A wee photo of my mum that made my heart smile

I am trying to figure it all out ,looking back over 5 years caring for mum and her journey with dementia ,in many ways I need more time to get a clearer perspective as the last years where tough for mum and tough to witness ,the last months so sad to witness and to often  feeling quite helpless .I do quite a bit of crying just now when at home alone .when I cried before my mum always no matter what she was facing would revert back to making sure I was comforted ,how magic is that .always when it got to much for me ,not her for me she found a way to make it betters

Anyway about two years ago I found some tapestries I had brought back fro my travels many years before and got them framed , I found this photo of my mum showing us the dance movements from them as we hung them on the wall and it just made my heart smile when I was sent the photo the other day .once again my mum although no longer with us can wipe away her sons tears and turn them to a smile and I ask you one thing how brilliant is that

Tommy  

Attending Pollok carers Christmas dinner tonight

Hi

I am off this evening to the Pollok carers Christmas dinner at the Crookston Hotel as with last week when I had my first night out in 3 years I am very nervous about my ability to socialize   after 5 years of caring for my wee mum and the hours in-between caring where at first filled with a sense of loss on what to do and for the last year razing awareness. As computable and passionate as I am in doing talks going out sociably feels like a mountain to climb,but I look forward to the dinner with Linda her team and the carers and young carers they work with and support .I received support from and have  been a guest speaker at Pollok  carers a few times  and have got to know a few people who attend the groups along with on social media. Tommyontour is one thing .Thomas whitelaw and his ability to be part of a social occasion is quite another .

 Tommy

 a wee photo from my talk at Pollok carers last month

Doing talks Caledonian University Health and Community Sciences School of Health and Life Sciences

Hi

With great thanks to the departments at Caledonian University Health and Community Sciences School of Health and Life Sciences for inviting to me to do a series of talks after the new year to 1st -4th year  mental health , Nursing and social care students

I look forward to talking about life caring for my wee mum, the life stories I receive and the people I have met on my tour

I also look forward to healthy debate with  question and answer sessions after each talk

I believe interacting with the next generation of people who will be involved in our care is a positive direction to take me talks

The first talk confirmed is to 1st year mental health students February 20th with a few more with dates to be confirmed

Tommy

How can you mend a broken heart?

Dementia will do that ,it will break your heart ,not once but over and over again Its ten weeks since my mum passed away and my was broken that day but the truth is it was broken long before and many times before , some days I feel better some days I look back and smile but not as many as days I look back and cry ,and that is a continuation of our journey whilst caring for my mum some days we smiled some days we had Joy but to often we struggled and to often I cried ,the difference now is it was my mum who made me smile and dementia that made me cry ,now my mum is no longer here to make me smile but the memory of dementia still has a firm hold of my memory and two oftemn makes me cry

Today is one of those days, today is one of those days that feels like me heart will never heal and I will never stop crying

I wish my mum was here to make me smile

Tommy

Speaking Labour party conference fringe meeting this April

Last week I popped through to the Scottish Parliament to meet labour leader Johann Lamont and shadow health secretary Jackie Baillie about my awareness campaign. We had a chat about life caring for my wee mum and the life stories I receive .while I was there I was invited to speak at  the Labour party conference in April up in Inverness look forward to speaking as a son who cared for his mum and about the many hundreds of people who share their life stories .Over the last years the SNP  have been very supportive of my campaign in particular the Deputy First Minister Nicola Sturgeon who I have great respect for ,I am also grateful to Johann and Jackie for this opportunity but this has got me thinking do you think the Conservatives or Lib Dems will every reply to my pleas to engage and talk ? I hope after all this a story about a mum a son and many other husbands ,wives ,sons ,daughters and familes

this is not a political campaign this is an awarness campaign about love ,heartbreak ,hopes struggle .and dreams respect and digintiy

Tommy

last week at parliament with  Johann and Jackie

Speaking Friday at North Ayrshire dementia services Dementia Engagement Day

I will back down to to North Ayrshire on December 14^th to see Kerry all the team and all who Attend North Ayrshire dementia Services

I was a guest speaker a few months back anf I look forward to returning to udate on my progress and be a part of this day

You can get more details on the event below

Tommy  

NORTH AYRSHIRE COUNCIL DEMENTIA SUPPORT SERVICE

DEMENTIA ENGAGEMENT DAY

14 DECEMBER 2012

St CUTHBERT’S CHURCH HALL ,SALTCOATS

11.00am – 3.30pm

Please feel free to drop in to St Cuthbert’s Church Hall on 14 December 2012 to have a blether, a culpa and to meet with other people who have a personal, professional or vocational interest in dementia and to learn more about how North Ayrshire Council and it’s partners are planning it’s services in this area.

The blog for the service will also be formally launched at this event.

We will have a number of guest speakers on the day and a host of services represented at the event offering advice and support and they will be on hand throughout the day to showcase their respective products too.

We will also have Tommy Whitelaw joining us and he will give a presentation on his journey and awareness campaign “Tommy on Tour”

The event will be closed by a performance from Caledonia Primary School

Organisations who have already confirmed their attendance are as follows –

·          Alzheimer Scotland

·          Apetito / Wiltshire Farm Foods

·          Caritas Legal

·          Circa Signs

·          Jordan Shaw – Caring Through Innovation

·          KA Leisure

·          Martin Richardson Opticians

·          NHS Ayrshire and Arran

·          North Ayrshire Council

·          Prince’s Royal Trust

·          Strathclyde Fire and Rescue

·          Strathclyde Police

·          Thistle Help

·          3^rd Sector Community Connectors

Follow us @NAdementia and visit us at www.dementiasupportservice@north-ayrshire.gov.uk

The importance of promoting good practice ,,,,,,,,,

I collect life stories and I collect them as after three years caring for my mum we where reaching a crisis ,as dementia was doing its best to affect my mums greatness, awareness and life ,I as a son was falling apart beside her .In Fact that’s why this campaign started ,I wanted to find out how others managed or coped .I had no clue how to ask for help or what help was available and on my travels amongst the struggles amongst the heartache I discovered many people doing great things .I met many people against all odds doing great things and although we still have so much to do and there any many changes that have to be made ,not knowing about services ,or people that are out there is a tragedy in itself .I wish I had known about people and services quicker than I did ,I wish I had asked for help quicker than  I did. There is no golden ticket but there is help out there and its ok ,its ok to ask for help and its better to ask as early as possible with a clear head and its important that if you know of good services or good people that you tell others ,that you tell others so they inspire others to follow ,It is so important to promote good practice so that others see how its done so others are inspired and so we help people facing this difficult journey alone that they don’t have to and they are not alone I know first hand the impact and part lonliness plays alonside dementia .we cant as of yet cure dementia .but we can inspire and we can bring more understanding and the more we inspire .the more we dicuss the less lonliness peolpe will face

Tommy

Dementia through art a project outline

Hi

Below is a wee outline to the dementia through art project I am working on (pending final approval ) with Gartnavel Royal Hospital

fingers crossed

The awareness campaign goes on

Art students

Develop a brief for a group of art students to create a space which brings comfort, hope and inspiration to all who visit the hospital or work there based on the letters and life stories collected during the campaign ( I believe if we work with the students on some of the life stories they will produce art that helps comfort and will inspire all who view).

Carer groups

Work with carers /families who attend carer group’s form across Glasgow; north, south, east and west, encouraging them to come up with ideas, sentiments and inspiration to create a Carer’s space in the corridor.

Local art students will be sought to work with the groups if required to bring their thoughts and ideas to life.

Design students

Work with students working on dementia, residential care design course

Outcomes

I believe if we can bring all of the above together and agree a plan work can be done that will inspire all who view.

I also believe this will raise positive awareness Involving families and the next generation of artists in this project will I hope help and inspire others along the way and I believe involving carers and carer groups will inspire local communities and the people involved.

As with all I do I do this as a son and on a voluntary basis

Tommy  

Today attending dementia dialogue have you’re say event

Hi

Today  I will be attending a dementia dialogue event at the Hilton as part of my two year awareness project supported by the Scottish Government

Location: Bellshill

Venue: Hilton Strathclyde Hotel, Phoenix Crescent Strathclyde Business Centre, Bellshill, ML4 3JQ

Date: 3 December 2012

Time: 11:00 – 15:00 (registration and refreshments will be available from 10:30)

Thank you for taking the time to contribute your views on how we build on our national approach to improving dementia services. Dementia has been a national priority since 2007 and I am privileged to inherit this hugely important agenda as the new Cabinet Secretary for Health and Wellbeing.  I very much look forward to learning from you all as we work together to continue to improve people’s experience of dementia services across the whole system of care. The first strategy was developed in partnership with Alzheimer Scotland, COSLA and others and I look forward to the benefit of that range of expertise and insight as part of this consultative process. I am gratified that there’s broad agreement that we’re taking the right approach and I anticipate that the next national strategy – to run to 2016 – will build on this approach as well as identify other areas needing attention and capitalize on new opportunities. We will continue to focus on the early and accurate diagnosis of dementia, and improving post-diagnostic services through our new target from next year, which is described by Alzheimer Scotland as a world-first. We know that getting this part of the system of care right for all will be crucial in supporting people with dementia and their families adjust to the diagnosis, build a personal, tailored care plan - and plan in advance for future care as the illness progresses. While we continue our focus on working with NHS Boards and others in improving dementia care in general hospitals, with work led by The Chief Nursing Officer, I want to hear your views not only on how we build on that work but also on how else we use the dementia standards to measure services across the whole system of care. A big part of our approach will inevitably be continuing to improve the skills and knowledge of the workforce, building on the implementation of the Promoting Excellence skills and knowledge framework over the last two years, and I look forward to your views on where we should focus this activity up to 2016.I am particularly looking forward to engaging with The Scottish Dementia Working Group, and the new Alzheimer Scotland Dementia Carers Action Network, both of whom are very highly regarded by my predecessor and who possess an invaluable amount of first-hand experience of services. This work does not stand in isolation, of course. Quite the reverse, in fact. Our huge undertaking to integrate health and social care, our work to roll out the take up of Self Directed Support, and our strategy on carers are all very strongly linked to our agenda on dementia. Getting all of these areas right will help in enabling our older population, and everyone with dementia, to live well for longer in their own home and as part of the community. I look forward to receiving your views as part of this dialogue.

ALEX NEIL

Cabinet Secretary for Health and Wellbeing

Running to stand still .................

Running to stand still

It was the song  that described the pain in my heart over the last months of my mums Journey ,It was the song that best described my struggles as a son trying to care for his mum and witness the toll being taken ,At my wee mums funeral 6 weeks ago I chose and I love you so by Perry Como from my dad .somewhere over the rainbow  by Matt Munro for my mum as she had mentioned this during a conversation and from me u2 Running to stand still ,as the title and Lyrics best described my heart that was breaking ,my mums strength that was weakening .and now even more ,now  that my heart was finally broken and my mums strength from finally weakened ,this song still describes my life ,I am running even faster trying to raise awareness but my life at home and outside my campaign has stood still and this comes from missing my mum ,from at home having to much time alone  to much time to think, to .dissect and to often upset myself with memories that make me cry ,the Joy is there somewhere its just smothered with pain and regrets

first you woke up ,woke up from where you are lying still

I  said Ive got to do something about where were going

step on a steam train ,hide from the driving rain

run for the cover in the night

You’ve got to cry without weeping

Talk without speaking

Scream without raising you voice

Tommy

Dementia more ,awareness talks and projects-December and 2013, the campaign goes on

Hi 

The last week in particular has been very busy with my on going awareness campaign .I have a few more for December and 2013 coming in and about 20 we have to pin down dates and times

December 3^rd attending Dementia Dialogue event Bellshill (a discussion on Scotland’s dementia strategy)

December 7^th meeting re dementia carer voices (Irene)

December 10^th attending festival of age launches UWS campus Hamilton

December 15^th south Ayrshire carer group

January 10th attending Dementia Dialogue event Paisley (a discussion on Scotland’s dementia strategy)

January 17^th meeting health minister Alex Neil in Edinburgh then speaking at Victoria in infirmary RAD directorate

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

February Glasgow City Council dementia working group based on my motion passed

March 14^th speaking at Lockerbie carers

March 22nd speaking at SDRCN Conference Stirling

April fringe talk at labour party conference in Inverness

            On going projects

Dementia Carer Voices 2 year project with the Alliance and support from the Scottish Government

Dementia through art Garnavel Royal Hospital

Academic paper with leading University based on my life stories

Carer engagement film in discussions with partners

Talks to be confirmed

1^st 2^nd 3^rd year students Caledonian University

Talks within NHS gg&c departments

Visiting carer groups across Scotland

All of the above I do as a son on a voluntary basis

Tommy