Wednesday, 31 July 2013

Today speaking lead nurses Glasgow Royal infirmary "getting to know me "

Hi

THANK YOU to the nurses for their time today and for keeping their promise to bake me a cake for doing my wee talk #kindness


with great thank s to Con Gillespie and Lead nurse Sally Hughes for inviting me to speak to staff at Glasgow Royal Infirmary  as part of a series of talks relating  to  the rolling out of the "getting to know me " initiative across NHSGG&

I look forward to the opportunity to speak about Dementia ,Caring .my magnificent mum ,the letters I receive and people I have met on my awareness tour

you can get more details on the initiative below

Tommy

Getting to know the whole person, not just the patient and the illness, is the driving motivation behind a new, nationally developed  resource to improve the experiences of vulnerable adults and their carers in acute hospital settings.
The ‘Getting to Know Me’ document > developed by Alzheimer Scotland and The Scottish Government records personal information about the patient’s likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.
The information, which will be kept at the bedside during a hospital stay or when attending outpatient services, helps staff to build positive relationships with patients and their carers by allowing them to get a fuller understanding of their life story, preferred routines and specific pieces of information such as what helps them to rest or relax.
Con Gillespie, Lead Nurse, Emergency Care and Medical Services, said “We are confident that this will enhance care and if used properly will facilitate better care for an individual’s needs and reduce the risks of not addressing what they require.”
“It will be helpful if carers ask staff for a copy to complete when their loved one is admitted to a hospital ward, as staff will be able to supply these once wards are stocked with copies.”
Dementia Carer Voices Project Officer Tommy Whitelaw has been invited to participate in the rolling out of this programme across NHS Greater Glasgow and Clyde. Tommy will be sharing his experience of caring for his late Mother Joan with Lead Nurses and staff, to highlight the importance of ‘remembering the person’ and looking beyond an individual’s diagnosis.
Tommy said “Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, failing to recognise the life she had led and could have continued to lead for as long as possible.”
 “‘Getting to Know Me’ is all about recognising each individual’s unique life story, abilities, likes and dislikes, so I am privileged to take part in its promotion in any way I can.”

To view the document, click here >. This can be printed off and photocopied.




Tuesday, 30 July 2013

Missing my mum Joan Whitelaw my friend

That's the thing about tears, when they start , sometimes it's feels they will never stop my mum passed away 10 months ago and I miss her terribly

August has been on my mind the last few weeks , last August was the sharp decline in mums health and the true reality of what was ahead .my mum , my friend my pal was becoming so weak and this son who had felt so helpless so often whilst caring for his mum felt lost and helpless completely

I have had the saddest of  nights tonight I just miss her so much I just miss my mum my best pal

Good days ,bad days days ,happy days ,sad days tonight just happens to feel the saddest

Tommy


Monday, 29 July 2013

Watching the Olympic ceremony re run a look back at my blog and a few tears



Hi 

It's another Saturday night and sitting at home alone and as usual not quite knowing what to do with myself 

I was sent this previous post  by sportsmement who had featured my blog post a year ago this weekend on their site as the Olympic opening ceremony was in full swing 

I remember sitting writing it with a great sadness in my heart as I knew my mum was very ill and moments together ,special occasions where quickly running out 


I sit tonight's so much more lonely than then , my mum passed away 8 weeks later . I miss my mum so much 

Tommy 



My wee mum is in bed, I have spent the last hours tidying up along with as I always do preparing for all we do in the morning ,while I have been pottering about I have been catching snapshots of the build up to Olympics and I found some tears coming, along with memories.

I loved the Olympics when I was young and can remember sitting on the floor listening intently to my dad and his enthusiasm for all who created magical sporting moments and my strongest memory is sitting on the floor of our sitting room at my mum and dads feet for days on end for all the crucial moments such as the 100 meters final.

Well my dad is no longer with us but I will re-enact my childhood and sit in my wee mum's room on the floor beside her bed and watch the opening ceremony and cherish the memories of sitting with my mum and the man she loved since the day they met.

My mum may have lost her memory to dementia but I will save tonight in mine and add to all the others that make me such a lucky son. We sat as a family then ,and we sit as a family tonight with my mum beside me and my dad firmly on our minds

Tommy

Tommy on Tour - One man's mission to raise awareness of dementia

http://tommy-on-tour-2011.blogspot.co.uk/2012/07/going-to-sit-in-my-mums-room-and-watch.html

Saturday, 27 July 2013

A song that tells your story can you help - the story behind the song #life-stories #caring

Letters, Life and Love Stories - A Celebration of Caring in Scotland through Music and Words#

A song that tells the your story can you help



Hi

I am very shortly about to embark on new project on caring and life stories .One part of this new project is songs ,music and the special memories or stories that a certain songs have

If you have a song that tells your story, reminds you of someone, or somewhere, makes you smile, brings you comfort ,joy helps you get through the tough days then it would be great to hear from you and the story behind the song
You can help by sending your song and story to Lifestories@alliance-scotland.org.uk



Tommy

And I love you sofor the good times my dad would sing these songs to mum at parties and it makes me both cry and my heart smile when I think of the love they had for each other and how much I miss them both they truly where the good times and I loved them so

U2 running to stand still
This song, in many ways was the story in my heart whilst caring for my mum and tells how I struggled inside so often you've got to cry without weeping, talk without speaking, scream without raising you voice


Letters, Life and Love Stories - A Celebration of Caring in Scotland through Music and Words

I am really excited to announce the latest project I will be involved in . 

Over the last few years I have been privileged to meet hundreds of inspirational people, hearing of their stories, experiences and motivation caring for a loved one, and not to forget the inspirational people who play such an important part supporting the carer journey.

This project will revisit some of these inspirational individuals and search for more along the way. I hope this project will help celebrate the stories of the people across Scotland who play such an important role.
We are really proud to announce the "Letters Life and Love Stories - A Celebration of Caring in Scotland in Music and Words” concert 20 January being held as part of Celtic Connections programme at the  Royal Concert Hall Glasgow.

The Letters, Life and Love Stories Gala Concert taking place during next year’s Celtic Connections 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 unique partnership event between the Health and Social Care Alliance Scotland (the ALLIANCE), Regular Music and Celtic Connections will celebrate the letters, lives and love stories of many for the 660,000 carers in Scotland and those who support them.
A key part of the concert is reaching out to inspirational people and asking them to share in music and words their caring journey.   The ALLIANCE will collect these stories and invite many of these inspiring individuals to join us at a pre-concert reception and the Gala Concert.

In advance of the concert, we will reach out, engage with and collect stories of peoples caring journey.  For carers we will collect the story of their journey with their loved one; for health and social care professionals we want to explore the motivation behind their caring role.  We want to collect the story behind your chosen song and its meaning to you.  You can share your story and song at Lifestories@alliance-scotland.org.uk
The reception and concert will celebrate and raise awareness of the dedication and love of individuals, families, communities and professionals in caring for our most vulnerable.
The idea of the concert came from a meeting with Tommy Whitelaw, Project Officer at the ALLIANCE, Mark Mackie from Regular Music > and Celtic Connections > Festival Director Donald Shaw where Tommy shared some of the letters and spoke about ways they could be brought to life by music.

Tommy Whitelaw, who worked for 20 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.

Tommy said
I started the campaign to raise awareness, travelling around Scotland’s towns and cities to gather letters from hundreds of carers and take them to the Scottish Parliament.
Among other things, the letters highlight the transformational impact that special health, social care and voluntary staff have had on their journeys, and most importantly the amazing lengths that carers go to through love.
Ian Welsh ALLIANCE Chief Executive said
“The concert is a great opportunity for us to celebrate and thank carers for their tireless and all too often unrecognized work.  We are excited by this great partnership opportunity to showcase the letters life and love stories of carers in Scotland.
At the ALLIANCE we aim to provide a stronger voice to carers and ensure they enjoy the right to live well!” 
The concert will be held on 20 January at 7.30pm in Glasgow Royal Concert Halls as part of Celtic Connections, the premier winter music festival in Scotland which will be held in 2014 between 16 January and 2 February.
With great thanks and respect to Mark and Donald for allowing us to be part of the Celtic Connections

can you help with a song and the story behind the song 

http://tommy-on-tour-2011.blogspot.co.uk/2013/07/a-song-that-tells-your-story-can-you.html

More details will be released over the next months

For more information, please contact:
Tommy Whitelaw or Justine Duncan on 0141 404 0231 or emaillifestories@alliance-scotland.org.uk

Some statistics about Carers
Carers in Scotland
1. There are 660,000 carers in Scotland – 1 in 8 of the population.
2. Every day almost 500 people take on a caring responsibility – that’s 178,000 people each year.
3. 3 in 5 of us will become carers at some point in our lives.
4. 110,000 people provide over 50 hours of care per week.
5. Over 250,000 people juggle caring with holding down a job.
6. By 2037 the number of carers in Scotland will have increased to around 1 million.
7. Carers save the Scottish economy £10.3 billion annually – the cost of providing NHS services in Scotland.
8. The main carers’ benefit is worth just £58.45 for a minimum of 35 hours.
9. Three quarters of carers are struggling to pay utility bills and more than half are cutting back on food and heating to make ends meet.
10. Three quarters of carers say their health is worse because of their caring responsibilities.
Source: Carers Scotland www.carersuk.org/scotland >




Thursday, 25 July 2013

Letters, life & love stories, can you help a sons campaign Letters, life & love stories,


Letters, Life and Love stories, can you help a son’s campaign?

This campaign is built on life stories, my wee mums life story was a love story.  She loved and cared for everyone, for her husband, my hero - my dad and for her children.  My Mums amazing kindness and ability to care for everyone was inspiring as everyone deserves the right to keep their life closer to a love story and as far away from tragedy as possible.

Society has its part to play I loved my wee mum but we spent too much time lonely isolated and the lack of understanding towards us challenged the love story all too often.  We can’t at this time cure Dementia but we can cure so many of the challenges that are allowed to play such big parts in our lives.  Loneliness, isolation, understanding and awareness we can help change them.

We have to celebrate the greatness in people the lives they led and should be allowed to lead. I believe to help someone we need to know them, we need to keep their love story on track and learn about them if we use Dementia and their diagnosis as the starting point then we fail people.

My mum Joan Whitelaw was too often viewed as a wee woman with Dementia and I as her son and carer too often felt ignored and I want to help change that.
So I collect life stories to take to all who need to read them, to show the lives people lead and the impact society is allowing Dementia to have and the part we can play.

Love story or tragedy what part will you play?

You can help by sending your story, thoughts or opinions to tommy@i-woz-there.com  and my promise is the same as my promise to mum to take them to all I think should and need to read them, hopefully changing attitudes, raising awareness and understanding one love story at a time.

Tommy  

Monday, 22 July 2013

#2013 Thank - you for the invites to speak and opportunities to raiseawareness

Thank you for the invites to speak  and opportunities to raise awareness  so far 2013  

Looking forward to more opportunities for the rest of 2013  

Contact details Tommy@i-woz-there.com 




17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary
02.07 Vale of Leven hospital
03.07 London  royal free hospital 
09.07 Vale of Leven hospital 


Confderences
22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
21.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event
04.07 health education east of England 
Universities
16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University

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

Outreach - involvement 

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

Policy 

20.03 members debate Scottish Parliament .

           Stand at Snp conference Perth
02.02 Scottish Liberal Democrat Health Conference
20.04 Scottish Labour Party Conference
02.05 North Ayrshire Council Carers’ Strategy Event

Documentary

20.02 Radio SCOTLAND medical matters (who cares for the Carers ) based on my letters 

Films launched 

10.06  A Carers story for NHSgg&c acute service training 

13.06  "it's ok to ash with NHSgg&c - chp. Carer engagement film 

Sunday, 21 July 2013

Having a stand pollock Gala day Saturday 27th July

Hi 

I will be having a wee dementia Carer voices information stand at pollock gala day on Saturday July 27th  at pollock community Center 

The event starts mid day 

With great thanks to councillor David McDonald for inviting me along to raise awareness. If you are attending the event on the day  I hope you can stop and say hello 


Tommy 

January 20th a very special event

Hi

I will be very shortly announcing a very special day / event .

Since my awareness walk back in 2011 to collect life stories and raise awareness , a campaign that has continued on.and now under the wing of the Alliance Scotland via the Dementia Carer  Voices project based on and to harness the work of tommy on tour .I have had the greatest privilege meet in person , through social media or word word of mouth  amazing people , many caring for a loved on and many in a professional or voluntary capacity making a difference to the lives of others

For twenty years I traveled the world with my job and as I am sure many people are for the country they come from  was always very proud to be a boy from Glasgow Being Scottish I was always welcomed with open arms ,the Scottish accent was always welcome

Over the 5 years caring for mum as loneliness and isolation took the the place of friends and opportunities and we neared a crisis  I would sometimes think what was I so proud of

Since the start of my campaign I have found so many many reason to be proud .I have met them ,been to written to by them heard about them and witnessed the love ,care ,devotion and dedication of so many people

On January 20th 2014 I will be inviting. Some of the people described above and some I have yet to meet to a very special event .a celebration of caring a thank you for caring

If I ever travelled the world again which is unlikely I have more than an accent to be proud of I have the, any people I have met and still to meet to make this son proud

January 20th a very special celebration a very special thank you


Tommy

Wednesday, 17 July 2013

Health education east of England conference some photos


Hi

I had the privelage to be one of the guest speakers on July 4th at the Health Education East of England staff conference

I had a really enjoyable time both speaking and meeting all the people connected

A few photos from the day speaking then taking questions from the delegates thank you James fletcher photography for the copies and to Rebecca and all at HEEoE for the opportunity and kindness


Health Education East of England
2-4 Victoria House | Capital Park | Fulbourn | Cambridge | CB21 5XB






Tuesday, 16 July 2013

Thank you mum -

Hi

Today is mums Birthday ,the first since mum passed away and I just miss her ,I am still pretty much lost in this house and the loneliness when home leads straight to my heart

I would like to say thank you today to my mum for being the best of mums ,the best friend just the best mum any son could wish for

My mums life was a life of kindness and caring ,kindness and caring towards all she met and I miss that ,I miss her kindness , guidance friendship and care .Throughout mums journey with dementia I was described as  her Carer and towards the end mum needed much care as dementia took its grip ,but that's only half the story , mum cared for me all my life , even on hardest days ,the days where I felt I was falling apart , the last painful months she could make it better with a smile or squeeze of my hand she was remarkable and I miss her her

There is nothing more i could have asked for in a mum she had it covered so THANK YOU mum

And thank you to all who have taken mum mums story To heart and supported our wee awareness campaign thank you for the kindness










Saturday, 13 July 2013

Holiday weekend, still not sure what that means . mums Smile no longer here

Holiday weekend, still not sure what that means
Firstly I wish all a lovely  holiday weekend .I was out today doing a talk then filming and on my way home on the bus the chatter from people planning their long weekends made me smile As I got home tonight as always happens my wee mum was on my mind,I have yet to open this front door without a sadness hitting me is some way shape or form

5 years of dementia and caring ,weekends, weekdays, bank holidays ,holiday weekends they all blended into one.We could not differentiate .they where just days to try our best to get through,And that’s the
great sadness.of course we had good days ,we certainly had love but looking back they where just a fog of  not understanding,loneliness and fear. This is something we have to change, we have to make the hard days better for people, and we have to make the days caring for a loved one  not something we try to get through just to get through tomorrow. but time to love and cherish Even now 8 months after my wee mum passed away weekends and week days are all the same to me
It was Easter last year that a big change came to us and mum ,as they had so often ,but this time I knew in my heart there where not many more big changes mum could take. Not long after Easter  my mum was confided to her room and bed .I took a wee photo that day as I gave mum her wee egg knowing dementia and time was truly against us and it would be our last easter together .and I miss her sitting here just now I miss mums kindness her love ,her care and the great mum she was.The the loneliness we felt over the last years was in many ways  a rehearsal for how lonely life can be when a best pal is no longer here

Tommy

Thank you Scottish Social Services Council for the article



 Hi 
A big thank you to all connected with Scottish Social Services Council (especially Sandra) for the tommy on tour – Dementia carer voices article on their national website and bulletin today
 You can view the article at the link below


you can get more details on the work Scottish Social Services Council do at the links below


Tommy Whitelaw
Dementia Carers Voices





Friday, 12 July 2013

Today back to see great friends Glasgow North East Carer Center


hi

Today  I will be popping into to see great friends at  Glasgow North East Carer Center .This amazing bunch of people have given my campaign the greatest of support since day one .helping with life stories ,in fact 3 of the people who attend this group are in my first film sharing their  experiences

I am looking forward to seeing the all again ,catching up and updating them on my new projects

so looking forward to seeing Kay and all the gang


a wee photo from my last visit

Wednesday, 10 July 2013

Today Speaking Vale of Leven hospital "getting to know me " initiative

Hi

With great thanks to Con GIllespie, lead nurse consultant accident emergency and acute services nhsgg&c for arranging and inviting me to speak at Vale of Leven hospital Alexandria. On July 2nd and 9th as part of the roll out of  nghsgg&c "getting to know me " document and practice.

I will be doing both talks to staff who work across all areas of the acute services. Con is very passionate about the "getting to know me" document and practice and has arranged quite a few talks lately and in the near future for me to host.

So thank you Con, I look forward to speaking about caring for mum, dementia, and the letters I receive and people I have met on my campaign.

You can get more details on "getting to know me" at the link below.

Tommy

Getting to know the whole person, not just the patient and the illness, is the driving motivation behind a new, nationally developed  resource to improve the experiences of vulnerable adults and their carers in acute hospital settings.
The ‘Getting to Know Me’ document > developed by Alzheimer Scotland and The Scottish Government records personal information about the patient’s likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.
The information, which will be kept at the bedside during a hospital stay or when attending outpatient services, helps staff to build positive relationships with patients and their carers by allowing them to get a fuller understanding of their life story, preferred routines and specific pieces of information such as what helps them to rest or relax.
Con Gillespie, Lead Nurse, Emergency Care and Medical Services, said “We are confident that this will enhance care and if used properly will facilitate better care for an individual’s needs and reduce the risks of not addressing what they require.”
“It will be helpful if carers ask staff for a copy to complete when their loved one is admitted to a hospital ward, as staff will be able to supply these once wards are stocked with copies.”
Dementia Carer Voices Project Officer Tommy Whitelaw has been invited to participate in the rolling out of this programme across NHS Greater Glasgow and Clyde. Tommy will be sharing his experience of caring for his late Mother Joan with Lead Nurses and staff, to highlight the importance of ‘remembering the person’ and looking beyond an individual’s diagnosis.
Tommy said “Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, failing to recognise the life she had led and could have continued to lead for as long as possible.”
 “‘Getting to Know Me’ is all about recognising each individual’s unique life story, abilities, likes and dislikes, so I am privileged to take part in its promotion in any way I can.”

To view the document, click here >. This can be printed off and photocopied.





Today Meeting in Edinburgh new project January 2014

Hi

Well today was a very busy day ,I had a meeting this morning with regards to a wee project I will be announcing soon for January 2014 I then hopped on a train to Balloch to do a talk at Vale of Leven Hospital to staff ,with great thanks to sister fox for organising and to all who took time to attend

Tomorrow I am off to Edinburgh to meet with a great friend and partner  in this new project who is kindly helping make this  event achievable .will soon be able to announce this new venture
But let's just say its based on " letters life and love stories " and caring

The awareness campaign goes on  thank you for the kindness and support

Tommy

Tuesday, 9 July 2013

Monday mums birthday the first since mum passed away

This coming Monday is mums birthday the first since mum passed away and I just miss her .There are days like birthdays. Or Christmas or just dates that have great significance in our lives

I remember this time last year preparing for mums birthday and knowing in my heart it would be the last we shared together .Not that anyone would discuss this in any great manner as much as I tried

It was pretty much like the previous birthdays ,and most days to be honest mostly just mum and me . sitting and looking back so happy mums big sister my aunty blondie and Jinty her daughter in law came along with a cake ,kindness  and friendship that surely lifted our spirits .I am so so glad they did you know it's important we spend special occasions with special peolpe

I keep looking towards next week this significant day and the only thing that's guaranteed is I will miss my mum so much but then that is the one thing that is guaranteed every day missing a remarkable person who I can honestly say I WAS SO LUCKY TO BE HER SON


TOMMY

Today Popping in to West Glasgow Carers Center


 hi 

I will be popping into West Glasgow Carers Center today  for a chat will Wilma who runs the dementia / caring support group there to update on my awareness work and dementia carer voices project 

looking forward to meeting -updating- and hearing about the work being done at the center 

you can get more information on the work the do and services they help with at the link below 



Tommy 

contacts 

Maureen center manager

Wilma dementia support group  

West Glasgow Carers Center
1561 Great Western Road
Glasgow, G13 1HN

Tel: 0141 959 9871


Filling The Hole At The End Of The Road Julie Line #for-mum #life-stories

with great thanks to Julie for sharing ,thank you 


Filling The Hole At The End Of The Road

Julie Line (@julieline58)

For years the first thing I thought about when I woke in the morning, the last thing on my mind at night and for most of the times in between was Mum.  I first felt responsible for her when Dad died of Cancer in 1994. Mum was 58 and still working as a Hospice Nurse. She had been with Dad since she was 17 and they hardly ever spent a day apart. I couldn't begin to imagine how she would cope without him.

At first it was just keeping her company and helping her manage her finances, something Dad had always done. I had recently divorced and had 2 young children so we all supported each other through the grief of losing Dad and us both living single lives again.  The pattern was set and we became "Joined at the hip".

Just before Mum was about to retire she suffered a heart attack. She was admitted to hospital and had stents fitted to widen her arteries. During her time in hospital she complained of headaches but was assured they were just a side effect of the heart drugs she was taking. We were worried about her as we couldn't face losing Mum so soon after Dad. My feeling of responsibility for her increased and it was months before I began to feel confident enough to leave her again. Fortunately she made a good recovery but was forced to leave work.

Retirement meant that Mum could now spend half of the year in Australia with my brother and his family, but when she was in England she was always near me. I had moved to be near the wonderful new man in my life and Mum followed me to Somerset. She bought a flat that could be safely locked up when she was away and her life seemed all set for adventure. This was the pattern for the next few years until we could no longer pretend that the forgetfulness and anxiety were nothing to worry about.

Eventually Mum was diagnosed with Vascular Dementia. The doctor told me, but only ever referred to "problems with your memory" when talking to Mum.  No one explained what the prognosis was or what help was available. Being ever practical and having knowledge of the health system we managed ourselves for as long as possible. Mum moved to a retirement complex with a resident manager and 24 hour call system and I spent as many hours a day with her as I could.  When I was away friends and relatives would fill to help us .

Over the next few years as Mum's condition worsened she needed more and more of my time. When I wasn't with her I would phone constantly until she became too confused on the phone. Her neighbours were wonderful and kept an eye on her and she started to receive home care visits to ensure she had eaten and taken her medication. We plodded on together finding a way of coping with every new problem as it arose. There were good days and bad ones but we laughed our way through it whenever we could.

Eventually we realised that we were reaching the point where Mum needed more care than I could manage without her living with me full time. I decided that it would be harder to try to care for her myself and fail than to make the move straight from her own home to a care home. I looked at several homes and was fortunate to find one just 5 minutes from me. Mum had a good pension and had a property to sell so we didn't need to wait for Social Services to approve or agree funding. All I needed was for them to have a room. 

The next few weeks became very difficult. As Mum had Vascular Dementia there could be huge deterioration in her condition almost overnight. This happened just before a room became available. I will always remember the relief I felt when I had the call to say she could move in next week. I also remember the feelings of guilt and sadness the first time I left her.

Luckily for all of us Mum's Care Home came to be her real HOME. The carers like extended family and I would happily spend hours at a time visiting everyone. It became like a second home for me and I grew to love many of the residents. I grieved with their families when they passed away and worried when they were ill or had to move to a nursing home. My biggest fear was that Mum would have to leave.

I talk about those times in the film I made for Somerset Care http://www.dementiajourneys.com/wp/2013/04/18/julie-ann-somerset-care-petals/

At the end of 2012 Mum became very tired and breathless and we thought we were moving into yet another new phase. I began to spend even more time with her every day as I wasn't sure how much longer she would have. She passed away on 31/1/2013, very suddenly and before I could get to her yet I knew she was surrounded by carers who loved her.

Once the funeral was over and my Australian family had returned home reality hit hard. What do I do with all the extra time in my day? How can I replace the hours spent with my lovely Mum in the home where she was so well cared for and loved?

While Mum was at Critchill Court I decided I wanted to give something back so started fundraising to create a 1950's Memory Room for the residents to enjoy and a place to stimulate reminiscence. I am working with them to complete that project which will be named Gran Anne's Room in her memory. We plan to decorate and furnish the room in 1950s style and fill it with items to prompt memories. People have been very generous with their gifts of money and items.

I also discovered Twitter. I had dabbled a bit but was really a Facebook addict, using it as a tool for staying in touch with my Aussie Relatives. Once I started to explore Twitter further I met some wonderful people all living with dementia themselves or caring for a loved one. I found Dementia Challengers www.dementiachallengers.com  and others and have tried to support my new friends, most of whom I have never met. There are so many of us out there experiencing life on the rollercoaster that is Dementia.

But the thing I am most proud of is helping my brother, John Belchamber, who has set up the Dementia Journeys website www.dementiajourneys.com  to connect people from all over the world who are themselves on their own journey. Ours may be over but there is still so much to be done. John is the driving force behind this venture and Mum is our inspiration but if I can help others by sharing our experience I will, I hope, be finding a way of "Filling the hole at the end of our road". 

You can read more about Mum, Anne Belchamber’s story


My Brother, John Belchamber (@JRBsays) writes haiku poetry and is writing a series of Dementia poems based on the experiences of people on a Dementia Journey. He will be publishing these in a book with profits going to Dementia Research. Some of these poems have been turned into cards and gifts which can be purchased from http://www.dementiajourneys.com/wp/dementia-store/dementia-journey-greeting-cards/  Please take a look. I hope you will like them and relate to the sentiments he expresses.  His first book JRB’s Haiku Journey is available on Amazon and iStores http://www.amazon.co.uk/Jrbs-Haiku-Journey-John-Belchamber/dp/1291340653/ref=sr_1_1?ie=UTF8&qid=1370182199&sr=8-1&keywords=jrb



Sunday, 7 July 2013

Thank you A wee itinerary of thanks for the invites to speak at eventsthis year to date

Thank you to all below for inviting a son to speak at your event ,to share his mums ,his own and the story of the letters I receive ,thank you for the kindness and opportunity 



THANK YOU 

Tommy  

17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary
02.07 Vale of Leven hospital
03.07 London royal free hospital 
09.07 Vale of Leven hospital 


Confderences

22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
21.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event
04.07 health education east of England 
Universities
16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University

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

Outreach - involvement 

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

Policy 
 20.03 members debate Scottish Parliament .

           Stand at Snp conference Perth
02.02 Scottish Liberal Democrat Health Conference
20.04 Scottish Labour Party Conference
02.05 North Ayrshire Council Carers’ Strategy Event


Great honour to be speaking sharing the caring event June 13th

Hi  With great thanks to Dr Helen Brown CEO Carers Trust Cambridgeshire for the kind invite to attend and speak  Thank you for the kindness ...