Isolation Loneliness ,Understanding, we can cure them, cant we?

Dementia as o,f this time we have no cure, but in my own experience caring for my mum for 5 years there are 3 words that appear in so many of the letters I receive that we are able to and can cure them, Loneliness, isolation and understanding .we where lonely we where isolated and to often we did not understand and to often people involved in our care with great intentions did not understand and those words and feelings are repeated time and time again, and loneliness and isolation are still a major issue in my life since my we mum passed away .we become isolated from society and the outside world even as a busy campaigner for as many hours as I can this re-adjustment to life is difficult ,but why should this be ,how do we become so lonely and isolated and why so little understanding from within and towards us. For me we have to start speaking more openly and honestly about dementia and caring ,if we do this then we will understand better when facing this illness ,when caring for a loved one ,we will understand more and we understand more then all who surround or are involved in this journey will be allowed or have to understand more and we can change those three words across society Loneliness ,isolation and understanding ,they play such a big part in our chance to live ,love and cherish ,for all the things we cant cure at this time ,we should spend some time curing the things we can    

my journey caring for my mum is over ,we where lonley and isoalted ,I still am ,we did not understand for to long what was happeneing and in many ways I still dont understand what happened ,we can do better we really can

Tommy

Caring for mum,felt like the impossible Jig saw to hard to piece together

Caring for my mum, the impossible Jig saw to hard to piece together

Looking back, that fills so much of my time at the moment ,any moments of nothingness turn to looking back and I know its still raw with my mum passing away 8 weeks ago but I am trying to figure it all out ,there was no time to figure it out while caring for mum ,it was an emotional rollercoaster and to hard to often I hope the good days ,the joy and the happy days become more prominent but not at the moment I am left with to many what ifs ,and a deep sadness that I / we could have done so much better ,that’s not how I wanted to feel looking back this jig saw of understanding has to be better the Jig saw of people involved in mums care ,the one who understood ,the ones who added value the pieced together so easily and beautify ,the ones who had no time or true understanding of all we faced ,the pieces did not fit I am left with the pieces that clicked together forming a half finished Journey and memory .A journey that I can see how it should have been and looked but marred the pieces the did not fit and I am included some days it got to much and my piece did not fit .So I feel left with a broken picture just like my broken heart

That’s why we have to celebrate the people who understand, who add value and help so we can all be part of a fuller, clearer picture and encourage educate and inspire the pieces that don’t quite fit ,so they can be part of the journey from beginning to end and a picture closer to seeing than the jig saw in my mind

the pieces are there ,just some of them did not fit !

Tommy   

Chill4usCarers, we may be miles apart but we share a passion in our hearts

 Its getting near the year end and over the next weeks I am hoping to thank and highlight some of the amazing people doing great work in their communities and beyond Living in Glasgow and travelling across Scotland raising awareness on both Dementia and Caring, if you have read this blog you will be familiar with many of the groups and places I visit and who do great work. A bit further afield I have got to know of and had great support from many people and groups across the UK and beyond. Wendy and the team from Chill4usCarers are a great example of people doing great voluntary work in their communities and across the UK along with producing a Carers newspaper

A big thank you from Tommyontour for the support and you has my support for all you do

You can find out more at the links below  

@Chill4usCarers

www.Chill4us.com

Nov 30th speaking at East Renfrewshire Carers

Hi

With thanks to mark Mulhern, Lisa and all at east Renfrewshire Carers for inviting me speak at their event on Carer Rights day Nov 30^th .I was a guest speaker earlier on this year at the  center and Look forward to returning to update on my progress ,future plans along with meeting and hearing from Carers and families Also with thanks to Cllr Vincent waters who I met at the SNP conference for attending You can find out more about the work they do at the links below .I will post more derails over the next week

East Renfrewshire Carers

www.eastrenfrewshirecarers.co.uk/

tommy

life stories, I believe in them, you’re words can help

Life stories, why I believe in them and you’re words can help

 I believe in life stories, I believe learning more about us and the lives we lead is the best way to raise awareness, bring more understanding and help our lives in our words without guidance .The life stories I have received to date have been the heart and soul of the work I do as a son, on a voluntary basis and with no agenda but awareness

So far the life stories have been

Taken to the heart of government (and will continue to do so)

Created the Tommyontour film (hopefully Tommyontour 2 will start soon)

Motions at both Glasgow and Edinburgh City Councils (Glasgow has a dementia working group based on this motion)

Reports by Social Work Glasgow   

Reports to the Government and shared with NHS and the carer sector

The basis of talks across the country at local authorities, carer events, Universities, Colleges NHS ,and more

Much media coverage in including national, local TV, radio and Newspapers  

Future plans include

the new 2 year project dementia carer voices in partnership with the alliance Scotland supported by the Scottish government all based on the life stories I have received and people I Have met on my tour

An academic paper on the life stories 

New films

And more awareness, more talks, more motions more understanding, more help

I don’t raise money I do this as a son and I believe the life stories can play their part in future strategies, Policies and absolutely help bring more understanding

They say the pen is mightier than the sword I believe our lives in our words is the most powerful way to raise awareness

You can add you story  ,thoughts ,opinions ,experiances  at tommy@i-woz-there.com to help others who will face dementia or caring in the future

The campaign goes on Tommyontour / Dementia Carer Voices

Tommy  

Thank you DWP for asking for some of my mum’s pension back for the week she died?

Well I have just received a letter from the DWP stating that they would like me as my mums carer and appointee to pay back Moines from the week my mum died .State pensions are paid in advance and my mum died the day after her pension was paid in although on that day bills get paid By standing order as we lived a simple life week by week I have offered to pay back the money weekly from my jobseekers allowance if owed ,but you know my mum worked hard all her life and we tried to allow her the privilege of living at home ,mums pension was paid in before she died and they want the days back or the difference on days she was alive , morally they are probably correct  but it’s a bit hard after paying tax  working hard her life and all she faced ,but it will be paid back ,a bit harsh ,a bit cold but typical of the struggles we faced

Tommy

Meetings and talks with NHS gg&c next week

Meetings and talks with NHS gg&c next week Nov22nd &23rd

Hi

Next week I will be speaking to NHS gg&c charge Nurses about Dementia, life caring for my mum and the letters I receive with thanks to Con Gillespie for arranging this and for his on-going interest in my awareness campaign the day before I will be meeting with Peter Daniels non executive vice chair NHS gg&c to discuss the work I do and some ideas and hopefully awareness involvement. I met Peter a while back when I was a guest speaker at  a carer rights day event hosted by GCC AND NHS gg&c and we have met a few time since .I have lots of ideas and hope he will engage with some of them

Tommy

Dementia took mums memory away now I feel tortured by mine

Dementia took away my mums memory ,towards the end it affected much more than memory ,but it took it away and nothing more cruel than the memory of the man she loved my dad ,married for over 40 years and for the last years of mums life no memory to fill her heart with warmth and memory is still the theme and biggest challenge now my wee mum has passed away and free from the struggle she faced towards the end. Now its my memory that is being challenged and in a fog .I know with time ,well I hope with time that the joy of my mums life is at the forefront ,but I am far away from that day Just now, its struggle and a struggle to far. a struggle that hurts me the more I remember ,the more I have time to think ,you see whilst While caring for my mum we never had much time to think ,we where just trying to get through each day and now time is all I have ,and dementia is still affecting memories, this time its mine and it hurts .I want to remember the good days and smile but I cant forget the hard ones ,if we forget that then we forget why we campaign if we forget that then we are of no good to others who will face what we have faced

Tommy    

More Tommyontour talks/ dates added the campaign continues collecting life stories raising awareness

Hi  

My wee awareness campaign continues you can add your thoughts ,opinions ,life storey by e mail at tommy@i-woz-there.com

November 1^st Meeting and speaking with carers Glasgow North East

November 4^th comment on STV NEWS AT 6:30PM

November 5th meeting Irene Oldfather at alliance

November 6^th    meeting Con Gillespie NHS gg&c dementia Nursing

November 7^th    public broadcast of interview about caring for my mum and the life stories BBC radio Scotland 2pm

November 8^th   attending rose’s media awards London Tommyontour on Shortlist for award

November 9th attending rehearsals memories FC Hampden

November 21^st meeting re dementia carer voices (Irene)

November 22^nd Speaking to NHS gg&c charge Nurses Gartanvel 

November 23rd meeting peter Daniels non exec chair NHS gg&C and attending Carer Link AGM (made honorary member)

November 27th   meeting dementia working group at city chambers re my motion

November 28^th meeting and speaking with carers Arbroath carer centre Angus

November 29^th memories FC Hapmden day 1

November 30^th memories FC Hapmden day 2 (speaking) then speaking at joint event east Renfrewshire carers and councillors then back to memories FC 

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

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

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

December 15^th North Ayrshire  support services dementia carer group

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

 January 17^th meeting health minister Alex Neil in Edinburgh

March 14th  lockerbie carers Lockerbie

Missing my mum, supermarkets, loneliness, heartbreak and hope

Recovery, I am not even sure that is possible at certain times of the day or night, Its 10pm and this house is missing its heartbeat, its too lonely and full of heartbreak to often and yes it was difficult towards the end. The last months to sad to describe .I feel ok at certain times and I feel strong and full of hope when I am doing stuff on dementia awareness, I feel strong even when doing talks about caring for my mum and her Journey, as difficult and sad as it was on so many occasions, but together we always send to manage and get by  .I tried for the 3^rd time today to go to the supermarket for shopping and for the 3^rd time I left in tears ,,the aisles remind me of the food we used to eat but more than that the food my mum could no longer eat as dementia took its toll. Our weekly list got less and less each month and now I cant bare  to shop at all ,and missing my mum ,missing my mum is overtaken by memories of how my heart was breaking towards the end and now its broken completely  and I don’t know if will ever heal ,is it possible to heal with all we’ve been through .with the regrets of misunderstandings from within and to many towards ,but hope we always had hope and I go to bed tonight with hope in my heart that one day they will  find a cure for this dreadful illness, and hope that until they do they find a better understanding across society and hope that  my mum knows  I tried my best ,no matter how hard it got no matter how lonely we felt my mum always gave me strength ,a smile or a reason and that’s what’s missing from this house and my heart my wee mum ,just like Dementia is terminal the feeling of loss feels terminal in this house and heart

Tommy

I will forever campaign and forever miss the woman behind it Joan Whitlelaw my wee mum

Tommy

Nov 23rd Attending Carers Link East Dunbartonshire AGM AND Launch of A Journey with Carers: A Survival Guide DVD

Hi

I am looking forward to attending the Carers Link AGB which will be held at 11am on Friday 23^rd November at Milngavie Enterprise Centre, Allentown Road, Milngavie, G62 8PHThe theme of this year’s AGM will be SHARING THE JOURNEY and carers link are proud to announce they  will also be launching their  new publication ‘A Journey with Carers: A Survival Guide’ with accompanying DVD.  Funded by East Dunbartonshire Community Health Partnership (CHP), this has been 2 years in the making (Jon has sweated over the Survival Guide for a long time and it looks well worth while now it has been finished).

Carers link have been great supporters of my wee awareness campaign, I was a guest speaker at their last AGM and look forward to attending and supporting them as a guest

You can find out more about carers link and the work they do at the links below

Tommy

Carers Link East Dunbartonshire

Enterprise Centre

Ellangowan Road

Milngavie G62 8PH

www.carerslink.org.uk

0141 955 2131