Just one of those days ,

Hello

The last few weeks have been incredibly and thankfully busy .I have had  talks or meetings just about every day for the last 3 or 4 weeks (months really ) ,on a few occasions a couple talks in the same day

I kind of caught up with myself  today and it has been quite a sad day ,the truth is I just miss my wee pal ,it was just mum and me for the last years , facing all that dementia and caring brings ,the good days ,the hard days ,the happy days the sad days ,but always managing to pick each other up when times where hard

That was my wee mum to a tee ,even till the end that smile ,the stroke of the hand and on the days when I thought we can't do this this is to hard ,my mum changed it and propped me up to carry on .
And not even for her it was for me to make sure her big boy got through this even if she would not

It's been a tearful day today thinking back to chance missed and things that could have been better
And that's the thing that stands out the happy days are never as happy and the sad days are so sad it hurts .sitting here alone just now feeling sorry and sad would never have lasted as long as it has today ,my wee mum would had changed that with a knowing smile or a stroke of the hand

I just miss you mum ,I miss you so very much


Tommy

Holiday weekend, still not sure what that means . mums Smile no longer here

Holiday weekend, still not sure what that means

Firstly I wish all a lovely  holiday weekend .I was out today doing a talk then filming and on my way home on the bus the chatter from people planning their long weekends made me smile As I got home tonight as always happens my wee mum was on my mind,I have yet to open this front door without a sadness hitting me is some way shape or form

5 years of dementia and caring ,weekends, weekdays, bank holidays ,holiday weekends they all blended into one.We could not differentiate .they where just days to try our best to get through,And that’s the
great sadness.of course we had good days ,we certainly had love but looking back they where just a fog of  not understanding,loneliness and fear. This is something we have to change, we have to make the hard days better for people, and we have to make the days caring for a loved one  not something we try to get through just to get through tomorrow. but time to love and cherish Even now 8 months after my wee mum passed away weekends and week days are all the same to me

It was Easter last year that a big change came to us and mum ,as they had so often ,but this time I knew in my heart there where not many more big changes mum could take. Not long after Easter  my mum was confided to her room and bed .I took a wee photo that day as I gave mum her wee egg knowing dementia and time was truly against us and it would be our last easter together .and I miss her sitting here just now I miss mums kindness her love ,her care and the great mum she was.The the loneliness we felt over the last years was in many ways  a rehearsal for how lonely life can be when a best pal is no longer here

Tommy

Joining steering group NHSgg&c acute services June 6th

Hi 

With great thanks to Nhsgg&c in particular Con Gillespie  for inviting me to join the steering group with lead nurses senior staff and carers , " improving acute services " 

I have been a guest speaker for Con an many occasions over the last months and feel inspired by his enthusiasm to engage with and involve carers on future strategies and training 

I feel privileged to be involved 

Many thanks for agreeing to take part in  the above work. The plan is  to see if we can develop a working model to help improve the level of engagement and therefore improve experience of carers when family members with significant levels   are admitted to our hospital wards.

The meeting will be held on Thursday 6th June 2013, Royal Alexandra Hospital, University

.As I have said to you all it is vital that carers and senior ward staff work together to develop this, so that we can devise something that facilitates good relationships between staff and carers and helps meet their needs in a realistic way which accounts for the activity in our  wards.

I am hoping that by the end of the meeting we will have good positive way forward with something tangible that we can test in the wards and then evaluate.

I am really looking forward to the meeting, so that we can use all you expertise, knowledge and experience in helping to improve this key aspect of patient centred support.

Speaking mental health students Dundee University June 4th

Hi

With great thanks to mike Ramsay lecturer on mental Health at Dundee Universty for inviting me to speak to mental health students on June 4th .I will also be speaking to nursing , mental health and social care students there over September and October ,but an opportunity has arose today due to a cancellation and I have very quickly offered to step in

I happen to be in Dundee that morning to meet with the Care inspectorate so seems like it was meant to be

Thank Mike and all connected to the universtiy for the invite

Tommy

Presentation to NES/SSSC Dementia Programme Board August 8th

Hi

With great thanks to Susanne forest and fellow board members for allowing me to do a presentation to  NES/SSSC Dementia Programme Board ON august 8^th on my awareness work and the Dementia Carer Voices project

NHS Education Scotland do great work on promoting excellence and I look forward to speaking about caring for my mum ,the letters I receive ,people I meet along with updating on the projects I am currently working on and future hopes and dreams   

Thank you Susanne and fellow board members for this opportunity

You can get more details on the work they do at the link below

http://www.nes.scot.nhs.uk/

attending Alzheimer Scotland Dementia Connections conference June 3rd

I will be attending the Alzheimer Scotland Dementia Connections conference on June 3rd at the Crown Plaza hotel Glasgow .I am looking forward to day of discussion and education along with meeting old friends and new friends I have met along the way 

you can get more details below 

Alzheimer Scotland’s Dementia Awareness Week conference provides a unique opportunity to hear how the integration agenda, a key priority for the Scottish Government, will impact on the lives of people with dementia, their carers, partners and families. Much has been achieved under the three years of Scotland’s first National Dementia Strategy and Alex Neil, Cabinet Secretary for Health and Wellbeing, will be launching the brand new National Dementia Strategy which will run 2013-2016. 

Presentations will address policy, plans and progress in the following areas:

• Bridging the gaps between health provision, social care and other forms of support for people with dementia and their carers
• Creative and innovative approaches to dementia care and support
• Building and supporting community connections for people with dementia, their carers, partners and families
• Perspectives on dementia connections from the UK and Europe

This will be a packed programme with key speakers from the field, including:

• Angiolina Foster (Director, Health & Social Care Integration – Scottish Government)
• Garry Coutts (Chair of the Board – NHS Highland)
• Dr Margaret Whoriskey (Director – Joint Improvement Team)
• Martin Sime (Chief Executive - SCVO)
• Prof. June Andrews (Director – Dementia Services Development Centre)
• Jean Georges (Executive Director – Alzheimer Europe) and Helga Rohra (Chair – European Dementia Working Group)
• Scottish Dementia Working Group
• National Dementia Carers Action Network

There will also be practical workshops addressing specific issues, such as developing the role of Allied Health Professionals in bridging the gaps between health and social care (NOW FULL), supporting inclusion and activity via the Dementia Dog project (NOW FULL) and engaging with people affected by dementia in the LGBT community (LIMITED PLACES AVAILABLE – PLEASE SEE BELOW).

Providing inclusive services for LGBT people  – workshop at ‘Dementia Connections’ conference

For the love of mum -8 months ago today my mum Joan Whitelaw Passed away

Today will be 8 months since mum passed away and in many ways the prison sentence we felt towards the end continues, but now it continues alone.  We became prisoners of Dementia in our home, were we were isolated from society in many ways.

Some people say time is a great healer; I just don't believe them I really don't.  Time just gives me too much time to think, I try to keep as busy as I can increasing my awareness work started, which from this house whilst caring for mum.  But that's where it stops every other hour is a return to isolation and it’s hard to break that and that's what we faced, how we lived for many years

My social skills seem non-existent and I can stand in a crowded room and speak from my heart about the greatness of my mum, the challenges we faced, the joy in her smile, the pain in my heart, the strength mum gave me and the helplessness I felt I don't seem to know anything else.

As hard it was my wee mum always made it better, that's the greatness of mums they make sure their children are OK and even if they are no longer children and supposed adults like me.  That's what I miss, her friendship, smile, kindness, strength and love.  I most certainly do not miss Dementia not the last years, no not this son.

I miss her love as she became my best wee pal even though I used to have so many, as mum did also.  But Dementia, loneliness and isolation took their place.  I suppose I just might be feeling sorry for myself tonight in this house that no longer feels like a home, but I will get up tomorrow to keep my promise to my mum to raise awareness a promise for the love of mum.

Tommy

No one ever asked ,Joan Whitelaw , My magnificent mum

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  

my filmed interview caring for mum - Acute services nhsgg&c ,our story

Please see below the link to my filmed interview for acute services training nhsgg&c

Caring for mum our story 

http://www.youtube.com/watch?v=36_Y_3y0yXM



With great thanks and respect to Dan Harley and Con Gillespie

I was interviewed as part of a DVD on caring about life caring for my wonderful mum Joan Whitelaw

 Link to  My filmed interview caring for mum , acute service training http://t.co/JCCONYwgmY nhsgg&c #formum #dementia 

Dear Tommy,

I wanted to update you with more information about the launch of the Patients’ Stories Library films including your interview.

The Patients’ Stories Library DVD for NHS hospital staff will be launched during Carers week (10-16^th June 2013). It will be comprised of 5 films including your interview and a film where Rory Farrelly explains what it is that we are trying to achieve through the use of patients’ stories as a way of learning how we can provide an even better service.

We plan to have a set of linked communication activities in the lead up to and during Carers week and distribution of DVD discs will take place before then to fit in with the timing. Your film will also be used by our Acute Health Improvement Team as part of an information display on the theme of carers that will tour several acute hospitals sites.

Many thanks again for your contribution to this,

Best wishes,

Dan

Dan Harley

Report ALLIANCE Scotland Conference Being Human a human rights based approach to health and social care Scotland

Hi 

please see below the link to the ALLIANCE Scotland report on their annual conference   "Being Human a human rights based approach to health and social care Scotland "

Dementia carer voices had a workshop at the conference you can read more at the link below

thank s to all involved for a wonderful day and to Andrew and the team for producing and sharing the report at the link below 

tommy   

: http://www.alliance-scotland.org.uk/news-and-events/news/2013/05/alliance-annual-conference-2013-being-human-event-report-published/

Dementia My Motion Passed Glasgow City Council ,can you help

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 earlier this year  to set up the  Glasgow City Council Dementia Working Group.We have had 2 meetings to date and meet again May 17th then again in July 

This motion was passed on the lfie stories of familes who sent me letters and e mails ,our lives in our own 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

The kindness of people-most of whom I have never met, thank you

Dementia and caring brings many struggles and of course moments of joy, love and inspiration. My mum inspired me many times and amazingly at the most crucial moments when I was really struggling to cope and understand. That kind of sums it up, there is my wee mum facing all that dementia brought and over the last months nearing end of life, but always able to comfort her son and get him through it.

 As a campaigner I am trying to raise awareness, understanding and empower people to help prevent families reaching crisis situations. All too often on our journey we were lost, lonely and isolated but looking back my heart can sometime smile and this is thanks to the kindness of the special people we dealt with.

Like the District Nurse who put her arm around me one day when I was in tears and said “You’re doing ok Tom you’re doing ok.” I can’t tell you how much I needed someone to do that as I was scared of what was happening and scared of letting my mum down.

Or the Nurse who was involved in the last months of my mums life when she could no longer swallow and had been in hospital for a few days. On her returning home I was struggling to get my mum to eat or take fluids and the nurse said call me if you have any problems, so I did and she took the time to pass by after work to sit down to show me again what to do, holding mum’s hand and putting us both at ease.

There is an important lesson here, its people who change lives through their help, kindness and understanding and it is important to celebrate this so that others can take notice and follow.  A big part of my talks is celebrating the people who made our experience better, even if was just for a day. Then there are the amazing carers and families who I have met out and about or online on Twitter or Facebook who have shared their life stories and are the inspiration behind my campaign.

Over and above policies, strategies or reports it’s people who have the potential to transform people’s lives throughout what can be a very difficult and lonely journey. I still smile to think of the special people who helped me and the thousands out there helping others in the same manner, most of whom I have never met.

Tommy

Thank you thirdforcenews.org.uk for the article

TOMMY WHITELAW: Care campaigner, Tommy on Tour

BACKCHAT — BY SSMITH ON 16/05/2013 10:18 PM 

IT’S the letters that mean most to me. They tell stories of the people behind an illness that eventually took over their lives. But the letters are all memories and it is those memories I’ll fight to preserve.

Tommy on Tour started after my own mum, Joan Whitelaw, was diagnosed with vascular dementia about six years ago. I was a merchandiser for some of the world’s biggest rock bands and spent most of my time abroad. But when I came home from tour one day to see my mum, as I never failed to do, my whole life changed.

Diagnosed with dementia, she needed full-time care. Those five years were tough, the worst of my life but when she died in September last year I reflected on what a wonderful person she was, a person who created memories for us all that an illness could never erase.

Tommy on Tour is about raising awareness for dementia and to preserve the memory of people like my mum and to support the people who care for loved ones. For five years I felt isolated. I didn’t know what help was out there or who to turn to and often it felt like a battle.

So I give talks in schools, in care homes, in universities and to MSPs across Scotland raising awareness and saying that you don’t have to be alone. My message is simple: this army of carers in Scotland are worthy of support but are desperate for it at the same time.

In some ways this campaign is my own therapy and a catharsis too. People get in touch to tell me how my story inspired them to seek help or how by realising others are in a similar position, they are not isolated.

When I go home at night, to the house I shared with my mum, that’s when the loneliness is worst. It makes me think of other carers and how they cope. I just want to tell them they might feel alone but they are not. There are thousands of others in Scotland who can empathise and understand their situation.

www.tommy-on-tour-2011.blogspot.co.uk

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My mums name was Joan Whitelaw - the awareness campaign goes on # dementia

My mother’s name was Joan Whitelaw. She was born on the 15th of July 1939. She had been: a daughter, a sister, a wife, a mother, a friend, a workmate, a neighbour, a valued member of her community, and a true, honest and dignified lady.
Like so many others of the 86,000 people across Scotland, however, she was labelled as ‘a wee woman with dementia,’ a condition we, at this time, have no cure for. As a result she was written off, given no value and most certainly not given the respect and care she deserved.
Six years ago, I walked out of a hospital with my mum after her diagnosis of dementia and we walked out alone, with no support. At another critical moment on our journey, an evaluation of mum’s condition and medication, we were told “there’s not much more we can do” and “it’s time to consider residential care.” Again, we left alone.
We were alone for much of our tragic journey and for this reason I am committed to raising awareness of the impact of dementia on families, and the vital role played by carers, so that nobody else in Scotland should have to go through the caring journey experiencing the loneliness and isolation that I did.
Finally, I would like take this opportunity to thank all of the carers, families, and carers’ centres who have inspired and supported me over the course of my awareness raising campaign.