Thursday, 31 May 2012

With thanks to my carer center and mums social worker for the help lately

Hi
 My mum and I have had many ups and downs with services over the last years Meeting people who understood what we where going through  along with  many who did not understand enough the journey and struggles dementia   brings. Its been very tough lately as my mum has struggled and has been very weak, as my mum struggles I struggle by her side. So I would like to thank Linda from my local carer center (I joined a few months ago as I had met so many people on my campaign at carer centers when  doing talks who gave great testament to the help they received ) We have faced many struggles over the years ,but just now its mainly sadness that I am fighting each day  ,so I don’t know how I would have got through the last weeks without having Linda and my mums social workers input, and having them  on the end of the phone when advice was needed .when I started my campaign I had no help and I am glad I now have the help I have now ,its also helped me on the campaigning front as I am finding the treatment by some to be quite shameful. But I will give them; fare warning I do this in my mums name and their behavior will be addressed very shortly I care for my mum with the respect and dignity she deserves and I campaign in her name with the same passion,
So I will leave you with this, its ok to ask for help and when you find good help shout it from the rooftops so others can access and come forward  
Tommy  

Wednesday, 30 May 2012

Care Inspectorate meet the Carers A week today June 26th

Hi
I now have a new date for the carer inspectorate meet the carers that I had to cancel due to my mum being very unwell, I am happy to say my mum is doing a bit better now and the care inspectorate have kindly agreed to do this  wee talk followed by a short question and answer session on Tuesday June 26th 10am till 1pm,I hope some of you can attend ,.this day is intended to bring education ,understanding and new friendships I would like to thank the care inspectorate especially  David and Angela, Carr Gomm for allowing me to use their training room and Pollok carers for all helping me with this event   
I will have a wee agenda soon, I feel this fits in well with my campaign based on listening to and giving carers and families a voice. If you would like to attend please e mail me at   tommy@i-woz-there.com
I hope if you can you will get involved and help make this a good day for all who attend; you can send me any questions you may have direct to my e mail above
I am sorry for any inconvenience caused by the earlier cancelation due to illness
Tommy

Tommyontour film now up on NHS Greater Glasgow and Clyde’s website

Good Afternoon  
With thanks to Daniel Connelly and all NHS Greater Glasgow and Clyde’s for putting my film, story and awareness campaign up on their website under a carers experience and journey, you can view the film and story at the link below
Tommy’s info and link to his film on the following page:
Tommy

Dementia &Caring collecting life stories raising awareness, can you help?

Hi

If you have read this blog before you will be aware that the basis of this campaign is collecting life stories, thoughts and opinions to take to Government, local authorities. the care sector and beyond ,I have lots of  meetings and talks scheduled all if which I do on a voluntary basis in my 18 hours cover each week I truly believe the best way to bring more understanding and help is to hear from families who have faced or are facing dementia and all that it brings, I have found and met many good people who are taking great interest in our life stories and thoughts, people who are in a position to make a difference for us ,I will continue to take anything received direct to the people who need to hear our stories
So if you have a life story or any thoughts or opinions  you would like to share in order to raise awareness ,understanding and to help others please e mail me at tommy@i-woz-there.com , over the last year I have put great effort into finding good and the right  people to take the correspondence too and believe we have a chance to make a difference
Tommy
  

Meeting councilor Susan Aitken on Friday, meeting councilors in Edinburgh soon


Hi

I will be meeting Glasgow city councilor Susan Aitken on Friday, this is part of the follow on from my motion passed at Glasgow City Council back in February, I met with councilor Kerr last week who is the labour Social care lead at Glasgow city council, Councilor Aitken is the SNP spokesperson on social care .I also hope to be seeing councilor McDonald who set this meeting up and supported my motion before the local elections

Also over the next week I will be through in Edinburgh to meet the social care leads and spokespersons at Edinburgh City Council with thanks to Councilor Child for her help in setting the meetings in Edinburgh

I am hoping the meetings  will help my plans to raise awareness on Dementia and Caring and I look forward to building a good working relationship with all concerned over the next months

Tommy  

Tuesday, 29 May 2012

Meeting and speaking at the memory café in Kilbirnie on June 19th

Hi

With thanks to Kerry  the Dementia Support Co-coordinator based in North Arshire for inviting me down to meet with carers and families to talk about my awareness campaign and caring for my mum

The memory café is at the Bridgend Community Centre, Stoneyholm Road, Kilbirnie, this café along with a few others is run in conjunction with North Ayrshire Council
I look forward to meeting everyone, and once again a big thank you to Kerry and all concerned for inviting me down

Tommy


My wee mum seems to be doing a bit better today,

Good Morning
Never mind the last 5 years the last 3 weeks have been a real worry , 3 weeks ago my mum lost all her energy ,balance and stopped talking completely
We have had the doctor out a few times and we are looking at my mum’s weight loss amongst other concerns the last few days have been a bit better and today my mum is down sitting in the living room having a wee moan about me and everything I do, trust me that’s a good sign, I am hoping this is the start of my mum regaining some of the strength and awareness she lost over the last weeks ,so we start today with a wee spring in our steps and hope for more of the same tomorrow
Tommy

A week tomorrow June 6th is a year to the day since I launched my campaign with a walk round Scottish cities

Hi
Well a week tomorrow June 6th is a year to the day since I launched my campaign with a walk round Scottish cities .Much has happened over the last year ,I have met inspiring people ,received hundreds of life storries and learnt so much ,I feel this has been a positive year of campaigning even though I have been used and badly let down by some and shocked by others this does not  compete with the many who support and inspire me  I hope to build on the campaign. More talks are lined up along with  awareness raising and I will continue to collect life stories to add to the many hundreds I already have,to help tell the story of living with dementia and caring for a loved one .My Desire and passion to raise awareness has only increased I hope you can help me celebrate the first year next Wednesday by sharing my film, blog and story and Let others know the campaign continues and to keep the life stores coming to help others
Each day I care for my mum, every life story I receive, all the people I meet inspire and increase my desire to keep going, there is much to do
Tommyontour film shown at parliament http://tv.enterprisescreen.co.uk/watch?v=347Tommy on tour blog   http://tommy-on-tour-2011.blogspot.com
Tommy

Monday, 28 May 2012

Really positive meeting with NHS &CHP Glasgow today

Good Evening
Well it a lovely afternoon in Glasgow and my wee mum was much brighter this morning, I had a meeting this afternoon set up by Peter Daniels and with some NHS &CHP department heads
It was a really positive meeting and we discussed and agreed on many issues and are now looking at ways to work together  to highlight care and caring
I really feel inspired by today’s discussions and I will update more once we have had time to digest and come up with an action plan on all the areas covered
So back home now time to get my wee mums dinner on then her wee  bath and pajamas,
Today felt like a better day for my mum and a good day for awareness
Tommy   

What We Need is a Dementia Center for Excellence,

Good Morning
I have met many people doing great work over the last year, and many who have no understanding of Dementia and life caring for someone, one of the most disappointing things to me the competition element for funding, and tendering for services between some organizations, what we really need is a Dementia center for excellence A center that does not supply services or is involved in politics in any way shape or form. The issues and emotional impact dementia  brings deserves professional ,personal  advice and guidance with no influence or other outside motives .a place to either visit or contact to get advice and get directed  to the best help and services in the  area you live ,SERVICES THAT WILL HELP YOU  FROM BEGINNIG TO END OF JOURNEY We have many great services out there and I would like to see all organizations who supply care on dementia and caring to promote each others work and invite people from other organizations on to their boards and work together its too important not to ,This journey is our last years together  with someone we love and people like my mum and their carers deserve the best impartial advice, I have been offered some opportunities to work with some  organizations over the last year but their unwillingness to even listen to and work with others at a national level disturbs me, this lets down the great work done at local level  
As I sit with my mum struggling to cope, I find this most unsettling

Tommy   

Sunday, 27 May 2012

A Beautiful Day and a Glorious Feeling Inside as my Wee Mum makes it from the Bedroom to the Garden

A Good Sunday Eveneing to all
Well it’s a beautiful day here in Glasgow, the last few weeks have been filled with sadness as my mum lost so much strength and was pretty much confined to bed .Well today with a bit of help and support from her big boy my mum was able to make it down the stairs and into the back Garden .IT has taken a lot out of her but we are going to sit down  and have Sunday dinner in the back garden and seeing my mum up on her feet and doing a bit  better makes me feel so proud of her and her spirit and her determination to fight this illness
So a beautiful day and a  beautiful feeling inside, only one thing can spoil it ,me cooking the dinner oh well you cant have it all
Tommy

Meeting NHS Glasgow board members Today

Hi, A good Sunday morning to all,
Today  I will be meeting some board members from NHS Glasgow via Peter Daniels the Non Exec Vice Chairman. I met Peter a while back when I was the guest speaker at a Carers rights day event. Tomorrow we will be discussing how I can increase my talks to NHS staff about Caring ,Dementia ,the letters I receive and the experiences of people I meet on my tour ,I have already spoke at some events and my film and story is going up this week on some NHS sites  under A Carers Journey. I would like to thank Peter ,the board and the community engagement team for their interest in this campaign and on  how we live and feel caring or needing care .I have some other ideas and proposals to put forward and I will update more after the meeting  
Tommy    

Saturday, 26 May 2012

Ann Pascoe, a Carer's voice in East Sutherland and her travels to India

Good Evening

I have met many people through my campaign all doing great work and  raising awareness in their communities and beyond, I met with Ann from East Sutherland, Ann is doing great work in East Sutherland ,Ann cares for her husband Andrew and they are both out in India raising awareness, Ann is hoping to come back to the Highlands next month with plenty of ideas for making our own Communities' more dementia friendly
Please see below for more info and a link to their page, work and travels

Good luck Ann, I hope we meet again one day

Tommy

My mums name is Joan Whitelaw she is not an illness or just a wee woman with dementia

Hi
To many times  caring for my mum I have witnessed my mum being viewed as her illness and not the person she is ,So on this sunny morning in Glasgow I hope I say this for all who need care ,are being cared for or will need care one day  I would like to say the following to all who walk through our door or  meet my mum , and I hope I speak for other people who have a loved one with this or any other illness when I say…
My mother’s name is Joan Whitelaw. She was born  July 1939.
She has been:
  • a daughter,
  • a sister,
  • a wife,
  • a mother,
  • a grandmother
  • a friend,
  • a workmate,
  • a neighbour,
  • a valued member of her community,
  • a true, honest and dignified lady
and, like so many others of the 82,000 plus people in Scotland, she is now to often labelled as ‘a wee women with dementia’. An illness we, at this time, have no cure for,

Dementia, just when you think you have a routine dementia changes everything


Good Morning
It will be 5 years in August since my mum was diagnosed with vascular dementia and I have been my mum’s full time carer for just over 4 years I always look at my mum for the greatness she has and the life she led. The reality is Dementia has thrown everything it has at my mum, confusion, agitation, fear, picking away at her awareness and capabilities, we have been through so many twist and turns and at points days where almost unbearable for us both, at all the stages just when we find a way of getting through the days and weeks dementia changes everything, our understanding, our routines and tests both our abilities and strength to keep going. I always view my mum as the greatness she has ,at the same time I have to try to love and care for her and adapt to each day that comes ,I keep saying it cant get worse ,it cant get harder ,but it does ,a few weeks ago we woke up one morning and along with all the other difficulties dementia has thrown at my mum ,my mum struggled to stand up , have any form of balance or walk. My wee mum has been so quiet hardly a single word in weeks .Dementia has brought many struggles to us, and as a son at this time has brought a sadness that I cant escape from I do the best I can every day and cry myself to sleep each night .Just when we find a routine that allows my mum to be as comfortable and settled as can be, Dementia changes it again .BUT I WILL NEVER ALLOW DEMENTIA TO TAKE AWAY IN MY HEART THE GREATNESS THAT IS MY MUM .This Truly is A Cruel Illness  
Tommy  

Friday, 25 May 2012

Motion Glasgow City Council colecting thoughts and opinions

Hi
Back in February I had a cross party motion passed at Glasgow City Council To form a cross party working group to look at Dementia and caring for a loved one over all the areas Glasgow city council covers and for the findings to be handed over to the Scottish Government,I will be a carers representative on this group .I would value any thoughts ,ideas opinions or issues to help in my / our work Please let me know anything you would like to me mentioned or put forward for this group to look at, we can be part of bringing more help and understanding I would appreciate and value anything you may like to share you can e mail me direct at tommy@i-woz-there.com
This is a chance for carers to have a voice
Tommy

Felt Like a Good Meeting at City Chambers Today

Good Afternoon  
I had a meeting with councilor Kerr (who is the lead on social care at Glasgow City Council) along with Stephen Fitzpatrick head of Adult services with social work Glasgow
Firstly I would like to thank Matt Kerr for fulfilling his promise and continued interest in my campaign, and Carers a promise he made before the local elections to meet again and work on some ideas ,I am also encouraged  by the time Stephen has given me lately in my quest to raise awareness, we discussed some ideas and hopefully we can continue with some of them at a later date ,I am hopeful and looking  forward to building on and working on some of the ideas with them in the near future We also discussed the motion I had passed back in February and it was confirmed I will work with the  Cross Party Working Group on a  report on Dementia and caring in Glasgow to be handed over to the Scottish Government
I will post an update once we have had time to digest today’s discussions
Tommy

Thank You all for the support, Re-Tweets and for Sharing my Campaign

Thank You all for the support, Re-Tweets and for Sharing my Campaign
I would like to thank everyone for supporting, re-tweeting and sharing my dementia awareness campaign and film ,I have not been the best at re-tweeting for others and for that I am sorry ,time is against me just now my mum is not doing to well and needs me more each week and I wont let her down ,after caring for my mum ,my awareness campaign is closest to my heart ,so thank you everyone for the support ,it keeps my spirits up  during the struggles my mum faces and the struggle I as a son face to care and witness ,every day caring for my mum makes me more determined to highlight this illness and life caring for a loved one
Thank you
Tommy and Joan

Meeting Councilor Kerr at City Chambers Today,

Good Morning
I have a meeting with councilor Kerr and Stephen Fitzpatrick from SW Glasgow this morning at the City Chambers, we met before the local elections and we are now meeting again to discuss some ideas with regards to Dementia and Caring .I had a motion passed February for a report to done on Dementia and caring in Glasgow and for the outcome to be presented to the Scottish Government so we will also be chatting about the plans and workings for this report. My mum is still to well at the moment and I had canceled all my other plans over the last week during my hours but I feel its important to attend this meeting and keep going as best I can to keep my awareness campaign going, My mum is my personal inspiration and was my reason for starting this campaign and every setback we face as much as it hurts makes me more determined to do something that highlights  helps  others facing this tragic illness and caring for a loved one     
Tommy

Thursday, 24 May 2012

A wee photo of my best pal and me Joan Whitelaw my mum

Hi
My mum has not been doing to well lately, I mentioned it was sunny outside the other day, not at sunny as the sunshine from my mums heart
Thomas and Joan Whitelaw  24th may 2012


The Importance of Promoting Good Practice and Help

Good Morning
I like many others who need or care for a loved one face many issues and difficulties in our Life, As I have said many times over this campaign we thought we can do this alone. When my mum was diagnosed with dementia I remember looking at her and thinking we will be ok, and there was a reason for that, I had no clue what dementia was, I had no understanding of life caring for someone, What I thought was I am a strong person I have worked hard like my mu all my life and I have had up and downs in life like most do
How wrong I was ,how unprepared I was ,as my mum struggled with dementia I fell apart by her side our journey went  from not thinking we needed help ,to not knowing how to access help to being so lonely ,isolated and broken that we did not know how to ask  ,My campaign along with raising awareness was my cry for help, I left my house just over a year ago with little support in place and with some questions ,how did we reach such desperation ? How do others cope? Sadly I have heard and met many people who have faced greater struggles than we have ,but I have also learnt and met amazing people supplying good advice ,help and understanding that why its important along with raising issues we celebrate and promote good practice ,advice and help that is already available ,I have met many people doing great work and with great understanding of our lives and needs, in fact that’s why I joined a carer center ,I witnessed the help they give and realized the help I needed on my travels .I have said before the biggest advantage is having someone look at your life and needs treat you with respect and help with many little things that allow you to get on with caring for someone you love .its not a golden ticket but its help
For the next part of my campaign I want to promote good practice from people, in the care sector and beyond and encourage people to come forward and get the help and advice that they deserve and may need, its ok to ask for help, I also want to bring more understanding on how we live and feel to people who come into our lives and homes ,
Our history, thoughts and feelings have to be explored and considered and we also have to understand more about the people who supply and give us care
It’s a two way street we all have to listen to each other to find solutions and build relationships and care that works for all concerned,to many time people have refused to listen to me about my mum and too many times I have not been prepared or able to listen to them ,this causes a breakdown in relationships and care
As my campaign has gained pace I have been offered many times by organizations to chair or become a carers representative but that always comes at a price that comes with we are the best, we know best and direct everyone to us, that’s why I still and always will do this independently  I am not there to be used in politics or organizational squabbles or funding campaigns and on to  many occasions excluded from discussions
I want to promote good help and practice in whatever shape or form it comes and get people help before they reach the crisis my mum and I came so close to
Here at two questions we have to discuss, explain and highlight, answer and bring more understanding to

What is dementia?

Who and what is the life of a carer?

Tommy
    

Glasgow North East Carers, Back to See Good Friends

Good Morning
I will be back over at Glasgow North East Carers on June 7TH To meet with and update all the gang on my awareness campaign and progress, the team who work there and the amazing carers and families who attend this group and center are  a big part of my campaign I received life stories and some of them where kind enough to appear in my wee film, but more than that they inspire me to keep going and bring a smile to me face,

Tommy

Wednesday, 23 May 2012

With thanks to Scottish Dementia Clinical Research Network

Hi

With thanks to Philip brown Scottish Dementia Clinical Research Network Administrator for taking time to talk with me on the phone today and for putting my story ,blog and film on their site, you can view their site and get more info on what they do  along with my page at the link below  



Just had the Doctor out again,

hI
My wee mum is not picking up at all from our wee setback a few weeks ago. Two weeks ago ,although facing many struggles my mum could  attend a wee day group twice a week and was reasonably mobile .for the last two weeks my mum has been mostly confined to bed ,unable to walk and with very little response or communication. I called the doctor out again this morning hoping to find an underlying problem that was easy to fix, we had tests done about ten days ago and with the doctor now being out 3 times in the last week I sit fearful that this is the next stage of my mum’s dementia. Dementia has brought many challenges to my mum and to me as her son and carer, this is one by far is the saddest To sit beside my mum with little or no response and watching how weak and frail she has become is breaking my heart .My mum has surprised us before by gaining strength and awareness’ I hope and pray she does again and soon, this time I am not so sure
Tommy  

Busy Week Coming up, Depending on how my Mum is doing

Good Morning
Well my we mum is still quite weak so all my awareness plans this week had to be cancelled so I could give her my full attention ,I have a busy week coming up if all is ok at home ,On Friday  I have a meeting at the City Chambers with councilor Kerr and Stephen Fitzpatrick from Social Work to pick up on where we left of before the local elections .On Monday I will be meeting with Peter Daniels non exec vice chair of glasgow NHS THEN ON Tuesday I will be meeting Professor June Andrews all of the aforementioned meetings will involve dementia and caring awareness and how and if we can work together on different ways to raise awareness, Also you  may have watched on TV or heard on the radio over the weekend Jeanette’s story re 106 care workers in one year, I  have been in touch with Jeanette today and will be traveling to Aberdeen soon to support her when she meets with council leaders.Once again I salute her courage in allowing her interview to be aired with the sad loss of her dear husband Kens a few days before broadcast
tommy

Tuesday, 22 May 2012

It’s a Beautiful Day Outside but We Sit Alone Indoors

Hi
It’s a Beautiful Day Outside but We Sit Alone Indoors
Well it’s a beautiful day outside the first lovely sunny day for a while As I sit in the house with my wee mum watching people smiling and getting on with life ,mowing the lawn and all that  the sunshine brings ,it just reminds me  of the struggles we face ,my mum is to weak to get out of bed at the moment never mind outside ,we had a dip like this before and my mum got through it and back on her feet as well as good be expected ,its funny I wish it was raining then I could blame the weather and not the reality ,we will see how my wee mum goes tonight and if no improvement then I will get the doctor back out tomorrow
my mum  is getting her favorite mince and potatoes tonight hopefully that will do the trick (it’s a Scottish thing that and homemade soup the go  too food in times of trouble)
Tommy

Meeting with Carer Scotland and the Princess Royal Trust for Carers

Good Morning
With thanks to carer Scotland and the Princess Royal Trust for Carers for both getting back to me and agreeing to set up dates to meet up to discuss my campaign /tour and findings over the last year .I look forward to meeting up and hopefully working on ways to highlight Dementia and Caring ,I have visited lots of carer centers over the last year including many run by PRTFC and value the work all carer centers do in local communities and with the families they are in contact with ,if you have watched my film this includes an amazing group of peolpe who attend Glasgow North East Carers based in Easterhouse , we have to promote all carer centers and encourage carers to get in touch and see what help is available ..I feel I meet to many people who reach near crisis before asking for or getting help they deserve or need, I was one who should have asked for help sooner .for me not being aware or having access to any help that is available is a tragedy in itself .carer centers do not have a magic wand but getting advice and support is crucial ,dont miss out on help that is available how little it may.be
Tommy

Monday, 21 May 2012

My wee mum doing a bit better today

Hi
If you read this blog you will have read that my wee mum has been struggling over the last weeks Today was better, a wee bit of color back in her cheeks and strength in her eyes ,I hope tomorrow brings more of the same ,watching my mum deal with this illness just makes  me more determined to care for her and more determined to raise awareness, and I have to say the understanding of this illness has to be taken to a higher level ,we have to raise the discussion and the  awareness , for me the most disappointing thing about raising Awareness is some who claim to know better are often the hardest obstacle to get over ,Dementia will beat my mum and I  one day ,but the arrogance of some i have met on this campaign wont ,that’s for sure
Tommy

Meeting with NHS Glasgow board members, on Monday

Hi  
With thank thanks to Peter Daniels non exec Vice Chair NHS Glasgow for arranging a meeting with some board members to discuss my campaign, talks and plans I met Peter a while back when I was a guest speaker at a carers rights day event, I look forward to seeing him again and hope we can do some awareness work together, although this all depends on my mums health and if can sort out the situation re cover that is holding us up
Tommy

Meeting councilor Matt Kerr on Friday at City Chambers

Hi
A big thanks to councilor Matt Kerr for getting in touch to meet up again, I met with Matt before the local elections as part of my campaign and motion raised at Glasgow City Council, Stephen Fitzpatrick head of Adult Services Glasgow SW will also be there, Stephen and Ann have shown great interest and advice on my campaign. I would like to thank them both and Councilor Kerr for his continued interests and support and I hope we can take forward some ideas discussed before the elections
Tommy

Sunday, 20 May 2012

Sitting watching my wee mum sleeping

Good Evening ..........
Well it half past eight at night and my wee mum is tucked up in bed sleeping,I sit in her room to make sure she is comfy and settled ,.The last weeks as have the last four years been a struggle for my mum, dementia has taken its toll on her ,my wee mum is just so weak and frail just now that it hurts to the core my soul ,Tonight after I tidy up and go to bed myself feeling sad and mostly helpless I always hope for two things ,firstly that tomorrow will be better than today and secondly  that my mum will remember my dad  the man she loved ,the first rarely happens  but when it does it makes my heart smile ,the second never will .in order to care for my mum I have to accept her memory and understanding of me is most but gone ,Its not remembering her wee hubby Tam that hurts the most and I can never get over that.
Tommy

Meeting Professor June Andrews (Dementia Services Development Centre)

Hi
I am looking forward to meeting Professor June Andrews again soon to look at ways we can work together
I first met June onSally Magnusson’s Sunday morning radio show then stopped in at her base the Dementia Services Development CentreUniversity of Stirling on my walk round Scotland .We Met again last Tuesday when we where both guests on Scotland tonight ,after a wee chat we both agreed to look at the possibility of joining the amazing work they do  and the thoughts and feelings from the families and carers I meet and who write to me ,I feel this is a positive step forward and look forward to us all doing great stuff together in the hope of bringing more help and understanding on living with Dementia and caring for a loved one
You can get more info on the work they do at links below including a virtual tour
The DSDC website address is www.dementia.stir.ac.uk

Tommy

Saturday, 19 May 2012

Today is Just a Sad Day


I try my hardest every day to be positive in both my home life caring for my mum who is facing this dreadful illness  and in  my awareness campaign ,but I have to say this change the dementia has brought to my mum over the last weeks is just filling my heart with sadness I feel this could be the start of my wee amazing mum being close to bed ridden .I HOPE I AM WRONG My mum  has  been through so much  over the last years.The confusion ,the agitation ,the absolute fear of everything ,the daily fight to keep respect and dignity ,That is how my mum lived her life with respect and dignity ,but this illness shows no respect and does not allow dignity to easily  just now I sit in tears with saddest of hearts watching my mum fade away in front of me, and its dreadful ,its  a dreadful illness ,its dreadful to watch and witness ,I just want her to know I am trying my best and I just love her ,And I want the people who should know better to remember this is my mums fight for life and dementia will be my  fight  till the day I die and I wont forget some who have tried for their own interest to belittle  our campaign for their own purposes ,funding and egos, that I do this in my mums name and when they offend my campaign they offend my mum
Tommy

Friday, 18 May 2012

Dementia, the Loneliness is about to get Lonelier

Good Evening
 As it stands my mum is not doing to well and can’t stand up so it looks like the end of the day care she attended twice a week, this is a great shame as I liked my mum to get out and get social interaction. on top of that I had problem switching cover the other day  with the organization that supply the visiting  service and had to get my carer center and social work to fund the cover I needed to speak about Dementia on television ,Today I was told by one of the management that my account of the reason for not getting the cover was untrue ,this has resulted in me canceling all future services as my trust in them has gone How can I leave my mum alone with a service who over such a small incident change their story ,what if my mum had an accident when I was out how could I ever believe anything they told me after this ,so now no day center no house sitters ,I will struggle to trust anyone again after treatment like this ,so back to my mum and I at home 24 hours a day
Tommy

Tommyontour, Collecting Life Stories Raising Awareness the Campaign Continues

Hi
If you watched Reporting Scotland today you would have heard and viewed Jeanette and Kens Story, Jeanette sent me a letter a while back and I handed her story over to the Deputy First Minister last week. Jeannette was due to travel to parliament with me two weeks ago, but understandably had to cancel due to her dear husband’s health, I have been in contact with the Deputy First Minister today re their letter and story
I have no words to describe my respect for Jeanette for allowing her interview to be shown with the sad loss of her dear husband Ken last week .I was in touch with Jeanette last week to ask if she wanted me to stop the story being broadcast today ,Jeanette with great passion and courage wanted this to be aired to help others and she has my fullest respect ,If you have a story / experience good or bad that you would like to add the many others I have, to help raise awareness please send to tomm@i-woz-there.com  we as carers and families are best place to tell the story of Dementia and Caring in Scotland ,we as families and carers are best placed to bring more help and understanding ,our stories straight from the heart to Government without distortion can help others
My thoughts and tears are with Jeanette and her family today
Tommy

Dementia, the Sadness in my Heart,


I have been caring for my mum for nearly 5 years now and watched every step of the destruction this Illness brings and I will never compare how I feel or struggle to my mums But as a son to bear witness to this cruel terrible illness every day is breaking my heart ,at every point when I thinks what more can this illness do ,how much worse can it get ,Dementia decides to do more and make it worse so I will say what every organization wont my mum suffers and I suffer every day to witness it
So I  will lay out this request to every organization involved and funded to work on Dementia and Caring who represent us tosit round the table and TALK AND WORK  together to help families ,And I publicly ask them to meet with me; we need a new debate and more working together ,I will let you know who agrees to meet and listen to my personal experince and findings  

Tommy

link to Today on Reporting Scotland interview with Jeanette who sent me her story

Good Morning
I hope you can watch Reporting Scotland today; there will be an interview I set up with Jeanette who sent me a letter, A letter I handed over last week when I met with the Deputy First Minister,sadly Ken ,Jeanette’s husband past away last week, I don’t have the words to explain my respect for this amazing lady who on the day of her late husbands service has asked that her interview still be broadcast my thoughts and tears are with Jeanette and her family

Thursday, 17 May 2012

With thanks to Glasgow City Council and the Lord Provosts Fund

Good Afternoon
A big thanks to Glasgow City Council and the Lord Provost Fund for helping me with a wee funding package to help with my travel ,this  will allow me to continue doing my talks and raising awareness on Dementia and caring. As a carer I have been struggling to get to and from talks, meetings and events this will allow me to continue my awareness campaign .I was very close to having to stop and this would have been heartbreaking for me
A special thanks to Stephen and Ann for nominating me and to the city I come from for helping me continue
Thank you
Tommy

Care inspectorate meet the carers have to re schedule due to illness, sorry

hi
My wee mum is not doing well at the moment, my mum  has been unable to walk or barely lift her head from the pillow  for the last few days ,so I am sorry to say I will have to re schedule my planned event on Monday ,I will have to give my mum my full attention at this time and feel its better I re-schedule my event on Monday and move to a later date
I am sorry for any inconvenience but I need to be with my mum constantly  at this time
Sorry
Tommy

Looking to start a dementia and carers focus group

Hi
I am looking to start a group to work on dementia and caring for a loved one, many people who are in touch are looking to get more involved in bringIing  help to others, I  am looking for us to represent independently the lives, thoughts, hopes and dreams of  people facing dementia or caring for a loved one Now that I have a direct line to St Andrews house I feel we can help tell the story of Dementia and Caring , along with the many letters I receive, It would be great to have a mixture of families and people who work in the front line with carers from all across Scotland
We can help guide future policies and funding
Please get in touch if you are interested in forming a dementia ,families and carers group.A group based on peolpe run by peolpe in the interest of others
tommy

With thanks to Councilors Matt Kerr and David McDonald

Good Morning,
I will be back over at the City Chambers next week to meet with Councilors Matt Kerr and David McDonald in the weeks before the local elections I had met with them about different aspect of my campaign,I am happy to say both have been back in touch , I will me meeting councilor Kerr next Friday and Councilor McDonald date to be confirmed to pick up on where we left off I am grateful for their interest in my campaign, dementia and caring
Thank you
Tommy

Wednesday, 16 May 2012

Scotland Tonight, a link to last night’s interview

Good Morning
I was one of the guests on last nights Scotland Tonight show ,with thanks to the other Guests June and Simon and to John and all the team involved with the show for taking the time to look after us and for sitting for a chat after the show
Tommy

http://player.stv.tv/programmes/scotland-tonight/2012-05-15-2230/

Care Inspectorate; Meet the Carers, with thanks to Johann Lamont

Hi
  This coming Monday I will be hosting an event for carers and people who work with carers to meet and hear about what the Care Inspectorate do. With thanks to David Cumming for taking the time to come along and taking the time to meet with us all. The event will be attended by people I have met on my awareness campaignI would also like to thank Labour leader Johann Lamont my local MSP for popping in to chat with carers and families
I hope this is a day of education, questions, answers and friendship
Tommy  

Tuesday, 15 May 2012

Cover Sorted For Tonight

phew !
Well I am happy to say cover is sorted for tonight, with thanks to social work and Pollok carers for their help with juggling my hours to get me through the 10pm cut off
I have been informed this was a clerical error  by the organsiation who supply cover and the night time cover I have in place  but never use as part of my package will come into force
I  am happy this has been sorted out as I was uncomfortable leaving my mum with new carers,especially as i vary rarely leave the house in the evening ,so alls well and ends well
Tommy

Sad News from an Inspiring Family

Sad News from an Inspiring Family
Hello
I sit today with great sadness in my heart, on my mission to raise awareness I receive letters from all across Scotland and meet with many carers and families
I have got to know many carers and families, including one amazing lady from Aberdeen,we have exhanged e mails and  had a few chats on the phone, sadly she has got in touch to tell me her husband passed away over the weekend
Her letter was included in the collection I handed over last Wednesday when I met with the Deputy First Minister
 I never met her husband but I met this amazing lady, her struggles, love and care inspire me, and even without meeting him, reading about and talking with my friend I know the love they shared and the care she gave, I made a promise to this fine lady a wee while back  that I would be up in Aberdeen to see her one day and that’s a promise I will fulfill in the near future
My thoughts are with this lady and her family
Tommy

On Scotland Tonight ,Tonight (if i can get cover)

Good Morning

I will be a guest on Scotland Tonight at 10:30pm this evening, I filmed an interview with them last week, i beleive some of this will be will be shown, then I will be part of a panel discussing Dementia and Caring .This will be only my 9th time out of my house at night after 5pm over the last two and a half years,on the other 8 occasions I was raising awareness. I am furiously trying to find someone to sit and care for my mum while I am out .the organization who supply my befrienders (who social work pay them for this service) will not cover me as they say the workers they have do not work after 10pm, sums up the difficulties in Caring, Raising awareness never mind trying to have a life
My sadness is I am only leaving  the house for one and a half hours to raise awareness on a tragic illness ,an illness that  affects so many across Scotland including my we mum and  me as her son and carer
I am lost for words
Tommy

Monday, 14 May 2012

I will be on Scotland Tonight Live in the Studio Tomorrow Night STV 10:30pm

Hi
I will be live on Scotland Tonight tomorrow at 10:30pm STV chatting about dementia caring for my mum and the letters I receive,I believe they will also be showing an interview filmed at the house  last week for the guests to discuss
Not sure yet who the other guests will be, I hope you can tune in and I hope I get asked questions that are relevant to dementia and a life caring
 I also hope I don’t fluff my lines or ruin my months of hard work raising awareness ,but mostly I hope I don’t let my mum or the people who have taken my campaign to heart down
Tommy

Dementia &Caring, Collecting Life Stories Raising Awareness

Hi
Last week I handed over some more life stories as part of my Dementia and Caring Awareness Campaign, now more than ever I feel its important we share our experiences, I will now be dealing direct with the dementia strategy team at St Andrews house,our life stories and experiences will help bring a new an better understanding on both Dementia and Caring for a loved one straight to the heart of Government. I hope you can help add to the hundreds of amazing people who have already shared their experiences, .Our Experiences straight to the Decision makers. We can help others who will face what we have faced, or are facing at this time
You can e mail me direct at  tommy@i-woz-there.com
Thank you
Tommy 
Son, Carer .Awareness Campaigner

Sunday, 13 May 2012

Feeling Positive after Meeting Last Week

Good Morning  
Its Sunday morning and I have been up early as we always are here at home, MY wee mum has had her bath and breakfast and is sitting comfy across from me as I sit here typing for my blog .Lat week I had what I feel was a positive meeting with the Deputy First Minister and the team from St Andrews house at Parliament ,after handing over some more life stories and a wee update on my progress ,hopes and dreams for dementia awareness we had a chat but more than that I feel encouraged that the DFM takes time to discuss and listen.Dementia awareness involves being patronized all to often and mostly by people you believe have our interests at heart ,well I don’t feel that from the DFM, I feel inspired by her willingness to listen and advise and mostly her concern about Dementia ,Caring and our thoughts and feelings.The team from St Andrews house have been back in touch and we are meeting before the end of this month to discuss the letters, my report and our thoughts, who knows what this may lead to ,I hope something positive ,also on a positive note I had a good meeting on Friday with social work adult services leads  and we are looking at ways to get involved including focus groups and awareness talks .
Since stating this campaign I am pleasantly surprised and inspired by some who are getting involved and showing interest in us, the down side is many of the people I thought would help or listen to and about us as this is what they proclaim to do have left me feeling let down and sad ,one day they might realize its not about them ,its about all the people across Scotland and beyond just like my we mum and their families who need and deserve better understanding , respect and help ,so I wont let the disappointment I feel towards some get in the way of the respect I have gained for others and my hopes and dreams for a better future for all  
Tommy

Friday, 11 May 2012

Today’s Meeting with Social Works Glasgow

Good Afternoon
I met with Stephen and Ann today from adult services social work Glasgow, we discussed ways to further my awareness campaign along with discussing caring for my mum and dementia. Ann is setting up some talks for me with staff along with students studying social care. We also discussed ways of encouraging and reaching out to families and carers to make them more aware and have access to help that’s already available to them in the area they live. We also had a quick chat about the motion I had passed at Glasgow City Council earlier this year and she has offered to help me put some focus groups together and for me to attend to try and find out the feelings and thought of families and carers as this will form a big part of this report and project. I am grateful for the time they have given me lately.  I hope anyone reading this knows it ok to ask for help, I wish I had a lot sooner in my personal journey caring for my mum
Tommy

Thursday, 10 May 2012

Meeting Social Work Glasgow Today

Good Morninig
I will be meeting head of adult services social work Glasgow today to update on my campaign and discuss dementia and caring, we are looking for ways we can  work together to raise awareness on dementia ,caring and services .I feel encouraged by thier interest and involvment in my wee campaign ,social work fund and pay for a lot of the services we recieve including in my case befienders from Alzheimer Scotland ,also since joining my local carer center for help and advice,my mums scoial worker has been working closely with Linda from Pollok Carers  to look at our care package and future neeeds

Tommy

Wednesday, 9 May 2012

A Good Day Today at LTCAS Then With Deputy First Minister

Hi
Today felt like a good day, this morning I was one of the guest speakers as the LTCAS launch of their new carers and families involvement project ,it was good to see old friends who have supported my campaign since the start ,with thanks to Ian ,Nancy Susan all involved and who attended .I then caught the train to Edinburgh for my meeting with the Deputy First Minister Nicola Sturgeon along with the team from St Andrews house Jeff and David who work on dementia projects and strategies .I handed over some more life stories along with an update on my progress and the people I meet on my campaign ,we had a chat about dementia ,caring and discussed some ideas and plans that I put forward for feedback .we discussed many things including looking at ways  to help ,encourage and guide people to good help and care that is already available amongst other issues.I will be meeting with Jeff and David again in a few weeks to discuss in more detail the areas we covered today and will be meeting with the DFM again in a few months time to update on any progress from my meeting with the team at St  Andrews house  
Once again I am grateful for the Deputy First Ministers ongoing interest in Dementia, Caring and my wee campaign. It felt like another small step forward today
Tommy

Tuesday, 8 May 2012

Today Speaking at the LTCAS then of to Parliament to meet the Deputy First Minister

Hi
well i am speaking today  at the LTCAS based in bath Street, then traveling through to Edinburgh to meet the Deputy First Minister. As a son and carer I am grateful for the chance to speak about caring for my mum to others and for the Deputy First  Ministers ongoing interest in Dementia ,Caring and my wee awareness campaign .As I sit typing this I am overwhelmed and in some cases pleasantly surprised by some who are taking notice and genuinely concerned and interested in our words and thoughts, the flip side is I am almost shocked at others who don’t feel they need to  or want to listen as they know best , but really should be as they claim to understand and represent how we live and feel


Tommy

Dementia and Caring, Filming Interview This Morning, Meeting Deputy First Minister Tomorrow

Hi
Good Morning
I will be filming a short interview this morning for Scotland Tonight ,to be aired this evening, it kind of limits what I can and cant say as I wont be in the studio  for the live discussion
That’s a shame as I have a few questions for the guests who will appear,
Tomorrow I will be meeting with the Deputy First Minister along with the Dementia Strategy Team; once again I am grateful as a son and carer for this unique opportunity I am hoping to put a group of carers together to help guide future policies. I feel it’s important we have a group of carers who can speak openly and honestly about Dementia who are not connectect to any group or charityThis allows open honest discussion about dementia and caring without influence or prejudice and truly gives carers a voice.

tommy

son ,carer ,awareness campaigner

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