Saturday, 30 June 2012

Discussing end of life care with my mums CPN earlier today, this house feels like the loneliest place in the world tonight

Hi
Well its nearly 1am, and I cant sleep, I don’t sleep much lately I have my mum to check on through the night, but I cant sleep tonight ,my wee mum was diagnosed with Vascular Dementia 5 years ago this august  and this illness has thrown everything it has at her ,my wee mum has been through so much and each time its takes another affect on her mind and body we fall apart, then pick ourselves up best we can  and try to adjust to the next stage of this jounrey.My mum is so weak just now and has been for quite a whiles. As a son caring for his mum I have witnessed this journey and all that it brings and without any one saying I know where we are just now.One more dip like the dips we have faced 3 or 4 times a year since this illness came into my mums life will be near as much as my mum can take.Sitting tonight after a visit from my mums CPN trying to face the reality of where we will be when that comes is a dreadful conversation but an honest one .We as with so many others  who face this illness or care for a loved one are aware this conversation will come one day and face many struggles and too much loneliness and isolation along the way
Sitting in my room just now feels like the loneliest place in the world tonight I cant imagine a lonelier place, I hope there isn’t anyone feeling lonelier than this tonight as it’s a terrible place to be
Tommy

Friday, 29 June 2012

With thanks to my local carer center Pollok for helping with flexible extra hours of cover for my mum and I

Hi
A big thanks to Linda and all the team at Pollok carers for finding and funding some extra respite hours to allow me to fulfill my commitments on my Tommyontour awareness campaign Since my mum has been to unwell to attend day care anymore I have lost 48% of the time I had to live or campaign, also the hours I have with my provider are not flexible and have to be used up each week so this allows me  to add the odd hour here and there to keep my passion to raise awareness alive and fulfill commitments I have for talks and awareness raising ,my campaign saved by the bell  
So thank you Linda Nice work, nice understanding, and nice people  
Tommy

Wednesday, 27 June 2012

Dementia is a love story tinged with tragedy ,we as a society can help lesson the tragedy in small ways and allow more time for love and care

Good Morning

Sitting alone at home as we always do and have done for most of this journey since my mum was diagnosed with Vascular dementia, I cant shake of the frustration that always comes each time dementia brings dramatic changes to my mums awareness, health and abilities .We as has happened many time before woke up one morning 7 or 8 weeks ago and everything had changed again, since that day my mum has been unable to stand up or walk more than 3 steps without my total support, along with more health and other issues and struggles. My mum can no longer attend her wee day group and that is sad, my mum has lost 100% of the social interaction she got from day group twice a week and I have lost 48% of the respite we had each week, we are now left with sitters for 14 hours a week .there is no like for like as health deteriorates and each time dementia bring a massive change to both of our lives it creates a process of trying to find the correct support and help The more this illness takes a grip of my mum the less options for help and understanding seem to be available I am grateful for the attention to detail the district nurses have shown helping get us the hospital bed and checking on my mum each week just now to help with some sores and so on ,but each time the change come with this illness ,we are left searching for answers to accommodate and keep my mum with the support both she and I really need. It got me thinking last night there is no real surprise to what Vascular dementia will bring over a period of time and how it will affect general the health and abilities of someone suffering from the illness an the family trying to cope each time a dip comes, so I ask why does it seem such a surprise to all involved in my mums care or to put it another way why do  I have to  explain ,convince ,fight or fill in so many forms and beg each time this illness does what it does, its no surprise to me anymore, just seems like it to everyone else .there is a simple answer map out the journey this illness will bring for families in advance and have the help made ready to assist families as soon as needed to allow them the chance to love and care for the person the love. Dementia is a love story tinged with tragedy ,we as a society can help lesson the tragedy in small ways and allow more time for love and care    
Tommy     

Tuesday, 26 June 2012

Today at care inspectorate meeting

Today at care inspectorate meeting

Firstly with great thank s and respect to David from the care inspectorate for coming today  and  too the   few people who attended .I felt we had a great discussion and David for me is a man genuinely interested in our thoughts and opinions, shame only a few people attended as I feel this was a great chance for carers like me to discuss how they live and feel
But then I have the thoughts and feelings in my heart and head from the many hundreds of people who write to me and who I meet on my campaign and felt able to discus my own life as its very similar to all the letters I receive
Anyway onwards and upwards the campaign to raise awareness continues and I look forward to working with David on a few other projects we discussed after the meeting today

Tommy

Sunday, 24 June 2012

Dementia, a letter changed my life, can yours help change someone else’s?

Good Morning
I have been caring for my wee mum Joan for nearly 5 years. Just over a year ago we nearly reached a crisis point as we struggled to cope and live,
I picked myself up best I could and decided to go out, raise awareness and try and find out how others lived and coped. It saddens me to say that most families face similar if not greater struggles than we do. My campaign to collect life stories is based on my own experience on receiving a letter, a letter that changed my life. In my previous life before dementia and caring I travelled all around the world with my job ,My long term girlfriend at the time also travelled with her job .for quite a few years my girlfriend kept trying to tell me that things had to change ,that we had to stop traveling and settle down, I had to grow up amongst other things, the more she tried to discuss this or shout or even in the most intimate of moments plead, the less I heard ,I always seemed to be able to get out of talking about or discussing our future. One day as I arrived at my destination with my job I opened up my suitcase to find a letter. In that letter I read all the things my girlfriend had tried to tell me for many years ,for the first time I understood all the things she said and why we had to part
My heart was broken ,but that letter told me more about my life than I ever knew before ,that why I collect letters and life stories to take to the powers that be ,I truly believe our lives  in our own words is  the best way to bring more help ,understanding and awareness. We as families and carers are best placed to describe how we live and feel we are the ones who can guide to a better future and care for all. To often I hear some  speaking about Dementia and Caring who have no experience, it bears no resemblance to how my mum OR  the people I meet on my tour and I live and feel .A letter changed my life, our letters can change the lives of others
Please help a son and carer tell the story of living with and caring for a loved one, we have a Deputy First Minister who is listening, if we can share our thoughts and feelings our words without guidance ,surely its to hard to ignore ,
Isn’t it ?
Thank you
Tommy

Saturday, 23 June 2012

Dementia ,how do you mend a broken heart


Dementia ,try as you might you can never take away the greatness in my eyes and heart that is my wee mum Joan Whitelaw
Tommy

Friday, 22 June 2012

can you help a son and carer with, motions and projects , open to all who have thoughts or opinions


Hi  
Good morning, I hope if you are reading this today you may be able to help with some of the hopes, dreams and projects I am working on in my wee quest to raise awareness and understating on both Dementia and Caring
Collecting life stories
For the last year I have been collecting life stories to take to our Deputy First Minister to help tell the story of dementia and caring, our live, in our own words I feel this is a unique opportunity to give cares and families like mine a voice if you would like to share you’re experience good or bad, it would be great to hear from you
Motion Glasgow City Council
Back in February I had a motion passed at Glasgow City council to look at dementia and caring and for the outcome and report to be taken to the Scottish Government. if you would l
MOTION
Council recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s findings be presented by Council to the Scottish Government.
Dementia and Caring through Art
As of yesterday I now have a confirmed and amazing partnership with Garnavel Royal Hospital,to put together a permanent exhibition  in their reception are and corridors leading to the older persons wards .This will be based on the letters I receive and people I meet ,if you would like to send some ideas or are interested in producing some work for this to help comfort and inspire all who view  please get in touch
MOTION Edinburgh City Council  
Council recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign. Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s findings be presented by Council to the Scottish Government.
I hope if you would like to help or get involved with any of the above you will get in touch, you can e mail me at tommy@i-woz-there.com
I also hope you can put this on your sites and news letters and help give carers a voice
Thank you
Tommy
Son .carer awareness campaigner

Inspired by my mum, Inspired by people who tell their stories and I have met on this campaign, inspired by great people doing great things

Hi
It has been another week of up and downs, my wee mum is still very weak and has not really recovered from the dip in her health about a month ago. This whole tragic journey my mum is facing with Dementia is ever changing and ever challenging.Just when we feel we have adapted and find a routine that gets us through each day the best we can, Dementia changes everything from day one this cycle of change  has taken  its toll on my mum, we have to re -adjust everything we do., my mum is mostly confined to bed at this point ,her strength is low after 5 years of this illness,but her smile is strong ,her smile when I go in the morning to get her ready for her wee bath and breakfast is the all the strength I need to keep going.Dementia has taken many things away from my mum but not her greatness.I will never allow dementia to take away the greatness that is Joan Whitelaw my mum ,and that just happens to make me the luckiest man in the world.Luck because Joan Whitelaw is my mum and my inspiration.Over the last week I have met with many other inspirational people at the talks I do during my 14 hours cover ,Husbands ,Wives Sons, Daughters and good people who work with carers and families in their local community
I am inspired by the people who share their  life  stories who take time to RT and share my campaign and by the other amazing people I have learnt about or met doing all they can to support, care for a loved one or highlight the plights and lives of others
As a son and carer I respect and salute you all
Tommy   

Thursday, 21 June 2012

Today at talk in Ayr more amazing, inspirational people caring for a loved one

hI  
I have just returned home from my talk down in Ayr as part of the Princess Royal Trust for Carers South Ayrshire, carer’s week events. With great thanks to David Roxburgh for inviting me and to all who attended, I also have to thank  David for coming to Glasgow to pick me up  to allow me to fit this in with my hours of cover and to assist as I do this without funding. More importantly than my talks or anything I have to say I met with more inspiring people who give care and help to a loved one and to hear their stories and share our stories only  strengthens my desire and passion to keep raising awareness and reach and meet as many people as possible. Together our life stories can be the best guide to any decision makers in the future. If you want to know how a carer lives or feels just ask them, it might change your life for the better
if you would like to shre your story to help bring more understanding or inpsire others then please send to tommy@i-woz-there.com
Tommy  

My motion Edinburgh city council, part of a report to the Health Social Care and Housing Committee next week with tanks to councilor Child

hI 
Back in March I took a report on the letters I receive to Edinburgh City Council after being contacted by councilor Maureen Child, Councilor Child kindly raised a motion with regards to my awareness campaign
Next week my findings will be part of a report going to the Health Social Care and Housing Committee
Councilor Child had submitted the following motion in terms of Standing Order 28:
“Committee recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign,
.Decision
1)         To recognize the inspirational efforts of Tommy Whitelaw in raising awareness of the issues affecting the carers and families of people suffering from dementia through his “Tommy on Tour” campaign, supported by Alzheimer’s Scotland.

2)         To ask the Director of Health and Social Care to report back on the issues of dementia to the next meeting of the Committee.


Wednesday, 20 June 2012

Speaking at PRTFC South Ayrshire services today

Hi
I will speaking today at the Princess Royal Trust for Carers services center South Ayrshire  today as part of their carers week activities, David Roxborough who runs the service is kindly picking me up this morning to help me fit this in with the cover I have left for this week, I have met with David before and he is a good man and I look forward to meeting the carers and families he works with and who attend ,I will update more when I return home
Tommy  

Care inspectorate meets the carers this Tuesday June 26th

hi
Well I have ordered the sausage rolls ,Carr gomm have let me use their training room and I have david from the care inspectorate kindly coming to do a short talk and take some questions and answers
It would be nice to see you if you have time, a day of positive talk and meeting new friends, carers and families
10am till I pm
Please forward to anyone you think might like to attend
Tommy

with thanks to north ayrshire council dementia support services for putting film and story on web site

Hi

With thanks to north Ayrshire council dementia support services for putting my film and story on thier webste

... Tommy on Tour. A film about Tommy Whitelaw’s campaign to raise awareness for people
with dementia and their carers. View the film here - Tommy on Tour. ...
www.north-ayrshire.gov.uk/SocialCareAndHealth/HelpForAdults/DementiaServices.aspx - 35k - Cached

thank you

tommy

Tuesday, 19 June 2012

Meeting at home today with NHS Glasgow lead Nurse/Dementia Champion to discuss and plans Tommyontour tour talks within NHS

Hi

A few months back I was invited to hold a presentation to some department heads from NHS Glasgow about caring for my mum ,the letters I receive and the people I meet ,since then I have been invited to speak at events coming up over the next few months ,tomorrow Con who was present at my talk and is a dementia champion is coming over to discuss more talks to departments he is involved with. I look forward to seeing Con again and look forward to more opportunities to speak at care sector events about my life as a son and carer
Tommy

Inspired by new friends yesterday at Kilbirnie North Ayrshire at the memory café

Inspired by new friends  yesterday  in Kilbirnie North Ayrshire at the memory café



 Just home from a talk today in Kilbirnie North Ayrshire

I was invited by the  Dementia Support Service who are based there ,

I will update more later with some photos

but first I  have to spend time with my wee mum,get dinner on and get my mum her bath ,

So for the moment a quick thanks to Tony,Kerry Gail  Agnes,and all who a attended.

Today I met more amazing people who are living with  Dementia or caring for a loved along with  good people doing good work in their community ,

after my wee talk I met and talked with some amazing and inspiring people,I will add some more about today along with photos tomorrow

A big thank you for the cookies and flowers for my wee mum ,



Monday, 18 June 2012

Tommyontour 3 minute video diary now on STV local



Hi

About a moth ago I popped into STV  to film a 3 minute video diary about my life and passion ,this is a new venture by STV to give local people a chance to speak about their life and passions on film

With thanks to Amanda and all the team concerned with this project,You can view the magazine and my video diary at the link below  


tommy

Saturday, 16 June 2012

Dementia, the dismantling of our lives, to dismantling my mum’s bed for delivery a hospital one

Hi
My mum is always viewed with greatness in my eyes, but there no escaping all that Dementia has brought or the toll dementia has taken on us both. This morning I was up early, got my wee mum her bath and breakfast and i have spent the last hour dismantling her bed and redesigning her room for delivery of a hospital type bed, recliner chair and other such clinical equipment, in order to keep pace with the change lately in my mums health, awareness and capabilities.This constant struggle to adapt, change and keep strong all through this journey has taken its toll on my mum and tests everything I have on a daily basis. As I dismantled my mums bed this morning I struggled through a flood of tears as all I could think about was how DEMENTIA has, and is doing its best to dismantle every thing we are and have. But it has no ability to dismantle the memory I have and hold or the love and respect I have for my amazing wee mum. Dementia might have erased my mums memory and may try to attack her dignity, but it cant take away the memories of all the people who have met her and love her,I might be forced to dismantle her bed but I wont allow anyone to forget her greatness and will demand she is treated with the respect and dignity she showed all she met ,as we prepare for the next phase of this tragic journey
Tommy

Dementia & Caring, can you help a son and carer fulfill some of this hopes and dreams

Good morning, I hope if you are reading this today you may be able to help with some of the hopes, dreams and projects I am working on in my wee quest to raise awareness and understating on both Dementia and Caring
Collecting life stories
For the last year I have been collecting life stories to take to our Deputy First Minister to help tell the story of dementia and caring, our live, in our own words I feel this is a unique opportunity to give cares and families like mine a voice if you would like to share you’re experience good or bad, it would be great to hear from you
Motion Glasgow City Council
Back in February I had a motion passed at Glasgow City council to look at dementia and caring and for the outcome and report to be taken to the Scottish Government. if you would like to add your thoughts or opinions this would help and be part of the make up of this report
Dementia and Caring through Art
As of yesterday I now have a confirmed and amazing partnership with Garnavel Royal Hospital,to put together a permanent exhibition  in their reception are and corridors leading to the older persons wards .This will be based on the letters I receive and people I meet ,if you would like to send some ideas or are interested in producing some work for this to help comfort and inspire all who view  please get in touch
I have many other projects like Care Inspectorate meet the carers on June 26th and many talks lined up. talks within the Care Sector and beyond talks based on my life caring for my mum and letters I receive ,I do all this on a voluntary basis
I hope if you would like to help or get involved with any of the above you will get in touch, you can e mail me at tommy@i-woz-there.com
Thank you
Tommy

Friday, 15 June 2012

Dementia and caring through Art a place to exhibit, with thanks to Garnavel Royal Hospital

Hi
Very inspired and excited after my meeting today with Tom and Jill who have agreed to help, exhibit and supply some funding for my dementia and caring through Art idea / dream The hospital has new older persons wards and wing and we discussed and agreed on the idea of hanging art in the reception area and corridors leading to the wards Art that will inspire, comfort and tell the story of dementia and caring. This idea comes from the letters I receive and the people I meet and we are hoping to turn those thoughts and feelings into inspiring work from Art students ,families and carers This project also t forms the very  basis of this awareness campaign our lives ,thoughts and feelings in our words I HOPE IF YOU HAVE IDEAS ,OR WOULD LIKE TO SUBMIT SOME WORK FOR THIS PROJECT YOU WILL GET IN TOUCH ,the hospital has its motto and theme also and I will update more on than that later ,but for the moment if you have thoughts, poems or work you would like to be considered please get in touch with me at tommy@i-woz-there.com  

I hope you can share with others and help make this happen to help comfort and inspire families who may need hospital care or are  visiting a loved one

Tommy

Dementia and Caring through Art, might be a small step closer to making it happen

Good Morning
I have a meeting this morning with some people who just might be able to help with one of my hopes and dreams , to tell the story of Dementia and Caring through art
The idea is to bring the thoughts and feelings  from the letters I receive and families I meet  to a wider public through  the eyes of some of our talented art students along with art from families,
I have as with all I do no funding but a desire and passion to raise awareness, I have some people who want to provide and work on the art side of the project and today I will be meeting someone who might just have the place to display this work on a permanent basis, a lot of if and buts but then life is full of ifs and buts we just have to turn then in to done and dusted
Tommy

Thursday, 14 June 2012

Dementia /carers awareness week, change of plans for Monday

Hi
Last year for Dementia awareness week I launched my campaign with a walk round Scottish Towns and Cities to raise awareness.This coming Monday I was hoping to hand out some leaflets outside the Alzheimer Scotland conference along with meeting a few people I had arranged to say hello too as I could not get a ticket.But as my wee mum has not been doing to well over the last month I have had to change plans for Monday as I  have a new hospital type bed, recliner Chair and some other equipment arriving,in order to keep my mum as comfortable as possible.Dementia has brought so many changes to both my mums and my own life.The latest being my mum being unable to walk and a big loss in most of her mobility, so we have to once again adjust our lives and routines, Dementia brings so much to deal with and many changes but it cant change one thing.My Mums Name is Joan Whitelaw and in my eyes the Best Wee Mum in the World, Never forget the person ,celebrate the greatness.This is my  by biggest form of defense I would like to thank the district nurses and my mums social worker for their attendance and help over the last difficult weeks
Tommy

tomorrow Meeting carers and speaking at The South Ayrshire Carers Centre

Hi

With thanks to David Roxburgh from The South Ayrshire Carers Centre (The Princess Royal Trust for Carers) for inviting me down to one of the events he has arranged for carers during carers week. David got in touch a while back and I sadly had to pull out of a previous talk due to family commitments, so I am grateful for this opportunity to make up for the last time and I am looking forward to this event, I hope to meet and hear from other carers and families and look forward to speaking about caring for my mum, the people I meet and the letters I receive
 Tommy

Tuesday, 12 June 2012

Sitting tonight reading through letters and e mails ,we may never have met ,but our lives are so similar

Hi

I was sitting tonight going through some of the letters and e mails I have received over the last year. As I checked my inbox I got a second e mail from someone who had contacted me previously .Tonight has been a night of reflection tears and smiles. I try as it’s my duty to really keep on top of the words ,feelings and thoughts I receive.Things have got tougher for both my mum and I over the last year and when I hear again from people who have sent me their story before I recognize how much tougher life gets for them and for others .Amazingly or not so amazingly there are common themes in all the correspondence I receive ,in fact the person who sent the e mail tonight started the first one they sent to me by saying on hearing about and reading my story one day all she had to do was change the names and that her  story was so similar  to my own  .So many people facing the same issues ,same heartbreak ,same loneliness,frustrations  and same so on and so on .Surely if we are all facing similar struggles on  this Journey then WE AS A SOCIETY HAVE TO PAY ATTENTION AND DO ALL WE CAN TO CHANGE SOME OF THOSE STRUGGLES AND ISSUES. So I will say again I believe in life stories, I believe that  if we can share our life story without guidance, the true story of how we live and feel then surely it becomes to hard to ignore, surely it will bring more understanding on dementia and caring and ultimately if we can bring more understanding then we can find the best way to bring more help
I hope you can help others by sharing your story and if you can please send it to add to the other amazing people and stories I have received to date , to tommy@i-woz-there.com
Thank you
Tommy    .

Speaking at memory café Kilbirnie Tuesday June 19th

Hi
With thanks to Kerry from  Dementia support services North Ayrshire Council for inviting me as one of the guest speakers during carers week on June19th .i will be meeting fellow carers and families and speaking about caring for my mum ,the letters I Receive and the people I meet on my tour You can get details on north Ayrshire dementia support and a wee bit about my campaign and talk at the link below
Tommy
Tommy on Tour
As part of Dementia week the Dementia Support Service have arranged for "Tommy on Tour" to attend a special event for anyone in the Garnock Valley. It will be held at the Memory Cafe located in the Bridgend Community Centre,
Stoneyholm Road
, Kilbirnie ...

Monday, 11 June 2012

Caring for my mum, I can’t shake of the sadness of the last few weeks

Dementia has been a struggle for my mum. It has in the past and still does its best today to pick away at her awareness, abilities and all that she is. As a son the last couple of months have been just so sad, my wee mum has lost a few stone over the last months. My has lost her balance and so much of her strength and has not been strong enough to stand alone or walk for weeks .for all my mum has faced and I have witnessed over the last couple of years its sadness I struggle with just now .i spent yesterday working on a new plan for my mums room and ordering a hospital bed and other equipment and I am just so sad inside .All through this illness you think what next what more can it bring it cant get any harder or worse ,but you always know it can and will. There is love in this house, love for a wee mum who gave her all to everyone she met and to her family BUT THERE IS ALSO A BATTLE WITH SADNESS.I sit at night in my mums room when she is asleep and I just cry .i have cried many time over the last years .but the tears Are different tears just now,
I don’t know if what I have just typed makes sense, but you know I am so sad inside today that nothing makes sense but the fight goes on ,the fight to care for my mum with the dignity and respect she deserves and my promise to raise awareness and understanding on this cruel illness no matter how many tears may fall
Taking on dementia is my life  mission
Tommy   

My Motion passed Glasgow City Council, can you help?

Good Morning 

Back in February I had a motion passed at Glasgow City Council to form a cross party working group to look at Dementia and caring in Glasgow and for the results to be handed to the Scottish Government. This group will be formed next month to start work on the paper ,I hope if you have any thoughts or opinions you will send them to me as I will be a carers representative on this group You can e mail me direct at tomm@i-woz-there.com

MOTION
Council recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s findings be presented by Council to the Scottish Government.

Moved by Councilor John Flanagan

Seconded by  councilor  David McDonald

Tommy

Sunday, 10 June 2012

Speaking at NHS event at Beardmore hotel October 5th

Hi
With great thanks to John Stuart for inviting me to be one of the guest speakers at a nursing regional directorate event at the Beardmore hotel Clydebank on October 5th
John was one of the heads of departments who attended a presentation I was asked to do via the NHS Community Engagement team a wee while back about Dementia, Caring for my mum and the letters I receive at the Southern General Hospital .As a son I am grateful to John and all his team for this great opportunity to speak honestly and openly as a son and carer and about my life as a carer and my mums life facing Dementia
Tommy

Letters and life stories, help me tell the story of Dementia and Caring

Hi
I believe in life stories, I believe the best way to bring more understanding and help is to listen to families who have or are experiencing Dementia and all that it brings .In my own small way I feel I have a chance to the story of our lives to decision makers. Our health secretary is showing great interest in our words thoughts and feelings along with good people within NHS and local authorities’ .Along my wee campaign I have heard from truly inspiring people, I have cried with some I have laughed with some, I have met many obstacles and had my fare share of patronization .but I feel I have met a few key people who are in a position to help are genuinely interested in helping and I believe them. and I need others to  help and also believe them ,to help guide ,inspire and tell them ,tell them how you feel about dementia about how you live on a daily basis and how they can help
If you would like to help by sending you life story, thoughts or opinions then you can e mail me direct at tommy@i-woz-there.com
Tommy

Saturday, 9 June 2012

some photos of my wee mum and the man she loved


my mum at 5
my mum on one of her first dates with my wee dad



                                        my mum and dad on thier wedding day

The reality of where we are has just crushed me today

Hi
I know  fine well what dementia has done to date  and is doing to my mum ,I have stood by her side for this whole journey and as my mum has faced all that dementia brings I try my best to support and do the right thing ,I don’t always get it right.For all the past experiences the confusion ,the agitation ,the anger ,the fear the fight to be remembered as the person ,as Joan whitelaw, as my mum .TODAY was a reminder of the toll this illness can take on both mind and body ,my mums day center came round to see if was achievable to take my mum out to sit in their garden and all to quickly we realized its not ,my mum is to weak and frail and I am crushed ,sometimes it takes fresh eyes and opinions to tell you where you are , because we live in hope ,no matter how little can be achieved each day we see this  as a victory we see it as hope for the next day Today reality slapped us in the face ,we are now facing the saddest part of this journey .Dementia has changed so much ,but it wont change in my eyes the greatness of my mum and it wont change the fact that I will be there to hold her hand every step of the way
Tommy

With thanks to my mums Day Center for coming to try take my mum out for a couple of hours Today

Good Morning
If you read this blog you will know my mum has not being doing to well lately.Three or four weeks ago we woke up one morning and since that day my mum has had great trouble with balance standing up and has barely said a word. I can only say its has been incredibly difficult for my mum and dreadful to witness as a son .we have had had the doctor out quite a few times and had tests  to see if its an underlying problem but everything seems to be pointing to the next phase of this illness, I cant tell you the sadness in my heart, But we will adjust and do our best to keep going. I go to bed each night thinking tomorrow will be better and I wake up each morning facing the reality that its not ,Agnes from  the day center my mum  used to attend a couple of time a week passed by the other day and is coming with another member of staff to see how my mum is today in the hope of taking her down to sit in the day center garden with some one to one care .I hope my mum is strong enough to do this and I thank them for their effort in helping my mum get some personal social interaction ,it matters ,it matters more than I can say
Tommy

Speaking to staff at Lecture Theatre in the Royal Alexandra Hospital., with thanks to NHSGG&C


Hi

With thanks to Con Gillespie who is a lead Nurse and Dementia Champion for inviting me to be one of the guest speakers  to around 100 doctors and nurses at a Clinical Governance Forum being held at the Lecture Theatre in the Royal Alexandra Hospital Wednesday 26th September 2012. I met Con a wee while back when I was invited to speak to department heads via the NHS Glasgow  community engagement team .As a son I am grateful for this opportunity to speak to professionals about caring for my wee mum Joan ,Dementia ,the people I meet on my tour and the letters I receive

With great thanks to Con and I look forward to speaking at this event

Tommy

Friday, 8 June 2012

With thanks to Faridah at Mind over Matter for sharing my Story

HI
With thanks to Faridah Newman who has put my story on her mental health blog, I called Faridah about another matter and we got chatting so thanks for listening and for sharing
You can view the blog at the link below
Tommy

Today at the carer engagement event

Hi
Well I attended a carer engagement event today set up by Glasgow Social Workalon with partners  CHP, I felt it was a good meeting and was encouraged by the mixture of carers and people who work in the voluntary sector and carer centers along condition specific organisations .I care for my mum who has dementia and found it very interesting and inspiring to hear and meet others who have different need, lives or care for other reasons. Different focus groups where proposed and I look forward to working on the dementia group along with working with  and learning from others ,with thanks to Ann and all concerned for setting this up and the invite
Tommy

Dementia the Struggle, Caring the Struggle, Campaigning the Struggle

Good Morning
Its all a struggle just now, my mum is struggling with this cruel tragic Illness. I as a son am Struggling to keep pace with all that is coming towards us and as  Campaigner I struggle to believe the shameful arrogance and lack of understanding of some who claim to know better .but I have a message for DEMENTIA .,Caring and the Ones who let us down
We will face DEMENTIA with all we can , We will rise to the challenge of Caring ,and the Inspiration from people who do good work supply good help ,understanding and Knowledge  will dilute the ones who don’t and will be the strength behind our life’s and campaign
Tommy

Thursday, 7 June 2012

Dementia and Caring through Art

Hi
I am a step closer to displaying and bringing  the words, thoughts and feeling in the letters I receive about Dementia and Caring through Art to life,
I have some amazing Art Students who are keen to work on this project and I will be meeting next week with some people who have the perfect place for this to be permanently exhibited and who may be interested in getting involved
If you have a passion for art and passion to help raise awareness and to help tell the story of the life stories I receive  and would like to be involved in this project please get in touch
Tommy

With apologies to Renfrew and Glasgow North East Carers

Hi
I would like to say sorry to Renfrew Carers and Glasgow North East Carers for having to cancel stopping by today  during my 4 hours cover to update on my awareness campaign My wee mum has not been doing to well and is very weak again today, so I cancelled my cover this morning as I felt it was better I stayed at home and called the doctor out again
So once again sorry for not dropping by but I did not feel comfortable leaving my mum with anyone today, I hope we can reschedule as I have great friends at both centers
Tommy

Attending Carer Engagement Event at crossroads Scotland today ,then meeting with Carer Scotland

Good Moring 

With thanks to Ann Cummings from SW Glasgow for inviting me to the Carer Engagement event  tomorrow .I have met with Ann and Stephen from Social Work Glasgow a few times lately and as a carer I am encouraged by their interest in how we live and feel The purpose of the event is to outline how  SW, NHS, carer centers and condition specific organisations in Glasgow  can work  in close partnership to design and deliver a more joined up approach to delivering services to carers across all the care groups. More importantly the meeting will provide everyone with an opportunity to discuss as to how we can all be involved in taking this agenda forward.

I believe this will be a prelude and part of the work re my motion passed at Glasgow City Council back in February

I will then be meeting with Simon from Carer Scotland to update and discuss some ideas I have on raising Awareness
Looking forward to attending

Tommy

Wednesday, 6 June 2012

Collecting life stories Glasgow to London a Carer / Family Relay of Hope

Hi
Well today is a year to the day since I launched my campaign to collect life stories with a walk round Scottish Cities collecting Letters  
Watching the Olympic flame has inspired me to try and be part of forming a relay of carers/families next June collecting life stories from Glasgow to London to hand into Downing Street once again stories without guidance, you’re life, you’re story in you’re words
 Walking Around a different Town City each day. Meeting people, collecting stories, highlighting good help and practice In each place we stop .Each Town and City would be lead by local people groups and organizations, if we can get all who do good work on dementia and caring to work together we could find out, tell and take to parliament the true story of Dementia and caring in the UK, THE REAL STORY FROM REAL PEOPLE
Its just an idea ,could it work ,I for one believe so
Tommy

On this Day last Year I launched my Dementia Awareness Campaign with walk round Scottish Towns and Cities

Hi
On June 6th last year I launched my Dementia Awareness Campaign with a walk round Scottish Towns and Cities to collect life stories to take to Parliament. Since then I have received hundreds of life stories and met with our Deputy First Minster on a few occasions to hand over the letters and discuss Dementia and Caring, I believe in life stories ,I believe our lives in our own words is the best way to bring more understanding and help I hope if you can you will share your experience good or bad in order to help others ,so thanks to all who have shared their stories ,who I have met over the last year ,who have supported and been part of this awareness campaign and have invited me to groups and talks ,also thanks to all who help me care for my wee mum Joan  The campaign to raise awareness continues, I hope you can help by sharing you’re experience ,you can email me at tommy@i-woz-there.com you can also view or share my blog and  short film shown at parliament at the links  below
Thank you all and I look forward to another year of campaigning
Tommy and his wee mum Joan

Tuesday, 5 June 2012

Today at and with Thanks to the Prince & Princess of Wales Hospice

Today at and with Thanks to the Prince & Princess of Wales Hospice
HI
I would like to thank Jane Miller the education facilitator and all the staff The Prince & Princess of Wales Hospice for inviting me over  to talk earlier today about Caring for my Mum,the letters I receive and my campaign .I am grateful for opportunities like this to speak openly and honestly about caring for my mum  to people who care for others ,also a big thanks for the questions ,input good advice  and kind words,I met some new  inspiring friends today

Thanks to all who attended, you can view info about the hospice at the links below
Tommy
The Prince  & Princess of Wales Hospice www.facebook.com/glasgowhospice / www.twitter.com/PPWH

With Thanks To Duncan Ross for sharing his story about His Dad ,Dementa and how he feels

Last week I asked if anyone would like to share their thoughts, feelings and story on my Blog
with great thanks and respect to Duncan Ross who wanted to share his Story about his Dad


The thing about my dad, Duncan, is that he has no idea he has dementia.  If you ask him he’ll tell you that he is perfectly fine and doesn’t need any help.  Sure, he’s getting old, he maybe isn’t quite at his best and he has a bad memory sometimes, but he manages fine and there is no cause for concern: he will be back to his old self in a few days.  My dad is 82 and he was diagnosed with dementia almost three years ago. At the time, he lived in rural Renfrewshire, but he lost his driving licence and I managed to arrange a move for him into sheltered accommodation in Barhead.  When he first moved in he spent a lot of time pulling the alarm call cords, trying to switch off the lights.  He seems to have stopped doing that now and doesn’t really know what they are for.  And why would he need alarm cords, anyway?  The sheltered housing place is great, and lots of stuff happens – social events, trips out, entertainers visiting, weekly coffee mornings and so on.  He doesn’t go to any of these, because they are full of old people that he doesn’t know.  He spends a lot of time at the golf club – he doesn’t play anymore, but he still likes to walk.  He used to sit in the clubhouse, chat with his old pals and joke with the staff.  They, in turn, made sure he ate his dinner and reminded him it was time to go home when it got dark.  And they would call me to check he was OK if they hadn’t seen him for a couple of days.  He doesn’t go there much now, though, because he doesn’t recognise anyone. 

I am not a full time carer, but I see and speak to my dad most days.  I find spending time with him really difficult – not because I don’t want to, but because he is slowly disappearing.  He has very little conversation, and nothing interesting to say.  I tell him about my own kids and what they are up to, but unless they are in the room, he can’t imagine them or remember anything we spoke about last time.  So the threads to the past and the future are gone.  The daily storytelling that binds families together isn’t there anymore.   He doesn’t remember my mum, who died about twelve years ago, and he didn’t recognise my niece, his granddaughter, at her wedding.  I want to tell him about what is going on in his family, and I want him to be a part of it.  Mostly, I want him to be the fantastic dad that I could rely on for help and advice my entire life, and the hugely loving grandfather with an inexhaustible supply of stories, jokes and songs that my own children remember. But that person is gone, and I have a very real sense of loss and it hurts and I get angry about it.  It is important, however, to direct my anger at the dementia, not at my dad.  He is still here and he isn’t experiencing any of this loss – he just thinks it’s a calm day outside and everything is fine.  So that helps - better he thinks everything is fine than not; better to live in a calm day than a stormy and threatening one.  I need to remember I can still tell him stuff – I just get to do it more often.  Spending time with him is the best thing I can do, for him and for me.  And if much of the time is spent in companionable silence, then that’s fine for now.  I know it will get worse, so I will try to live – like my dad – in the moment.

Duncan Ross
@dmross63

Monday, 4 June 2012

Watching the jubilee concert, memories of my previous life, something my wee mum has lost

Hi
Well my wee mum is tucked up in bed and I am sitting alone in my room watching the concert live from London Its quite emotional ,as I shut my previous life out mostly in order to concentrate on life now caring for my mum, but tonight lots of memories came flooding back, I have toured with quite a few of the artists on stage, Tom Jones, kylie, Annie Lennox, Elton and a few more in fact I was worked on  the concert put together in new York  by Paul McCartney after 9/11 Now we sit alone slipping each day closer to a poverty of life and all to often a poverty of understanding and care .But I am lucky I have memories firmly implanted in my mind ,good and bad ,something that has been taken from my mum by this cruel and tragic illness but not  from me I have the greatness of my mum firmly implanted in my memory, heart and soul ,I might not be touring with bands anymore, I might be sad and lonely, and I might be poor, Tonight I sit with a real superstar, her name is Joan whitelaw
Tommy on tour  

Link to filmed interview on Scotland Toinght a few weeks ago

Dementia has been described as the greatest health and social crisis of the century.

More than 80,000 people in Scotland have the condition, with the number expected to double over the next 25 years.

Scotland Tonight looked at the experiences of Tommy Whitelaw, a campaigner who cares for his mum Joan  who sufferes from  Vascualr dementia.

In a studio discussion, he was joined by Professor June Andrews, the director of Stirling University's Dementia Services Development Centre and Simon Hodgson, the director of Carers Scotland.

Dementia awareness thinking about walking Glasgow to London next year to collect more life stories

Hi
Last year I launched my campaign with a walk round Scottish cities to raise awareness and collect life stories, I have been overwhelmed by the amazing response to this campaign ,I am thinking about walking from Glasgow to London next June to raise awareness and collect more life stories or even a relay of carers walking through towns and cities much like the Olympic torch handing over letters and life stories to the next town /city to be carried forward ,this would be great to get volunteers and carer /dementia organizations  who do great work  all involved ,working together, working as one  to raise awareness and help tell the story of living with and caring for a loved one .its jus an idea at this point ,but then so was my walk round Scotland a year and a half ago
Tommy

Thank you www.chill4us.com for the great support over the last year and for including my campaign in you’re carers newspaper

Hi 

A big thanks  to Wendy and all at chill4us carers for including and updating on my campaign in their carers newspaper  ,Wendy and all the team along with doing the great work they do have taken time to promote and support my campaign on quite a few occasions ,I am truly grateful for their help and support

You can get more details on the article and all they do at the link below

http://chill4us.com/news/  We Care for Carers

Tommy

16,000 People,Have Now Pledged To Make Difference. Every Person,Pledge HERE

we would like to say a   huge thank you to everyone who has made a pledge as part of the ‘ You Can Make a Difference’  campaign and we are...