more awareness, talks and meetings dementia carer voices

A busy week ahead, awareness, talks and meetings

February 18th meeting Citizens Advice Bureau (Morning)

Meeting to discuss possibilities of working with Citizens advice on dementia and caring  

February 18th meeting Cardonald College re talks

Meeting lecturers at Cardonald College to arrange dates for talks
February 19th speaking South Ayrshire carer’s dementia awareness day

Speaking at South Ayrshire Carers dementia awareness /open day

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

The second of 3 talks at Caledonian University final talk in March to 500 Nursing Students  

February 20^th enterprise Screen meeting carer engagement film

Meeting the lads from enterprise screen to finalize story board for new carer engagement film

February 21st attending Carers link Milgavie

Attending carer group meeting at carers link Milgavie to update on campaign

February 21st Meeting re carer engagement film “ITS OK TO ASK”

Meeting with Partners on new carer engagement film NHSGG&C, GCC, ALLIANCE, and steering group members  

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

Glasgow city council dementia working group meeting at City Chambers based on my motion passed last February

Irene Oldfather my Mentor and director of the dementia carer voices project will do a presentation  


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 Gartanvel 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

Future confirmed talks


February 26th stand Murryfield at DSDC open day
March 1st “Improving dementia support after diagnosis” event- Helens burgh

March 4th meeting care inspectorate

March 7th attending steering group Art in the Gart

March 14th speaking at Lockerbie carers dementia group

March 8th conference at City Chambers NHS GGC caring for older people

March 12th speaking Glasgow Caledonian Uni Nursing students   (500 in total)

March 22nd speaking at SDRCN Conference Stirling

April 19th 2 talks London Alzheimer show (am) dementia carer event (pm)

April   20th speaking at labour party conference fringe meeting

Dementia--Love story or tragedy,Which part will you play

Love story or tragedy we all have our part to play

My mums life was built on a love story ,her love for family and care for and about all she met.Mums  love for my dad,his love for her. Growing up like many family we had  our moments but my mums love always conquered.We where always put first and at all times,mums ability to care for and about all she met was inspiring ,she was magnificent in my eyes and I miss her dearly .I was thinking about recovery yesterday,I don’t think I will ever recover from missing my mum and a big part of that ,the biggest part was all that dementia brought .My mum met my dad one day and they fell in love,so there began a love story and no matter what challenges came our way we always had love to get us through There is a pain in my heart that just wont go away and I don’t think it ever will ,it was just to hard and I felt to helpless to often .Dementia on its own can break your heart.When dad passed away 10 years ago I thought mum would die from a broken heart ,I truly did but what is cruller to die from a broken heart or not remember due to dementia the reason ,the person your heart was broken,but mum had a family and friends to care for and worry about ,she worried and cared for and about everyone and everything,so she put aside or hid her broken heart so she could give her best for all .I cant hide my broken heart ,there was to  much struggle to many days feeling helpless,to little understanding from within and towards us and in my opinion across society around and about dementia My mum like all mums and dads,like all people deserve the right to keep their  life stories closer to love stores and away from tragedies.Society has its own part to play.until we take dementia and the understanding on dementia to the wider society then veering towards tragedy will always be there,until the wider society and the people we encounter because of dementia understand the impact this illness has and their actions have on our lives then the final chapter of our lives and love stories will always be affected   

My heart smiles when I think of the people who helped keep mums love story on closer to on track against all odds during her journey with dementia ,but they where far to few but they will always have a place in my heart for helping a son and his mum get thought the best they could the down side is we encountered to many who held us back, who never engaged who only saw a wee woman with dementia and almost wrote mum off 

,My mum was never just a wee woman with dementia ,she was Joan whitelaw magnificent ,kind and caring and right  to the end her eyes shone with love she  cared more about us than many cared about her

Love story or tragedy what part will you play in the life of others

Tommy             

inspired at Caledonian University -Thank you

I would like to say a big thank you to the team at Caledonian University .especially Andy Lowndes ,Margaret Caldwell   and last but not least  the 3^rd year mental health students

I was a guest speaker there this morning and as a son I am grateful for opportunities like this and for the chance to speak about my wee mum ,dementia caring and the life stories and hope in some small way help raise awareness and understanding 

Thank you to all the students for the kind reception .Kind words and questions

Thank you

Tommy WhitelawDementia Carers Voices

Link to newsletter and survey dementia carer voices

Link to newsletter and survey dementia carer voices

I have been collecting life stories for the last year to raise awareness ,bring more understanding and help inform I hope future policies and strategies I hope if you have time you can help add to the life stories by filling in the survey below

Please also find a link to the dementia carer voices /Tommyontour newsletter

dementia carer voices  survey   http://www.surveymonkey.com/s/V7SYL2G  thank you . Tommy collecting life stories thoughts an opinions

Dementia carer  voices  newsletter http://www.alliance-scotland.org.uk/fortnightly_updates/view/22/

Tommy 

having stand at DSDC and Big Lottery making life easier day Feb 26th

DCV stand at DSDC and Big Lottery making life easier day Feb 26th

Attending and having a stand at   the DSDC and Big Lottery making life easier day Feb  26^th

Hi

I will be attending and having a Dementia Carer Voice stand at the Dementia Services Development Centre at the University of Stirling and the Big Lottery present Making Life Easier a free information day for informal and family carers of people with dementia in the Lothian area.

Tuesday 26^th February 2013

9.30 am – 3.30 pm

Murray field Stadium Edinburgh EH12 5PJ

• • Sally Magnusson, TV presenter and author will speak about her experience of caring
• • Lunch and refreshments will be provided throughout the day
• • Information stands from local organisations that help
• • “Drop in” sessions with a specialist dementia nurse and presentations from experts, professionals and carers
• • Quiet room available for people with dementia and carers to rest during the day if needed

Jackie Killeen, Director of the Big Lottery Fund Scotland will welcome you to the event

You can get more details at the links below

http://dementia.stir.ac.uk/Lothiancarers

With thanks to all the team at  Dementia Services Development Centre at the University of Stirling for inviting us along

How do you mend a broken heart? Dementia mum and me

How do you mend a broken heart? Dementia my mum and me

Dementia alone will eventually break you heart .It most certainly has broken mine .I have had my heart broken before, but not like this .My kind caring wee mum whose ability to care for and about all she met was an inspiration .No one deserves this illness its cruel and all encompassing .My heart was not broken only since mum passed away but had been for long time .No matter what dementia threw at my mum no matter how many tears I cried as her son, and on the days where it felt to hard and mum was facing so much more than me ,she could make it better with a smile ,a stroke of the hand and greatest of all a smile from her eyes as if to say ,you are ok son ,you are doing ok .Sitting here today with more time to think than I had before just confirms that we where never really ok .we where stumbling and falling together .People say oh you cared for mum but that is only half of it mum was still caring for her son ,you see that’s what she done she gave all she met the best looking for nothing in return and .My mums journey with this illness is over and I am left with a heart that is so sad inside .my wee mum like so many other deserved a bit better and better than I was able to give .So I will take leaf from my mums book and answer the question I asked at the top of this page .how do you mend a broken heart .

That all who are facing this illness or in the future will face this illness are treated with understanding ,kindness ,dignity ,respect and given the best of help and advice and I hope anyone who ever needs help ask as quickly as they can and if the person they meet at home ,residential care or in a hospital has even just q hundredth of the kindness that was my mum they will be in very safe hands AS I WAS ALL MY LIFE,EVEN DEMENTIA COULD NOT TAKE THAT AWAY

TOMMY

Dementia, my film takes 8 minutes to view, 2 sec to share and 5 years of a broken heart to make

Dementia, this is my film it takes 8 minutes to view, 2 sec to share and 5 years of a broken heart to make

 This is the link to my short film with carers sharing their experiences .I hope you can view and share

Than you

Tommy  

Short film shown at parliament http://tv.enterprisescreen.co.uk/watch?v=347

Today speaking 3rd year Mental Health Students, Caledonian University

Today  speaking 3^rd year Mental Health Students, Caledonian University

Hi

Today   I have the privilege of speaking to 3^rd year mental health students at Caledonia University,the first of 3 talks over the next 3 weeks .This will be followed by 1^st year mental health on February 20^th and then 500 Nursing students on March 12^th .I look forward to speaking about caring for my wee mum the letter I receive and people I Have  met on my Tommyontour campaign .This fits in with my real passion to speak to the next generation who will be involved in our care, I have been contacted by some of the students who attend the University and their passion and understanding inspires me .I also met a few a while back when I was a guest speaker at the memories FC event a project by the University in Partnership with Alzheimer Scotland an event in my eyes that was a triumph of involvement and inclusion

With great thank you the University in particular Andy Lowndes .Margaret Caldwell, Lesley McNab,Jackie Gillespie and the last but my no means least  Students  

I hope I can in some small way inspire them as much as they have inspired me by inviting me along   

#gcucarervoice

Tommy

The loneliness inside,

The loneliness inside,

It has not been the best of evenings ,there is a loneliness and  sadness inside that catches me out some times ,We where dreadfully lonely  over the last years caring fr my mum and I felt so helpless so often .Even once my campaign  got going I would go out meet people do talks and raise awareness and that was for mum and all who face this cruel illness and it is a cruel illness .I was looking through my photos on my phone tonight ,MANY of them taken over the last months of mums life ,and I took them on days when I thought ,mum you doing so well today we are doing ok .Now looking back I can see in all its detail the toll taken on this magnificent woman and It has hit me so hard .I started crying tonight and it feels as though it might never stop .I just miss my wee mum .I miss my wee pal and  I never stop missing her ,nor will I stop this awareness campaign till people get better than mum did and families get better support understanding and help than we and to many others have had ,and I know this wont be the last time I cry myself to seep ,but then my mums is worth crying for

Tommy

Its OK TO ASK- starting A new carer engagement film with NHSGG&C –CHP

Its Ok to ask  starting  A new carer engagement film with NHSGG&C –CHP  

Hi

I will very shortly (beginning March) starting working on a new carer engagement film with NHSGG&C – CHP ,the ALLIANCE AND Enterprise Screen .This film I hope will try and help with a struggle I personally faced whilst caring for my  mum .Asking for help and who to ask for help .My dad was a hard working welder and asking for help along did not come easy we are a proud private people at heart .this led to us nearing a crisis point from not wanting to ask to being to lost and in desperate need of  help. I personally wish I had asked for help. sooner .As a campaigner I campaign for better understanding ,and respect and dignity to all, but alongside that I feel it’s a tragedy to not know how to ask or about help that is available  I hope in some small way this film followed by some road shows will reach out to families and avert them reaching a crisis. We should at all-times have the best of help and guidance at our fingertips. I am grateful to all the partners involved in this project and it also forms part of the message in this campaign being able listened to and part of ,and I thank NHSGG*C for taking the time to meet with listen to and involve a son and carer

Thank you

Tommy       

Tommy Whitelaw
Dementia Carers Voices

A letter changed my life,our life stories can bring help and understanding Life stories why I believe in and collect them

Hi 

This campaign is based on the life stories thoughts and opinions of people and there are a few reasons why I both collect and believe in them, the stories collected to date have been part in much awareness dialogue with Government Local authorities including motions at councils and report by SW departments, They have been the heart and soul of many talks across the care sector ,Universities colleges ,carer centers and beyond I am now working on an Academic paper and a new carer engagement film ,All if which I feel are important and in their own small way helping raise both awareness and understanding .all the afore mentioned are based on our live in our words. More importantly I collect life stories because our lives matter .My mum like to many others was to often was viewed upon as just a wee woman with dementia and all that had gone before forgotten or ignored the greatness of her life given to little value ,time or discussion and that fills me with great sadness .If we use only the journey of dementia as a starting point ,then how can we truly help or understand the best way to interact ,encourage and allow people the respect dignity and time they deserve .so life stories I HOPE  help tell the whole story and  help show the impact dementia has on many people lives .if we understand the impact then we understand best how to limit it and give families the best support to love ,cherish and succeed  

A letter changed my life

My personal reason for collecting letters and life stories is the fact a letter changed my life .Before coming back to Glasgow to visit my mum a visit that ended with my mums diagnosis of dementia and the beginning of a five year struggle to understand and cope .My then long term girlfriend and I had Just split up in fact I was coming home for mum to put her arms round me as she had done so many time before and made things betters .For the first time I had to truly put my arms round mum as she was in more need of help and support than I was .Both my girlfriend and I traveled constantly with our work and for the last years together and in so many ways my girlfriend tried to tell / discuss with me how things had to change ,how we were getting older ,how we never spent time together, along with settling down and children. The more she tried to discuss lour future the less I heard .the more she shouted ,whispered even in the most intimate of discussions the less I heard I always seemed to avoid a discussion after all I was happy I was traveling ,having a great time and always used the same avoidance I am just home or I when I get home in 3 months we will fix things .I got away with this for too long .On my last journey away ,I was going to America for 3 months I opened my suitcase on arrival and inside founds a letter ,a letter that broke my heart but a letter that showed the impact my actions ,my inability to listen ,me selfishness and many other actions where having on someone’s life. Someone I loved, someone who gave me so many chances and tried in so many others ways to ask me to just listen or try and understand and on reading that letter I understood more about myself than I have had before and she was right I was affecting and holding back her chance to live the best she could

So a Letter changed my life, that’s my personal reason for believing in and collecting them I hope to take them to all who need to read them to try and help them understand how the actions of others can have such and impact on lives and the actions of others can  also change lives for the better and to truly help someone you have to take time to listen and understand them

You can share your story at tommy@i-woz-there.com

Tommy Whitelaw
Dementia Carers Voices