Monday, 30 September 2013

Your Life; Your Voice Exhibition and E book: Call for submissions from carers

Get involved in Caring Connections

Your Life; Your Voice Exhibition and E book: Call for submissions from carers
Have you got a particular object that means something to special to you?
A keepsake, a photograph, a place or some words that sums up your life as a carer or why you provide care?
Carers Scotland looking for images of carer fragments to complement “A Celebration of Caring in Scotland”Celtic Connections Concert in January 2014.
We hope to include as many items as possible in a multi-media exhibition and e-book.
We would also love to receive short videos monologues and poems, but no stories or songs please.
Send your entries in appropriate formats (see overleaf) to fiona.collie@carerscotland.org by 30 November 2013
To find out more, download the guidance on submissions below.  It provides more information and details of how to submit your entry.

Saturday, 28 September 2013

loneliness



Has been just over a year since my mum passed away ,mum was not only  my mum ,she was my best pal 
Before dementia ,before caring my life had been years of traveling with work and a home life was alien to me and As was I suppose in Many ways a structured life , routines and friendships

I always  felt uncomfortable when not on tour ,that was all to change with the seclusion , isolation ,loneliness and house that almost became a prison to mum and I 

We got thorough the best we could although sometimes it never felt that way and don't quite know how we did 

And we ever so lonely .I though life could never get more lonely but it has I miss my wee mum and there is a loneliness and sadness  in this house this heart that I can't get away from 

Mum no matter what she faced or we faced always made it better ,dementia had no way of stopping her ability to care so much for others 

I wish she was here tonight to make it better one more time 

Tommy 



Friday, 27 September 2013

Great thanks - Speaking events across NHS Grampian Feb 24th - 28th



Hi 

with great thanks to  Heather Tennant Learning and Development Facilitator Carer Information Strategy NHS Grampian - Lynn Iirvine - berklow dementia nurse consultant and Una Lyons lecturer Robert Gordon Universty Aberdeen for arranging a tour across NHS Grampiam February 24th -28th

I met with Heather and Lynn a few weeks back in Glasgow and we had a good chat about doing some talks - events togethernes 

Thank you all for this great opportunity to work together 

I look forward speaking about my magnificent mum , the letters I receive and people I meet on my tour along with  meeting people from across NHS Grampian 

I will post a wee itinerary of events one I have all the details 

Thank you 

Tommy 
 

Thursday, 26 September 2013

Honoured to be nominated NHSgg&c chairman's award NHS ambassador -volunteer

Hi

I am very grateful and honoured to be nominated for the NHSgg&c chairman's NHS ambassador / volunteer award 

I was over at Glasgow Caledonian university I tonight for the launch of the NHSgg&c Facing The Future Together awards hosted by NHSgg&c chairman Andrew Roberston and very indpred by the stories behind the staff nominations and staff I met tonight and have to say I have been meeting at my own talks 

So very honoured to be on the nomination Shortlisted 

With thank to the Andrew ,the board and all at NHSgg&c for this great privilege 

You can get a full list of nominees and the story in today Herald Scotland 

Tommy 

Tonight ttending NHSgg&c FTFT awards Caledonian University

Hi

Got  wee surprise invitation  through the  post ,inviting me to the NHSgg&c Facing The Future Together awards to be held at Caledonian University September 26th

The awards recognise and celebrate work and the people who have taken work forward over the last year across NHSgg&c

Looking forward to attending and hopefully meeting a few friends from my talks over the last year at hospitals across NHSgg&c along with hearing about the people and work nominated for the  awards

Tommy


Wednesday, 25 September 2013

Great privilege speaking Mount Hospital Leeds October 8th


Great privilege speaking Mount Hospital Leeds October 8th


With great thanks and respect to Vanessa Garrity directorate lead nurse mental health leeds and York PTF. For arranging the opportunety  for me to speak to the team at Mount hospital NHS trust on October 8th 

I have been invited to speak at a NHS England policy directorate event in Leeds  on the 9th and Vanessa kindly answered my plea for any other opportunities to raise awareness and speak as a son whilst in Leeds 

Thank you Vanessa and all involved for the support ,kindness and effort to arrange this 
Also looking forward to meeting Vanessa and some other inspiring people from leeds Anne Cooper and Angela  Legge who I have been following and chatting to via twitter 

Thank you all for the kindness  and opportunity and I love the wee poster designed by Alex





Meet Tommy...

Tuesday the 8th of October 2013 1.30 – 3pm
The Mount General Meeting Room.
Tommy is coming to speak to staff in our trust about his experiences (son, carer & campaigner) and the work he is doing to inform changes in dementia care. Tommy has been working tirelessly to have the feedback, concerns and views of carersrecognised in informing future service provision and in empowering carers themselves.
Carers play a crucial role in supporting care.  Tommy’s story highlights that it is in everyone’s interest that they are properly supported.
His work was shared across a number of NHS GGC hospital sites during Carers Week 2013 to help raise awareness amongst staff about the importance of supporting carers in contributing to delivering person-centredcare. In order to care safely and in good health, carers need information, support, respect and recognition.Tommy’s story highlights that taking on a caring role can sometimes mean facing periods of isolation, frustration and loneliness. Many carers struggle alone and do not know that help is available to them. Tommy’s situation highlights how getting access to the right information at the right time can be vital in helping manage the impact of caring.
To come & hear more and ask your question please come and meet Tommy.
More inform about Tommy & his work can be found at:  

Tuesday, 24 September 2013

Speaking Ninewells Hospital Dundee NHS Tayside December 4th &5th

Hi


With great thanks to Morag MacRae Patient Safety Development Manager - Patient Safety  Team Ninewells Hospital Dundee for inviting me to do some talks on December 4th and 5th 

I met with Morag a few weeks back when I was speaking at the Care Inspectorate development days in Dundee and she has kindly invited me to speak at the Hospital
We have arranged to meet again end of October to chat about how both days will work so a big thank you to Morag for the Invite

,also looking forward to meeting Sam majumdar consultant surgeon who helped with introductions

Thank you all for the opportunity


Tommy 


Monday, 23 September 2013

Today Meeting at St Andrews house tomorrow with mental health civil servants #dementia

Hi 

Back through to Edinburgh today  with Irene Oldfather to meet Scottish government mental
 Health civil servants 

We had a very good meeting last week with cabinet secretary for health Alex Neil and the mental health team when we handed over a report on our project to date 

So back to discuss the report in more detail and discuss future aims and outcomes 

Tommy 

new awareness- talks added the campaign goes on





September 2013
19th meet - reporting Cab Secretary Health Alex Neil Parliament 
25th - Speak Royal Alexandria Hospital.
26th - Attending NHSGG&C FTFT Awards. Nominated NHS ambassador award 

October 2013

1st - Attending Age Scotland Awards (Shortlisted Campaign 2013 Jess Barrow Award)
2nd - Speaking  Alz society Cardiff conference via Sarah Rochia Older Peoples Commissioner Wales.
3rd - Speaking at Hannah Mackay Productive Ageing Summit.
7th - Speaking to Lead Nurses Cohort 12 Conference.
8th – Speaking in Leeds at Mount hospital
9th – Speaking at NHS England Conference in Leeds.
17th – Speaking to Carers Link.
23rd- Speaking at SPAEN AGM Coatbridge College.
NHS Ayrshire & Arran dates TBC - 3 talks.

November 2013

1st - Speaking at NHS Conference Beard-More Hotel.  
6th – Speaking at Victoria Infirmary.
6th - Nominated for Scottish Health Awards (Evening Event).
8th - Speaking at Monklands Hospital NHS Lanarkshire.
11th - 14th - 4 day tour for NHS Highlands (6 talks over 4days).
21st & 22nd - Person Centred Care at SECC. Workshop day 1.  Speaking day 2 for H.I.S.

December 2013

03.12 - 05-12 3day tour for NHS Tayside.


January 2014 

20.01 Letters life ,love stories convert & exhibition 


February 
06.02 aberthay Univerity 
24.02 - 28.02  4 day tour for NHS Grampian 

March 

21.03 QMU University Edinburgh 

talks to January to mid September 
Hospitals
17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary
02.07 Vale of Leven Hospital
03.07 Royal Free Hospital London
09.07 Vale of Leven Hospital
01.08 Glasgow Royal Infirmary
27.08 Glasgow Royal Infirmary
03.08 Glasgow Royal Infirmary
17.09 Glasgow Royal Infirmary

Conferences / Other
22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
20.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event
04.07 Health Education East of England Staff Development Day
08.08 NES/ SSSC Dementia Programme Board
10.09 Care Inspectorate Staff Development Day
11.09 Care Inspectorate Staff Development Day

Universities
16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University
05.08 Dundee University
08.08 Dundee University
17.09 Glasgow University

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


19.02 South Ayrshire Carers Dementia Awareness Day
26.02 ‘Making Life Easier’ Event Murrayfield
14.03 Lockerbie Carers Dementia Group
22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council Dementia Awareness Event
01.05 ALLIANCE Annual Conference
02.05 North Ayrshire Council Carer’s Strategy Event
09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week
18.06 Presentation to Sainsbury’s staff Prestwick
20.06 ALLIANCE Involvement Networking Event
11.07 Glasgow North East Carers
31.07 Glasgow North West Carers
04.09 Cochrane house residential care 


02.02 Scottish Liberal Democrat Health Conference
20.04 Scottish Labour Party Conference
02.05 North Ayrshire Council Carers’ Strategy Event


proud be shortlisted Age Scotland campaign of the year award - JessBarrow Award for Campaigning






with great thanks to all at Age  Scotland for the phone  call today to inform me I have been shortlisted  for the Jess Barrow  Award for Campaigning .I feel very honored to be on the Shortlist 

THANK YOU from a son 
About Jess Barrow

Jess Barrow was Policy and Public Affairs Manager at Age Scotland's predecessor charity, Age Concern Scotland.  She campaigned widely for the rights of older people and was a lifelong contributor to the third sector.
Starting her decade-long career at Age Concern Scotland as a housing officer, Jess was passionate about the problems faced by older people, actively campaigning on issues such as free bus travel, measures to reduce fuel poverty, funding to improve housing conditions and to establish a national helpline for older people.
She also played a significant role in ensuring the introduction of free personal and nursing care, which has made a huge difference to older people across Scotland.  
Jess had a single-minded focus and commitment to making things happen, which was ultimately acknowledged with a secondment to the then Scottish Executive to help develop its strategy for a Scotland with an Ageing Population.
She was a dynamic figure in the development of Scottish social policy in the early years of devolution and her actions were defined by a passionate belief in social justice, in righting wrongs and in creating a fair society for all.
Jess passed away in 2007 at the age of 44.  She is survived by her husband, Gordon Russell, and their two sons, James and Calum.
tommy 


On 1st October we’ll be presenting the inaugural Age Scotland Awards.  Here’s who is on the shortlist.
Celebration
Thank you to the many groups and individuals who sent us an entry, for themselves or on behalf of others, for the Age Scotland Awards 2013.  We’ve been hugely impressed by the quality of applications, demonstrating yet again the vibrancy of older voluntary action, and that creativity, dedication and inspired collaboration can be found in Scotland’s services for older people.   Here’s the shortlist:
The Awards will be made on 1st October 2013 at Age Scotland’s Scottish Parliamentary Reception.  For more information about the Awards and this event email us atAwards@agescotland.org.uk.


you can find out more info on age Scotland at the links below
http://agescotland.wordpress.com/2013/09/20/a-drum-roll-please/

Meeting today school nursing Glasgow University

Hi

I was a guest speaker last week at Glasgow University School of nursing .I have been invited over this morning to meet  to a few lecturers to try and find a way of forming a partnership to work on the letters I receive and my outreach

Looking forward to a positive meeting and outcome

Tommy

Friday, 20 September 2013

Letters life and love stories exhibition and concert - proud toannounce 14 special project stands


CC Logo

Letters, Life and Love Stories Concert and Carers Reception

"Letters Life and Love Stories - A Celebration of Caring in Scotland” Gala concert will be held at the Royal Concert Hall in Glasgow on 20 January 2014 as part of Celtic Connections programme.
The concert will pay tribute to the love and dedication of Scotland’s carers and the part played by the many professionals and volunteers who contribute during the carer journey.
This partnership event with Regular Music and Celtic Connections will celebrate the lives of many for the 660,000 carers in Scotland and those who support them.  
Tommy Whitelaw, who worked for twenty years in the music industry, spent the last five years caring for his mum Joan who had dementia. He started a campaign, ‘Tommy on Tour’ to raise awareness, gathering letters from carers across Scotland.  The concert is the result of Tommy sharing these letters with Mark Mackie of Regular Music and Donald Shaw, Festival Director of Celtic Connections and a desire to bring the stories to life through music.
The concert will be held on 20th January at 7.30pm in Glasgow Royal Concert Halls as part of Celtic Connections.
Latest Concert Press Release

Carers Reception 

The ALLIANCE will be holding a pre-concert reception at Glasgow Caledonian University’s Saltire Centre from 4:00 to 6:30 pm.
The reception will reach out to inspirational individuals and groups, asking them to tell us about their journey caring for a loved one, and the motivation behind their caring role.
Building on the musical theme, and as music is often such a powerful 
link to emotions, people or places, we are asking people to identify a 
song that is meaningful to them.  Send us your song, describing your story and why it is important to you, to Lifestories@alliance-scotland.org.uk
At the reception there will be a range of exhibition stands from national and local organisations who engage with carers. These partners will each undertake their own project to collect and present the inspirational stories of those they support and represent in an innovative and engaging way.
More details will be released in the coming months.

ALZHEIMER SCOTLAND ACTION ON DEMENTIA and Healthcare improvement Scotland (logos still to upload ) 
Age Scot Logo
DCV Logo
Carers Link Logo
Carers Scot Logo
Carr Gomm Logo
GCU Logo
NHSGGC Logo
Patient Opinion Logo
Sense Scot Logo
SA Carers Logo
Quarriers Logo





Self Management Week 2013, 30 September - 4 October events

·         Angus Long Term Conditions Support Group is holding a range of open doors events from Wednesday 25th September until Monday 30th September across Angus (in Carnoustie, Brechin, Arbroath, Forfar and Montrose).  These events are an opportunity to find out more about the support groups and find out more about one of our members. 

Tuesday 1 October
·         A Self Management Health Walk around Glasgow Science Centre on Tuesday 1st October, the agenda and press release are attached.  The event starts at 11am and is likely to finish about 1pm (you will also get the chance to check out the Body Works exhibit).

Wednesday 2 October
·         The launch of ‘Emotion Matters training resource.  The event starts at 10am in the ALLIANCE office.  Emotion Matters is an online training that has been developed to increase understanding and awareness of the psycho-social aspects of living with a long term condition and provide skills that will enable more holistic, collaborative and person centred care.  There will be ALLIANCE professional associate members attending so it would be great to have ALLIANCE staff at this event. 

·         The Self Management Awards will be held at the Scottish Parliament on Wednesday 2nd October from 6pm-8pm.  This will be a good networking opportunity with our members and to raise awareness of Self Management among MSPs.  The film produced with Sir Chris Hoy will be launched at this event.  For those of you who are new to the ALLIANCE, this is a great event to come along to.  We would encourage all staff to attend if possible!

Friday 4 October
·         NHS Education Scotland is holding a Supporting Self Management Learn and Share event.  The event will be held from 9.30 – 1.30pm in Edinburgh, venue to be confirmed. This will be an opportunity to share ideas and experiences about supporting the workforce to support self management. 

·         Let’s Get On With It Together, part of Highland partnership supporting self-management is holding an open doors event in Inverness on 4th October from 10-4pm.  There will be chair yoga, therapeutic gardening amongst other things available. 


·         Therapy 4 Health is also having an open doors event, in Brandon House, Hamilton.  Therapy 4 Health support people to try out a whole range of therapeutic approaches.   The open doors event is open from 11am – 2pm.  

Thursday, 19 September 2013

A productive meeting today with Alex Neil Cabinet Secretary for Healthat Scottish Parliament

A productive meeting today with Alex Neil Cabinet Secretary for Health at Scottish Parliament


Hi

I was up very early This morning and traveled through to Edinburgh  along with my Mentor Irene Oldfather to meet with Cabinet Secretary for health Alex Neil and report on the dementia carer voices project based at the Alliance

We had a chat about the project to date along with handing over a report  and future hopes and activities


With great thanks to Alex and the Scottish Government for their on- going interest on the work we do .I look forward to taking this project forward engaging with and reaching out to as many people as possible

we have arranged to report back to the Cabinet Secretary in 6 months time 


Tommy





Wednesday, 18 September 2013

Great privilege invited to speak NHSEngland Policy Directorate seminar Wednesday 9th October 2013


With great thanks and respect to NHS England policy directorate for inviting me to speak at a seminar this October.

I had the great privilege to speak at the NHS East of England staff conference last month and look forward to attending and speaking at the event in October.in Leeds 

I will post more details once announced and look forward to speaking about ,my wonderful mum ,dementia ,caring ,the letters I receive and people I meet on my awareness tour 

Thank you NHS England for including and inviting a son and the life stories of families across the UK to attend and speak

with thanks to Natasha Davies Head of Policy Office NHS England office of Bill  McCarthy 

Tommy 

www.england.nhs.uk


           

Tuesday, 17 September 2013

thank you Glasgow University - Glasgow royal infirmary and Aliss - abusy day awareness and meetings



Hi

Today has been a busy day with two talks and a meeting with Andy from the aliss project
I started this morning with a talk at Glasgow university School of nursing   and then later on this afternoon gave my second talk of the day to staff at Glasgow royal Infirmary both talks about caring for mum the letter I receive and rolling out the "Getting to Know Me " initiative for nhsgg&c  .A big thank you to all for the invite and who took time to attend and a very big thank you to Sally and the team from Glasgow Royal Infirmary for the home baked Victoria Sponge 
thank you 
Tommy 
#willdotalksforcake 


attending tonight - Integrating health and social care: The future’s bright?-symposium to discuss the future developments of health and social care

Integrating health and social care: The future’s bright?

When:
17/09/2013 at 06:00pm
The Health and Social Care Alliance Scotland (the ALLIANCE) are delighted to invite you to this symposium to discuss the future developments of health and social care in the context of integration proposals as laid out in the Public Bodies (Joint Working) (Scotland) Bill.
The first in a series of lectures hosted by the Health and Social Care Alliance Scotland (the ALLIANCE) will explore the future of health and social care in an integrated landscape with some of the most innovative thinkers and practitioners in the country.
Guests will hear from key speakers on the opportunities for transformational change and how health and social care working more closely together can result is better outcomes for people who use support and services.
Chaired by Ian Welsh, Chief Executive of the ALLIANCE, the lecture will hear from:
Andrew Lyon, Converger at the International Futures Forum, works with governments, communities and others to consider new ideas and innovative solutions to “messy” and complex issues.  Andrew will provide a stimulating contribution on the need for a transformational shift in health and social care and opportunities this presents for the future.
In her role as Director of the East Renfrewshire CHCP and Chair of the Association of Community Health Partnerships, Julie Murray is passionate about the partnerships between health and social care providing an idea vehicle to deliver local, integrated community services.  Julie will offer her experience and learning on this agenda and reflections on the future of integrated health and social care across Scotland.
Please RSVP with any dietary or access requirements by 12 September by emailing event@alliance-scotland.org.uk or calling 0141 404 0231.
For more information, please contact:
Justine Duncan on 0141 404 0231 or email justine.duncan@alliance-scotland.org.uk

Monday, 16 September 2013

Meeting Cab Secretay health Thursday an emotional day

Hi

Well I am meeting Alex Neil Cabinet Secretary for Health  on Thursday September 19th  at the Scottish Parlaiment to report on the dementia carer voices project

This will be an emotional day for me. Last year on September 19th was the day my mum was rushed into hosptial and passed away 4 days later

I have had more than my usual amount of tears over the last weeks as we get closer to the week that broke my heart forever and the memory of that morning has been playing on my mind

So I will take my mum firmly in my heart and on my mind on Thursday when we meet and hope I can keep the tears at bay for our meeting

Tommy

For the love of mum

Today 2 talks Glasgow Uni and Glasgow royal Infirmary (talk 3/3 ) " getting to know me "


hi 

I will back to do my third of 3 talks at Glasgow Royal Infirmary September 17th to speak to staff about caring for mum ,dementia the letters I receive and people I meet on my awareness tour as part of the rolling out of the "getting to know me "   document 

with great thanks to lead nurse Sally Hughes for the invites and to all who have attended to date  

before that in the morning I will attending and speaking to students at Glasgow university at a session  Session titled, effective communication.

tommy 

Film and Blog on NHSGG web site - Experiences of Dementia / Tommy Whitelaw

HI 

a wee link to my blog and film on the NHSGG internal website 


with thanks to the community engagement, team 


tommy 


Tommy Whitelaw, from Glasgow WAS  a full-time carer for his mother who has vascular dementia for the last 5 years. Through this Tommy has became a campaigner raising awareness of the issues surrounding dementia. Tommy has produced a short film which provides an insight into the issues and challenges faced with those coping with Dementia and those caring for those with Dementia.  You can view the film by clicking the link below (requires Flash player).
Tommy continues to speak to carers groups, as well as key decision-makers who have influence over the lives of people affected by dementia. He is still gathering experiences, to make sure they are shared with those who can make life better for carers.
If you care for someone with dementia and would like to send a letter, you can:




Tommy Whitelaw
Dementia Carers Voices

Saturday, 14 September 2013

Thursday Meeting Cab Secretary for health Alex Neil update on Dementia Carer Voices

Hi

My next meeting with Cabinet Secretary for health will be on September 19th   the dementia Carer voices project based on my tommyontour campaign has a commitment to report to and meet with the Goverment 3times yearly
Along with my mentor and friend on this project Irene Oldfather we will be going through to The Scottish Parliament on September 19th  to meet ,discuss and update on the projects. And voices of families caring for a loved on with Alex Neil and civil servants who work on mental health

I look forward to atteneding and I am grateful for the on- going interest and interaction from and with  the Scottish Goverment

You can help with our reports and discussions by sending your thoughts ,experiences and opinions to tommy@i-woz-there.com


Friday, 13 September 2013

Thank you

September 22nd will be the anniversary of my kind caring mum passing away ,and I just miss her

This house ,my heart, and my life has a loneliness that hurts so bad ,my mum was was my friend ,my guidance and always made things better ,that's what mums do ,they make it better for their children's no matter what they face

Its lonely here tonight  ,in fact it's lonely every night no matter how busy I try and be with campaigning ,with dementia carer voices coming home is empty and cold

I just want to say thank you for the kindness ,the kindness when caring for mum , since mum passed away the kindness for his wee campaign and the kindness I have witnessed  in person and  the kindness I see from afar ,

Thank you for caring for us - for loved ones,  thank you for the kindness



Tommy


Great to meet with Theresa from NHS EDUCATION Scotland dementia promoting excellence

Great to meet with Theresa from NHS EDUCATION Scotland Dementia promoting  excellence

Hi,

A few weeks back I gave a Dementia Carer Voices presentation to the NHS Education Scotland dementia promoting excellence board and we agreed and on a personal point of contact to work with and feed into the board

Christopher and I had a great meeting today with Theresa to discuss way in which this can work in the future the work we do the and the work nhs education Scotland do


Looking forward to working with Theresa and fellow board members


You can get more information on the work nhs education Scotland dementia promoting excellence at the links below


A wee photo with Chris, Theresa and I after our meeting:


Thursday, 12 September 2013

The Mid-Summers Day My Family’s Life Changed - By Kevin E. Smiley

This campaign is about life stories  please find below Kevin's from Augusta. 

thank you Kevin for your kindness ,honesty and for sharing to help others 


Thank you Mr. Whitelaw for responding.  Attached you will find my story.  It will probably need to be edited for grammar and content.  I have trouble writing now.  I also have included a picture of myself.  Thank you for what you are doing to bring awareness around the world about this terrible disease.  It a picture of me and my granddaughter Avery.

  




The Mid-Summers Day My Family’s Life Changed - By Kevin E. Smiley

It was four years ago in a mid-summers day when my wife and I had learned that our lives were going to change forever.  That nothing as we knew it would ever be the same, a change so monumental that it would change the very fabric of how we approach the rest of our lives and the impact on the children would be just as extreme.  We had five children combined and two grandchildren at that time.
I remember those days when my life was going extremely well.  I had a fantastic job, one that I enjoyed getting up and heading to work.  One that provided a life style that my family had grown into over the years.  We weren't rich, but we were comfortable.  We had the big house, big pool, cars, and were able to invest money.  We could take trips, cruises, and other various fun things that life had to offer. Within a matter of one phone call, it all changed forever.
I guess it started showing its ugly head probably a year or two before.  This is what my wife (Debbie) has told me.  You see I had been having personality changes, changes that were for the worse.  Changes that would interfere with my family, my children, my wife, and everything in life.  I had gone from a happy, loving, compassionate person to a short tempered, mean, condescending, anxious, horrible man. I had gone from caring and loving my family to not showing any compassion or love.  Yes, I loved my family but I had lost the ability to show them and tell them.  I had gone from a great boss, to a boss that would cuss my employees out, being argumentative in meetings with other executives and customers.
Debbie had noticed it for a long time, but she thought I was just turning into a grumpy old man.  However, when it was brought to her attention at work on how I was behaving she encouraged me to go seek help.  Ironically, I was working on a friend’s rental property at the same time and an air conditioning vent had fallen and hit me in the head.  I was always having headaches, but with a hit to the head like this warranted a brain scan to make sure no damage was done.
The brain scan showed deterioration of both sides of the temporal and frontal lobes of the brain, which was not caused by the vent hitting me in the head.  My neurologist decided that this would warrant further research.  So, I forget how long it was but within a few weeks I had a spinal tap, MRI, CT scan, and PET scan of my brain.  I also had a neuropsych test too, which my neurologist said at the time it doesn't prove anything.  The results of all the tests were returned to my neurologist within in about a week or two.
What people don't understand is that even though everyone else tells you that you are acting differently, you don't believe them.  As far as you’re concerned nothing is wrong.  This is the way that I had felt during this time and still do on most days.
During the waiting period on getting the official diagnosis I decided that I would start doing research on my own.  I was in search of what could be causing all these problems that everyone was saying I had, but I didn't see.  After many hours spent on research, I had quietly decided that it was Front temporal Dementia (FTD).
I don't remember the exact day it was determined by my neurologist that it was FTD, but I think it was around my birthday in April 2009.  Here I was 46 years old, almost 10 years into a great career with the goal of retiring at 65.  I had served my country in the enlisted ranks of military from 1985-1992, served in the Persian Gulf War, had gone to college off and on and achieved what I thought was success at an early age.  My family was the greatest and my wife still loved me as much as the day we married.
After I received the news from my neurologist we were devastated.  What did this mean, how would we proceed, what was the treatment plan, is it curable, will I continue to work, what does this mean for my family, will I die?  All are very legitimate questions when given a diagnosis like this.
I'm going to tell you that it was pure "hell".
I was a Christian who thought for a brief moment that God had forgotten me.  That soon changed!
With my neurologist help we decided that best plan would be to go ahead and medically retire from work.  There went the job I loved, there went the income, and there went our life as we knew it. You see this disease feeds off of stress!  You can imagine having all this happen the amount of stress this would cause. We will say so much pressure I had a couple seizures because of stress, once in an executive meeting and once at my mother’s house.  That was enough for me to agree and retire.  So, in July 2009 I officially retired.  I had invested in Short term and Long term disability with the company I worked for, which was the first blessing.  I was quickly approved for SSDI, thanks to my neurologist and her handling of the claim.
After I left my job it was believed that I might live between 1-2 years.  This lead to my wife leaving her executive level job and income behind.  Wow, my income down, loss of her income gone, to stay at home with me.  We decided to sell our house and get rid of any extra bills we had at that time.  We had one child in college and in 2 years another starting, we had to make plans.
As you can see are lives changed dramatically.
It has been four years now and I am still kicking.  My wife is back at work, I have four grandchildren, one just graduated college, another is in her second year and going to nursing school.  The other three children have gone on to own their own lives and provide for themselves. We struggle every day with things that I do and forget to do, but all is fine.  I take several medications to control my behaviour.  I can become very anxious and mean quickly.  I don't like going in large crowds of people because it makes me very stressed.  It's like being put in a room full of people having different conversations and asked to listen to just one.  I get confused easily; I often do the same thing over and over.  I like watching the same TV shows over and over.  Life is totally different and sometimes very uncomfortable.  I sleep probably 12-14 hours a day, and have gained about 60 pounds.  This is all part of being an FTD'er
If you remember above I stated that for a "brief moment I thought God had forgotten me".  Well He hasn't!  He has given me the right doctors, the right will, the right fight, the right family and the right friends, to keep going.  I believe that God has helped me because I refocused my attention on him.  Things aren't the same; I have difficulty with a multitude of things in my life.  I can never work again, but what I can do is be an inspiration to others who are going through difficult times like this.  I have accepted my path and what the plan is.  I would not ever wish this disease on my worst enemy, because it is a thief of the most important things.  But, I praise God for waking me up to what’s important.
I want to share some of the symptoms that lead to this diagnosis:
Obsessive,Nervous,Lowtolerance,Heat,intolerance,UNEMOTIONAL,ANXIETY,Hypochondria,APATHY,Aspontaneity,Inflexibility, DISORGANIZATION,INATTENTION,LOSS OF INSIGHT Irritability ,IMPULSIVE, POOR JUDGEMENT, PARANOIA, COGNITIVE CHANGES,WITHDRAWAL FROM FAMILY/FRIENDS/SOCIETY, Critical of others Misnaming, Expressing extreme opinions in public, IRRATIONAL PURCHASES, Mood changes ,Dangerous driving/accidents, FALSE MEMORIES.
Losing/slurring speech, DISINTEREST, SLEEPING MORE OR LESS, LACK OF AWARENESS, LOSS OF LOGIC, HOARDING, Road rage, INCREASED APPETITE FOR SWEETS,CHANGE OF PERSONALITY, Lack of responsibility, DEPRESSION, Interest in porn, Ringing in ears.
Layering clothes, Selfish, Angry/violent, PACING, Difficulty concentrating, Less eye contact, MEMORY LAPSES, Lying, Losing items, Losing track of time, DANGEROUS BEHAVIOR TOWARDS CHILDREN, ODD BEHAVIORS, Cruelty, No motivation, LAZINESS, Blaming others for own mistakes, Not finishing projects, CARELESS WITH MONEY,SHOPPING COMPULSIVELY, Flirting, Hurtful towards others, INABILITY TO FOCUS ON JOBS, Rigid thinking ,Wringing hands, Swearing.
Hyper-religious ,Impatient, Irrational jealousy, Sex obsession in non-sexual situations, High sex drive, Repetitive reading/listening/watching, EASILY DISTRACTED,LACK OF AFFECTION, Childishness, Kleptomania, Hostility, Sarcasm
 I personally have experienced about 90% of the above according to my wife and my own assessment.  Physicians believe and will tell you that you probably are not aware you are doing some of the above.  However, I believe they are wrong with that theory.  I believe you are more aware in the early onset of FTD. Maybe, you don’t know when you progress into other stages of the disease.  I think you lose the ability to control, but are very aware.  I have seen this in myself.
After four years of walking down this unknown path of FTD, it occurs to me just how little is known about this disease.  I believe that it is the job of us who have it to bring about awareness and understanding to the world.  I think the hardest part of this disease is the lack of emotion you have.  I remember when my last two grandchildren were born I was happy, thrilled, but had no emotions.  My mother died in September 2012, I had no emotions, no crying, and no outward display of sadness, just flat with emotions.  I felt extremely sad but just couldn't show the emotions.
This is; "That mid-summers day when my family’s life changed".

Invited to speak at Surgery & Anaesthetics Sharing Good Practice conference 1st November Beardmore Conference Centre

Hi 

With great thank to NHSgg&c  especially Con Gillespie and Margaret Connelly for inviting me to speak at the   Surgery & Anaesthetics Sharing Good Practice conference 1st November Beardmore Conference Centre

I look forward to both attending  and speaking about my magnificent mum ,dementia ,caring ,the letters I receive and people I meet on tour 


Tommy 

popping through to Edinburgh for interview with Katie Hollyrood magazine


hi

popping through to Edinburgh this afternoon for an Interview and update on the Dementia Carer Voices project with Katie Macintosh


the Magazine keep us all up to date with whats going on at the Scottish Parliament

looking forward to meeting and chatting with Katie later today

Tommy

you can view the magazine at the links below

Tommy    
http://www.holyrood.com/about-us/

Wednesday, 11 September 2013

Thank you care inspectorate


Hi


I would just like to say a massive thank you to healthier and all from the care inspectorate for the opportunity to speak yesterday and today at their staff development days 

I found both days very inspiring hearing more about the work the care inspectorates do and the hopes and dreams of them as an group and individuals 


So thank you all for the inclusion ,opportunity and kindness 

Tommy   




Tuesday, 10 September 2013

Today Care inspectorate to film my talk for awareness

Hi

I was one of the guest speakers yesterday at day one of the care inspectorate staff development day.I have to say I feel inspired by the passion and discussion I heard from so many people  

A big thank you to heather for the opportunity and for organising a great day 

I was approached  and happily said yes at the end by the team from the care inspectorate to ask if they  could film my talk today  for their website and to to send put to people 

So a big thank you to all for yesterday and  today for the inclusion ,kindness and their time 

Looking forward to day 2 and hopefully don't fluff my line tomorrow when being filmed 


Tommy



Speaking at MacKay Hannah Productive Ageing Summit October 3rd

Hi

With great thanks to Mark from MacKay Hannah for the opportunity to speak at their Productive Ageing Summit being held in Edinburgh on the 3rd of October

The aim of the event is to encourage a shift in focus and attitude from the challenges provided by an ageing population, to the opportunities and assets they bring

I look forward to talking about this change from a personal point of view, and the importance of treating older people with dignity respect and as unique individuals, not defined by their age or a long term condition

Thanks again

Tommy

Speaking across NHS Highland November 12th 13th and 14th

Hi

With great thanks to Ruth and Mamie from NHS Highland for inviting me to do a few talks across groups they engage with at NHS highland 

I will post more details later once I have them 

I look forward to speaking about my magnificent mum ,dementia ,caring ,the letters I receive and people I have met on my tour 

Once again a big thank you to Ruth alzheimer Scotland dementia nurse consultant and Mamie from NHS highland for this opportunity 


Thank you 

Tommy

 Cabinet Secretary for Local Government and Planning, Scottish Labour Party (subject to Parliamentary business)

Representative to be confirmed Argyll Voluntary Action
Professor Richard Kerley Conference Chair: Professor of Management, Queen Margaret University; SRK Consultancy; Chair of CSPP

Putting care at the heart of our communities

“Our residents do not live in our work place, we work in their home.” I have been sharing this quote from a care home worker and ...