeting
Campaigning as with caring has good days and bad days today felt like a good day

Keep the letters coming they are  helping  
Tommy

Care inspectorate, Event to Meet and Talk with Carers may 21st

Hi

With great respect to David and Angela from the care inspectorate for agreeing to meet and discuss what they do along with listening to carers on how they live and feel
The date will be May 21st and with thanks to Carr Gomm for allowing me to use their training room for this unique event
I hope some of the amazing groups and people I have met on my campaign will come and have a day of positive meeting ,learning and discussion
If you would like to attend please get in touch
 
Tommy

Meeting Civil Servants Who Work on dementia at St Andrews House Today

Well once I get my wee mum organised and some cover, I will be heading to Edinburgh to meet with Civil Servants for a meeting, still not sure why i have been asked to go at such short notice, all will be revealed on my blog later today.
tommy

Wednesday, 18 April 2012

Speaking at South Ayrshire Carers Centre in Ayr on the 21st June

Hi 

A big thanks to david Roxburgh from South Ayrshire Carers Centre for getting in touch to invite me to be a guest speaker at one of their events during carers week,I look forward to meeting fellow carers in Ayr ,we as a family spent many summers on holiday at a caravan site in Ayr ,so some memories will come back that day, I will be a guest speaker on June 21st and I look forward to meeting fellow carers and hearing their stories, David along with carers who attend his group have been keeping an eye on my blog and progress and I look forward to finally meeting them all  

Tommy

With apologies to values into action Scotland

I had to cancel attending a meeting at their steering group today as my wee mum has not been doing to well and had to come home at lunch time from her day care
I hope I can attend the next meeting and hear about the work they do
My wee mum has to come first
Tommy

Meeting Civil Servants Who Work on dementia at ST Andrews House Tomorrow


Hi  
I have been invited to Edinburgh to meet with civil servants who work with the Government on Dementia and strategies, A bit last minute but I look forward to discussing my findings on my campaign with them, this is also a prelude to my meeting with the Deputy First Minster in a few weeks .not sure of the complete agenda for tomorrow but always happy to meet and talk about dementia, caring the people I meet and who send me life stories

I will update more when I get home
Tommy

Care inspectorate, Event to Meet with Carers,

Hi
With thanks to the care inspectorate who have agreed to a day off meeting with and discussing what they do,and listen to some of the carers and families I have met on my tour
I think this will be great help to both the inspectorate and carers with both sides meeting for an informal afternoon discussing life and caring
I will post a date and venue soon and if you are a carer or work in care it would be great to have you along
With thanks to David and Angela for  agreeing to this positive day on awareness and discussion

Tommy

Dementia and Caring Lets all Get Involved ………………………….

Good Morning
The last year has been quite overwhelming and a great learning experience; I have met and been sent life stories from so many people who are caring as I do
So this is a plea keep the letters and life stories coming to help the powers that be understand better how we live and feel ,at both  Government and Local level ,they  need to hear our life stories in our words
 There are other things we need to do
Lets get all the voluntary groups and charities round the table and discuss Dementia and Caring, I have witnessed the work being done in research and the great work carer centers do in helping families get through this tragic journey,I am amazed at the work all carer centers do in their local community helping hold families together
When I first started I thought carer groups where just a place to meet and talk, they are so much more than that, the are full of great information and support
do not do this alone ,I tried and I almost  failed
So I will ask again lets all get round the table, work together and bring the best possible help and advice we can to families .I thank all who think this is a good idea and ask the ones who wont sit round the table with others to think again ,
Tommy

Tuesday, 17 April 2012

Lewy Body, Dementia with Great Respect to Norrms and Family

Hi
Well my campaign is about raising awareness on dementia AND life stories , along the way as I keep saying  I meet and hear from incredible people and their families, as you know I care full time for my mum who has Vascualr Dementia
Norrms is one of them and has kindly allowed me to read and share his journey ,below is one posting ,you can get more at the link below ,his life in his own words
Once again thank you Norrms and family

Tommy  

Time and TideAs they say, Time and Tide waits for no man, and how true is this? Thing is, unfortunately, until they find a cure, neither does Dementia of any type.
In just this last month I have had my medication upped once again , three times now in as many months (More or less) and also have had my “Crash Mat” delivered last week which now resides next to our bed to stop me hurting myself during my night terrors and falls from bed. Now, even the most optimistic person will have to admit this is not a good sign.
As I sat there last night on the edge of my bed, my feet just touching the “New Mattress” it suddenly hit me that this thing on my floor wasn’t there a few weeks ago. The amount of tablets I had just taken has almost doubled in the last few months and by powers of not so amazing deduction, this meant I had slipped into a later stage.
GOD I HATE THIS DISEASE!!
My mind wandered back to Christmas just gone, and all the hopes and dreams I had for the future, only to be smashed within three months by this GOD AWFUL ILLNESS!! It’s no use kidding myself, I am getting worse, I can’t hide it any more (And people with Dementia are very good at that!!) The evidence is here right in front of me!
I have also noticed lately that more people are asking me to repeat what I have said as they don’t quite understand me; this was also a common trait in the early stages of my illness before they gave me meds to combat it.
June Brown AKA actress “Dot Cotton “once said, Lewy Body`s is the worst disease of all , “It’s not just having it, its knowing you have it as well” and how right she was. I can see with my own eyes that things are getting worse, I can see the tears welling up sometimes in my “Angel” Elaine’s eyes as I do something yet again that is “Out of the ordinary” or I have forgotten something for the tenth time!!
MY GOD WHEN WILL THIS EVER END!!!
Where will this end? Nobody knows, when will they find a cure? Nobody knows that either, but there is one thing I do know
I AM NOT GIVING UP JUST YET!!
Just this week I launched the “GROWING MEMORIES “campaign, please contact me if you want to know more, and I also have another idea “Up my sleeve” to raise awareness which will hopefully not only help those with this awful illness but also their loved ones and carers as well. But I do need to know, if ever I am asking to much, please please tell me as I will “Reign it in a bit” as Elaine always says LOL
So, the fight goes on my friends
THANK YOU FOR YOUR NEVER ENDING SUPPORT
LOVE NORRMS AND FAMILY XXXXXXXXXXXXX


Glasgow City College social Care Students ,Amazing

Hi 
A big thank you to the staff and social care students from Glasgow city college, who are working on a project based on my letters and campaign
Thank you Liam ,Scott  and Marjory who lecture and have taken the time to get involved and work on  the feedback from the amazing carers and families who contact me along with this amazing group of students
And to all the students and to Derek who I met at my talk and has made and is wearing a Tommyontour tee shirt at an awareness event at the college a week on Friday
I am very proud to have been a guest speaker at the college and even more proud of their response and enthusiasm
Awareness at its best
www.cityofglasgowcollege.ac.uk/

Tommy

Attending Values into Action Scotland Meting on Wednesday

Hi
I will be attending a meeting with values into action Scotland this Wednesday to hear about their work and chat about the people I have met on my Tommyontour awareness campaign, with thanks  to Norma for getting in touch and inviting me along
You can get info at the link below
Tommy
Web: www.viascotland.org.uk

Monday, 16 April 2012

Meeting Deputy First Minister Nicola Sturgeon in 3 Weeks

Good Morning

On May 9TH I will have what I believe is another unique opportunity to meet with our Deputy First Minister Nicola Sturgeon to hand over some more letters and life stories and discuss the thoughts  and opinions from carers like me who look after a loved one, as a son and long term carer I am grateful for this chance A chance for people like me to tell without guidance and the distortion of others how we live and feel ,This may be my last opportunity to have such a meeting and I want make sure I make the best of it .  only we know the struggles we face, the heartache we feel, the frustration, loneliness and isolation we live with, I personally struggle to witness on a daily basis Dementia doing its best to take away the greatness that is my mum along with doing its best to take away anything that I am and I spend to many days feeling helpless and unheard
I feel this is a chance for us to be heard describe how we live, how we feel and bring more understanding and help to others

Direct from us to a deputy first minister who is listening and showing interest in our words, my story is not enough, I hope you can help me collect more letters and life stories before I return on May 9th
I hear to many times give carers a voice, well there is a chance to use that voice on May 8th, you’re voice you words you’re life
I hope you can let carers you are in contact with know about this and let them have a chance to help others

Tommy

Sunday, 15 April 2012

Letters and Life Stories, They can make a Difference

For the last year I have been raising awareness on Dementia and Caring. On May 9th I meet once again with our Deputy First Minister to update on my findings over the last months ,I would like to thank all who have supported my campaign ,sent me letters ,appeared in and shared my film ,met with me ,invited me to talk and promoted Dementia awareness with me and the amazing families I have met who are facing or have faced this tragic illness This will possibly be the last time I take letters to the DFM and I really hope you can help me take the true story of living with and caring for a loved one .our own  life stories in our words can best describe how we live and how to help us
I believe in life stories I believe we are in the best position to bring more understanding and help. Too many times I hear and see people describing how we live who have no true experience ,and most disappointingly describing a life that bears no resemblance to my own, and many others
So as the son and carer of a mother who is suffering as I am on a daily basis I ask once last time,
 If you're a carer and you'd like to send a letter in, you can post it to Tommy on Tour, 39 crosslee street Glasgow g521sl. You can also email it to tommy@i-woz-there.com
Help a son and carer take the true story of living with Dementia to our government, let carers without pressure or prejudice tell their story in their own words
Help decide a better future for all
Tommy

Saturday, 14 April 2012

Dementia, MY Mum, Dad and the Part That Hurts the Most,


The only boyfriend she ever had, Married for 44 years till he past away, and not even allowed the privilege of remembering him.
Dementia the part that hurts the most

My mum Joan and dad Thomas,superstars in my eyes
Tommy

Dementia, Caring you’re Life Story Can Help Others …………….

Hi
My dementia awareness campaign is based on the life stories of  families and carers who have faced or are facing this tragic illness ,I truly believe the experiences we have faced and are facing at this time can help others who will have a family member diagnosed in the future. The journey and challenges we face can help bring more understanding and help for others ,.I feel we have to share our experiences with the powers that be and within the care sector in order to have them truly understand how we live and feel .Dementia and caring need to be discussed more openly and honestly in order to bring a better understanding to the wider public
our lifes in our own words ..
If you have a story or experiences you would like to share please e mail to tommy@i-woz-there.com you can also view and hear some carers I have met so far on my Tommyontour campaign reading from letters sent to me at the link below
Tommy
Short film shown at parliament http://tv.enterprisescreen.co.uk/watch?v=347

Dementia, Caring Time for a Rethink its Time to Talk

Good evening /morning
Once again its late at night and my wee mum is sound asleep .I pop in four or five times a night to check on her, looking at her lying there you may think would bring me peace but it doesn’t ,it just breaks my heart ,it breaks my heart because this amazing hard working caring woman is suffering and lost in the struggle with dementia .i as her son struggle to witness this destruction on a daily basis and we both struggle to cope as sit I sit here typing this I think is this the best we can do is this it ,We are both lost lonely and isolated
For the last year I have been trying to raise awareness on this tragic illness and this miserable life we lead, I get 22 hours a week and I go out doing my best to raise positive awareness  There has been many positives, the amazing carers and families I have met, the brave amazing people who have shared their life stories and sent me letters,A deputy first minister who has taken time to listen to a son ,carer and read our letters and lots of amazing people who have supported me and my campaign,
Lots of people have taken the time to listen and support me and I feel I have the right to have an opinion on dementia and caring
So here its
I would like all national groups to sit down put any differences behind them and find a way to work together, if we are all looking for the same outcomes why cant we all sit together and agree to work on each others strengths and support each others  weaknesses, the politics and egos must be put aside
If anyone has any doubt about the impact dementia or living life caring for someone with dementia or for any other reason someone needs care, then come and read my letters come and meet the people I have met come and spend a day with me I am proud of the people I have met and who have taken my campaign to heart, I am shocked by some who should understand and be listening who really don’t understand or listen, don’t let your own ambitions overtake the people you should be representing
There is a saying give carers a voice, I am shocked by the people who don’t listen and grateful for the ones that do, the point scoring has to stop
I look forward to meeting the deputy first minister again soon, at least she is listening .lets all sit together and give her something honest ,true and worth listening to and something without  Prejudice she can work on ,don’t let amazing people like my wee mum down they deserve the best care available and that can only be found by working together as one
Tommy

Friday, 13 April 2012

Speaking atThe Care Roadshow in Glasgow April 24th

Hi
With thanks to Emma and all connected with the care road show in Glasgow, I will now be a speaking and showing my film at this event,my seminar is at 2.30pm in the Strathclyde Bar
This is a free event so if you are in town please come and say hello
Care Roadshow Glasgow, taking place at the Glasgow Royal Concert Halls.
Exhibition Hall, Glasgow Concert Halls,
2 Sauchiehall Street, Glasgow, G2 3NY
 
The show opening hours are: Tuesday 24th April: 10.00 - 16.00

Alzheimer Scotland rejects my round table discussions on dementia and caring with groups and charities

Good morning
A big thank to all who agreed to a round table meeting on dementia and carers ,Alzheimer Scotland have rejected this idea to listen to my life caring for my mum and my findings at my talks and meeting along with the letters I have received over the last year .this fills me with great sadness and feel they are missing a great opportunity to hear how carers like me from all across Scotland live and feel ,A big thank you to all the carers ,groups and charities who have agreed  that this meeting will serve great purpose to families like mine
I will update my reaction to this shortly
Tommy

Cllr Brian Lawson with Thanks, Today’s Paisley Daily Express

HI
With thanks to councilor Brian Lawson from Renfrewshire council who came to meet with me last week when I was a guest speaker at Renfrewshire carers and for his time meeting with carers who attend the group
I would also like to say a wee thank you for his mention in his column in today’s paisley daily express
i will add a wee link once avalable
Thank you
Tommy

Thursday, 12 April 2012

LTCA, Thank You for the Invite to Talk at Involvement network launch may 9th


Hi

Thank you to Nancy for inviting me as one of the guest speakers at the launch below .The LTCA have been great supporters of my life story campaign ,putting on flyers and in newsletters since day one, I have got to know a few people there quite well including Irene, Ian and Susan and value the work they do
I am very proud to be invited to speak at this launch, please see some details below and a link to their web-site for more info
Tommy
We are going to use the event to launch the Involvement Network (flyer attached) which will be a loose group of volunteers, drawn from our membership and by word of mouth. Anyone over 18 with a long term condition or disability will be able to join the Involvement Network and people will be supported to take up various opportunities to contribute to the policy work of LTCAS and to work for partner organisations such as the Scottish Government, NHS and universities where the involvement of people with long term conditions is key.

Following an introduction from the Chair, we would like to kick off the event with a couple of good practice examples of different models of involvement which will inspire individuals to join the network and to have confidence in the power of their experience to influence decision makers.
Long Term Conditions Alliance Scotland (LTCAS)
349 Bath Street

Glasgow G2 4AA

Carr Gomm Forum ,My Friend Irene And Me

A few weeks ago I was the guest speaker at the Carr Gomm forum.As mentioned before I have made good friends with peolpe who work there ,So here is a wee photo of Irene and me ,Irene has been a great supporter of my life story campaign ,and I value all they do for me and others who care or need a helping hand
tommy

Speaking at Palliative Resource Nurse Study Day on Wednesday 2nd May

Hi
A big thank to all involved in the Palliative Resource Nurse Study Day for inviting me to talk about Dementia, caring for my mum and the letters I receive
I met Christine Hamill at a previous talk at st Margaret’s hospice a few weeks ago and I thank her for inviting me to speak at this event.
This is really the basis of my awareness campaign getting the opportunity to talk to people who supply care about life living with and caring for a loved one
I would also like to thank Jane Ann and all the Primary Care Palliative Care Team


Tommy

NHS, Tommyontour Film Going up on Web Sites and Talks Planned

Good morning
A few weeks ago I spoke to heads of departments within NHS Glasgow, This was organised by Daniel Connelly from the NHS Community Engagement Team.
This has resulted in my film going up on some NHS web sites under A Carers Experience along with planned talks within various departments under the heading A carers Journey. I would like to thank Daniel and all concerned for taking the time to listen to me that day and for their great input in this positive outcome, as I have always said the best way to raise awareness and bring more understanding is to listen to carers and families like mine who are caring for a loved one. If you really want to know and understand how life is caring for someone THEN ASK A CARER
Once again thank you Daniel for all the help in setting. This up
Tommy

Wednesday, 11 April 2012

Dementia and Caring in Scotland ,lets get round the table and talk

Hi

For the last 5 years I have been caring for my wee mum Joan who has vascular dementia As my mum struggles on a daily basis with this tragic illness, I struggle as a son to both care for her and witness the suffering she faces For the last year I have in my 22 hours free a week Been traveling round to meet with families and carers ,to hear their life stories .collect letters and  do talks about dementia .I have made my mums life public, a difficult decision without her permission and I have done this for a reason to raise awareness and try and bring more help and understanding on dementia ,I have received hundreds of letters and feel my journey over the last 5 and in particular the last year give me the right to have an opinion on dementia in Scotland today , I feel its of the greatest importance that my story and our opinions are listened to by  organizations and groups who are work in dementia and caring, so I have invited Alzheimer Scotland ,carer Scotland and The princess royal trust for carers along with representative from social work and hopefully government to meet and listen to A son ,Carer and awareness campaigner and the opinions of the families and carers I have met with and the stories I have collected
I am openly inviting them to come and listen to my thoughts and hope they can find a new way of working together to help families like mine .instead of being so separate I want them to join together, they all have qualities to bring and its with great sadness that if we are all after the same thing better care for people and families with dementia then lets all do it together
Its time to sit round the table with carers like me and discuss the best options to work together to bring the best help we can for people
I have invited them all to a round table meeting to discuss my findings I will let you know who agrees to come .and if they can show me another person in Scotland who has met more carers than me in the last yearthen i will ask them to exxtend an open invitaion . I feel I deserve the chance to speak with them after all I have been meeting carers across the country for the last year
I would also like some families and carers to attend  this open discussion to have their say and listen to the people who attend

Tommy

Thank you Saltire Sounds and Paisley .org.uk


Hi
a big thank you to Lorraine from Saltire Sounds and all at http://www.paisley.org.uk/  for highlighting my campaign to collect life stories

tommy


paisley.org.uk community site with a section on your tour , Thanks Lorraine
http://www.paisley.org.uk/
On this page we will provide regular news bulletins and information , as it happens, of interest to the disability community . Keep checking back as it will be regularly updated . Contact michael.mcewan@paisley.org.uk if you have any news you would like us to feature next month Renfrewshire Sound,...

Filming 3 Minute on Line Blog for STV Local Today

Hi
I will be over at the STV studious today to film a 3 minute on line blog on my life, Dementia, caring for my mum and my passion to raise awareness and collect life stories.
This should be up and available to view in about a week’s time. This is a venture by STV to give local people a chance to talk about their life and passions.
I think this is a great idea and look forward to both filming my own story and watching others talk about their own life and passions
I will add a wee link when available
Tommy

Tuesday, 10 April 2012

Dementia, Caring, Tommyontour on BBC Reporting Scotland, tonight 6:30pm

Hi
I will be on the evening news tonight ,discussing dementia champions ,a new announcement by the Scottish Government and my thoughts on life caring for my mum who has vascular dementia,
I will add a link later once shown and available and depending hew good or bad I come across  

Tommy

Assisted living Today USA Phone Interview with Tommyontour Now Available

Good morning
A few weeks ago I was contacted by Tom from Assisted living today based in Pennsylvania America to do a live phone interview on caring for my mum, dementia and my campaign to collect life stories. With thanks to Tom and Brenda and all at assistedlivingtoday.com
Please see link to interview and site at link below
We had a chance to catch up with Tommy Whitelaw to learn more about his Website and his campaign to raise awareness for dementia and for the caregivers for those with dementia: Tommy on Tour
assistedlivingtoday.com
Tommy

Monday, 9 April 2012

Tommyontour, Guest on Good Morning Scotland Tomorrow Morning

Hi
I will on radio Scotland tomorrow morning at 7am on the Good Morning Scotland programme discussing my feeling and opinions on Dementia, Caring and how we can support families and carers caring for a loved one with Dementia
I hope you can tune in and I hope I do ok
Tommy

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