Mary Stewart, my story......(Part of )

Hi  

My campaign is built on life stories, this has brought me in to contact with many amazing people ,here is one of them Mary Stewart, with  great respect for allowing me to share

   I am not sure how much of my story you would like to hear, as it is rather a long story, from when I first suspected Mum had Alzheimers to when I had the job of being her fulltime carer (a job I never applied for, was interviewed for or even needed a reference for). After all, its my Mum I am talking about and I wanted to look after her. Was I prepared for the journey I was about to embark on, in a word NO. Every single day was different, her needs were changing almost daily, thats when I really started to cherish the happier days with her. I loved to hear her laugh and that was something she did not do as much as she used to. I was her carer for 5yrs, her needs had changed quite dramatically in that time, she had sleepless nights, sometimes I would just go in to bed beside her and hold her, sometimes she'd sleep but when she didnt I would just lay there holding her as she was content, at least that way I could get some rest too. Some days she was very aggresive; it was difficult to distract her at these times to redirect her to somewhere happier. It was a full time unpaid job, I have no regrets about caring for her, shes my Mum, love her so much. One day, I gave in and agreed she should be in full time residential care, deep down I knew there was every possibility that day would come. For over a year people in authority had wanted me to allow for her to be in residential care. The hardest day for me was taking her to her new 'home', I felt like I was giving her way, like a mother forced to give her child up for adoption. The pain inside was hurting, the guilt I felt was so so bad. Her new home was newly built, she had a nice room and everything in it was shiny and new, it was lovely. But, I just kept thinking I promised my Dad I would look after her just weeks before he died. I felt I had let my Mum down...................I went home on that Friday afternoon and cried and cried and cried, I cried for days. I was at home alone wondering where do I go from here, didnt know where to start. Being a full time carer at home changes the person you really are, as you are so wrapped up in the role as a carer, there is no time to be yourself. Being a carer had an impact on my health and certainly my confidence..................................

.three years on from placing Mum in her new 'home' I am still learning to be me again and am at last 'finding my feet'.

Tommy - lets just say this the condensed version of My Story - I have a much longer full story of my time as a carer - one day I will sort it all into order as its all a bit of a muddle at the moment.

Mary

Tommyontour more talks and meetings added today

Hi

the campaign to rasie awanress continues at pace

 I am privileged and honored to say I have many more talks and opportunities to raise awareness coming in every day, in my quest to raise awareness  and collect life stories to help bring more understanding, I look forward to the opportunities below to speak about my life caring for my mum ,the letters I receive and the people I meet .our lives in our words

 August 22^nd

Deputy first minister visits my mum at home

August 24^th

Met with dementia consultants

Con Gillespie Sandra shields NHS gg&c 

Augusts 27^th

Attended launch of BletherBox dementia on-line forum in Perth

August 28^th

Met with Cllr Kerr at city chambers to discuss my motion and engagement

August 30^th

Meeting with Sw Glasgow adult services lead at home  

 August 31^st

   Guest speaker social work Glasgow service mangers meeting

September Social care ideas factory launch of Trade School Glasgow

September 6^th Attending Glasgow north east carers to speak to group

September 7^th Meeting and speaking Glasgow south west carers parents group
september 12th speaking to helath s/care students reid Kerr college

September 13^th Meeting and speaking at Lockerbie carers group
Septemver 17th meeting Jackie Baillie Shadow Health secretaty  

September 18^th Meeting and speaking at Bailleston community care, carers group

Wednesday 26th September 2012Speaking to NHS staff Via NHS gg&C the Lecture Theatre in the Royal Alexandra Hospital. Speaking to 100 Doctors /nurses

October 3rd  Springburn Residential Home speaking to staff and familes

October 5^th Speaking at NHS gg&c Event beardmore hotel to around150 doctors and nurses

October 8th     Kirkintilloch Baptist Church (East Dunbartonshire council)

 October 12th   Bearsden Baptist Church (east Dunbartonshire council)

October 18^th carers link dementia support group

october speaking at the SNP Conference

march 2013  speaking at SDRCN  conference
November 28th  Angus carers (PRTFC)
I also have the following projects

Motion Glasgow city council

Dementia through art project

Caledonian university nursing and social care .speaking to students and working on my letters   

All of the above done on a voluntary basis

Tommy

Earlier Today, speaking to SW service mangers

Hi

Well I have a few hors respite cover this morning and I will be heading over to social work Glasgow head office to speak at their service managers meeting

All the people attending manage council .social work run residential care homes, thanks to Ann and Stephen for setting this up and I look forward to speaking about caring for my mum, the letters,I receive and the people I meet on my tour .i will also be handing out reports on my tour as with all I do this will be on a voluntary basis and to help if I can raise awareness and understanding on dementia and caring

my awarness campaign continues ,thank you

Tommy

With great thanks to Angie for chairing and to  all who attended earlier today and for allowing me to talk about caring for my mum, the letters I receive and the families I meet on my tour I felt it went ok  and  look forward to meeting some of those who attended at future talks mentioned today after my talk and for the feedback thank you

Thank you

Tommy

 

Positive meeting this afternoon with SW Glasgow lead

Hi

I had a meeting with Ann, social work Glasgow Adult Services at home this afternoon It felt quite positive. We discussed many things including carer engagement and how we might tie some of the awareness work and correspondence I receive in with the work they do and beyond .We have met a few times  before in fact Ann was responsible for the SW report on some of my letters,I hope this leads to more involvement and some of the ideas we discussed come to fruition

Time will tell

Tommy  

One person, living two different lives,

Hi

 I had Linda from my local carer center over earlier today helping with some advice and to find a way to adapt to the big changes lately to my mums needs and mines as a son and carer. We had a conversation about me, that doesn’t happen to often. As son and carer my passion and desire is to care for my mum the  best I can and like most carers my well being is quite far down the list of priorities. So I will say this to anyone caring, take time for yourself, take time to allow yourself to be the person you when’re before caring .a lot easier said than done and I may not be the best example and certainly no role model but Linda is right, my life at home in every way is different from the person who goes out campaigning and raising awareness’ I am certainly of different confidence and being when I am out doing my talks ,at meeting or campaigning (even though I speak with honesty about my life as a carer ) I certainly feel taller and my shoulders are higher for 14 hours a week ,The Thomas at home is full of worry ,concern ,self doubt and loneliness and that takes its toll on our abilities to care and keep some of the person you used to be. my mission now personally is to bring the two different me’s closer together, hold on to the best bits of both and lose the bits that weigh heavy on my shoulders

Tommy     

Today meeting Sw Adult services lead and a visit from Linda from my local carer’s center

 HI

I will be meeting Ann Cumming from SW Glasgow  this afternoon to discuss my campaign and some ideas .also have to say I feel positive about the work  and involvement SW Glasgow has given my letters ,campaign ,thoughts and opinions and for me that can only be a good thing ,some others should follow their lead. what it all means I am unsure still but being involved in discussions is important to me and for all who support and contact me and it’s a great that they are giving the letters and carers the respect they deserve

Before that Linda from my local carer center Pollock is dropping in to help me with a few forms and get a wee update on life at home and the changes we are facing at the moment , two visitors in one day that a 2012 record

Tommy

Out for a walk together,mum and me

Out for a walk  together ...

Well we managed out for half an hour earlier today never quite sat in the park, but we made it through the pathways and back .I can’t tell you how important it felt for us both to be out together and not just me running to the shops or on my awareness campaign.  Although when I do my talks or show my film my mum is the biggest part of the day even though she is home .it was tough today and as expected exhausting for my mum and don’t know if we will be able to repeat this again, I truly don’t think so, but glad we did today, the feeling of freedom and was lovely, As a son I have to weigh up how much this Took out of my mum and if it’s the right thing to do. But we have challenged dementia for the last 5 years and we challenged it again today and won, and every day we win at this stage is a glorious feeling

Tommy

Taking my mum for one last walk to the park,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

I was outside last night bringing in the washing and it was cold , if felt quite wintery in fact .As I walked up to put the washing in the cupboard all I could think of was  how my mum being so frail and where we are in our journey that I need to get her out of the room ,the bed ,the house for one last time. Our life now at home is spent upstairs, my mums room faces mine and that’s where we spend our days .I go down stairs to cook and do washings and have only sat in our sitting room a handful of times over the well nearly a year, and that’s only if we have someone visit which happens very rarely and only to discuss my mums health really. I got to thinking how much our world has shrunk. Shrunk too two rooms. Apart from my respite hours that I use to raise awareness not only have we been confined to our house for months but its smaller than that we are confined to our rooms, with me popping in and both countless time over a day, then up and down the stairs with drinks food and so on and as much as my mum is very weak and whatever the definition of end of life care is, months, years  we are running of time and chances for my mum to see the Sun, the Sky the outside world ,so my mission this week is to get my mum dressed and push that wheelchair to the park along the road and sit and watch the world go by and lock that memory firmly in my mind .this might take a lot out of my mum, but I feel its important, it feels very important to me right now ,everything is against us,health,weather, oppertunities but we have to take it when it comes even if its for one last time

Tommy  

On Friday Speaking to Social Work Glasgow service mangers

Hi

With thanks to social work Glasgow ,Stephen &Ann for inviting me to speak at their service managers meeting this Friday .I look forward to speaking about caring for my mum ,showing my film and the letters I receive to people who work in the frontline of care across the City

Tommy

positive Meeting today with Cllr Kerr Social Care Executive Glasgow City Council

Hi

Well I have a couple of hours cover today and I will be popping over to the City Chambers to meet with Cllr Kerr Social Care Executive Glasgow City Council .we have met a few times before and I have sent him some carer engagement ideas and hope we can discuss ways of working together the council, my campaign and join up a lot of the work I do and plans I have ,I hope something comes of it ,Glasgow City Council are also looking for a carer to work alongside them and I threw my name into the hat ,not expecting to be used but that will be shame after the work I put in every week and correspondence I receive ,lets see what comes of today’s meeting

Tommy

Hi

Well I had what I feel was a positive meeting with Cllr Kerr as we have before ,I discussed some of my ideas for carer engagement and my future plans and hope we can join some of them together .I do  understand the requests he must get with  his post at the Council but hope he can find a way to work with me ,the letters I receive and some of my future plans. Hopefully he will get back to me in a few weeks

Tommy   

Today at BletherBox dementia &caring on-line forum launch

Hi

Well I am just back from Perth after the launch of the BletherBox dementia &caring on-line forum and its was lovely to be  invited and meet other like minded people Also bumped into a few I knew and a couple of people I met on my tour of Scottish towns and cities including a gentleman I met when I stopped of at Ninewells hospital in Dundee to do a short talk about a year ago .so back home safe and sound and well done to Leigh-Ann for the launch today and I wish them good luck

You can get more details below and a rare photo of me smiling, (with Liegh-Ann not known for being a bundle of joy must have been the fresh country air

www.bletherbox.org.uk  @bletherbox1   www.sdcrn.org.uk

tommy

today Attending launch of BletherBox on-line dementia community and other plans for this week

Good Moring  

I have a busy week this week ,as has been for the last months,my hours of cover are I hope being put to good use as I try to raise awareness on dementia and caring

Monday

Attending the launch of the BletherBox dementia on-line community

Tuesday

Meeting councilor Kerr lead on social care Glasgow city council

Thursday

Meeting Ann Cumming adult services social work Glasgow

Friday

Speaking to social work Glasgow service mangers

All other hours caring for my wonderful wee mum

Tommy

If my mum could remember my dad for a day, it would take most of this pain away

Hi 

 It’s a Sunday and I have been sitting with my mum in her room keeping her company and sometimes during the quieter moments away from all that dementia and caring brings especially at this stage of my mums journey I often think of my dad ,I now accept because I have too in order to keep going that my mum has lost her long and most of her short term memory ,and that I am her son ,in may ways  I have to accept that but would give to world for my mum to remember my dad even for just a day .I feel selfish when I remember him, the man she met ,fell in love with ,her only ever boyfriend she had and the man she was married to for 44 years and nursed in his dying days ,I would give anything for her to remember him like I do even for a day even for an hour

My mum and dad how lucky I am to be their son

Tommy

Dementia &Caring Trying to raise awareness in its truest form ,your words can help

Hi

For the last 5 years I have been a full time carer for my mum Joan who has vascular dementia and for the last year I have been raising awareness doing talks based on caring for my mum ,the letters and e mails people send describing their experiences, I do this without funding and in my 14 hours respite cover I get a week .This has resulted in some ,what I believe to unique opportunities to help raise awareness and bring a better understanding on how we live to decision makers ,the care sector and the wider public. I hope you can add to the hundreds of life stories I have already received to  help with some of the projects below, your thoughts and opinions can help others its not a protest ,its not a petition, its our lives in our words  

You can add you’re story by e mail at tommy@i-woz-there.com

Motion Glasgow city council

Dementia through art project

Paper on life stories with a leading university (to be published and shared)

Reports to deputy first minister every 3 months

Tour of talks AND engagement with NHS gg&c

You never know it might be your story that makes people think and bring more understanding

Tommy

Speaking at the SNP conference this October 2012

Hi

In my quest to raise awareness on dementia and Caring I try at every opportunity during my 14 hours cover each week to raise awarerness. part of that includes trying to, make contact with Msps, MPs and local authorities, some get back some ignore ,anyway I am happy to say I have had a reply re my request to speak at the SNP conference about caring for my mum, the letters I receive and the people I meet when out raising awareness ,so I say thank you for this opportunity to speak to some of the decision makers and I hope a few attend the room I will be speaking in, mid October up in Perth. I hope some of the others I have asked will allow me the privilege and opportunity to speak at their events/conferences as a son and full time carer with openness and honesty and on behalf of the other carers like me across the country

Tommy    

My wee mum doing so much better since coming home

Good Evening

Well my wee mum has been home for a week now since the shock of her seizure a few weeks back and her week in hospital and the change is quite remarkable ,she is so much brighter ,a bit stronger and her smile is wider and more often, along with her awareness. something good may have come from being in hospital and getting a proper check over instead of a glance over blinded to often  by the fact she has dementia ,all her medication has been changed ,something I try my hardest to be vocal about but often without being heard. Its amazing to hear my mum say the odd word over the day ,to hear her voice something I thought I might be on the verge of never hearing again and that smile is back a smile that says  more than words can sometimes and the squeeze of my hand with more strength than has been for a while.I know this can change as quickly as it came but we cherish every great moment in a head on battle with the difficult ones.This son is as happy son  tonight as he has been in a long time and its all in a smile ,a squeeze of the hand and a voice however little its is over a day returned ,its magic pure magic with she is facing she still has the ability to bring magic to our lives .she is stronger than me and I thank her for that

Tommy   

Positive Meeting yesterday with NHS gg&c Dementia Nurse Consultants to discuss future talks and involvement

 Hi

I have a few hours cover today  and I will be meeting Con Gillespie and Sandra Shields both nurse consultants on dementia for NHS gg&c to discuss future talks and involvement .I first met Con at a presentation talk I was invited to do for department heads at gg&c NHS  a few months back and we are looking at ways we can work together and involve my letters and campaign in some of the nursing training. I will also be speaking at an Event for acute services Con has coming up in October at the royal Alexandria Hospital lecture theatre As a carer I am grateful for the chance to be involved in future projects and talks and look forward to speaking about caring for my mum, the letters I receive and people I meet on my tour

 as with all i do ,i do this as a son ,carer and on a voluntary capacity during my 14 hours cover per week

Tommy

With great thanks to Con and Sandra, the meeting today was very positive and as a son caring for my mum I am greatly encouraged by some of the discussion today and feel inspired by how willing they are to listen discus and involve .i left the meeting feeling very positive and impress by how much time and effort they are putting into the involvement of families and carers like me .i hope my personal experience caring for my mum and the letters and correspondence I receive can help and be part of all the other work they do and are planning to do ,today felt like a good day for carers and families like mine and for the amazing families who send me life stories to help others  

Tommy

 

motion Glasgow City Council, can you help

Hi  

Back in February I took letters I receive and reports to Glasgow City Council and had a cross party motion passed At the end of August /September the cross party group will start work on all below I will be taking more thoughts and opinions to represent carers and families like mine ,I hope you can help me make this all it can be my sending me any thoughts and opinions  you may have in order to help others have and get the best help available

You can e mail me direct at tommy@i-woz-there.com

Please don’t let this opportunity go to waste please get involved, if you want to know why its important come and spend a day with me after 5 years of caring for a mum suffering with dementia and me as a son suffering to witness

Your thoughts and opinions can help others,collecting life stories raising awareness Tommyontour

MOTION

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

Thank you

Tommy

Son and carer for my mum

Carr Gomm my great friends ,a wee thank you

Hi

I popped into see all the gang who work at Carr Gomm yesterday (they have an office at the top of my street ) to thank them for the great support they have given my campaign and I over the last year .I first met them just over a year ago when I asked if I could put  a Tommyontour poster in their window and that was the start of a great friendship. Irene ,Christine and all the team have been allowing me to use their office for printing ,photocopying all the things I don’t have in my house and need to raise awareness but more than that friendship , I have had great emotional support from Irene ,I have laughed, cried been angry and sad and always been welcomed  with words of advice and support ,support that is much needed caring for someone you love ,even though they don’t supply services to me as I do most of my mums care alone ,you would think they did with all they have done to help me personally ,everyone should walk through a door one and meet people like Irene and her team ,I am glad I did .and appreciate all they have done for this son ,carer and awareness campaigner  

Tommy

Carr Gomm

Carr Gomm is a not-for-profit organization and we work throughout Scotland.  Our Values and Person Centered approach is extremely important to all of us and we think about it every day of our working lives. We believe that all people are the same and they want the same basic things in life.  Things like a roof over our heads, being respected, feeling valued and having meaningful relationships. We work with people for lots of different reasons.  It might be that they are older and need support to remain at home or they have addiction or mental health difficulties or they need support because they have a spinal injury or brain injury.

www.carrgomm.org

A wee update on life at home,,,,,,,,,,,

Hi

Well my wee mum has been home since Thursday, after 5 days in hospital the shock of my mums seizure is a constant in my mind just now .After 5 years caring for my mum part of me thought or tries to prepare for the worst last week has proven that’s false thinking and unachievable in many ways I don’t have the words to describe my feelings and fears, but I will say this i need my mum as much if not more than  she needs me. I was lost in this house last week without my mum its, was painful and had taken the loneliness we share and feel to an almost impossible level but she is home and amazingly doing ever so well in fact I see an improvement that is quite hard to believe ,that in itself poses more questions than answers .I try with all my heart to give my mum the best care possible and as much I don’t expect anyone to have the same love or desire to care for her I do expect them keep an professional eye on all her health needs and try and see past the dementia so I ask myself why is my mum doing better ,why is she only on 5 pills a day now and not the 14 she was on before being admitted ,is this another case of dementia blinding the vision of other health opinions ,I have many questions  to ask and I hope to get the answers that satisfy my heart ,mind and soul

My we mum ,its so good to have her home, be her son, and this house is more like a home again

Tommy    

Looking for more opportunities to speak about caring for my mum and the letters I receive

Hi

 I have been doing quite a few awareness talks lately about caring for my mum, the letters I receive and people I have met on my tour  I hope if you read this and you have any events or work with carers you will consider inviting me, its all about awareness raising in its truest form and I have reports on my campaign I can share with all who attend all I ask is some help towards  my travel costs as I am a carer and a bit of notice so I can arrange appropriate cover for my wee mum

My passion is to care for my mum the best I can and raise awarerness on dementia and caring I hope you can help me meet others

 
My e mail is tommy@i-woz-there.com

Tommy

voluntary talks coming up

  
 August 24^th

   Meeting con Gillespie and Sandra Shields nurse consultants for dementia for NHS gg&c to discuss future talks and involvement  

    August 27^th

     Attending the launch of BletherBox Dementia community online forum   Perth

August 31^st

    Guest speaker social work Glasgow service mangers meeting   speaking at mid day

  September 3rd

Social care ideas factory launch of Trade School Glasgow  

  September 13th

     Lockerbie carers support group   10:30 AM I SPEAK need to get a train takes around 1hour 20

 September 26^th

    Guest speaker at NHSGG&C event Royal Alexandria Hospital  Time TBC

 October 5^th

    Guest speaker at NHSGG&C event beardmore hotel Clyde ban  time TBC

 October 8th   

     Kirkintilloch Baptist Church ( East Dunbartonshire council )  

 October 12th

         Bearsden Baptist Church ( east Dunbartonshire council )  

     October 18th

carers link dementia support group

Speaking at Nursing Practice Development Event, 5th October 2012

Hi

  

With great thanks to John Stuart from ggcnhs for inviting me to speak at their Nursing Practice Development Event, 5th October 2012 at the Beardmore Hotel .I met john when I was invited to do a presentation to department headS by Daniel Connelly from the NHS community engagement team  and I look forward to the chance to speak about caring for my mum ,the letters I receive and the people I meet

Thank you for involving a son and carer at this event

 

Nursing Practice Development Event

‘Sharing Stories and Best Practice’

Friday 5^th October 2012

Tommy

the reason I collect and believe in life stories ……………

I have been caring for my wee mum Joan for 5 years. Just over a year ago we nearly reached a crisis point as we struggled to cope and live,

I picked myself up best I could and decided to go out, raise awareness and try and find out how others lived and coped. It saddens me to say that most families face greater struggles than us , my campaign to collect life stories is based on my own experience on receiving a letter ,A letter that changed my life. In my previous life before dementia and caring I travelled all around the world with my job ,My long term girlfriend at the time also travelled with her job .for quite a few years my girlfriend kept trying to tell me that things had to change ,that we had to stop traveling and settle down, I had to grow up amongst other things, the more she tried to discuss this or shout or even in the most intimate of moments plead the less I heard ,I always seemed to be able to get out of talking about or discussing our future. One day as I arrived at my destination with my job I opened up my suitcase to find a letter. In that letter I read all the things my girlfriend had tried to tell me for many years ,for the first time I understood all the things she said and why we had to part My heart was broken ,but that letter told me more about my life than I ever knew before ,that why I collect letters and life stories to take to the powers that be ,I truly believe our life’s in our own words is  the best way to bring more help ,understanding and awareness. We as families and carers are best placed to describe how we live and feel we are the ones who can guide to a better future and care for all. To often I hear others speaking about dementia and caring and it bares no resemblance to how my mum the people I meet on my tour and I live and feel .A letter changed my life; our letters can change the lives of others

Please help a son and carer tell the story of living with and caring for a loved one, we have a Deputy First Minister who is listening and who I meet every three months to update on my campaign along with NHS heads who  are arranging talks based on our letters to help bring more understanding within the care sector

 Our letters have helped with reports by SW and motions at City Councils ,

Thank you  

Tommy

My hope to start a dementia & carer focus group ……..

Hi

I feel with the amount of correspondence I have received it would be great to start a National Dementia and carer focus group ,bringing together families who have experience of living with or caring for a loved one with Dementia .a group that can help tell the story of dementia and the letters I receive to work alongside government and local authorities to give open honest opinions ,thoughts and be involved in discussion with no relationship to fundraising or supplying services  .a group of volanteers with no outside interest or involvment other than dementia awareness and certainly not of protest or petition .I feel this is the best way to bring more awareness and understanding .A group set up to open the discussion with honesty ,experience and with openness there are amazing people out there ,it would be great to get you all in a room and see what we come up with that’s of good and of value and of help and from the heart and experience   

I hope I can find a way to make this work

i plan to write to people who have snet me letters this week

tommy

weekends and weekdays ,they are all the same to us …

Hi

I was up as bright and early this morning, never really slept since mum got out of hospital as still so worried about my mum having another seizure and a kind of state of high alert at the moment .I sat on the doorstep to get a bit of fresh air to clear my head and get ready for the day  ahead.Two young lads walked past after what seemed like a good Friday night out already planning the Saturday night ahead and full of the joy of youth ,and it just made me think about how we no longer separate weekdays or weekends ,they are just days now ,We wake up today hoping we get through it the best we can ,hoping my mum is the beat and most comfortable  she can be and that I am strong enough to give her the love and care she needs and deserves.We don’t have Monday morning blues or Saturday night highs anymore we have challenges and hurdles and they all become one but we still have joy, My mum can bring the best Saturday night feeling ever with a smile or just to know she is ok, so we may not have weekdays or weekends but we have each other and most times that’s enough to get us through the day

Tommy

Never slept a wink last night, worrying after the shock last week

good morning

Well my wee mum  got home from hospital yesterday and this house feels warm again ,last night was a wrestles one ,after walking in last week to find my mum struggling with all her levels dropping including sugar at zero when the ambulance arrived, I am unable to sleep ,in fact I sat on her recliner chair till about 4 am just watching her sleep .Mum is on new medication and although I have had support and reassurance from the hospital that the new medication (and cancelation of 5 tablets she was on) that she will be fine I cant get the image of my mum being so helpless last week out of my head .I have to check her and keep a wee diary for a couple of weeks 5 times a day but we agreed that home is best for my mum if I can do this ,so a few sleepless nights ahead I feel until I can feel assured she is ok

Tommy  

a plea from a son and carer please RT and share

hI  

Firstly its great to have my wee mum back home from hospital August 13^th was 5 years to the day that I became my mums carer to try my best to help her through all that dementia was to bring After 3 years as my mum struggled with dementia and other health issues ,I struggled as a son to bare witness and almost fell apart by her side .That’s when I started my campaign ,I wanted to find out how others coped and if it was me who could not  if it was me alone then someone could fix that and help ,so I started my campaign with a walk round Scottish Cities and towns to collect life stories with the promise that if anyone shared I would take them to decision makes and the care sector, A promise to date I have kept, meeting with our Deputy first minister several time since to discuss and hand over the letters I receive along with local Authorities and NHSand have now I believe good relationships with some good people who are listening to our  thoughts and opinions I have had motions raised at Glasgow and Edinburgh city councils very soon a cross party group will be formed at GCC  to  work on this motion and a report published by SW Glasgow  .I also have many talks lined at NHS events and I am working on ideas for a new Dementia Awarerness film, all of this I do voluntarily at my own cost and in my 14 hours cover per week ,but to take this to the next level I need more thoughts opinions and life stories .I firmly believe we are best placed to design ,advise and help guide a better future for all. Our lives in our words without guidance our experiences good or bad can help others who will face what we have faced ,so I hope if you read this you will help me take my awareness campaign to the next level and add to the hundreds of amazing people who have already shared their experiences in order to help others

You words will help with my new projects all based on awareness on dementia and caring

Motion Glasgow city council  

New awareness film based on life experiences

Dementia through art exhibition

Talks and reports in our words and experiences within the carer sector and to a wider public

I hope you can help this son and full time carer do his best to raise awareness you can e mail me direct at tommy@i-woz-there.com

Thank you

Tommy

Carer for mum

My wee mum is home, and it’s great to have her back

Hi

 Well my wee mum Joan is back home and I its great to have back in her house, she is doing well and has a wee smile back on her face lots of changes to my mums medication and our routines to try and figure out today ,but then that’s part of caring and has been a theme over the last 5 years .Its been a tough week firstly the shock of my mum taking so unwell so quickly and the worry that brings also I have been lost for the last week .sitting in this house worrying about my mum in hospital worrying is she ok ,does she understand and how do we adapt and move forward .I really did not know what to do with myself but she is home now  and we find a way to keep going ,adapt and do the best we can ,once again thank you to the ambulance staff last week and all at ward 25 for taking time to involve ,understand and care for my mum and the kind lovely people who have sent kind comments and wishes that helped ease the worry and chase the loneliness away ,thank you

So I leave you with a wee photo of my mum, my best pal, at home and I try and figure out all this new medication and a new routine, onwards and upwards

also a wee mention to my mums SW who has been a great help over the last 2 months with a few struggles we have faced

Tommy

My wee mum getting home tomorrow to her house and son

Hi

I have just had a chat with the consultant at the hospital  and we are looking to get my wee mum home today .we have lots to do to make this happen including getting my  mums GP ,District  nurses ,CPN and SW  all involved in an in tensed  package of home care for a few weeks to aid her recovery .(I do all my mums personal care at the moment with district nurses in once a week )My mum is on new medication now and I know her needs better than anyone so I feel if all is safe and ok medically then we should get her home my mums room has been ready ,revamped and organised to suit all her new needs over the last couple of days and her son misses her, so I hope we can all work together and make this happen once again thank you to the Ambulance crew for their swift action last week and for all on ward 25 for being ,understanding ,attentive and including me in all discussion on my mums condition ,needs and life .I am fully aware how much this has affected my mum and hope she can recover the best she can and even  more aware today where we are in my mums journey with dementia and other health matters ,I just want to get her home

Tommy

update coming home tomorrow now...........................i have to go to hospatial to learn a few wee things and have to make sure district nurses can attend our house  each day for a couple of weeks to check how mum is recovering

Speaking to carers at Carers Link East Dunbartonshire October 18th

Hi

With thanks to Alex, Norman and all at Carers Link East Dunbartonshire for inviting me back to update carers and families at their Dementia group meeting on October 18^th

Carers link have been great supporters of my awareness campaign and I was a guest speaker at their AGM last year .Alex and some group members also attended the Scottish Parliament Last November when I first  met with the Deputy First Minster to hand over life stories and show my film

I look forward to meeting them all again in October

you can get details on carers link at the link below

www.carerslink.org.uk

Tommy

My mum being in Hospital has left me lost, lonely and too much time to think

Hi

My wee mum has been in hospital now for 4 days and it feels like an eternity,I have not really recovered from the shock of walking in my mums room and finding her so distressed and unwell and it all happened so quickly .Deep inside I try and prepare myself for the inevitable that lye’s ahead at this stage of our journey caring for my mum, her battle with Dementia for 5 years and other health issues .Friday has shown me I am no where near prepared ,can we ever be prepared ? I have always had great respect  and love for both my parents and  this has been intensified during the last years caring for my mum and witnessing all she has faced and has in so many brought us closer than we have ever have been ,no matter how hard dementia tries to distance us .up to now we always talk about how much my mum needs me to care ,comfort and help her ,well I sit here today realizing how much I need her, I am lost in this house without her and worry all day how she is and how she is doing my mother may rely and need her son in order to be cared for at home ,this son certainly needs his wonderful mum

Tommy

Tommyontour more talks lined up ,,,,,,,,,,

 Hi

My wee Dementia and Caring awareness campaign continues please see below some more confirmed voluntary talks during my free hours ,thank you to all the people below for inviting me to their events and groups and for the amazing support

August 24^th

   Meeting con Gillespie and Sandra Shields nurse consultants for dementia for NHS gg&c to discuss future talks and involvement

August 27^th

     Attending the launch of BletherBox Dementia community online forum

     August 31^st

    Guest speaker social work Glasgow service mangers meeting

September 3rd
Social care ideas factory launch of Trade School Glasgow
September 13th

     Lockerbie carers support group

September 26^th

    Guest speaker at NHSGG&C event Royal Alexandria Hospital

October 5^th

    Guest speaker at NHSGG&C event beardmore hotel Clyde ban

October 8th   

     Kirkintilloch Baptist Church ( East Dunbartonshire council )

 October 12th

         Bearsden Baptist Church ( east Dunbartonshire council )

October 18th
carers link dementia supprort group

I also have the following projects to work on  

My Motion Passed Glasgow city council AND MY Dementia through Art Project Gartanvel royal hospital along with making Tommyontour 2 a new film

I also hope to re visit carer centers across Scotland to collect more life stories and update on my progress

The awareness campaign continues my blog, story and film has just reached 35,000 views and is on many sites across the world  including NHS Glasgow

I am proud to be my mum’s son and to raise awareness on dementia and caring

Tommy