Not the best of days !

Hello

Well it's been a pretty rubbish day all in all woke up this morning to find someone had been in my house whilst I was  sleeping

My wee  bag with all my awareness material  that goes everywhere with me has been stolen
I can replace the bag ,paperwork ,disks and memory sticks  but not the letter my wee mum left on my pillow a couple years back

My mum at the time could no longer remember my name and much more .One morning while I was down getting lunch ready she left a biscuit. , A packet of crisps and a  wee scrap of paper on my pillow saying " I love you thank you for looking after me " and I carried it every where with me  in my wee bag

This was the last thing mum ever wrote down and I am so sad to have it taken away and to be taken by someone who has so little respect for the lives feelings and property of others

They have no right  to take or read such a special and private memory

Anyway I had a meeting in town this afternoon about a new talk and did not want to let the person down I had arranged to meet unfortunately they never turned up

So not been a great day and now  back home feeling angry ,sad and uncomfortable that someone has been in our house ,our home ,our lives

But you know I might just bump in to someone walking down the road one day with my bag over their shoulder ,I just might

That would quite a blog post to write

Tommy 

A break in at home last night !

Hi 

Well sitting here waiting for the police to arrive and a bit shaken and bewildered  after having a  break in at home last night !
Not much been taken but the fact someone has been in my house whilst asleep is not the greatest of feelings 

I woke up this morning with the back door open ,thinking at first I had forgot to close it ,but soon realised my wee bag with all my awarness films and paperwork i carry every where and jacket where missing 

The lock has been forced open and my bag with passport ,films and a little money is gone and some files all of which can be replaced 

The thing that can't be replaced is a wee note from mum I carry every where that she left on my pillow one day to say she loved me and thank you for looking after me and that has caused a few tears sitting here 

I don't quite know what else to say  as I can't understand quite what has happened  feel a bit shaken and sad that some people  think its ok to go into people homes and take what they want 

Tommy 

Map of our journey - Past, Present and Future. Jan 2012 - A look back for the love of mum

In January 2012, my dear friend Caroline Brown came to visit mum and I.  Looking at our life past, present and future.  Our struggles, joy, hopes and dreams.  Below is a summary of that day, my mum sadly passed away a few months after this.  Time for a wee look back.

synopsis of Promise to Practice Conference on 19 Aug in UWS AS CPP

With thanks to Sandra Shafii AHP @AHPRunRideTeddy for sharing

synopsis of dementia strategy Promise to Practice Conference on 19 Aug in UWS AS CPP

You can view at the link below


http://tinyurl.com/lcn9bws

“ it’s OK to ask “Glasgow carer engagement film

Please see link below to a new DVD that has been produced by NHS Greater Glasgow & Clyde, Glasgow City Council, The Alliance and Alzheimer Scotland.  The DVD uses carers’ experiences to highlight the benefits of using carer support services in Glasgow, and encourages people to ask for help. 

Please see below link for  the new carer engagement film "ITS OK TO ASK "Glasgow
 I have the privilege to introduce and narrate  

http://youtu.be/u2BAxSCcic0

"It's OK to ask" Carer engagement film 

Today Meeting Carerslink team ( honorary member )

Hi 

I will be meeting Norman from Carerslink Milgavie  today for a catch up and update on his and my own progress .Carerslink have been great supporters of my awareness campaign since day one ,in fact Alex came to Parliament to support me on my first visit to hand over life stories .Alex has just retired , so I send great thanks for his support ,encouragement and wish him the best for the years ahead 

Looking forward to seeing Norman who runs the dementia / carers side at Carerslink .I was proud to be made an honorary me members of Carerslink a few months black 

Honorary member 

Well I am very proud to have been informed that I have been made an honorary member of Carers Link for my awareness campaign,Its lovely and its been a tough often since  my wee mum passed away and this campaign started with her story so I am really proud and feel privileged,  especially  to recieve this from  an amazing group of carers and people who support carers like I was in their community

Thank you and you have brought both a smile and some tears today and t look forward to the AGM and accepting on behalf of my wee mum and all the life stories and families I have met on my wee awareness campaign

Tommy

Hi Tommy you have been nominated for Honorary Membership of Carers Link by a Carer because of your campaign to raise awareness for people with dementia.  The board unanimously agreed that you merit the Honorary Membership (only the third in our history) and it will be mentioned in Jennifer’s speech at the AGM.

Regards

Alex Sinclair

www.carerslink.org.uk

Tomorrow a busy day speaking Glasgow royal and Meetings with Alz Scotland then Carers Scotland

Hi
I have a busy day on Tuesday first meeting Jim from Alzheimer Scotland   to chat about a few ideas ,i than meet up with Fiona Collie from Carers Scotland for a chat i will be also discussing with both the up and coming concert and exhibition letters life and love stories a celebration of caring  

after lunch i will be speaking to staff  the first of three talks at Glasgow Royal Infirmary as part of the rolling out of the new Getting to know me initiative at nhsgg&c

Tommy

August 22nd last year a special visit for Mum from the Deputy First Minister

Dates are significant when someone you love is no longer here; birthdays, anniversaries and more. August 22nd last year is one of those that particularly sticks with me.

As a carer, the real basis behind my awareness campaign was our story, more importantly – Mum’s story. The campaign ended up taking me all over the country, even to the Scottish Parliament, but it played on my mind that the most important person in the world to me, the reason behind everything I was doing, was unable to be with me in person at any of those events.

I remember coming home after speaking at the Scottish Parliament and handing in the carers letters. I told Mum all about the day and how I was so proud to speak about her at the Scottish Parliament, she responded by giving me the biggest of smiles and holding my hand so tight. 

A year ago today, 22nd August 2012, Deputy First Minister Nicola Sturgeon took the time to visit my home to meet the Mum at the heart of the campaign, who was very unwell at the time. It was a very special and private visit. My Mum was never able to make it along to the Scottish Parliament, but I will always remember the day that a part of the Scottish Parliament came to meet her.

Tommy            

blog post august 22^nd 2012

Hi

we had a visitor at home Yesterday (we don’t get many) the Deputy First  and health minister Nicola Sturgeon came to visit and meet my mum and have a wee look at life at home caring for a loved one

It was a very private visit and the fulfillment of a promise made when we last met to discuss the letters I receive and I am grateful as I have spent a lot of time over the last year discussing my mums life in public on my quest  to raise awareness  I first contacted the DFM  over a year ago to tell her of my plans to collect life stories and she promised if I did she would  invite me speak at parliament and read the letters I collected  .

A few months back When we met , the DFM  asked if she could meet my mum ,my personal reason  the MUM. behind my campaign As mum is a biggest part of my life and campaign 

 I am happy to say that promise was  fulfilled today A private visit and discussion but very moving 

due to  my mums health she is unable to come with me on my talks ,when I had the privilege of handing over letters and speaking in one of the rooms at the Scottish Parliament last year  I was proud to do so and wished my mum could have been there.Today part of the Scottish Parliament came to meet my mum  in her home and the biggest part of my life and tour was the biggest part of a special day 

With thanks to the DFM for reading our life stories and keeping the promises she has made this son to date and for taking time to meet the mum behind this campaign 

Tommy

150,000 thank you for viewing my blog 37 , 000 thank you,s for taking time to view my films

Hi
You's

150,000 Thanks you for taking time to view my wee blog and view my awareness films

I started writing this blog as mum and I where so lonely lost and isolated so thank you for caring ,for the support ,for the kindness and helping take some of the loneliness away

Thank you for the kindness and support

The awareness campaign goes on

Tommy  

Events 2013 guest speaker

NHS
17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary

02.07 Vale of Leven hospital

03.07 London royal free hospital 

09.07 Vale of Leven hospital 

01.09 Glasgow Royal Infirmary

27.08 Glasgow Royal Infirmary

03.09 Glasgow royal Infirmary

12.09 Glasgow Royal Infirmary

Conferences

22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
21.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event

04.07 health education east of England 

8.08 NHS Education Board presentation

10.09 Care Inspectorate Conference Older people

11.09 Care Inspectorate Conference Older people

Universities

16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University

5.08   Dundee University Fife campus

8.08   Dundee University 

Colleges
05.03 Cardonald College
11.03 Cardonald College
15.03 Ayr College
28.03 Reid Kerr College
07.05 Reid Kerr College

Outreach - involvement 

14 .02 who cares for the carers BBC radio Scotland documentary on tommy

19.02 South Ayrshire Carers Dementia Awareness Day

26.02 ‘Making Life Easier’ Event Murrayfield

14.03 Lockerbie Carers Dementia Group

22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council Dementia Awareness Event
01.05 ALLIANCE Annual Conference
02.05 North Ayrshire Council Carer’s Strategy Event
09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week
18.06 Presentation to Sainsbury’s staff Prestwick
20.06 ALLIANCE Involvement Networking Event

8.08 South Ayrshire Carers

Policy 

 20.03 members debate Scottish Parliament.

           Stand at Snp conference Perth

02.02 Scottish Liberal Democrat Health Conference

20.04 Scottish Labour Party Conference

02.05 North Ayrshire Council Carers’ Strategy Event

Thank you


Tommy

Papering over the cracks.my broken heart

Papering over the cracks, my broken heart.

I have had my heart broken before, a few times in fact and looking back this could have been avoided if I had been a better boyfriend or even half as good a boyfriend as I thought I was.  So in many ways maybe I asked for what I got but we never asked for Dementia, we certainly did not see it coming and it changed everything. 

Things changed in our case with pace and intensity that we struggled to keep up with and that’s a problem we can work on.  This journey from diagnosis to end of life, a plan from that day, a plan to help keep pace, to keep the love and to cherish life.

Since my wee mum passed away I have continued at pace with the growth of the campaign we started together, the campaign that started with one story my incredible wee mum Joan and I feel strongly when speaking, raising awareness or telling people with great pride about my mum and the amazing courage of the families I have met or who have shared their story.

However in many ways this papers over the cracks of how I feel inside, how lost I am at home without my wee mum and how lonely this house is after 5 years of Dementia being part of our lives. 

As for a broken heart, I have recovered from them before this time, this time I am not so sure, this time it feels to hard.  The world will never feel the same again, it was too hard too often and we have to change that for others, so they don’t feel like I have felt or how I feel tonight.

Tommy  

Who said big boys don't cry ?

Sometimes I start crying, the simplest of things set me off.  We spent so long confined to the house that routines where built to get through the day.  The routines changed as my mum’s health and dementia took their toll but it was always routines of each day and trying to keep pace, get through and survive in many ways.

The other without  thinking I looked at the clock and thought I better get dinner on, as this was part of our routine dinner, medication and bath for mum but only for a second then I realized there is no routine and that’s when the tears started.  My mum is gone, a mum who was always my friend then became my best friend and this started a process of tears and questions, we were so busy trying to keep pace that we never asked enough questions. 

The biggest question of all is what happened? one day I was care free probably to care free and certainly not planning for the future and mum was home in Glasgow, then a visit home to a tragedy was waiting, a diagnosis of dementia; with no guidance, no understanding and there began a 5 year journey.

Always a step behind even at the end not quite sure what happened, yes there where mutterings  of end of life care but as with the diagnosis, no real guidance support or advice and as I try to figure out what happened to us over the last 5 years the only answer I can come up with is we never really stood a chance.  We were never really informed of much the whole way through and were lost as were many people involved in mum`s care and that’s what has to change in this dementia journey. The journey needs more planning, more information, more understanding and the support from people who know more than we do.

It’s hard to figure out what happened over the last 5 years as we never quite knew what was happening at the time and the crying that happened all along the journey happened so many nights like tonight as I cry myself to sleep but at least I know why, A mum like mine is worth crying for.  I wish it was only tears because I missed her but it’s mixed with tears for a mum who was in many ways let down by the lack of understanding of her illness and what she and I were going through.

Tommy

Lecturers Bill and val serenade 3rd year mental health students ontheir finalday at Caledonian Univerity

I have had the great privilege of speaking at Caledonian Univerity over the last year and have been inspired by the great work being done there and the amazing students who attend.

Once again inspired by a wee film sent anonymously (Andy Lowndes ) of Bill and Val - Andy's fellow lecturers serenading 3rd year students on their final day at Uni.

http://youtu.be/6_cdm9a6mRU


If I can just add my best wishes to all the 3rd years for their caring future ahead.

2 talks care inspectorate event September 10th &11th

Hi

With great thanks to Heather - Dementia lead at the care inspectorate for inviting me to speak at their two day event September 10th & 11th in Dundee. 

I will publish more details once I have but I look forward to speaking about my wonderful mum, dementia, caring,  the letters I receive and people I meet on my tour. 

Thank you Heather and all the team organising this event for the invite. 

Tommy 

You can get details on the Care inspectorate at the links below 

http://www.scswis.com/

   

show your support for #SelfManagement Week 2013 takes place from 30September - 4 October throughout Scotland.

Self Management Week 2013 takes place from 30 September - 4 October throughout Scotland.  

ALLIANCE events held during the week will have a virtual approach with a lot of social media challenges and debate, and in the lead up to the Commonwealth Games there will be a strong theme on self management and physical activity.

 Show your support and join our #SelfManagement team by passing the baton on Twitter! more info here 

Weekends & week days they are all the same to me

still not figured out what life is outside this house, even though since mum’s passing I have stepped up my awareness work to fill up as many hours as I can.

I remember one late Saturday night checking in on mum as I did almost hourly over the years to see if she was okay and comfortable. From the window I heard the noise of people returning home from a night out, their laughter and happiness a reminder of what had become distant from both of our lives. As our journey progressed the chance to go out and enjoy some of the activities we took for granted decreased. In fact our life within the home decreased, really shrinking to two rooms upstairs as mum became very weak.  That’s not to say there was no joy, mum made sure of that. Her love and kindness always shone through no matter what.

Before dementia and my life caring for my mum I was always out. I travelled ten months of the year and going out went hand in hand with my job. I write this today as I walked up for the Sunday paper I passed some people coming home from what looked like a good night our discussing their activities and it made me smile. They looked decidedly happy with themselves and good on them, enjoy every moment you can. As I sat down I tried to remember the last time I was out socially and that feels like a distant memory. It’s something I have to try and work out how to do and I miss that part of life that disappeared but not as much as I miss the kindness of my mum the care in her heart and the light that shone from her eyes brighter than any Saturday night I have witnessed .

Weekends and week days seem all the same to me these days, but they are missing someone who made them better and special - Joan Whitelaw my wee mum

Tommy      

Dementia Carer Voices 2 year project at Alliance Scotland harnessing the work tommyontour

Dementia Carer Voices

Reaching out to carers of people with dementia and giving them a voice through a “letters campaign” has been part of the awareness raising activity of Tommy Whitelaw, who has experienced first hand what it is like to care for someone with dementia. Tommy has also made a film about dementia and caring for someone with dementia with a view to reaching a wide audience in the UK and beyond.  Read Tommy's blog .

Dementia Carer Voices builds on the awareness activities from 'Tommy on Tour ' .This ALLIANCE project has been made possible with funding from the Scottish Government.

The ALLIANCE recognises the importance of the Carer Voice in informing future service provision and in empowering carers themselves. To this end the Dementia Carer Voices project aims to

• Harness the work undertaken to date, particularly by the Tommy on Tour campaign
• Develop this by supporting Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland

In doing this, the ALLIANCE will 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 it is needed;

• Capture the experiences of carers across Scotland with a view to informing future policy and service provision
• Raise awareness of the issues around caring for someone with dementia including among 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 live
• Work with other Carer Organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users. (As a network organisation which includes organisations such as - Alzheimer Scotland, Carers’ Coalition and Age Concern within our membership, we are well placed to undertake this role).

The project will do this through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media;  network events and consider possible future film to raise awareness/understanding.

Read the first issue of the Dementia Carer Voices Newsletter here

Read the second issue of the Dementia Carer Voices Newsletter here

Read the third issue of the Dementia Carer Voices Newsletter here

You can sign up to recieve future updates by clicking here. 

The project team have put together a short survey to enable them to capture key messages from carers which will be used to influence future policy.

If you have experience of caring for someone with dementia you can contribute and have your say on your hopes and concerns for the future by visiting http://www.surveymonkey.com/s/V7SYL2G 

For further information read the Dementia Carer Voices Information Report or contact Programme Director Irene Oldfather , Project Officer Tommy Whitelaw or Policy and Information Assistant Christopher Doyle.

Tommy produced a short film, which includes families and carers reading from the letters they sent him.

Tears are never far away, missing my mum by my side

Tears are never far away, missing my mum by my side

I had a really busy week doing 4 talks over 5 days and I sit here today emotionally drained, but that’s nothing new I was emotionally and physically drained over the 5 years caring for my wonderful mum.  To add to that I was also fearful, asking the questions to myself am I doing the right thing and am I giving my mum the best of care. 

 I spent a lot of time feeling scared, scared of what was happening, this lack of understanding inside and too often towards us and I as do so often just cried myself to sleep last night.  That’s nothing new either I cried myself to sleep often as we struggled and I witness dementia taking its toll on my wee mum, especially the last months.  It was the last months that broke my heart I feel beyond repair and we as a society can change so much of this for others.  We can raise awareness, understanding and guide families giving them the quickset and best of support.

 We at this time cannot cure Dementia but we can cure loneliness, understanding and make sure all are given the best of support, help, advice and treated with kindness, respect and dignity.  I not only cry, sometimes my heart smiles when I think back to the ones who made it better, the ones who helped us through with kindness, information and support.  However tears are never far away for a magnificent mum who I miss by my side, who no matter what she faced could make it better with a smile or a stroke of a hand even when she facing much more than me, how lucky I WAS  TO BE  JOAN WHITELAWS SON

We can make it better for others can’t we?

Tommy

I just don’t know what to do with myself

I just don’t know what to do with myself

I have two years to work on my Dementia Carer Voices project, based on my Tommyontour campaign that I started from my bedroom whilst caring for my wee mum.  A campaign started with a broken and lost heart.  I am grateful for the opportunity to continue to improve and increase the awareness work done from home and during my respite hours.  I am thankfully very busy with some I believe good projects and opportunities to both be involved in and raise awareness.

Its Sunday today and like every other weekend and evening since mum passed away I just don’t know what to do with myself.  My mum over the last five years became my best pal we shared the struggles and the joy.  The truth is each other was all we really had.  I Knew I would miss mum but I never thought it would be this hard this often.  5 years of loneliness, isolation and social exclusion has knocked the stuffing out of me, the thing is I could take it when mum was here; we had to in order to get by.

What happens when in need of long term care or caring that as a society we too often look the other way.  Dementia brings so many challenges on its own, we need to do more to tackle all the other struggles that can play such a prominent part.  I know how to campaign, well I hope I do, I just don’t know how to fit back into everyday life.  My life before caring was constantly travelling and social occasions, now I have no clue, and really don’t know where to start.  The loneliness we faced over the last 5 years was in many ways a rehearsal for how lonely life is without my wee pal, my mum and like every other weekend or evening I just don’t know what to do with myself.

Tommy

Get by with a little help from our friends

Looking back , its more painful sometimes with time on my hands .when caring for  my mum our objective each day seemed to be let’s get through today, so we can make it through tomorrow. That in itself is wrong and adds to all that dementia can bring I don’t for a second believe this is unique to dementia ,on reading the letters I receive this applies to so many people with so many long term conditions but looking back why does a diagnosis of dementia change friendships ,why does the phone stop ringing and the door stop knocking .This incredible ,magnificent  mum of mine who gave so much to so many .where did they all go. This does mean I don’t understand .I was fearfully .I was protective, I played my own small part in bringing  loneliness. This saddens me and I hope we can change this for others ,the only way we can do this is by taking  and raising the discussion and understanding on dementia and caring to the widest of audience across society .until we do .families will suffer through a lack of understanding ,loneliness ,isolation and more .we as a society can change this .we can help and support others and give friendship that stays no matter what we face .we can get by with some help and understanding from our friends 

My mum was viewed to often as just a wee woman with dementia devalued in many ways forgotten by so many .we cant at this time  cure dementia and the process of taking away the memory my mum had was cruel ,but we can cure understanding .why do so many people  forget so quickly .a lack of understanding from within and towards us played its part in holding us back 

My mother’s name was Joan Whitelaw ,she was magnificent ,kind caring ,beautiful on both the inside and out ,she was in life a daughter ,sister ,wife ,the kindest of mothers ,  grandmother  ,cousin ,aunt ,friend  ,workmate valued me member of her community but never just a wee woman with dementia  not in this sons eyes or heart

A wee itinerary of thanks Thank you for the opportunist so far this year to raise awareness

Lately, I have been a guest speaker at the following events thank you for the opportunities  to raise awareness 

THANK YOU 

Tommy  

Events 2013 guest speaker

NHS
17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary

02.07 Vale of Leven hospital

03.07 London royal free hospital 

09.07 Vale of Leven hospital 

01.09 Glasgow Royal Infirmary

27.08 Glasgow Royal Infirmary

03.09 Glasgow royal Infirmary

12.09 Glasgow Royal Infirmary

Conferences

22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
21.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event

04.07 health education east of England 

8.08 NHS Education Board presentation

10.09 Care Inspectorate Conference Older people

11.09 Care Inspectorate Conference Older people

Universities

16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University

5.08   Dundee University Fife campus

8.08   Dundee University 

Colleges
05.03 Cardonald College
11.03 Cardonald College
15.03 Ayr College
28.03 Reid Kerr College
07.05 Reid Kerr College

Outreach - involvement 

14 .02 who cares for the carers BBC radio Scotland documentary on tommy

19.02 South Ayrshire Carers Dementia Awareness Day

26.02 ‘Making Life Easier’ Event Murrayfield

14.03 Lockerbie Carers Dementia Group

22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council Dementia Awareness Event
01.05 ALLIANCE Annual Conference
02.05 North Ayrshire Council Carer’s Strategy Event
09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week
18.06 Presentation to Sainsbury’s staff Prestwick
20.06 ALLIANCE Involvement Networking Event

8.08 South Ayrshire Carers

Policy 

 20.03 members debate Scottish Parliament.

           Stand at Snp conference Perth

02.02 Scottish Liberal Democrat Health Conference

20.04 Scottish Labour Party Conference

02.05 North Ayrshire Council Carers’ Strategy Event