ISSUE 35 | OCTOBER 2014
Carers UK members’ magazine NEWS • CAMPAIGNS • SUPPORT • LOCAL NETWORKS
Carers ‘open up’ for new campaign p10
In this issue...
Carers at breaking point
Hidden issue: depression special
We’re calling for action p4
Feature & expert advice p12
Creative writing competition results
We couldn’t do it without you
And the winner is... p8
Fundraising round-up p14
carersuk.org
Carers’ rights can feel like a maze.. COUNCIL TAX
HEALTH COSTS
CARE SERVICES
BENEFITS
PENSIONS
FLEXIBLE WORKING
ASSESSMENTS
SUPPORT SERVICES
We’re here to guide you Every year millions of pounds of carers’ benefits go unclaimed because carers are unaware of their rights. As well as campaigning for reform of these benefits, we’re here to make sure carers know exactly what help and support is available. We’ve just launched a new Looking after someone guide to bring this information bang up to date. Order yours today.
carersuk.org/carersrights
Welcome Our mission is to make life better for carers:
In this issue we’re digging deeper into the realities of caring for someone and looking to open up these experiences for recognition, understanding and support. I was thrilled to see so many responses to the creative writing competition – over 300 poems and short stories which capture just how human it is to look after the people we love, and which articulate wonderfully the range of experiences and emotions caring involves. (p8) It is disturbing that cuts to services and social security are making it more difficult for many to enjoy the positive aspects of caring – and it’s an outrage that as many as 6 in 10 carers have been pushed to breaking point, as indicated in our recent report (p4). Whatever our experience of caring, we can all get behind the carers’ campaign We Care. Don’t You? to send a clear message to the UK Government that they cannot ignore carers (p5). It’s also sobering to see that 6 in 10 carers have experienced depression because of their caring role. We take a closer look at this issue on p12, with practical tips on what we can do as carers to look after ourselves and each other. A key part of Carers UK’s approach is to bring carers together for support and understanding, whether through our online forum or the National
Carers Summit. The Summit certainly give us all a chance to speak out (I’m looking forward to reading the questions you prepare for the politicians!) but it’s also a chance to listen. I hope you’ll be able to join us in London on Thursday 13 November. As we approach our 50th anniversary next year, it is great to see so many members helping to build momentum, whether by raising valuable funds, supporting campaigns, or reaching out to other carers. On page 14 one of our online forum volunteers, Sue, explains how the support she has received from Carers UK has prompted her to leave a gift to us in her will. Quite simply, we can’t do what we do without this kind of support. As Chairman, I’d especially like to thank everyone who’s stepped forward for nomination as a Carers UK trustee. I hope you take the time to vote for the people you think will best represent you on the Board, working alongside me to shape the direction of Carers UK and ensure carers remain right at the heart of everything we do. – David Grayson, Chairman
We connect carers so noone has to care alone
We campaign together for lasting change
We innovate to find new ways to reach and support carers.
Join us To become a member of Carers UK T 020 7378 4997 E join@carersuk.org
Keep in touch Carers UK 20 Great Dover Street, London SE1 4LX T 020 7378 4999 E info@carersuk.org carersuk.org Carers Scotland T 0141 445 3070 | E info@carerscotland.org carerscotland.org
In this issue... 4–5
We give expert advice, information and support
12–13
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Carers Wales T 029 2081 1370 | E info@carerswales.org carerswales.org Carers Northern Ireland T 028 9043 9843 | E info@carersni.org carersni.org Carers UK Adviceline T 0808 808 7777 | E advice@carersuk.org
News & campaigns: We Care. Don’t You? For all the latest news visit carersuk.org
Help & advice: Depression
Connecting carers: Fundraising news
Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097). Registered office: 20 Great Dover Street, London, SE1 4LX. © Carers UK September 2014
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News & campaigns Carers at breaking point Our latest research shows carers across the UK being pushed to the brink – suffering exhaustion, physical and mental breakdown as we struggle to care for older or disabled loved ones The research sets out findings from our State of Caring Survey 2014, where over 5,200 carers told us if they have ever reached breaking point, the causes of crisis and what support would have prevented it. We found that: • 6 in 10 caring for an older, disabled or seriously ill loved one have reached breaking point • a quarter needed medical treatment as a result • 63% suffered depression and 79% reported anxiety We also found that one in nine carers has suffered a complete breakdown as a result of the strain of caring, meaning the person cared for had to be taken into hospital or emergency social care. Many carers cited insufficient support from health and social care services as leaving them isolated, burnt-out and unable to look after their own health, with a fifth of carers receiving no practical help at all. Devastating consequences The consequences of carers’ health breaking down can be devastating. We heard from carers who have collapsed and been admitted to hospital alongside the person they cared for, or who have been forced to refuse essential medical treatment for themselves because they cannot find replacement care to look after an older or disabled loved one. Others had been forced to quit their jobs when it all became too much, but have then had to resort to using up their savings or even selling their homes to cope financially. Urgent action needed On top of the personal impact of breakdown on carers and their families, the report highlights serious
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risks for overstretched health and social care services and our wider economy. As the number of families taking on caring responsibilities grows and the Government continues to make sharp cuts to social security, urgent action is needed to prevent an even greater number of carers pushed to breaking point. As part of our We Care. Don’t You? campaign, we are calling on all MPs to take action in Parliament to prevent carer breakdown. Find out more on page 5. What you said:
When you love someone you go on regardless. You have no choice, even when you know it is damaging your health and emotional wellbeing. Without help, I will soon get to the point where I cannot continue.
One day I couldn’t take any more, I was just crying uncontrollably and couldn’t function – my family stepped in to look after mum so I could just rest and pull myself together.
6 in 10
have reached breaking point
A quarter needed medical treatment
63%
suffered depression
79%
reported anxiety
Self-advocacy toolkit Carers Scotland has distilled learning from a small self-advocacy project in Glasgow to create a comprehensive ‘Speaking out’ guide for carers. With practical tips and guidance on communicating effectively, navigating ‘the system’ and handling complicated thoughts and feelings, the guide gives carers tools and techniques to speak up in every situation. carersuk.org/selfadvocacytoolkit
For all the latest news visit carersuk.org
Got a local story to share? Contact comms@carersuk.org
Carers tell Parliament: We Care. Don’t You? In September we delivered a letter from the UK’s carers to every MP in Parliament giving them a clear message: enough is enough The letter was signed by almost 6,000 carers – representing the 6,000 people each day who become carers – and states: ...Sometimes we feel like we cannot carry on. If we did stop caring, it would cost the Government £326 million a day – £119 billion a year. But carers can’t stop, we can’t go on strike and we can’t all travel to London to protest outside Downing Street. Our loved ones need us. The NHS and social care services would collapse without the care we provide… It calls on MPs to take action in Parliament to: • stop cutting carers’ support • end carers’ financial hardship • prevent carer breakdown As the letters were delivered to MPs a group of carers gathered outside Parliament to represent all those who have signed the letter. For more information visit carersuk.org/wecare
Strategic Partnerships We are delighted to receive a grant of £100,000 over two years from The Freemasons’ Grand Charity. “As a nation we are simply not aware that 6.5 million people in the UK are already acting as unpaid carers for their loved ones, or that this figure is certain to rise. Many carers struggle to cope financially, emotionally and physically with the strain of their responsibilities. I am therefore thrilled that we are able to contribute to Carers UK’s vital national advice and information service over the next two years.” Laura Chapman, Chief Executive of The Freemasons’ Grand Charity
@carersuk
/carersuk
Our Carers Manifesto: a vision of good support for carers As the UK general election in 2015 draws closer, our Carers Manifesto sets out a strong vision of what good support would mean for carers, and the policies we want every party to adopt to achieve it. The Manifesto draws on the views and experiences of thousands of carers to highlight the devastating impact that caring can have on carers’ health, finances, employment and social inclusion. As all political parties prepare for next year’s general election, our Manifesto sets out a clear vision of what good support means to carers, including fairer carers’ benefits, good quality and reliable care services, more rights at work and recognition in society. Our recommendations for the policies we want every party to adopt include: • alleviating carers’ financial hardship must be reinstated as a core priority of the National Carers Strategy • a sustainable settlement for social care and the NHS, setting out how the funding needed to tackle the existing gap between need and supply and to keep pace with growing demand will be delivered • a right to 5-10 days of paid care leave from paid work and a debate on longer term leave to enable working carers to care for ill or disabled loved ones • a commitment to ‘carer-proofing’ legislation and policy to ensure it does not negatively affect families’ ability to care For more information visit carersuk.org/manifesto
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News & campaigns Looking after someone? Know your rights This year’s Carers Rights Day is Friday 28 November, and we have loads of ways that organisations and individuals can take part and help carers get the advice and information they need.
Wendy raises a sweet £390 Wendy Turner held a cake sale at her office, raising a fantastic £195 for Carers UK... But she didn’t stop there – she asked her company to match her fundraising, making an even sweeter £390 to help us make life better for carers. Thanks to Wendy and all her sweet-toothed colleagues at Thompson Reuters in Nottingham!
How you can get involved As part of an organisation • run a benefits advice drop-in session • host an information stand for local carers in the community The theme this year is Looking after someone? Know your rights and will focus on reaching carers and helping them get the advice and information they need to know their rights and access practical support. Last year almost 1,000 organisations took part and ran awareness-raising events for carers. This year we want Carers Rights Day to be even bigger. We will also publish the new 2014/15 edition of our Carers Rights Guide – our essential guide to what your rights are as a carer, what financial and practical support is available and where to go for help. For more information and to sign up visit carersuk.org/carersrightsday
• invite a guest speaker to talk on a topic affecting carers • run a workshop to help carers learn about their rights As an individual • find out what’s happening at your local carers’ centre and bring a friend along who is also caring • raise awareness of carers’ rights by taking part in a social media campaign • think about your friends, family or colleagues who are caring and tell them where to go to find out about their rights
Collect with us this Carers Rights Day On Friday 28 November we are holding a series of bucket collections at train stations up and down the country. We need your help. If you’d like to volunteer as a collector, and help us raise money to make life better for carers email fundraising@carersuk.org or call 020 7378 4952.
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Running for Carers UK We have places available for the 2015 Virgin Money London Marathon. If you’d like to join us as we celebrate our 50th anniversary email fundraising@carersuk.org or call 020 7378 4952. Kate Hall from Nutricia, one of our partners, has challenged herself this year by running a marathon and a half for Carers UK. In August she ran the first ever Severn Bridge Half Marathon in Wales, and earlier this month took on the Bournemouth Marathon. Read about the trials and tribulations of training in her blog: carersuk.org/katehallblog. A huge thank you to Kate, and to the team who ran the scenic Royal Parks Half Marathon on Sunday 12 October to raise funds for Carers UK. We couldn’t do what we do without you!
For all the latest news visit carersuk.org
Got a local story to share? Contact comms@carersuk.org
How care quality affects carers The quality of health and care services has a huge impact on carers’ lives – affecting their ability to work, juggle other family responsibilities, look after their own health, and have lives of their own outside their caring role. Our new report explores how good and bad care affects carers, their families and society as a whole. A quarter of carers who had used services reported negative experiences of social care such as home care or respite care. 6 in 10 carers told us that poor care is stressful and means they worry all the time. On the other hand, good quality care is important to carers because it means dignity, respect and a better life for the person they look after (83%) and it gives them peace of mind (82%). Read the full report at carersukorg/report-care-quality
What you said:
A lack of coordination between professionals means I have to coordinate everything myself... this affects my health and energy levels
Good care workers can make my husband smile and allow him to feel safe and still in control. To find out what you can do if you are worried about care quality visit carersuk.org/cqc
Johnnie and Tiggy Walker speak out about caring Radio presenter Johnnie and his wife, writer and producer Tiggy, have become patrons for our 50th anniversary year, helping to raise awareness and funds to support carers throughout the UK. Speaking to the Daily Mail, the couple explained how Tiggy’s recent breast cancer treatment led to Johnnie taking on a caring role he had not expected, bringing back memories of the early days of their marriage, when Tiggy cared for Johnnie during his cancer treatment in 2003.
A letter to...
My daughter How all this affects you and your sister is always at the front of my mind. It breaks my heart to explain to you that we aren’t a normal family, and that we can’t do a lot of the things that your friends do. Some days daddy’s in so much pain he can’t get out of bed, or it hurts him too much to even sit in his wheelchair. When your sister told her friends that daddy couldn’t work because of his ‘poorly legs’ it made my heart melt. But you understand more and are more sensitive to daddy’s illness. I know it upsets you to see him suffering, and how guilty it makes you feel. You are only eight years old, and I wish you weren’t having to deal with this. Sometimes I’m not as patient with you and your sister as I want to be. I don’t always have the energy to give you all the attention that I wish I could. Your dad and I never expected our life to be like this, but we do the best we can – we don’t want to miss out on you growing up. Daddy tries his best to do things with you when he can, like listening to you read in the evenings. And we’re lucky to still have special moments together as a family. It can be really hard trying to be a mum, a wife and a carer at the same time, but I hope I don’t get it too wrong.
Photo: Bella West
Carers UK AGM and Summit You have a say in our future and a voice in the carers movement. Join us on Thursday 13 November for our AGM & Summit (10am–4pm, central London).
@carersuk
/carersuk
Got a letter to write? Send 250-300 words by email to comms@carersuk.org or by Freepost.
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Connecting carers
And the winner is... Award-winning poet Cheryl Moskowitz announces the results of the first Carers UK creative writing competition...
Judging this competition for Carers UK has been a privilege and an education. There were over 300 stories and poems submitted which I have carried around with me for the past few weeks, reading and re-reading, and I will continue to carry many of those in my head for a good while yet. ‘Things are not what they seem’ was the overwhelming message from almost all the entries – eloquent and powerful pleas not to judge situations on how they initially appear. The entries in both sections boast some startling writing and challenging material. We are invited to view the world of caring from a variety of real and imagined perspectives and consider afresh our definitions and expectations of love, relationships and responsibility. We are made to laugh and cry, and to think differently and deeply. The highly commended stories include The World of Caring, a whistle-stop journey through the day of a parent carer, highlighting the joys as well as the difficulties, and Wheelchair Candy and In My Dreams, which both beautifully depict those rare and blissful moments where a carer can let go of their caring responsibilities and simply exist as loving wife or proud mother.
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In the prize-winning categories, 3rd place goes to the highly original Starting Block that will leave you with a smile on your face and a whole new way of viewing autism. 2nd prize is awarded to Sir Galahad, an assured piece of writing which demonstrates what a powerful weapon love can be when pitted against trauma. Clouds wins first prize for its light and humorous touch, deceptively simple language, and an authentic depiction of the experience of dementia from the points of view of both the carer and the cared for. Choosing the poetry shortlist was difficult and it was ultimately impossible to select three individual prize-winners, so I have awarded joint prizes in all three places. As well as the prize-winning and highly commended, there is one poem I wish to single out for a special mention. A Young Carer is the poem I hoped I would find amongst the huge pile I was presented with - an important reminder of the ordinariness and the extraordinariness of the carer’s role. It is simple and to the point, poignant, witty, important and true. Everyone should read it.
Sharing 3rd place is the almost prayer-like By Candle and the perfectly formed Kindness. Both share precision and brevity and a careful choice of words, demanding to be read aloud, again and again. In 2nd place are Motherhood and Still Life. Motherhood is inspired by the photographs of Diane Arbus whose mother and child portraits were never comfortable - the poem contains beauty and wisdom and moves me in a new way each time I read it. Still Life is a well crafted portrait of a couple in care, a celebration of life and memories. And finally, in joint 1st place are two very different poems, equally excellent. Muesli has some of A Young Carer’s simplicity but also manages to conjure a real person, whole and fully fleshed out, despite the diminishing life it describes. Lovely. To understand Chipone is a poem that floated to the top of my list on each sifting. It is a poem that plays with language and evokes longing. Words and images rub up against one another in search of sense, just as people must when they undertake to be there for one another despite difficulty. We knock against one another, miss each other and struggle to regain hold.
For all the latest news visit carersuk.org
To read more of these poems and short stories visit carersuk.org/creativewriting The winning stories
Highly commended:
1st prize 2nd prize 3rd prize
In my dreams by Rachel Wright The World of Caring by Tania Tillyer Wheelchair Candy by Deirdre Maher
Clouds by Val Ormrod (Carers UK member) Sir Galahad by Susan Rouell (Carers UK member) Starting Block by Susan Ashworth
The winning poems Muesli You think I don’t see how small your life is now; how books and magazines torment.
1st
PLACE
You think I don’t hear how tired you are of ‘pardon?’ You think I don’t get it that the wartime-you still drives an ambulance in Sunderland, still dances, walks the dog along the sand; that the walking stick taken up Helvellyn and Gable has let you down; that friends don’t call to see you, that the dearest ones are gone. You think I don’t sense appetites diluted, horizons reduced to the next cat nap, another small glass, whatever on the TV, then bed at last.
Motherhood (after Diane Arbus)
1st
PLACE
Hold your baby close. Call her treasure trove precious gem. I know you mean it, let me tell you she will suck you dry for now, with that faraway look in those coal- pit eyes. I will tell you this also: one day, years from now, she will suck back your tears as no one else can, cup your head in her shapely hands nursing you to a safe place.
Wilma Kenny
You think I can’t be pole-axed understanding how your choice is pared right back to wording on a breakfast pack
Pru Kitching
2nd
Still life
2nd PLACE
Chipone. Chipone. Chipone Every letter said, every syllable stressed. Again, you tug my arm. Chipone. Chipone I seek meaning, sift the mixed messages this estuary sends Chipone. Chipone pattern insistent tides consider current counter-swirls float my paperboats of thoughts, see them damp down, drown, all lost in surface chop. Chipone. Chipone What if I dig, half-submerge on sandbars, find their substance bubbled soft, ragworm undermined and wont to shift? Chipone. Chipone I swim my sorries in these depths as you mouthfeel this please of plosives, smile to taste your own word’s salt and sweet. We navigate the straits we find.
His room downstairs. Her room upstairs. Handed over at the lift, he escorts her to entertainment, sits on the sofa at the back, arm around her neck as in their Geaumont days. Loving her stiff half-smile, hint of serenity. The way you look tonight He sings along, taps a rhythm on her shoulder, knocking on her closed door. Always looking for a way in - photos, pets, poetry. She used to be an artist; wall to wall canvases in a disposed-of-home. In art therapy on Mondays, she chews the paintbrush bristles, slips pastels down her socks, doesn’t wave at her husband framed in the doorway.
Beth McDonough
Valerie Fry
To understand Chipone
PLACE
By Candle
3rd
PLACE To think you’d tried one on yourself. An intricate and soundless pair, now unworn for ever by my bed. Your foot guessed my temple slipper size, your gift from the other side of the world where it seemed we’d been when we took to a slow dance to test them; your shadow wild enough to carry on without you as we all have to. Robert Miles
Kindness
3rd
PLACE
four ripe white peaches bite sized squares of homemade date slice a bowl of pick-your-own strawberries sunflowers, white roses, freesias a book of short stories pale purple phlox that perfume my room a get well soon balloon hedgerow blackberries offers of shopping
Marilyn Hammick
A young carer
SPECIAL MENTION
Before the sun is set He is awoken by the alarm He turns off the alarm Walks to his mother’s bedroom To give her the medication Everything is in autopilot Checks she’s ok Before changing the hour of the clock To seven o’ clock In time To make breakfast, to wash, to administer medication To make sandwiches, to leave a reminder to order prescriptions To leave the door unlocked for the District Nurse to attend To mum Before setting off to school To learn
Kauser Parveen
Highly commended: In Memory of Pat by Sue Norton; Higglers’ Green by Peter Branson; Great Grand-daughter by Sue Norton; Hoodie by Liz de Cruz; Patty Clare’s Place by Beth McDonough; Triumph walk by Alice S. Yousef; China Doll by Mantz Yorke; Meredith by Tora Rushby; Bedtime Ritual by Val Ormrod; When you baked by Jonathan Totman; Reminder by Terry Simpson; Soup by Jonathan Totman; Baby Scratcher’s bedtime routine by David Pierce; Her Small Breath by Jude Neale; Raised Beds by Robert Miles.
@carersuk
/carersuk
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Connecting carers
Open Up to caring
We’re working on a campaign to open up what caring is like and encourage carers to access help and support.
From the outside many carers may seem to be despairing, when actually, underneath, we’re full of hope. Over the past few months a talented team from Sky Creative have been giving their time and energy to make a 30-second film designed to encourage carers to ‘open up’ to help and advice and to raise awareness of what looking after someone really feels like.
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carersuk.org/openup
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So we can launch the campaign with a bang in the new year, visit our website to create your own Russian doll which captures your experiences of what caring is really like.
’m: Cheerful
o in c nd
We asked some of our carer ambassadors to compare their sense of what their caring situation looks like on the outside with the reality of what it feels like to them. Here are their answers.
I de
Early in the new year, we’d like to develop the campaign with our members in order to share experiences of what caring is like. Then, together, we can launch the campaign far and wide to raise awareness of caring and reach carers who may be unaware of the help available or feel, for whatever reason, that they have to go it alone.
O n t he o
Inside outside:
Based on an interview with Carers UK member Yasmine Maya, the film casts Yasmine as a Russian doll which becomes more and more lifelike as she begins to reveal more and more of what lies beneath the surface of her caring experience.
On the out sid
From the outside many carers may seem to be OK, when underneath we may be reaching breaking point and struggling to keep going.
But inside I’m: constantly on red alert, eating rubbish, anything to give me an energy boost.
But inside I’m: in constant fear of the next thing going wrong or the next person being completely uncaring
But inside: I want someone to fight for MY needs
Pippa
Barbara
Veronica
For all the latest news visit carersuk.org
Connect with real carers online: carersuk.org
I’ve been a carer for over 25 years, first for my dad and then for my mum. I’m naturally a happy person and usually present a smiley, positive image to people. A lot of the time that’s true. But sometimes, underneath, I’m really struggling – feeling very tired and alone. As carers, we can often feel reluctant to ask for help – I know I did. But when we open up, it’s such a relief to find we’re not alone. Many people have no idea just how hard caring can be at times, nor how special and natural it is to be able to look after our loved ones. If we don’t open up, perhaps they’ll never know.
o
e
I’m
: A mum of
a
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ely dressed
On the out sid
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: Frustrated,
On the out
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: Well-groome
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On the outs ide
Yasmine and her mother star in the Sky Creative film.
But inside I’m: stressed, missing meals and forever tired
But inside I’m: exhausted from the wear and tear of fighting a system that seems to work against me
But inside: I have a dream of how it could be better
But inside I’m: the mother of a wonderful person who drives me to distraction and amazes me.
Pat
Norman
Susan
Claire
@carersuk
/carersuk
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Help & advice
Depression Hidden Issues:
With 3 in 5 carers having faced depression because of our caring role, it’s time to bring mental health out into the open and work together to find new ways to look after ourselves
A
t some point in their lives, 1 in 5 people will experience some form of depression, where feelings of sadness or hopelessness just won’t go away and start interfering with daily life. Depression can range from making things a little more difficult to making things seem impossible. It’s not hard to see why looking after someone would make us more susceptible to depression. Many of us lose our sense of who we are because we’re focusing so much on the needs of someone else – giving up work, neglecting our own health, feeling socially isolated and at times trapped and unable to see a way out. There’s no quick fix for depression, but by talking about it openly and seeking help early, we can start to make life better.
Paul’s Story It’s a tragic irony that carers so often get sick when looking after disabled or ill loved ones. In my case it is my mental health which was impacted most. The pressure of caring, alongside trying to maintain a normal life, was overwhelming and pushed me further and further into depression. I began caring for my girlfriend, who would later become my wife, at just 19 years old. I had just finished my first year of university and Kate and I had just moved together. In the space of only a few weeks Kate
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went from suffering with minor M.E. to not being able to leave the house without a wheelchair. Suddenly she was sleeping 20 hours a day and had extreme muscle pain. Before either of us knew it, I was giving her around the clock care. We were thrust into a situation we were completely unprepared for. We didn’t have family nearby who could help and had absolutely no idea of what support was available. I now had to work out how I was going to manage this new caring role whilst continuing with a full-time degree and holding down a part-time job. Predictably, the pressure took its toll. With so much required of me, I was always falling behind with one thing or another. When I was studying, I was neglecting Kate’s needs. When I was caring for her, I fell behind in my studies. When I was earning, I was neglecting both. No matter how hard I worked, it was impossible to keep up. These pressures were compounded by the enormous expectations I placed on myself. I expected to be able to do everything for Kate, as well as get top grades, be athletic, and be successful in all aspects of my life. The feelings of guilt and failure were overwhelming. I couldn’t cope with these intense negative emotions, which grew day after day. The depression grew stronger until it began to change who I was. I drifted through each day in a vacant daze. My emotions were numbed as
I lost the ability to recognise joy and excitement. Eventually I couldn’t look after myself, let alone Kate. We stopped leaving the house, we stopped eating properly and I barely got out of bed. I became as dependent on Kate as she was on me. An all-time low came when I found myself in hospital after taking an overdose of pain medication. I had been consumed by depression. Fortunately, my story doesn’t end there. Depression had taken a hold of my life, but I was determined to fight back. I learned to equip myself against depression so that I could battle it and keep it at bay. I met with counsellors, I took medication, and I discovered coping methods that I could turn to when depression encroached. I learnt that to need help wasn’t a failure and that I couldn’t make up for Kate being sick. Most importantly I started to look after myself too. The pressures didn’t go away but I was able to arm myself so that I could deal with the impact that caring had on my mental health. This didn’t happen overnight. Nor did it happen without setbacks. It’s taken years to regain control of my own thoughts. There were periods of hopelessness and I often felt like giving in, but I continued to fight. Even now I battle guilt and feelings of inadequacy. I may never be completely free of depression, however, through seeking help and equipping myself, I can resist it.
For all the latest news visit carersuk.org
Worried? Our expert advice is only a phone call away: 0808 808 7777
61%
of us have suffered depression because of our caring role Expert comment My emotions were numbed as I lost the ability to recognise joy and excitement. Eventually I couldn’t look after myself, let alone Kate.
@carersuk
/carersuk
Depression Alliance says: “If you’re experiencing depression while caring for a loved one, it’s especially important to look after your own wellbeing and talk to your doctor about the range of treatments and therapies on offer. It’s also important that you don’t go through it alone. Sharing support with others can be vital in overcoming loneliness and isolation. On our website you can find your local self-help group along with tips and techniques for getting better and staying well. It can take time, but depression is common and most people will get better with the right help and support.” www.depressionalliance.org
From the forum Depression and being a carer Depression makes you feel exhausted, barely able to think, yet I know my husband depends on me. I cope by keeping my head down and slowly plodding through the days. Can anyone relate to how I feel ??? RE: Depression and being a carer I can relate to your situation. Keeping your head down and plodding on is a good thing, it’s another day when you’ve done your best. But I think you should make changes to your life and think more selfishly. Just some little things that you can do and that you will enjoy. Talk with people who know what it’s like: carersuk.org/forum
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How you can help Leave a gift in your will Marathon Man Mike Sue made the very special decision to leave a gift to Carers UK in her will. Here she tells us why: “Mum and I had always been close – she was my rock, my best friend. When I started planning my retirement it was only natural that she featured in those plans. We were going to travel the world – it was going to be wonderful.
Mike Rippingale from Rhyl, North Wales, has added training for the 2015 London Marathon to an already hectic life of juggling caring responsibilities with work and parenthood.
As my retirement drew closer mum was diagnosed with dementia and all those dreams went out the window. Caring responsibilities took over and I was thrown into a new world, a lonely and very frightening one. Although light touch at first, soon mum relied on me for everything. Just before Christmas, three years after diagnosis, it became clear mum could no longer manage on her own and I moved in. It was mum’s doctor who told me about Carers UK. I was at my lowest point when I joined, but was quickly welcomed into a community of people who had been there, done that and got the t-shirt. Caring can be very lonely. Especially if you’re not in contact with people who know what you’re going through. Carers UK’s online forum was my lifeline – it saved my sanity. After receiving support myself, I soon started offering tips and helping others who were new to caring. All the time I was motivated by the feeling that I didn’t want anyone else to go through what I went through alone.
Mike, 32, cares for his wife Sam, 27, who has fibromyalgia. He also works full-time and looks after their three children, all of whom are under nine years old.
Five years after beginning my caring journey mum passed away. Just as it had been from day one, the support I received from my friends on the forum was truly amazing. They really felt my pain and their messages of support helped me through a very bad time.
“I am a carer for my wife… and would like to give something back for the support Carers UK gave us.”
I have seen the difference gifts in wills make to Carers UK – without them they wouldn’t be able to do a lot of what they do. After mum passed away I knew that I wanted to change my will to include Carers UK. Caring had been such a big part of my life; I wanted to give something back to the community that supported me when I needed it most.” If you are interested in leaving a gift to Carers UK in your will and would like to receive our brand new legacy brochure telephone 020 7378 4988 or email inmemory@carersuk.org
Mike hopes that, as well as raising awareness of fibromyalgia, he will help draw attention to the challenges that carers face and the support Carers UK offers:
To kick off his fundraising, Mike held a family fun day at his local community centre in Rhyl. There were lots of family favourites, including a bouncy castle, tombola, bbq and hook-a-duck! You can sponsor Mike by visiting www.justgiving.com/Michael-Rippingale. If you’d like to join him and be part of our 2015 Virgin Money London Marathon team email fundraising@carersuk.org or call 020 7378 4952.
Gifts in memory I wanted to give something back to the community that supported me when I needed it Sue Cuomo
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If you want to help make life better for carers by donating or raising money in memory please get in touch. You can order collection envelopes for a funeral or remembrance service or create an online tribute fund. Please contact 020 7378 4988 or email inmemory@carersuk.org
For all the latest news visit carersuk.org
Inspired? Find out more: carersuk.org/how-you-can-help
Growing volunteering in Wales New funding will enable us to develop our volunteering programme in Wales, reaching and connecting more carers in local communities. Building on the fantastic work of our Ambassadors and Adviceline volunteers in England, we’re looking for Welsh volunteers who can draw on their own experience of caring to raise awareness, help carers identify themselves and get connected with appropriate local services and resources.
Volunteers may also represent carers locally with decision-makers, giving a carer’s perspective on the services that affect their lives. For more information visit carerswales.org or telephone 02920 811 370.
Events Calendar Friday 28 November Carers Rights Day station collections We have places available in the following: Sunday 15 March 2015 adidas Silverstone Half Marathon
Carers UK Research Group Your opinion makes a difference. The Carers UK Research Group is a new opportunity for carers to share experience and knowledge to help shape policies, information, products and services designed for carers and the people we look after. The group builds on the measures Carers UK takes: • to ensure our policy and research work carries the voice of carers • to involve carers in the design and development process for products and services, ensuring they meet the needs of carers Register at carersuk.org/researchgroup Registering your interest will not commit you to taking part in the interviews, focus groups, discussion or other activities. It simply indicates that you are interested in sharing your views and experience. When new projects arise we will contact you and invite you to take part. We will confirm your registration and send you a welcome pack. The next time you hear from us will be to invite you to a research activity. All your transport costs for activities will be reimbursed. We will also offer you a voucher when you participate in activities as a thank you.
@carersuk
/carersuk
How often should you expect to be contacted?
Monday 25 May 2015 Virgin Money London Marathon Sunday 12 April 2015 London BUPA 10,000 Saturday 30 – Sunday 31st May Edinburgh Marathon Festival If you’d like to find out more about these events or any others email fundraising@carersuk.org or call 020 7378 4986. We’d love to hear from you!
This depends on the activities you make yourself available for, which you can indicate when you complete the form (interviews, group discussions, surveys, etc). Some projects may be more relevant to you than others. Can other teams from Carers UK still contact me? Registering in this group does not mean that other teams from Carers UK will stop contacting you. If you are already receiving information or invitations to take part in events, activities or surveys from other teams you will continue receiving them. But when an activity forms part of the Carers UK Research Group it will be clearly stated. Tellus what you think carersuk.org/researchgroup Email research@carersuk.org or call us on 020 7378 4999
What could you do? If you can draw on your experience of caring to help us reach out to carers in communities throughout the UK, please contact: volunteering@carersuk.org
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Inspired? Find out more: carersuk.org/how-you-can-help
We couldn’t do what we do without you… Special thanks to the following fearless fundraisers who have raised money and awareness for Carers UK so that we can continue to make life better for carers.
Christmas is coming Christmas Cards
Our Christmas cards will bring your festive messages to life. To receive information on Carers UK's 2014 Christmas card range, just tick the box on the fold-out form and we'll send you all the details.
Give As You Live
Rob & Jordan Kay (above) Rob and his 20-year-old son Jordan completed a circumnavigation of the UK as part of the crew of The Swan, an historic fishing vessel. To sponsor them or find out more about their epic sailing adventure visit: www.justgiving.com/ Rob-Kay3
Sue Fletcher-Jones (top right) Sue completed a six-day trek through the Sumatran jungle in September, raising a wonderful £3,000 for Carers UK.
Nick Stevenson (bottom right) In September Nick took part in a 10KM swim in the River Dart in Devon with the aim of raising £1,000 to help make life better for carers.
Fancy doing some fundraising of your own? Our toolkit is packed full of handy tips, advice and information to make your fundraising a roaring success. To request your copy email fundraising@carersuk.org
A free tool that enables you to raise money for Carers UK whilst shopping online. Thousands of your favourite online stores will donate a percentage of whatever you spend at no cost to you.
Christmas Jumper Day Hold a Christmas Jumper day in the office or at school. You could give out prizes for the cheesiest jumpers.
Christmas Cake and Coffee
Hold a festive coffee morning – it’s a great opportunity to fundraise and have a gossip with friends.
Recycling for carers If you’ve got old mobile phones or printer cartridges lying around at home, donate them to The Recycling Factory. They will recycle them and in turn raise money for Carers UK. To find out more visit www.therecyclingfactory.com
Please help us make life better for carers Just fill out this form and pop it back to us in the Freepost envelope provided. Alternatively, return to Freepost RRYCLTCB-GTHC, Carers UK, 20 Great Dover Street, London SE1 4LX. Your details First Name
There are many ways you can help us make life better for carers. Please tick the boxes that interest you and we’ll send you more information.
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Instruction to your bank or Building Society Please pay Carers UK Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Carers UK and if so, details will be passed electronically to my Bank/Building Society. INSTRUCTION TO BANK/BUILDING SOCIETY TO PAY BY DIRECT DEBIT
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Please find enclosed my Cheque
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Thank you. We couldn’t do what we do without you. Make your gift worth 25% more, at no extra cost to you! I confirm that I am a UK taxpayer and would like Carers UK to reclaim the tax on any of the donations I have made in the last four years and any future donations I may make.** Signature:
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* Please delete as appropriate. Donations will be taken on or around the 24th of the month. ** I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand Carers UK will reclaim 25p of tax on every £1 that I give. Please let us know if your tax circumstances or name and address details change so that we can update our records.
Interview
I care
Les Eve, 79, looked after his wife, Shirley, for half of their 58-year marriage and is now adjusting to life after caring.
I met my future wife when we were nine years old. She lived just round the corner and we literally bumped into each other on our bikes one day. She was tall and skinny and towered over me! There was no magic potion, things just evolved naturally from that point on. We got married when I returned from national service. I was 20 and she was 19. We built a normal life together I suppose – we had a family, went on holiday together, took each other for granted. She noticed her movement slowing down when she was handling lots of invoices at work. But when she was diagnosed with Parkinson’s disease we didn’t really buy into it at first. We didn’t understand how debilitating it was. When her health started deteriorating rapidly, I had to give up work and look after her full-time. Again, it was natural. I didn’t have to think about it.
natural bond. We felt close to each other, but as time went by, we saw less and less of family and friends – for some reason I think they just couldn’t deal with it. For the last few years of my wife’s life she was basically a different person. She had dementia but in the end it was cancer that killed her. She died at home, in the lounge, just as I was getting her ready for bed. Her death was still a shock, but it was mixed with relief, which seems a strange thing to say. Her funeral took place in some natural woodland that used to be the animal sanctuary our dogs came from. During the service, my Labrador, Mitchell was lying on the floor between my legs. When the coffin was presented, he looked at it, then jumped up, put his paws on my chest and licked me. He’s never done that to me before or since.
Carer’s Allowance was £39 a week, or something like that, but luckily we’d already paid off the mortgage and had been brought up to be frugal, so we got by. The hardest thing for a man like me was to accept the role reversal – cooking, cleaning and shopping were not the things I expected to be doing. But that’s just how it was. I looked after her for 29 years. We used to disagree with each other as much as we agreed, but we had a
Images (clockwise from top left): Les Eve; Les and Shirley on their wedding day; Les at his local Carers’ Council
I can describe the adjustment to life by myself in two words. Bloody hard. There was no noise and movement. On the long winter nights, the clock just wouldn’t go round. If it weren’t for Mitchell, I would have really struggled. The carers’ groups have also helped me get to know a lot of people all over the place. As well as being a Carers UK Ambassador, I’m on the Carers’ Council for Norwich and Norfolk. I run an Age UK group for carers with dementia. I also help at a “Care for a Cuppa” drop-in at my local Sainsbury’s, and this work keeps snowballing. I’ve even been on local television! Les Eve is a Carers UK Local Ambassador in Norfolk.
Les’s dog Mitchell
Making life better for carers: carersuk.org
If you would like to get involved in our Ambassador programme or help us reach out to more carers, visit carersuk.org/connect or call 020 7378 4999