Wednesday, 31 October 2012

Busy day,yesterday but home again to emptiness and despair

A Busy day, but home again to emptiness and despair
Today was another busy trying to build on the awareness campaign I started with my mum by my side ,for the last year I have been out during the 15 hours cover /respite I had each week doing talks and collecting life stories .Each time before  I left I made sire my mum was settled and Ok  and always had my wee mum who was the biggest part of my story and campaign to come home to and tell about what hat happened each day and how proud I was to talk about her life ,before and including her struggle with Dementia ,Today I was up early and off to take part in a project at my local carer center as a son and carer at 8am ,I then pooped into the PRTFC  Glasgow office to update and discuss my future plans ,I then headed of to Caledonian University to discuss some ideas and future projects we are working on and some that I can be part of as A son and Carer I then met with Lisa from East Renfrewshire to chat about me being a guest speaker at the carer group on Nov 30th and the day disappeared along a feeling that I am keeping our campaign  growing and alive ,but as I walk down our street and approach the house as Ii have always done I look up to my mums room in darkens ,in fact a house in darkens and all that I have tried to do day is replaced by a darkness emptiness in my heart that my mum is no longer here and I have yet to walk thought this door without crying ,I go out and raise awarerness with pride but return home with sadness, and the truth is I don’t know if I will ever walk towards this house again without looking up at my wee mums room or feeling sad and tearful as I open the door ,but then A mum like mine is worth crying for and a mum like mine will always be missed and a mum like mine can never replaced .how lucky I was to have a mum like mine


shortlisted and attending the roses media awards in London a week tomorrow

With great thanks to Independent Age and Barchester care, my wee Tommyontour campaign has been shortlisted for a roses media award for coverage of issues around dementia and /or social carer .I have to say I very proud ,with my wee mum passing away 5 weeks ago and this campaign being started with her story and added to by so many others sharing theirs ,I feel its important to go down and represent my mum and all who have been the heart and soul of this campaign (I have not been out in years at night time never mind stayed out over night so it all a bit of nervy occasion )
Thank you
Good luck to all the others shortlisted in this and all the other categories
 Best coverage of issues around dementia and/or social care (Barchester special award)
  • BBC1: Panorama - Undercover: Elderly Care
  • BBC2: Louis Theroux - Extreme Love: Dementia
  • Tommy on Tour: One man's mission to raise awareness of dementia (blog)
  • The Independent: Dealing with dementia: "My dad was treated like lost luggage on a carousel," by Arifa Akbar
  • BBC Radio 4: Today - Adam Brimelow reports on a new approach to looking after people with severe dementia
  • D4Dementia - dementia blog

Tuesday, 30 October 2012

Strictly awareness raising thank you Zoe Ball for sharing my film and blog on Twitter

With great thanks to Radio 2 DJ and Strictly Dancing it takes 2 hosts Zoe Ball for taking the time to view my wee film and blog and for sharing with her followers on twitter
It was a lovely gesture to share a sons campaign with so many followers, Strictly raising awareness ,with great thanks

Today meeting Emma from PRTFC ,then Caledonian University re future projects

Good Morning

I am off to meet Emma from the Princess Royal Trust for Carers this morning to chat about and update on my campaign to date and future plans .I am hoping to get some involvement from the PRTFC on some of my ideas .I have also visited many of the local carer centers they are involved  with over the last year and with more to visit before the year is over.I will then be popping into meet Andy from Caledonian University to chat about a reminiscence project he is working on to be held at Hampden at the end of November  (more on that at a later date).I hope to be involved in some small way with possibly speaking and/or  having a small stand at this event

Attending Carr Gomm AGM ON Friday Nov 30th Edinburgh Corn Exchange

I will be attending the Carr Gomm AGM on Friday Nov 30th at the Edinburgh Corn Exchange. Carr Gomm have been great supporters of my wee awareness campaign and Irene ,Christine and the team who have an office at the top of my street have become great friends and have given me both personal advice and the use of their office anytime I need .i have also been a guest speaker at their last two forums and I look forward to Friday to show my support to people who have been great supporters of my wee campaign
You can get more details on the work they do at

radio Interview caring for my mum, my campaign and life stories on BBC Scotland Nov 7th 2pm


Well yesterday I was interviewed at home about my mums journey with Dementia ,my life as a son and carer and my wee collecting life stories campaign ,I  was interviewed by Sally Magnusson who I have great respect for In fact I appeared on Sally’s show the day before I left for my walk round Scotland and have been touched by Sally own story about her late Mother .the interview will also include some of the incredible people who sent me life stories reading from their letters and with expert comment from Prof June Andrews who I have also got to know through my campaign This was a look back at the struggles we faced ,the joy in amongst the struggles and why I started to and still collect life stories .I also feel I have to pay tribute to all the people who have shared their life stories with me and at this time with the Deputy First Minister who I took the life stories to and has agreed to allow this to be an on- going progress via my dementia carer voices project and in Glasgow where I live to social work and Glasgow city Council who have started a dementia working group after reading my letters this is something I hope to take to other local authorities I believe that life stories are the best way to bring more understanding on how we live and feel and I believe working with the Government authorities are both the best tribute and avenue to take the letters and lives of families like mine along with talks at NHS events about caring for my mum and the life stories
I am moved and inspired by the families who send their stories and by the willingness of people like Nicola Sturgeon to listen and be involved and with the guidance and mentoring from the Alliance Scotland through this new voluntary project Dementia Carer Voices (supported by the Scottish Government) is all the reason I need to take this from a campaign run from my bedroom to a project the letters deserve  and feel better equipped to give the life stories the respect they deserve the time they deserve and to the people who need to read them


Monday, 29 October 2012

First meeting Glasgow City Council Dementia working group Nov 27TH at City Chambers, you’re words can help others

The first full meeting of the Dementia working group based on the motion I had passed on the life stories of others will take place at the City Chambers on November 27th .this group will be made of Councilors,NHS SW ,representatives from dementia and caring organisations a carer from the 4 compass points of Glasgow and myself (representing my 5 years caring for my mum and the life stories I Receive
This motion was built and passed on the words and experiences from carers like me and not to forget my mums story that I have told all across Scotland at events and through all forms of social media ,TV ,Radio and newspapers ,this is the beginning of  project to look at dementia and caring across Glasgow and I hope you can help me build on the life stories I have to date to allow carers the privilege of telling ,sharing their experiences in order to help others I have great respect for the work funded organisations do but this was always about people first and at the center
I hope you can help me collect more life stories to make this all it can be and let families be the biggest part of deciding the outcome along with keeping this about people and true to the motion that was passed You can share thoughts and opinions at or send to Tommy whitelaw 29 crosslee street Glasgow g52 1sl This started with Joans story and was added to by so many more and all those stories together can decide a better future and outcome
I hope you can share this and help keep Joans and others stories true and alive

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.
 thank you

With thanks to all the Delegates, Msps, councilor’s visitors and exhibiters who have got in touch since me 3 day stand at the SNP Conference in Perth

Two weekends ago I had a wee Tommyontour /Dementia carer voices awarerness stand at the SNP conference in Perth .Firstly I would like to say thank you for allowing a son who cared fro his mum for 5 years the opportunity to meet so many people and talk as a son about caring for my wee mum and to all who have made contact since I am looking forward to opportunities mentioned to visit so many areas across Scotland to show my film and talk about Dementia and Caring .Thank you for taking the time to stop by and for getting in touch
The awareness campaign continues and grows

Sunday, 28 October 2012

Looking through my mum’s belongings and its plain to see when we felt the full force of Dementia

I have been pottering about the house today ,that’s kind of what I do when I am not out trying to build on the awareness campaign I started in my mums name and with mum by my side I have been looking through as best I can and through a flood of tears clothing ,belongings’. photos and trinkets .And the truth is there is not much look through that’s a mark of my mums life .always giving ,always loving, always caring and always working hard and always for others .and the tears are for the clothes she never got to wear ,the things she never got to do as she reached the age of retirement and a time when all she done for others should really have been done for her .And the photos up till dementia took its grip always surrounded by people she loved and who loved her .always with a look of love and care towards and for in her eyes and always with a beautiful smile and then its stops almost completely .we are left with clothes never worn ,and photos documentation a lonely last 5 years but always with a look of love for others no matter what she faced or toll that was taken
That’s one of the great  sadness’s  of dementia and i guess most long term condititons  the loneliness, isolation the lack of understanding .and with all we cant cure yet with this illness ,surely we can cure them .Cant we ?

Today recording an interview about caring for my mum along with some families who sent me letters for public broadcast Nov7th

Tomorrow recording an interview about caring for my mum along with some families who sent me letters for public broadcast Nov7th
I will be doing an interview tomorrow at home about caring for my wee mum Joan for public broadcast (radio) on Nov 7th .This was organised before my wee mum passed away on September 22nd and I feel its important  that I fulfill this commitment along with all the others I have been doing and have still to do .you will also hear from some of the incredible families who have sent me life stories to date, reading from the letters sent to me .This is an awareness campaign and the best way to raise awarerness is to talk about it .something I have been doing for the last year and a half and will continue to do at every opportunity I can as a son and to all who care to listen

Saturday, 27 October 2012

Tommyontour Academic paper on Dementia and caring with Caledonian university ,youre words can you help?

I met last week with some lecturers from Caledonian University of Nursing and social care health and Science and we have moved forward on producing a paper ion the life stories I receive (pending some funding) this paper will be produce to look at Dementia and Caring and be used for education and to inform on policy and strategies along with a report to the Government and local Authorities, NHS Social works and the voluntary sector and beyond ,I as always will be offering my services throughout this project as a son and on a voluntary service .if you would like to send youre life story ,thoughts or opinions please get in touch you can e mail your story in order to help other to

Thank you

Friday, 26 October 2012

Having a Dementia moment, is that the best way for someone working in care to describe forgetting a name?

I don’t want to become precious or touchy or difficult ,on my travels last week raising awareness I was sitting in an office waiting to speak to someone who works advising carers for a chat about my campaign .Whilst waiting the person got mixed up with the names of someone being discussed and proclaimed in front of me sorry I was just having a dementia moment .You see I sad goodbye to my mum 4 weeks ago after 5 years of dementia and caring and our dementia moments where not mixing up the odd name ,they where for the last years forgetting 73 years of a life ,loves and memories. dignity and respect being attacked and affected ,being unable to talk ,walk ,eat or swallow fluids and confined to bed for the last 6 months ,and how I wish it was getting a name mixed up ,as I could have helped with that so easily. this for me is the biggest hurdle we face with dementia UNDERSTANDING AND RESPECT ,we need to start disusing dementia more openly for all that it is .otherwise families will suffer behind closed doors and across some of the care Sector Dementia is not forgetting where the car keys are for 10 years of your life  or mixing up the odd name its much more than that as I have witnessed for 5 years and will struggle for ever to recover from .we need to get the people who claim to and should know better to be more understanding as well as the wider society otherwise people will never get the understanding ,respect ,help and treated with the dignity they deserve
Having a dementia moment ,I am having I think you need more training moment for the person concerned   


Thursday, 25 October 2012

The loneliness that night time brings

I remember sitting a few months back about this time of night and my wee mum was asleep and posting on my blog about the loneliness and isolation that caring brings and how  lonely and alone we where and felt for most of the journey dementia brought to my mums life and mine as her son and carer.  The affects of dementias toll towards the end where all to visible to see and feel and where for the last few years with all the challenges, obstacles and issues that we cant change easily as we are still in the dark in so many ways about this illness about cause, medication and cure ,.why as a society do we allow loneliness and isolation to play such a prominent and damaging part not only with dementia but with so many long term conditions ,why do we allow this mostly invisible painful part of caring to allowed to be such a big part of our life stories .we can cure loneliness and isolation. and I say this knowing I played my part in causing some in our hearts and home ,my lack of understanding created on my part a protective field around us with some, how could I expect others to understand the challenges and changes we where facing if I did not understand them myself for so long It took us almost reaching crisis to find our voice and by that time my mums health ,awareness and abilities where weakened and we where at the point of no return .That’s why its of the greatest importance that we raise awareness and understanding to a wider society ,wider than the families facing this illness and the people involved with our care .As long as wee keep the discussion behind closed doors and with only the people involved when dementia comes knocking then the words loneliness and isolation will continue to have a free hand to play such a big part in our lives ,hearts and home .and it continues to play a part in mine when I wrote on my blog how lonely night was for us that was just a rehearsal to how lonely the last weeks have been without my incredible we mum, we cant at this time cure dementia .but we can cure two of the words that appear in so many life stories I have read and heard from the people I have met  and that does not take funding ,polices or strategies, it tales openness acceptance and understanding
That’s why this campaign will continue and grow as I won’t stop telling our story and the stories I receive as I don’t want anyone to feel as lonely as we felt to often and as feel tonight and certainly don’t want anyone looking back with the regrets I have with so many struggle due to a lack of understanding from within and towards us  by so many from the day of diagnosis to the journey end

What Becomes of the Broken Hearted

I have been trying to keep myself busy since my wee mum passed away 4 weeks ago,trying to put all my efforts into growing my wee awareness campaign I started in my mums name and with our personal story .A story that’s has been shared across the world in many ways and been added to by the stories from many other families facing the same
circumstances ,struggles ,and Joy that we faced Its important I keep this story going my mum and I started together and its important that I continue for all the life stories I have received and have still to receive.Its important as we need more understanding on both Dementia and caring across society.When  doing talks or rasing awareness  I feel strong and that my wee mum is by my side.but like many others i am papering over the cracks of my life .papering over the broken heart that I tried to hide from my mum  during the years caring and witnessing and the  broken heart of watching my mum fade in front of my eyes  over the saddest last months of her and my life and the broken heart I have each time I walk into this empty house and my mum is not hear .So what becomes of the broken hearts  that  so many people have after the intense journey that Dementia and caring for a loved one brings ,sitting here this morning I don’t know Will this broken heart ever heal ,right now I cant see or feel it

Wednesday, 24 October 2012

A positive meeting at Caledonian University and a lovely evening with Glasgow South East Carers

I had a very positive meeting today with some of the lecturers at Caledonian University School of health and life science and we have agreed to start the process of producing a paper on the life stories I have received that can be used in both education and taken to police makers .The small matter of funding this to be organised but never let funding get in the way of passion, desire and a need for more awareness and better understanding. I have got this far without funding and nothing will get in my way or hold back the need for this to be done .then this evening I popped over to see Julie Dixon and the team who do a wonderful job at Glasgow South East Carers .I spoke briefly as it was all a bit last minute and they had a few other items to discuss but it was great to do a quick update and chat with the people who attend this group I hope to be back over again soon to update more .thank you for the lovely welcome and chat


Earlier Today speaking at and meeting with carers at Pollok Carers Centre (my local carer center )

with thank to Linda ,the team and all the group who attend Pollok Carer Center carer group i was a guest speaker there earlier today as part of my Tommyontour /Dementia Carers Voices campaign to rasie awareness and collect life stories ,thank you for the warm welcome and lunch and i hope to see you all again soon

This morning  will be visiting, speaking at,and meeting carers and families at Pollok Carer Center .i spoke there a while ago and I am popping in tomorrow to update on my awareness campaign and chat with all who attend .I shall be around from Mid-Day and speaking around 1pm Pollok carers run by the Lovely Linda is my local carer center and Linda was involved with much of the care of my mum and me over the last months and for that I am grateful

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


Greater Pollok Carers Centre
130 Langton Road
G53 5DP

Today meeting with Caledonian Uni team to discuss paper on life stories then speaking at Glasgow South East Carer Center tonight


I am meeting researchers and lecturers from Caledonian University nursing health and  social care science today to discuss and formulize a paper on the life stories I have collected to date and still  to collect .I hope we can agree and produce a paper that tells the story of living with and caring for a loved one with dementia and tells helps bring more understanding on how we live ,feel and the emotional impact we face or have faced .i will then be speaking at    South East Carers Centre (Julie young) for allowing me to pass by this  evening to discuss and update on my wee awareness’ campaign I spoke to some of the group members about a year ago just before my walk round Scottish towns and cities and look forward to speaking again ,updating on my progress and hearing from all who attend

You can get more details on the group at the link below

South East Carers Centre
The Dixon Community
656 Cathcart Road
G42 8AA
Tel: 0141 423 0728


Tuesday, 23 October 2012

The Job Centre after 5 years caring for my wee mum, not for the faint hearted or help with confidence


I stopped working five years ago to care for my wee mum and try and allow her the privilege of staying in her own home and on reflection since my wee mum passed away 4 weeks ago yesterday it was the toughest of task and I failed all to often to cope ,but that is for a longer piece I am writing looking at back at caring for my mum .I popped into my local job center on Friday for some advice and to help with the worry in my mind on how I will keep not only my voluntary awareness work going but how I am going to survive .I have to say it was an experience I do not wish on anyone I was told unless I made myself available for work that day I could not get any advice or guidance and that I should enjoy my weeks of grace as a carer and come on November 20th when my time as a carer comes to an end and speak to them then I am not ready to go to work just yet as I am still coming to terms with losing my wee mum and the 5 years we faced together with dementia and caring but where does that leave me no advice unless I made myself available for work that day ,no understanding that I have been out of the workplace for 5 years caring for my mum no help to re-adjust or gain confidence so thank you DWP for your lack of understanding on caring .I have although been introduced to the Glasgow regeneration agency by my local carer center and on meeting Ann ,I met with a person who understands my position and needs and was very kind and helpful the UK  government needs to think more about caring and life after caring ,just give us a chance

50,000 thanks for viewing our blog and story, more awareness dates added

50 thousand thanks for viewing our wee blog and story, more awareness dates added

A big thank you to all who have followed our story and campaign my we blog about caring for my mum and our awareness campaign broke the 50,000 views mark today .now I do understand that will include many many repeat views and so on but we are grateful for all who have followed our story and for the support along the way .The campaign continues more dates added thank you for the great support,life stories and comments

October 18th      Meeting and speaking with carers, carerslink Milgavie
October 19/20/21st    Tommyontour stand at SNP Conference
Octoberr22nd     Meeting dementia working group Glasgow city council (based on my motion)
October 24th        meeting lecturer’s Caledonian university to discuss planned paper on life stories collected (morning)
October 24th        meeting and speaking with carers, Dixon carers group (evening)
October 25th         meeting and speaking with carers, Pollok Carers (my local carer center)
October 26th      meeting and speaking with carers Inverclyde carer center
October 29th        recording interview about caring for my mum for public broadcast
November 1st Meeting and speaking with carers Glasgow North East
November 7th    public broadcast of interview about caring for my mum and the life stories
November 8th   attending rose’s media awards London Tommyontour on shortlist for award
November 28th meeting and speaking with carers Arbroath carer center Angus

More dates for December and January to follow
 thank you

Monday, 22 October 2012

Meeting earlier today re Dementia working group Glasgow City Council based on my motion passed back in February

I was out earlier this morning for a meeting at Glasgow City  Council with Councilor Kerr  and Ann Cumming from social work to discuss the new Dementia  working group being set up based on a motion I Had passed last February on my campaign and life stories there was a wee bit of confusion at first re the meeting but I had a long chat with Councilor Kerr about a variety of topics mainly caring for my mum .Any way we eventually sat down and discussed the working of the group and project .I  will post more details once sent what I can say is that the life stories I have to date and still to receive will be part of this group and I will represent the life stories and my 5 years caring for my mum as best I can so if you live in Glasgow any thoughts and opinions are welcome in order to help others .I also hope to invite some of the carers I have met to future meeting once a formula is in place to take part .this motion was passed by the words of people and should be directed by people and not only the opinions of service providers who are funded by the council and social work
People at the center and I will protect the voices of carers at all time in this motion
with thanks to Cllr Kerr for his time (again) and support along with Ann who has been great help as my campaign has grown

Sunday, 21 October 2012

With thanks to Duncan Ross for speaking about his dad, my wee mum and the campaign during his resolution on Kinship carers

A big thanks to Duncan ross  for speaking so bravely and emotionally about his dad and mentioning  my wee mum at the end of his seconding a resolution on Kinship carers at the SNP Conference today and for the lovely round of applause the delegates gave both his speech and for my wee mum .Duncan also kindly got in touch a few months back via twitter and shared his story about his dad on my blog in order to help  raise awareness I speak about my mum at talks all the time ,but hearing someone else speak about her brought me to tears and I had to leave the hall for a wee cry
Thank you for sharing you’re story previously on my blog, today in front of the conference and for the kind words about my mum and campaign
Thank you Duncan

Today 1st meeting of GCC Dementia working group on my motion passed back in Feb at City Chambers

Back in February I had a motion passed at Glasgow city council to look at dementia and caring across all areas they cover, on October 22nd the first meeting will tale place to set up the working group with the view to the workings of this group and taking the findings to the Scottish Government at the end of the project The first meeting at the city chambers will be with Cllr Kerr Ann Cumming SW, Anne Marie Simpson and I to discuss how the project will run and start a working process with the inclusion of carers and carer representatives across Glasgow
My life stories will form part of this paper and I will be travelling to meet carer groups and families across Glasgow over the next weeks and months to discuss this, you can send you’re thoughts opinions or life story to  or get in touch and I will come and meet you
I hope you will get in touch and make this all it can be and hope you will share this with others
Thank you
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.


3rd day raising awareness at the SNP conference, overwhelmed by the numbers of people who have heard about my wee mum and our awareness campaign


3rd day raising awareness at the conference, overwhelmed by the numbers of people who have heard about my wee mum and our awareness campaign

Well its my 3rd day up in Perth with my wee stand raising awarerness on both Dementia and Caring and I am a bit emotional and overwhelmed by the amount of people who have heard about my wee mums story and our campaign to collect life stories And raise awareness My wee mums photo is in a proud position at the top of my wee stand and has been a constant conversation piece with both delegates visitors and staff at the conference hall. As my mum did in life she has continued to make me proud and inspire me now .I am grateful to all who stopped to say hello and  spend some time both talking and listening to .I also have to say thanks to the Deputy First Minister and SNP  for allowing me to attend and raise awareness as a son and to first group Scotrail ,for helping with my travel Craig and Stewart printers for my stand and to the staff at the hall for their help and kindness to a son with no funding trying to tell a story .thank you and a big thank you to all the carers and families who have shared their story in order to help others
The Tommyontour campaign will continue and grow and I now planning a tour across Scotland to both raise awarerness and collect more life stories
Dementia Carer Voices


Dementia Carer Voices a new partnership with Tommyontour the Health and Social Care Alliance Scotland and Scottish Government

Dementia Carer Voices a new partnership with Tommyontour the Health and Social Care Alliance Scotland and Scottish Government

Yesterday I was off finalising details for a new two year project to give a voice to carers and raise awareness of the carer journey for carers of people with dementia, based on my Tommyontour collecting life stories campaign that I have been running from my bedroom whilst caring for my wee mum Joan who passed away two weeks ago.  I will be a voluntary Partner in this project alongside the Health and Social Care Alliance and the Scottish Government. I will be supported and mentored by the ALLIANCE and will take quarterly reports to the Scottish Government.  I look forward to working with the ALLIANCE and hope their knowledge and guidance will allow this project to grow and be all it can be and have great respect for the work they do

Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support preventing crisis situations and feel enabled to ask for additional help when needed
Continue to capture the experiences of carers across Scotland with a view to informing future police and service provision
Raise awareness of the issues around caring for someone with dementia including working with health and social care students
Empower carers by providing information based on the charter of rights and carer strategy about caring for someone with dementia
Highlight the role of carers as natural resources, carers as people with needs, carers as people with independent lives
Work with other carer organisations to ensure that relevant strategies are well informed by service users
Greater understanding by health and social care professionals of dementia and the carer journey
Reduce isolation of carers of people with dementia
Increase awareness of carer rights
User friendly information to support awareness raising
Inform policy and practice on carer matters
Quarterly reports will be taken to the Scottish Government with a final report being produced at the end of the two year project.

With thanks
To all who have been part of this awareness campaign to date, the families who sent life stories the ALLIANCE for their past help and future guidance and the Deputy First Minister Nicola Sturgeon for taking time to read our life stores and for seeing value in continuing this awareness work.

Saturday, 20 October 2012

Coming home to an empty house, memories of my mum come flooding back

It has been a busy few days at the SNP conference with one more to go tomorrow, in fact since my wee mum’s funeral just over 3 weeks ago I have increased my awareness work and that’s what I plan to do and keep doing. Its also strange when I am out as for the last year I have been raising awareness during the 14 hours respite I had each week and always feel I have been out to long once we reach the 4 hour mark .Coming home from Perth watch nigh on the train as we get closer to Glasgow the reality that I will soon be home to the house I lived with and for my wee mum for the last 5 years starts to play on my mind and emotions and this is increases as I walk through the front door and up the stairs. We spent most of the last 5 years being lonely and isolated from life ,the outside world and friends ,but in many way that was just a rehearsal for the loneliness I feel tonight And most other nights in this empty house without  my wee best pal and the inspiration behind this campaign and MY LIFE ,my wonderful wee mum Joan and  along with my wee dad who passed away many years ago long before dementia entered our lives my heart along with this house feels like the loneliest place in the world tonight

Tommyontour showing film rasing awarenss / photos from SNP Conference this weekend ,some photos

a wee photo of my Dementia and caring Stand at the SNP conference Friday ,Saturday and Sunday ,the campaign to to rasie Awareness continues and grows #rememberjoan
Dementia Carer Voices


Dementia and Caring stand at SNP Conference Oct 12

with Deputy First Minister Nicola Sturgeon

with Councilor David Mcdonald Pollok

With new CAB Health Secretary

Friday, 19 October 2012

Deputy First Minister visits tommyontour stand at SNP Conference Perth


a quick update from the SNP Conference, met and made lotd of new friends and had a visit from the DFM wee had a quck chat and update on my progress will update more when i get home
also spent time with Fiona Collie from Carer Scotland and the team from Alliance Scotland and was good to chat with delegates and peolpe who took time to stop at my wee stand about Dementia ,caring for my mum and the peolpe I have met on my campaign looking forward to tomorrow and Sunday and making more awarenss friends

Thursday, 18 October 2012

Dementia ,I have nothing to sell, just a story to tell ,,,,,

Its another rainy night in Glasgow and I have spent the last hour sitting in my wee mums room a room now empty that for the last 6 or 7 months was more like hospital ward than a bedroom at home. And absolutely I miss my wee mum; I am at peace in some ways as my mum was very poorly towards the end but I just want my mammy back  but she has left me with a story in my heart a story about her life ,her kindness her ability to care for all she met and her journey with dementia ,A journey that hard and to often to hard for me to both cope with and witness and along with my mums story I have hundreds from the life stories her story inspired and the words and feeling from the many hundreds I have met over the last year facing a similar journey to ours and that’s the whole point of this Tommyontour campaign ,I do this as a son with nothing to sell  and always have done as a son and will continue to do so, as long as people will listen and I will take my mums and all the other stories that have inspired us that need to be told to as many people as I can ,because I believe that the life stories I have read ,the people I have met can be part of bringing  a better understanding to a wider society on both dementia and caring and that story will continue and grow and reach as many people as we can
And for the next three days I will tell that story at the kind invitation of the deputy first minister to all who come to my wee stand at the SNP conference
With thanks to the SNP party for inviting a son with a story to tell and with nothing to sell

Son ,carer voluntary awareness campaigner

Tommyontour Stand at the SNP conference Perth Friday, Saturday and Sunday

Well I will be traveling up and down to Perth, Friday Saturday and Sunday and will have a wee Tommyontour Dementia carer voices Stand hoping to meet and chat with as many ,Msps ,Councilors and all who attend about Caring for my wee mum ,The life stories I receive and the people I have met on my Tommyontour campaign over the last year I would like to thank the Deputy First Minister for taking time to allow a son who carer for his mum for 5 years the chance to tell their and the other stories collected to as many people as possible in the hope of in some small way raising more awareness and understanding This campaign has always been about people and by people and I thank the SNP  for recognizing this and for allowing me to attend
I hope if you are there you will come by and say hello

handing over life stories to the Deputy Fisrt Minister last year ,who also made a private visit to meet my wee mum Joan at home a few weeks before she sadly passesd away on Sept 22nd


Wednesday, 17 October 2012

Earlier Today Meeting old friends and speaking at carers link milgavie ...

Well I will be speaking at carerslink milgavie today  at their  dementia /carers group Alex ,NormanJon  and all the team have been great supporters of my wee campaign in fact I was the guest speaker at their AGM last year. Alex also accompanied me to the Scottish Parliament on the first occasion when  I first met with the then health minister Nicola Sturgeon .I look forward to catching up with goof friends and updating them on the progress and future plans for Tommyontour Dementia carer voices

from AGM

from earleir today

0141 955 2131

Tuesday, 16 October 2012

Meeting Caledonian University research team Sept 24th discuss paper on my life stories


a week today I will be meeting with researchers and lecturers from Caledonian University ,Nursing and Social Care Science to discuss our plans to produce a paper on the life stories I have received.I am also penciled in to do some talks at the University later this year  to students about caring for my mum ,the letters I receive and the people I meet on my tour .I  hope we can produce a paper from the life stories collected and sent  without guidance  that can be used to bring more help and understanding on dementia and caring

The Awareness Campaign Continues and Grows


Sometimes it hurts so bad sometimes it hurts to much

I am having ok days at the moment and bad days ,I am missing my wee mum so much .this house and my heart are empty without her .I am lost in a fog of the last years and the mistakes I made and from others are at the forefront of my mind ,I know we had good days and joy over the last 5 years and certainly had much Joy as I grew up with a wonderful mum and dad .I also know that in time I will look back at this with a clearer head ,but it was to hard ,there where to many mistakes and not enough understanding from within and from to many around us and the last months when my mum was very poorly seemed like I was the only one who understood this .i just miss her and wish I had the chance to do it all again and do it6 better and demand better from others but there is one thing I can do better and that is raises awareness so that others have a better understanding of what lyses ahead and wont sit like I do looking back  with regrets .and sit  missing an incredible mum who against all odds against all that was happening made her son a better man. Now isn’t that something with all my wee mum faced at the end her smile and love was the strongest part of both our lives and thats the message I will take wherever I go on my awareness campaign ,that’s what parents do they make their children stronger and better

Monday, 15 October 2012

Dementia and caring looking to visit carer groups / centers to discuss new awareness projects

I was hoping I can meet with you or visit families /carers / carer group / centers  you are working with to discuss and update on some of the projects I am working on

Dementia working group Glasgow city council
First meeting to set up working group based on my motion October 22nd at City Chambers with Cllr Kerr, Ann Marie Simpson, Ann Cummings SW and myself
Dementia Carer Voices
Based on my Tommyontour project with support from the health and social care alliance and supported by the Scottish government .I will be taking 3 months reports direct to government on this 2 year project on dementia and caring
Dementia through art project
Permanent exhibition at Garnavel hospital based on my life stories and people I meet or have met on my tour
Paper on life stories
I am in talks with a leading university about a paper on the life stories I receive
The possibility of two news films
Discovering dementia film
Carer engagement film
Please get in touch via
Thank you

Sunday, 14 October 2012

Discovering Dementia I hope to make a new film

For the last wee while I have been hoping to make a new film with the working title Discovering Dementia, A film about dementia from getting a diagnosis till end of life .the need for me to make this film is drawn from the lack of understanding on dementia of many within the care sector and the wider public .the problem I face and have always faced is I have no funding but that has not stopped my desire to raise awareness in the past and will not deter me in the future .i want to take the understanding of dementia to a wider public and make dementia a discussion that is no longer whispered behind closed doors but discussed and understood by the many . Most of the issues my mum and I along with to many others i have met or received life stories from came from a lack of understanding within and a lack of understanding by to many we looked to for guidance and advice .until we take the discussion to a wider audience then people will keep facing the struggles and lack of understanding far to many of us have faced or are facing as we sit today .This film will be made ,and I hope soon and I hope it helps others sit with less regrets than I sit today looking back at our 5 year journey and a mum who deserved better than she got and to often better than I was able to give .a film that give more peolpe the chance to understand ,live ,love  and cherish their loved ones and free for all to use and access


My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...