Are you a carer?





Please watch my short film, which includes families and carers reading from the letters they sent me.






If you would like to share your story or make a persoanl pledge to make a difference please email tommy.whitelaw@alliance-scotland.org.uk

Saturday, 25 March 2017

Mothers Day My mum I just miss you so -

Hi


I just miss my mum so much .I have been pottering around the house all morning as I do most weekends and evenings and ther is a feeling of great emptiness in this house and in my heart 

I don't miss dementia - dementia does not define my mum.My mum was magnificent kind and caring but there is no escape from all dementia brought to mums life and mine as a son to witness 

I miss both mum and Dad  ,over twenty years ago I started a life touring the world and making great times and great mistakes and even from a distance shared the great times with my parents.I am absolutely grateful for the support,advice and help they gave to the mistakes and struggles I personally faced along the way. I was a lucky boy to have such parents 

Never imagining that 20 years later my mum would be diagnosed with dementia and I would become  a carer.Now there is a description that's sits slightly uneasy .people keep saying " you cared for your mum " that is only half the story .even with all mum faced she always cared for her son.on the days we where both struggling on the days I was falling apart .on my knees and broken,this wonderful mum could make it all better with a squeeze of my hand or the love from her eyes 

That's what mums and dads do no matter what they face they make it better for their children ,no mater how young or old their children are ,no matter how far or close they May be 

And I miss that so much.I miss the support ,kindness that squeeze of the hand the love and care in mums eyes 

You took much away dementia but never the love and care a mother had for her children and for all she met and knew 

I just  miss you mum 


                                                   



                                                                 Sister 

                              



       

                                                             love - story

                                        



                                                            Love story 

                                              




                                                                         Mother -

            
                                               



                                                                     Friend 

                                            





                              


Guest Post - Caring For Mum by Allison Tait


This Guest Blog comes from my Friend Allison  Tait  @Allisonrtait 

Let's listen to  what Alison has to say....

            Caring For Mum 


 

After work we used to pop into Mum on the way home for a chat. However over the last few years Mum has become  more frail. Mum began to fall and lost the ability to write, or remember a PIN number for bank cards but was keen to live in her home she had shared with dad and all it's memories. 


One day I found Mum lying on the floor, her arm had caught on the bed support that helps you get out of bed and was badly damaged. She had a urine infection which probably contributed to the fall and which then lead to delirium. 


The effects were devastating and changed not just Mums life but ours too. She spent the next four months recovering in hospital but never back to where she had been, no longer able to walk or even stand and with the dementia now advanced so she was not able to live on her own.  Difficult conversations with medical staff about not resuscitating were had, and luckily we knew Mums wishes but it is still hard to have that conversation.


  Early on we decided to try and bring Mum home to live with us. My husband was the first to say look let's do this, he grew up with grandparents living in the family home so that wasn't an issue and without his full support it would have been too hard. Mum is now extremely frail with advanced dementia and we had a conversation with her General Practitioner to share mum’s wishes for the future. 


The anticipatory care plan has to be shared with the health care professionals, out of hours, ambulance, carers etc. This is enabling us to care forMum at home and to make her end of life care asdignified as can be amongst her family in a home environment.

 

Fortunately we had a spare room but it wasn't entirely suitable and the occupational therapist was invaluable in arranging equipment to make the room work. Lots of factors are involved when bringing a relative to live with you. We have a care package to help us: 4 times a day with 2 carers. We just could not manage to continue to work and care for Mum without reliable care. 


My advice to anyone in similar situations is try and get as organised as you can. Simple things, think it all out like who is collecting medication etc. Friends have said they could not manage such intrusion into their home but our view is that it is a very minor inconvenience and you have to cross that bridge if it happens. You don't always know your strength and this is our family

 

The day starts early giving Mum breakfast before the carers come for their first visit, keeping up to date with laundry, all before heading out to work. Practical stuff. It is important to keep on top of supplies that mum needs ranging from disposable napkins to specific food that Mum can swallow. Our kids are away from home but are back regularly and we have encouraged them to still have friends to stay, everyone pops their heads round the door to say hello and a wee chat. 


Occasionally we see glimpses of the Mum we remember but this is happening less and less and now we are really looking for the good moments. Dad and Mum were married for over 50 years, they met when Mum was 15 and started dating when 18 years. They had a lifetime of memories but she seems to have lost them now and never mentions him and doesn't recognise photos of him anymore. 


Hallucinations are common and are difficult for us all as they trouble her greatly but seem to occur less often now she is at home. Mum adores our dog and she pets her when she becomes anxious. Mum will often be forthright in her views on a matter to us but never has anything but kindness to the dog. 

 

We don't know the future. It could be that we are not always able to care for Mum at home as a result of our own health etc and at some point we may need to look at a nursing home for Mum and I think anyone who cares for someone at home knows this is always a possibility.   


Mums’ General Practitioner is great and the district nurses are supportive when we need their services.There are situations where pain has become an issue and a nurse from the palliative care team has become involved to help us understand how we know when someone with dementia is in pain. It's hard to read Mum for symptoms as someone with dementia loosesthe ability to articulate how they feel.  You just can't assume if they appear well that they are not in pain. 


There are some subtle changes with Mum now more confused and anxious. It's hard to recognise them and you need to know that person very well.  Would we recognise delirium again? I can't say with confidence we will but we are aware that Mum is at increased risk of it occurring again. 

 

The benefits to having Mum living with us may not be shared by everybody and it may be hard looking at us to understand but there is huge comfort having Mum live with us; it's right for our family.  The challenges are greater than anything we have ever undertaken. 



Watching someone you love fade away was always going to be difficult, we might have run marathons in the past and climbed multiple Munro’s but being a daughter and a carer in these circumstances is something much bigger on a 24/7 basis especially when you open your eye's 


Allison  Tait 


I love this picture of Mum she would be on her friends boat who did fishing on her way to Tiree to help with the harvest of other friends. 



Betty loved doing that in her hols. 


Allison  

 


Thursday, 23 March 2017

Read our April Newsletter HERE

New member of the DCV Team

Hi,

I’m William Griffiths, the newest member of the DCV Team. I started three weeks ago, and have been finding my feet with the various projects the ALLIANCE run. I like working with DCV as it’s a great programme and all the days are different from one another. I will be supporting the team’s research work, blog, social media output and writing newsletters.

I attended Tommy’s talk at New College Lanarkshire and was touched by Tommy’s story and how he inspired the audience and highlighted the importance of caring in the health and social care professions.

This month I have written the newsletter for the first time. I hope you enjoy it.

You can read my bio here.

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ALLIANCE Director Irene Oldfather speaks at SPSO event

ALLIANCE Director, Irene Oldfather, spoke at the launch of the SPSO’s latest report ‘Informed Consent: Learning from Complaints’ on the 2ndMarch. The launch event, held in the Scottish Parliament, highlighted cases of inadequate consent procedures in Scottish hospitals and explored the context and reasons for consent not being properly obtained.

Irene spoke about failures of consent from the point of view of service users, especially situations when a person with reduced capacity may have difficulty, but all options should be explored. She highlighted the importance of consulting with the next of kin or welfare attorney of a person with dementia to discuss the person’s treatment and options of care.

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She argued that the report went right to the heart of a rights based approach to health and wellbeing. Giving or refusing consent to medical treatment is an essential component of the right to autonomy, and is a key human right. Two people with exactly the same illness might make different choices about their treatment depending on what matters to them. This report can help ensure that staff, families and carers all understand the importance of consent in medical procedures.

EESC Plenary Session 22ndand 23rdFebruary

ALLIANCE Director, Irene Oldfather attended the European Economic and Social Committee (EESC) Plenary Session in Brussels on the 22nd and 23rd February. There she participated in several events and discussions. Including a debate about the implications of Brexit for Scotland, Northern Ireland and London with the Young Professionals in Foreign Policy group, and a discussion of the future makeup of the EESC Committee.

As the representative for Third Sector organisations in Scotland at the EESC, Irene will be writing a newsletter of her work in Brussels for the SCVO. You can also read her report from the Plenary Session here.

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Dementia Carer Voices visits Northern Ireland

Project Engagement Lead Tommy Whitelaw was honoured to speak at the Nursing and Midwifery Conference in Northern Ireland and the Alzheimer’s Society Northern Ireland annual conference on the 8th March.

One of the audience members at the Nursing and Midwifery Conference drew a sketch of Tommy which we felt captures the ‘You Can Make a Difference’ campaign.

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The NHS WM Leadership Awards and a Poem by Dreadlock Alien

On Tuesday February 28th, our Project Engagement Lead, Tommy, was honoured to give the keynote address at the NHS West Midlands Leadership Academy Recognition Awards.

It was an inspiring event and wonderful to hear of the dedication, passion and stories from all the nominees and winners. Many thanks to Suzanne Harris Director of the WM Academy and all the team for the kind invite.

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The event was hosted by ‘Dreadlock Alien’ from the West Midlands, a wandering wordsmith and poet, who brought together the story of the people and day.

After Tommy had left the stage ‘Dreadlock Alien’ presented him with this moving poem that he has written while Tommy was speaking.

This poem captured so many of the things important to Dementia Carer Voices and the work we do.



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New College Lanarkshire Pledges to Make a Difference

Massive thanks to Kate Mackay, Lecturer, Clare Flynn, Head of Faculty, Lynn Orr, Craig Ruxton and Margaret Henderson for kindly inviting Tommy to speak to Senior Health and Social Care Students who attend New Lanarkshire College, Coatbridge Campus.

Tommy was joined by Kerry Ritchie from our ALLIANCE Involvement Network, Gerry Power from People Powered Health and Wellbeing and our very own Dementia Carer Voices, William Griffiths. The day was truly inspiring and full of great people from all the staff and students, as we launched the New Lanarkshire College Pledge Tree.

We look forward to hearing how the staff and students get on with the wonderful pledges below. Thank you to all for a brilliant day from all the team at DCV and the ALLIANCE.

“I pledge to always ask people about their lives and family and what they like and mater to them the most.” – Courtney Haley

“I pledge to always ask people about their lives and love stories and what and who matters to them.” – Emma

“I pledge to always listen to someone’s love story.” – Karen Fowler

All the pledges can be viewed on our blog.

If you would like to contact us or make a pledge you can by emailing dementiacarervoices@alliance-scotland.org.uk or tweet us at @DementiaCarerVo

Older People in Acute Care Improvement Programme Delirium Video Links

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Wednesday 15th March marked World Delirium Day. In order to raise awareness and knowledge about delirium the Older People’s Acute Care team has created a series of three videos to complement existing work on delirium care.

The videos could be used in a variety of ways to continue to raise awareness of the importance of listening to family members and to further engage a range of partners. The videos highlight three individual stories told by women of their mothers’ experience of delirium.

In addition, key messages from all three stories are reflected in separate brief video clips focused on First Signs, Causes, Experiencing Delirium and Help & Reassurance. These shorter segments could be used for teaching sessions, to generate discussion as part of presentations and at conferences and exhibitions to match the needs of individual audiences.

All these videos can be viewed on our blog here.

Missing Me by Tracey Shorthouse

This month Tracey Shorthouse contributed a poem called ‘Missing Me’. You can follow Tracey`s story via @TraceyShorty28 and find out more over on her blog.

Please read the poem here.

Future DCV events

Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” pageover on our blog.

SAVE THE DATE: What matters to you day 2017

‘What matters to you? day is being held on 6 June 2017, please save the date and plan now for how you might join in on the day.

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The aim this year is not only to encourage and support more meaningful conversations, but also to focus on the action that needs to happen in response to these conversations to deliver the care and support people really need and want.

 

Dementia Carer Voices’, Tommy Whitelaw, represents @ALLIANCEScot on the “What matters to you” steering group and has been working with carers and people with long term conditions to find out what matters to them. Take a look at our “What matters to you” case studies and podcasts.

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We know from experience and evidence that the effect of focusing on what really matters to people can lead to improvements in the quality and effectiveness of what we do.  Having a better understanding of what is important to people also helps develop relationships that provide the support and help people need to achieve optimal health and wellbeing.

Last year, ‘What matters to you?’ day had more than 520 health and social care teams across Scotland making a special effort to have more person-centred conversations with the people they work with. In addition to this, more than 100 teams from 13 countries joined our Scottish initiative. You can read more about it in our ‘What matters to you?’ day 2016 report at: http://www.whatmatterstoyou.scot

‘What matters to you?’ day is being supported by the Cabinet Secretary for Health and Wellbeing, the Minister for Public Health and Sport and the Minister for Mental Health and Wellbeing. They will be getting involved on the day as well as sharing messages of encouragement and good practice in the run-up to 6 June.

The Scottish Government and Healthcare Improvement Scotland’s person-centred health and care team will also be supporting health and social care organisations practically to participate in the day by providing advice and resources through the website at www.whatmatterstoyou.scot

To ask questions or find out more, please contact the person-centred health and care team at hcis.personcentredscot@nhs.net


Wednesday, 22 March 2017

My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “No – one ever asked >” highlighted the transformational impact that listening, kindness and understanding made to his journey as a carer, and the importance of looking beyond a person’s diagnosis to engage with them as an individual.

If you would like to access further information about the Collaborative and to view presentations from the latest learning session, please click here.


In 2011 Tommy produced a short film in conjunction with Alzheimer Scotland. The video, which was later shown at the Scottish Parliament, includes families and carers reading from the letters they sent him during his dementia awareness tour of Scotland’s towns and cities. To view the FILM http://tv.enterprisescreen.co.uk/watch?v=347



 Putting the Care into Dementia Care

This training film is a collaboration between Health watch Essex, staff at Broomfield Hospital and Dementia Carer Voices







Interview for NHS Greater Glasgow and Clyde

 Patients’ Stories Library

The NHS Greater Glasgow & Clyde's Patients' Stories Library for Hospital Staff aims to use patients’ and carers’ experiences to look at how acute services can be improved.
Tommy shared his story with frontline staff working across NHS Greater Glasgow and Clyde, including the Ward staff that cared for his mother at the Southern General hospital. His film interview was also shown across a number of NHSGGC hospital sites during Carers Week 2013 to help raise awareness amongst staff about the importance of supporting carers in contributing to delivering person centred care. http://www.youtube.com/watch?v=36_Y_3y0yXM

Dementia Carer Voices where proud to tour with Healthwatch across Essex back in October 2015.  You can view the blog post and pledges from the few days here. 
Thanks to every one of you who attended each event and the @HWEssex team for arranging the few days.  Below is a new film about the tour with some of the Nurses who attended sharing their pledges made to the Make a Difference Campaign each day. 
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 It’s Ok to Ask for Help!

The It’s Ok to Ask DVD produced by NHS Greater Glasgow & Clyde, Glasgow City Council, The Alliance and Alzheimer Scotland uses carers’ experiences to highlight the benefits of using carer support services in Glasgow, and encourages people to ask for help. Tommy Whitelaw, Alliance Scotland, shares experiences of looking after a partner, parent, relative, friend or neighbour with dementia. Other carers tell us about help they get from support services in Glasgow. FILM http://youtu.be/u2BAxSCcic0




'On the Couch' with Tommy Whitelaw filmed interview NHS Scotland Conference June 2015





Speaking Care Inspectorate Seminar 

Published on 7 Nov 2013
Tommy recently spoke to our inspection team to talk about his experiences of caring for his mum Joan Whitelaw, who died last year after living with dementia for several years. He spoke about the difficulties he had getting the right services for his mum at the right time and how this led him to take his dementia awareness campaign "On Tour"




















National Dementia Awareness Week 2014 (England) – NHS Employers Nursing Times - my Filmed interview

To mark National Dementia Awareness Week which runs from 18 to 24 May, NHS Employers the Nursing Times are working with the Alzheimer’s Society to promote resources available to NHS organisations and the NHS workforce.
As part of this activity, they have specially commissioned a short video of an interview with Dementia Carer Voices’ very own Tommy Whitelaw.

You can get more information here on NHS Employers 
This video was made to mark this year’s Dementia Awareness week 





You can click on the image Below to preview the  trailer for a longer film which will be launched on 12th December in NHS Ayrshire and Arran University Hospital Ayr lecture theatre.
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Full version of Make a difference with the staff nhsaaa 
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