NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

Give usa break...plus...

Latest researchOur State of Caring 2019 report

Creative sparkResults and stories from our creative competitions

Your members’ magazine

Summer 2019

All about our new video series and information on taking a break

Welcome

KEEP IN TOUCHCarers UK20 Great Dover Street, London SE1 4LXT 020 7378 4999 E info@carersuk.orgcarersuk.org

Carers ScotlandT 0141 445 3070 E info@carerscotland.orgcarerscotland.org

Carers WalesT 029 2081 1370 E info@carerswales.orgcarerswales.org

Carers Northern IrelandT 028 9043 9843 E info@carersni.orgcarersni.org

Carers UK HelplineT 0808 808 7777Opening hours: 10am-4pm Monday and TuesdayE advice@carersuk.org

We connect carers so no one has to care alone

We campaign together for lasting change

We innovate to find new ways to reach and support carers.

Our mission is to make life better for carers:

We give expert advice, information and support

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 August 2019

A warm welcome to our latest edition of Caring, where we share some of the news you need to know and look back on recent events and activities.

During my first six months at Carers UK, I have been welcomed into and become part of the carers family. I’ve been privileged to have met so many passionate, determined and creative people with drive to make a real difference to the lives of carers. But both the ageing population and changing definition of family makes caring a growing and ever more complex issue. We estimate that the 2011 census figure of 6.5 million carers could now be closer to 8.8 million carers in the UK – so now, more than ever, we must do everything we can to create a society that respects, values and supports unpaid carers.The recent uncertain political environment has meant that, at times, other issues seem to have taken priority over those that would be of greatest, direct benefit to carers. However, more and more voices are now speaking up about the importance of social care and the role of carers - and Carers UK will continue using its influence in pushing for the rights of carers to be improved. There have already been some positive developments in the last year, including measures to support carers in the cross-Government Carers Action Plan, some of which Carers UK

are helping implement. Carers themselves have been prominent in government initiatives to boost employment, address loneliness and social isolation and increase personalisation of NHS care. There has also been a welcome increase in focus on carers from the NHS, with commitments in the Long-Term Plan which are now being rolled out across England.We’ve included an article on our State of Caring 2019 report – a big thank you to everyone who completed the survey. The results of this important annual study show clearly why system-wide reform is needed to ensure carers are properly supported and are able to have a good quality of life alongside their caring responsibilities.Finally, I look forward to meeting with many of you at our AGM and Members’ Conference in October, with a programme of engaging speakers and discussions with carers. I know not everyone can attend, but we’ll share with you highlights from the day in the next issue of Caring.

Helen Walker, Chief Executive

In this issue...

AGM and Members’ Conference 2019

6-7

Give usa break...

10-11 12-19

Creative writingand photography

competitions

3

News & campaigns

State of Caring 2019 survey – what you told us

In July, we published the headline results which show clearly why system-wide reform is needed to ensure carers are properly supported and able to have a good quality of life alongside their caring responsibilities.

39% of this year’s respondents said that they are struggling to make ends meet financially and over two thirds said that they regularly use their own income or savings to pay for care or support services, equipment or products for the person they care for.

On top of this, one in eight carers reported that they or their loved one received less care or support in the previous year, as a result of reduced support from social services.

But it’s not just financial costs and reduced support that carers are facing. The

Over 8,000 of you shared your experiences of caring with us in this year’s survey, making it our biggest survey yet!

Campaign with us: carersuk.org/campaigns

2019

State of CaringA snapshot of unpaid care in the UK

carersuk.org/stateofcaring

results also indicated that many carers are suffering from loneliness and social isolation, need support to help them stay in work, and are facing their own health problems as a result of their caring role.

Helen Walker said:“This is a classic case of robbing Peter to pay Paul, with carers already providing high levels of support left short-changed as they use money for their retirement trying to cover the care costs of their loved one today.”

Following on from the results we’re continuing to campaign to improve access to breaks for carers, to increase Carer’s Allowance and for a new right to paid time off work to care.

Thank you to each and every one of you that took the time to fill in the survey, enabling us to give the public, decision makers and the media an understanding of what it’s like to care for someone in 2019.

To read the full report please visit carersuk.org/stateofcaringTo find out more about our campaigning work, please visit carersuk.org/campaigns

Of those struggling to make ends meet

said they regularly use their own income or savings to pay for care or support services, equipment or products for the person they care for

1 in 5 of all carers

had an emergency hospital admission for the person they care for in the last year, which they thought could have been prevented

Over half

of carers who are receiving Carer’s Allowance are struggling to make ends meet

Only one quarter of carers

said their need to have regular breaks from caring was sufficiently considered in their carer’s assessment

Over half

of carers said that they are not able to save for their retirement

54 @carersuk /carersukcarersuk.org

Members’ conference Join us at our AGM and Members’ Conference: carersuk.org/agm19

All about the AGM and Members’ Conference

Below are some common questions and answers, but do get in touch if you’d like to ask anything else.

Is it an AGM or a Members’ Conference?

Both! The day starts with the AGM in the morning but from late morning onwards is centred on our conference. The Conference includes a range of speakers, opportunities to share ideas, and tips on wellbeing. During the breaks there will also be chances to meet other carers, browse our information stands and grab a cuppa.

What is the theme of this year’s conference?

The theme of this year’s conference is ‘Getting Carers Connected’. Several of the sessions will address how carers across the UK can be connected with the right information and support, as well as be connected with each other.

Will there be lunch?

A buffet lunch is provided as well as teas and coffees during the afternoon break. Please tell us about any dietary requirements in your booking form.

What if I can’t attend?

We understand that it’s not always possible for our members to attend - for example due to the distance or caring responsibilities. Therefore, to keep all members informed we’ll provide a summary and highlights from the day. If you’d like to vote in the AGM but cannot attend, there is a proxy voting form at carersuk.org/agm19

How can I book?

Just visit carersuk.org/agm19 and fill in a quick booking form.

Contact us about the AGM and Members’ ConferenceIf you have any questions, please contact:

Ingrid Lawson | ingrid.lawson@carersuk.org | 020 7378 4934Jane Storey | jane.storey@carersuk.org | 020 7378 4948

I need to cancel

If you book a place and later find that you are unable to attend, please let us know using the details below.

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AGM and Members’ Conference

Clifford Chance, Canary Wharf, London E14 5JJ

Thursday 10 October 2019

10.30am – 4.30pm (registration from 9.30am)

It would be wonderful to see as many of our members as possible at our 2019 Annual General Meeting and Members’ Conference. Every year, we come together to discuss issues affecting carers, report back on the work of the past year and look to the challenges and opportunities ahead.

You’re invited to our AGM and Members’ Conference 2019

Carers Week Find out more about Carers Week 2019: carersuk.org/carersweek

In Carers Week 2019 we focused on the theme of Getting Carers Connected. From accessing services and advice, to interacting with friends, family and other carers, creating connections for carers is essential for getting the support they need. Read on to discover some of what went on during the week.

Getting Carers Connected

Over 1,160 amazing events and activities were registered on the Carers Week website, from information and advice sessions to coffee mornings, mindfulness workshops and even a sea fishing trip! From the Shetlands to Jersey, people across the UK got involved in organising activities. Our new research, published during Carers Week, gathered responses from over 8,000 carers. It highlighted the loneliness epidemic facing the UK’s carers, who we found are

seven times more likely to be lonely compared with the general public. Our report also found that the number of carers in the UK is growing rapidly and could be as high as 8.8 million, despite earlier predictions that the carer population would not reach 9 million until 2037. Helen Walker said:“With as many as one in six adults in the UK now taking on an unpaid caring role it is high time our society recognises and values the crucial support they provide.

“Many unpaid carers struggle alone without support. If we are to combat the loneliness epidemic facing them it is imperative that everyone – Government, employers, health and care professionals, schools and universities, and each of us individually – plays a role putting carers in touch with practical and financial help. “Carers need to feel they are valued, understood and connected to their community.” The research was widely covered in the national, regional and local media. We’re still crunching the numbers but expect to have reached well over 90 million people with messages about Carers Week!

Raising awareness amongst politicians and with national governmentsWe asked carers to get in touch with their MPs to ask them to come to our Carers Week event, and over 700 of you did just that. As a result of your emails, 102 parliamentarians took part in the Carers Week ‘speed-networking’ event in Westminster, which raised MP’s awareness of the huge contribution carers make and the challenges of caring. Carers and charity representatives spoke to MPs about their experiences of caring and what they feel could be done to make carers more connected. At an event co-designed by Carers UK, the Minister of State for Care, Caroline Dinenage MP, launched the new Carers Innovation Fund. This £5 million fund, which Carers UK campaigned for, will invest in innovative ways of supporting unpaid carers and building more carer-friendly communities across the UK, from new uses of technology to peer support groups.

PARK

Former Prime Minister Theresa May mentioned Carers Week during Prime Minister’s Questions and on Twitter. In Northern Ireland, a coalition of carers organisations held a roundtable in Stormont with members of the Legislative Assembly.

Carers Wales hosted an event in the Senedd, and Carers Scotland hosted an evening reception in the Scottish Parliament which was attended by over 100 people, including Members of the Scottish Parliament and Ministers.

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Carers Week in numbers• 1,167 activities registered on the Carers Week website - and many more that weren’t• 491 pledges of support for Carers Week• 102 parliamentarians attended Carers Week ‘Speed-networking’ event at Westminster• 438 MPs received emails about Carers Week

Keep an eye on carersweek.org for updates and plans for 2020!

This is caring Find out more: carersuk.org/breaks

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Everyone needs to take some time out now and again. But if you’re caring around the clock, finding time can be difficult. Knowing that others depend on you, it can be hard to dedicate some quality time just to yourself.

Time for a break…?

The all-round benefits of having a break are well known. Research shows that after having had some time off to relax and recharge, we become better versions of ourselves: happier, more productive, more energised and in a stronger position to care for those we love.

But don’t take our word for it. Several carers we interviewed for our new video series*, tell us how taking regular breaks are an essential way to keep going.

Each has a different story to tell, highlighting that breaks can take many different forms. While for some of us escaping the British Isles is a must; for some, the idea of a sunny beach among palm trees is just the stuff of fantasy.

Some benefit from taking time out to do exercise like yoga or walking. Mary, a full-time worker who cares for her mother, says “On my commute I take time to walk through my local park rather than taking the bus, and that really enables me to unwind and shut off from what I’ve left at home.”

Others seek stillness, opting to lose themselves in another world, like Helen, who takes time out to read when not looking after her disabled daughter.

While most of us recognise the need to have a break, making it happen can be another story. Many carers struggle with the system. How do you get support and cover or even apply for funding to take a break? How would you go about getting away together? Where do you start?

Our video series helps you navigate your way, recognising that everyone’s needs are unique: carersuk.org/breaks.

As we look at what needs to change, we’d really welcome your stories, experiences or tips - please email your thoughts to: comms@carersuk.org

Keep an eye out for our upcoming Give us a Break campaign, which will highlight the need for breaks, the right for carers to have a life outside caring,

demanding transparency and accountability from national and local governments, and call for increased access to breaks across England, Northern Ireland, Scotland and Wales.

*Our video series was based on the findings of a survey asking carers about their experience of breaks.

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Keeping Well, Keeping Connected

Carers UK creative w

riting anthology: volume five

Proudly supported by:

Keeping Well, Keeping ConnectedAn anthology of poems and stories Volume 5

Cover photography by Stacy Donne

The Carers UK creative writing competition underlines the power of sharing the challenges, joys and complex emotions that come with caring for a loved one.

This anthology features poems and stories from the 2018 creative writing competition.

However caring affects you and your family, we’re here.

“I am happy to say that this anthology arising from the Carer’s UK Creative Writing competition, now in its fifth year, boasts work of the highest quality; writing that is intensely moving and ceaselessly imaginative. The poems and stories here continue to further our understanding and deepen our appreciation of the caring experience whilst creating new and positive connections between us all.”

– Cheryl Moskowitz, competition judge

“Well done on another lovely creative writing competition. It is such a great event for us all to get close to the real emotions of other carers. Carers UK put it together with so much thought and passion.”

– Tiggy Walker, Patron of Carers UK

Proudly supported by:

carersuk.org

Creative writing competition

For our most recent creative writing competition we welcomed poems and stories on all aspects of caring, as well as inviting submissions on the theme of ‘keeping well, keeping connected’. Once again, we were delighted by the range and quality of the entries, which captured so many of the ups and downs of carers’ lives.

We are grateful to Specsavers for supporting the competition, as well as to The Poetry Society, The Reading Agency and The Society of Authors for helping us to promote it. We also really appreciate the support of poet Cheryl Moskowitz who judged the competition for the fifth year running.

An anthology of the winning and highly commended entries, plus poems and stories selected by Carers UK members, Trustees and staff, is now available from Carers UK’s online shop - see the back page of Caring for your exclusive discount code. During the past five years of the competition we’ve received over 3,000 entries about caring, but in 2019 we’ll be taking a break from the competition to focus on how we can share many of these poems and stories with a wider audience.

If you have any questions email creative@carersuk.org

Proudly supported by

Sun butters the bay windows of the Seaview Caféthis scorching afternoon. Outside in turquoiseblue the vista unfolds in waves –families, dogs, parasols, the tiny lighthouse.

Inside with English breakfast and hot chocolateit feels like late autumn or the featurelessgrey of midwinter. Not cold, just numb,the same old weather we’ve brought from home.

A son sits with his father and our glances catch.The old man nudges a screen with his pinky’s knuckle.Both have the same dreamy, absent look,shoulders touching side by side in silence.

I am wordless too, waiting while you eat,letting my coffee cool, watching the walkersand paddlers in an endless, unspooling filmbehind glass. We are motionless

while those other lives we lost or let goflutter out there, moth-like in the hot light.How strange the world’s become.I reach across the table for your hand.

First prize: poetry Pippa Little

Inside with English Breakfastby Pippa Little

Pippa from Newcastle, a poet and a Royal Literary Fund Fellow, was awarded the top poetry prize in our 2018 creative writing and photography competition. Pippa, who fits in her writing between being a carer for her husband who has been diagnosed with serious health issues, commented:

I was delighted to have won this competition! Carers UK is such a good organisation and source of support. It’s good to know that they are there.

“I was inspired to write this poem after a visit with my husband to a beach café near us. It was a beautiful day, you could see the whole bay and the lighthouse and I could make out the contrast between those people not being well, sitting in the café, and those outside on the beach. It moved me to write a poem about it.

Carers’ lives Order the book: carersuk.org/anthology

“I am happy to say that this anthology arising from the Carer’s UK creative writing competition boasts work of the highest quality; writing that is intensely moving and ceaselessly imaginative. The poems and stories here continue to further our understanding and deepen our appreciation of the caring experience whilst creating new and positive connections between us all.” - judge Cheryl Moskowitz

1514 @carersuk /carersukcarersuk.org

Carers UK member Kim Harry–Young, from Newport in Wales, has won a top prize in our creative writing competition, with her poem entitled ‘Autistic Avenger’. Here, she talks about her poem and how caring for her son inspired her to write it.

Kim Harry–Young

I was prepared when we adopted Logan. My

partner, Michelle, and I very much wanted a family and he was our first child. He was matched to us and we went to meet him. From that moment, it felt like he was meant to be with us.

“We were told Logan had disabilities but we didn’t know how these would develop and if he’d be able to walk. My partner Michelle, was a special needs’ teacher, which meant that much of the support Logan needed was familiar to us. We prepared for his arrival much like any new parent would. I remember painting his room the same colour as the room he was already sleeping in, so that it would feel more familiar and help him settle in.

“We were of course nervous, as first time parents, but we had each other to lean on. I believe more in nurture than nature, and I can see parts of Logan’s personality that are like mine or Michelle’s. When he was nine, he was diagnosed with a heart condition, which he has

recovered from. He also has learning difficulties and was diagnosed with autism at age 11. He has defied all diagnosis; doctors said he wouldn’t walk or talk. Now he is walking, talking, and functioning fully. He is now in a mainstream school in a special learning class and has a reading age of eight. He has met all his milestones.

“As time went on, we also adopted our daughter, Rylie, and that was our family. Michelle and I did everything together and shared all our household responsibilities and childcare. I looked after the children in the day, whilst Michelle was at work, and then during the night I would work as a DJ.

“Everything suddenly changed when Michelle had a seizure at work. This carried on happening and she became very ill – at one point she was having up to 30 seizures a day. We couldn’t work, we couldn’t go out; we were all pretty much housebound.

“This new life I wasn’t prepared for. It was a huge difference. At times Logan would turn into a carer, holding Michelle’s hand when she was unwell.

“Now things are better as Michelle’s medication has settled but she can’t work or be left alone, in case she has another seizure. We can all go out together sometimes, which we couldn’t before.

“She can play with the children but she can’t look after them alone. My caring role is so constant now and I’ve no idea what will happen. Will Michelle get better, or could she get worse again?

“Writing has been helpful to me not least because it’s something that I can do from home! I would definitely recommend writing, to other carers, as a way to switch off. It would be wonderful if I could make a living from it too! I’ve just completed a degree in creative writing, which I’ve done from home at the Open University. I’ve always been interested in writing, especially since I used to be a musician.

“Logan inspired me to write ‘Autistic Avenger’ because he’s such a big personality. He’s always dressed up as some superhero or another and loves musicals. He attends a special youth organisation for people with disabilities near his home in Wales. It gives him the opportunity to perform and take part in competitions with other pupils – something he loves.

“‘Autistic Avenger’ was the first poem I’d entered into any kind of competition and I was over the moon that my poem won and has been published in an anthology! Carers UK has been such a help with information about all sorts of things. Writing in the competition has made me realise I am not alone. Now winning a prize has spurred me on to write more.

Autistic Avengerby Kim Harry-Young

I am the mother of an autistic superhero,I shine his symbol against a dark wall.He’ll never walk, they said.He’ll never talk, they said.You’re wrong, I said.

They gauged his smallness.I nurtured his growth.He defied diagnosis and finally spoke,I am Batman, don’t you see?Spiderman, Superman he ran with all three.

I smothered his kryptonite.Ignited his sparks.Silenced the cynics who made those remarks.I was right, I said. You just couldn’t see.My boy can fly. When you just let him be.

Carers’ lives Read more: carersuk.org/creative

1716 @carersuk /carersukcarersuk.org

A black cab pulls up at the kerbside under the orange glow of the streetlamp. The road is quiet as the neighbours sleep soundly in their beds. A man gets out of the cab and tries to wake his eighty-one-year-old mother who has fallen asleep on the back seat. The taxi driver holds open the door as he tries to coax his mother out. She is drowsy and mumbling incoherently.

“Bibi you have to get up now. We’re home.”

The old woman feels exhausted. She struggles to her feet and manages to take a few steps. She feels heavy. The cold penetrates her clothes, thin black leggings and a grey sweatshirt. Her colourful shalwar kameez suits long since replaced with more practical attire. Her eyes close involuntarily, her legs buckle underneath her. A black coat, loosely draped around her shoulders, falls to the ground. She doesn’t know where she is...

The man rushes into the house, brings out a pillow and a blanket. His sister, who has been waiting at home, follows behind. It is freezing. He watches as his sister carefully lifts the old woman’s head onto the pillow and covers her with the blanket.

As they wait for the ambulance, the sister checks that her mother is responsive. The old woman mumbles then falls asleep, snoring lightly. She lies on the cold pavement with the orange street light illuminating her face. It is as if she is sleeping soundly in her bed. A young couple walk past and offer their help. The sister thanks them and says that they are waiting on an ambulance. It should be there soon.

The man leans on a nearby wall and tells the taxi driver of his frustration. The hospital should have never discharged her, he says, and the taxi driver nods in agreement. They waited five hours for patient transport before giving up and calling a cab. They shake their heads in unison at the situation.

An extract from ‘Fallen’:

Member Dalvinder Ghaly, from London, looks after her mother Parshan, who has Alzheimer’s disease. She combines caring with working full time, and previously was off work for a year to care for her mother. She spends the little spare time she has writing, and won third prize for her story ‘Fallen’. Here she talks about looking after her mother and carving out time for herself.

Dalvinder’s story

I would never have seen myself as a carer

because I’ve always worked; I thought carers could only be people that looked after someone 24/7. It was only when I stopped working to care and saw the acute needs of my mum’s condition that I realised I was a carer. I know now that there are so many models of caring, not just one.

“It just so happened that my mum was diagnosed with Alzheimer’s disease around the same time as I was made redundant. I spent a very stressful year navigating a difficult system, creating a structure, intensively researching and organising a care package.

“It felt sudden and new to me. My mum could no longer be left alone and I had to deal with some difficult behaviour and auditory hallucinations (symptoms I had no idea about before). Even though I have a big family, I felt

overwhelmingly isolated. As her main carer, it was hard to make others understand what was happening to mum and how my life had changed. Sometimes it’s easier to explain physical symptoms rather than her mental health – one minute she can be completely lucid and the next it just changes.

“Now that systems have been set up, I’m back at work. My week is packed and I’m juggling a lot. I’m looking after mum at least four or five evenings a week, take time off or work flexibly to make appointments and I’ve spent countless hours in hospital with her. “I’m also managing and structuring the care she has when I’m at work. It’s handy that I’m a planner by nature and it’s my job! However sometimes even beautiful plans can go out of the window; mum’s condition can change quite quickly.

“Sometimes I don’t know how I’m doing all this. But

I have to. It isn’t easy but I try to remember why… for mum. I’m doing the very best I can for her. I’ve been so desperate at so many points, but I’ve had to step up and tell myself:

You’ll figure it out.

“Sometimes I’m so overwhelmed with all the practical details, I have to remind myself what’s happening. I’m losing someone close to me, slowly. Time is so important to me now. In a way it’s made our relationship better. So while it is challenging looking after her, it is also very rewarding. We go out, laugh together and have an amazing time too.

“Although I’ve recognised myself as a carer, this is not all I am. We are all so many things. I care, I work and I write. I have been writing for some time and have done a

Dalvinder Ghaly - Joint third prize for the story ‘Fallen’.

few courses; at the moment I’m doing a Master’s degree. “When I saw the creative writing competition on the intranet through work, I saw it as ‘a sign’. “I was absolutely ecstatic when I heard I had won a prize. This is the first time I have won anything in a competition. “There are things I want to do with my writing moving forward but I have to work out how to balance this with everything else!

Carers’ lives Order the book: carersuk.org/anthology

1918 @carersuk /carersukcarersuk.org

Connect with other carers: carersuk.org/forum

The winning image is...

In this second year of our photography competition, we really enjoyed seeing all of the entries submitted, which provided some fascinating and striking insights into carers’ lives.

As well as a ‘This is caring’ category, in response to members’ suggestions we also welcomed entries on the theme of ‘Life outside of caring’.Hayley Gwilliams’ winning image in the ‘This is caring’ category was displayed at our Carers Rights Day Parliamentary Reception, and shows her nine year-old daughter putting her eight year-old brother’s medicines down his gastrostomy tube.We are thankful to Specsavers for supporting this year’s competition, and to photographer Bella West for judging the competition for a second year running.

Photography has the power to invite

and educate the world without the need for words, often the most simplistic of photographs can be the most powerful. I always suggest not to overcomplicate a portrait or photograph - just say it as it is!

“The decision of shortlisting the winners was incredibly difficult and I went over and over them! There are some photographs that are hugely creative and some just full of emotion - some with both those elements.

“Keep recording your lives, this is the most powerful way of telling your story and bringing awareness to the world about the highs and lows of caring for a loved one.

Bella WestAndrew TaylorSecond prize: poetry

Reading in the Rainby Andrew Taylor

The gas fire purrs, glows orange in the gloomy coop, this caravan,can’t alter the facts of it - its bulgy cushions, the bits of brittle,yellowing foam they shed, the torn curtains hanging over smeary glass.

We wipe a port-hole in the fog to see feathers streaming into fluty drains, knotty twine clumps and hay strips slidingover wind-scrubbed concrete, rain-pocked puddles.

A spiky kitten, spooked by wind-bursts, avoids the rattling gateand the splayed fan of heavy wood planks shifting slightly.Elms above us roar warning of each approaching raid.

You read to us from a battered copy of ‘All Creatures Great and Small’.This page is crinkled from a water spill; this one’s yellowed, sun-smothered,speckled with spludged insects, exclamations, blotty vowels.

The yard warps in the wobble of the glass and we listen to your voices – the rolling open country of the storyteller, the steeply climbing,suddenly downwards sliding scales of script, your awful Yorkshire accents…

And now, nearly five decades later, it’s my turn and I’m readingAlice Oswald’s ‘Dart’, letting her river song reach you in your bed,hoping you can see, as I do, images in filmy water, salmon leaping.

Too weak to read those printed words, you listen to my voice And through the open window, rain, rain tipping the dark leavesof your roses down, spilling onto the grass, meeting soil.

Andrew, a retired teacher from Exeter, cared for his mother who is in her eighties and needs support with everyday tasks like cooking and cleaning and struggles to move around. Andrew’s poem, ‘Reading in the Rain’ was inspired by reading to his mother, who now lives in a care home.

Carers’ lives

“She asked me to read her a story. It meant a lot to her being read to, and after I finished reading she said, ‘That’s the first time anyone has read to me since I was a little girl’. I was quite moved and it took me back - as in the poem – to when she used to read stories to us when I was a child, and how it was now my turn to read to her.”

2120 @carersuk /carersukcarersuk.org

Carers UK member Janet Bevan wrote this moving story about looking after her mother, and how her life changed as a result.

Looking after Mary

My father died in September 2010. We had all lived together in my house; my father, my mother and me. He died after only a week of illness, having been taken to hospital one Sunday with pains and diagnosed with double pneumonia. It left me, as an only child, to look after my mother. Mary was 81 years old, suffered from Parkinson’s disease, and Lewy body dementia was also creeping into the picture. I had always had a tumultuous relationship with Mary and now I was in sole charge of her. She could still wash and dress herself, but I assisted with bathing and washing her hair. Mary still liked to cook a bit,

although she used to make a mess in the kitchen. She loved making salads and would often make me one, ready for when I came home from work. Most of the salad ingredients ended up on the kitchen floor. I was single and in my late fifties and had a full-time job in London; my life changed considerably when my father died. I was unmarried, childless and up until then, really did just what I wanted. Mary and I slipped into a routine. She enjoyed visits from friends and neighbours. She liked watching quiz shows and Jeremy Kyle and enjoyed scratch cards and reading ladies’ magazines.

As the months progressed, I was becoming more and more stressed. I had no one else to help me.

Mary’s condition was getting worse; she took drugs to help control her Parkinson’s which slowed her down. More of a concern was the fact that she was experiencing visual and auditory hallucinations. The visual ones were of small black spiders crawling over her, and the auditory ones were a man singing war melodies non-stop. Both of these, because Mary hated spiders and couldn’t stand hearing war songs non-stop, were very unpleasant for her. I got good advice from the Parkinson’s organisation and Carers UK. In particular Bromley Carers helped me so much and I have nothing but praise for them. At work, I was having difficulty getting in on time in the mornings; usually I was only half an hour late, but it was frowned upon.

I asked for flexible working as a carer but was refused. So I struggled on, expecting the sack, not compassion, at any time.

This is caring For more stories from carers: carersuk.org/features

Mary told me that she would be all right if I went away on holiday, as she had her dog to look after her. I felt guilty but then I always felt guilty when I was looking after Mary, so I paid someone to dog walk and then went away. I phoned Mary three times a day and she said she was okay but some evenings when I phoned, she sounded strange. It was the dementia getting worse but I didn’t realise that at the time. When I returned from my holiday, the house was an absolute tip, nothing washed up and rubbish everywhere. I decided that Mary needed help on a daily basis – she couldn’t fend for herself much longer when I was not there. So I went down the Social Services route and Mary had a couple of ladies who helped with her lunch and tea while I was at work. Although later on when the disease really took its toll, she had about 14 carers per day. I loved Mary so much, yet I disliked her as well. I felt that she was draining every

bit of life out of my body. I was so tired at work and so tired at home. But I always visualised life after Mary and I didn’t like it one bit. She was deteriorating: trembling more, unsteady on her feet, and her head was fixed firmly on her chest. She hated the state she was in. She wanted to be the vibrant, pretty lady of her youth. Mary continued to go downhill. One morning in January 2016, days after her birthday, she had a very bad dementia attack and I suspected an infection. I phoned 111 and an ambulance came to take Mary to hospital. That was the very last time she walked at home. The hospital confirmed that she was suffering from a water infection (again) and would be kept in hospital for a few days. Once in there Mary contracted MRSA, then the Norovirus, and I was informed that she could not come home. Mary was distraught as her sister had died and she wanted to go to the funeral, but the hospital would not allow it. After nearly four months, Mary was finally discharged from hospital. She came home a broken old lady, who could no longer walk, had to have four double handed care visits a day provided by social services,

plus more private ones as I still had to work full time. Mary was bed ridden upstairs in her bedroom. I was still trying to do a full day’s work and being constantly reprimanded by the boss from hell.

One day, I noticed that Mary wasn’t well. She wasn’t really with it; not speaking much and eating like a little bird. I didn’t really want to leave her but I didn’t want to take too much time off work. When I arrived home, Mary was crying and told me she was having a heart attack. I called 111 and spoke to someone who said they would send an ambulance out. When the paramedics arrived, they tested Mary and everything was normal. One of the paramedics said that her blood pressure was

My life was a nightmare, but I never stopped loving Mary and her love for me was unconditional.

2322 @carersuk /carersukcarersuk.org

better than his! That made Mary laugh. I thought that perhaps she had another water infection; they didn’t think she did, but suggested I phone the GP the next day. The next day Mary was no better. I phoned the GP, who told me to start giving her antibiotics and said she would visit the next day if she hadn’t improved. I tried to give her the antibiotics but she wouldn’t swallow them so eventually I decided to dial 111 again. They sent another ambulance. Every time I sent my mother to hospital something worse happened to her. Why didn’t I remember that? This time, I was sending her to her death. At A&E a kind doctor assured me that Mary would be well looked after and that she was being treated for a water infection. She would be staying in overnight. I felt slightly relieved, although Mary was crying.

The next morning, I phoned to see how she was. I was told she was okay and that she had eaten porridge for her breakfast. I was relieved.

She wanted to be at home with me, not stuck in hospital again.

This is caring Connect with other carers: carersuk.org/forum

At her funeral, I set free two doves – one signifying her, and the other my father. Joined at last.

When I visited Mary after lunch, she was lying in a bed just with one sheet on her, and the windows wide open. She was crying, and she said she felt cold. I asked the nurse for more blankets and they brought a couple more. I cuddled her in close to me; it was like hugging an icy milk bottle. The nurses said that she hadn’t wanted anything to eat for her tea, but as she was complaining she was hungry they gave me some tuna sandwiches. Mary was ravenous and ate them all, then asked for a hot cup of tea. Suddenly she started groaning loudly and her lovely blue eyes, normally closed, were now wide open. I managed to find a nurse. She kept telling me how busy she was, but eventually hooked Mary up to a blood pressure monitor. She said that she couldn’t get any reading, that the machine was faulty. She called another nurse and they tried to find a machine which was working. After two more messy attempts they managed to find one which worked. It was giving an extremely low reading of Mary’s blood pressure, about 50 over some other figure which I can’t remember. That’s why they were unable to get a reading – it was because her blood pressure was so low. A doctor came to see us and told me that Mary

had a bad infection, but that she was being treated with very strong antibiotics. Mary was sleeping now, it was getting late and I was tired. I slept well that night, and I hoped that Mary would have improved by the time I got to the hospital in the morning. I hoped that I would be able to go to work the following day. The next morning, I woke up at about 8am because I heard Mary crying. I was just composing myself, ready to get out of bed and rush into her room. I assumed it was her feet that were aching. I suddenly realised that Mary wasn’t at home, she was in hospital. The hospital phoned seconds later. Mary was dead. I felt like a bomb had gone off in my head. I wasn’t really focussing on the nurse. She was crying and said that they had checked on Mary earlier in the morning and she was fine. Apparently, they went back to check on her later and she was dead. I had always promised Mary that she wouldn’t die alone. No one had held her hand. No one had told her they loved her. Her life left her in a spartan hospital bed and I was nowhere to be seen. I had gone over in my mind, many times how I would deal with Mary’s death. I

This is a shortened excerpt of Janet’s long form article ‘Looking After Mary’. Visit carersuk.org/features for the full length version of this story.

would hold her and cuddle her and tell her that she had won the Euromillions. Winning the lottery was always a dream of hers. Near to her death, I wanted her to imagine that the dream had come true. I was desperate to see Mary. I urgently needed the last goodbye. She looked beautiful, like a little doll fast asleep. She looked so peaceful. I kissed her and held her and she was so cold. I cried so much, but Mary didn’t notice.

The sun was bright and there was a gentle wind as the doves soared in the sky.

Afterwards, it was back to my house and everything was a blur. I just wanted everyone to go. A kind friend helped me with the washing up and then I lay down on my sofa with the windows open and fell asleep. I didn’t wake up until after 10pm. I was alone. There was no Mary shouting at me to massage her feet and hold her when she felt pain. She had gone… from this world anyway. And what is my life now? Mary has set me free from the

burden of looking after her. But perhaps it is a freedom I don’t want. I can work full time now without anyone screaming at me that I am late.

I am now like everyone else, I can get to work by 9am.

I can go on holiday whenever I like.

But there is no Mary any more.

2524 @carersuk /carersukcarersuk.org

Forum Q&AQ: My husband is ill…My life has been turned upside down. I play the violin, edit a newsletter, am in a choir, go to several classes, but as he becomes more and more helpless, I feel that I may have to give things up, and I also feel that this would be bad for both of us. More and more he expects me to stay at home; this just makes me resentful. He also used to do all of the shopping. Now, every day, I have to do more and more. I feel alone and isolated.

A1: I think it’s worth asking yourself why he wants you to stay home. Is it because of things you need to do for him, or just because he wants company? If you can analyse his actual needs (as opposed to wants) then you can start to figure out what can be provided by outside help.

A2: If you can, start to introduce some kind of outside help now - it is easier to add more later whereas if he gets used to you and only you then it gets very difficult to change. It’s clear from your post that you are a carer who cares best if caring is balanced with some other interests too, and it is important for your emotional wellbeing that you keep at least some of your outside interests going.

A3: You’re not alone in feeling this way; most carers feel that way and we all support each other.

A4: As a fellow carer, I know how important it is for you to “escape” your caring role for a few hours, but does your husband ever “escape” from the house and you?! Does he have a mobility scooter so he can go to buy the paper, for example?

A5: You say that ‘your husband used to do the shopping’ (as well as other things). Well, have you considered doing online shopping? It’s easy to do and the delivery cost is very reasonable. Or could your husband sit at the computer and do online shopping? This would give him a sense of purpose and it would be one thing less for you to have to do.

Visit the Carers UK forum today and see how sharing a problem or letting off steam can make a world of difference. carersuk.org/forum

I look after my dad and claim Carer’s Allowance. A neighbour told

me that I might be able to get free prescriptions, and I wondered if this was true?

In England, there are certain benefits that entitle you to

free prescriptions, although unfortunately Carer’s Allowance itself isn’t one of them. However, if you or your partner are also getting one of the following benefits, then you should be entitled to free prescriptions:• Income Support• Income-Based Jobseekers

Allowance• Income-Related

Employment and Support Allowance

• Guarantee Pension CreditIf you are not getting any of the above but also get Universal Credit, you should be entitled to free prescriptions if you meet one of the following conditions: • On the date you require free prescriptions, you receive Universal Credit and either had no earnings or had net earnings of £435 or less in your last assessment period (if you are part of a couple, this earnings figure applies to

your combined earnings); or• On the date you require free prescriptions, you receive Universal Credit, which includes an element for a child, or you (or your partner) had limited capability for work or limited capability for work and work-related activity, and you either had no earnings or had net earnings of £935 or less in your last assessment period (if you are part of a couple, this earnings figure applies to your combined earnings).If you are not getting any of the above but also get Child Tax Credits or Working Tax Credits with a disability element (or both), you should be entitled to free prescriptions if your income for tax credit purposes is £15,276 or less.If you do not get any of the above benefits or tax credits, but do have a low income, you could explore the NHS Low Income Scheme. Whether you qualify for help via the NHS Low Income Scheme will depend on your income and your circumstances. If you do qualify, you will either get:

Ask the expertQ

A

I hope this helps, and remember that if you need to talk this through, you can contact the Carers UK Helpline on 0808 808 7777 (Mon-Tues, 10am-4pm) or email us at advice@carersuk.org

an HC2 certificate, which means you should get free prescriptions; or an HC3 certificate, which means you should get partial help with prescriptions (the amount of which will depend on your circumstances). To apply for the NHS Low Income Scheme, you need to fill in form HC1, which is available from Jobcentre Plus offices or you can get a copy by calling 0300 123 0849.

To find out more about help with prescriptions and other NHS costs, visit gov.uk/help-nhs-costs where a simple tool will let you know what your entitlements may be. In Wales, Scotland and Northern Ireland, everyone can get free prescriptions. To find out more about help with other NHS costs, visit:healthcosts.wales.nhs.uk if you live in Walesnhsinform.scot/care-support-and-rights/health-rights/access/help-with-health-costs if you live in Scotlandnidirect.gov.uk/articles/help-health-costs if you live in Northern Ireland

Help and support Get help and support: carersuk.org/help-and-advice

2726 @carersuk /carersukcarersuk.org

Update on Carer’s Allowance Share your experience: policy@carersuk.org

Carer’s Allowance overpaymentsThrough our helpline and online forum, we often hear from carers who have been told that they have been overpaid Carer’s Allowance, which they must now repay. The issue was also highlighted extensively in the media when it became clear that thousands of carers are being asked to repay money, as the Department of Work and Pensions (DWP) looks to recover money mistakenly paid out over several years, with some carers even facing prosecution. Usually, cases of overpayment are the result of honest mistakes or processing errors; but where these situations do arise they can be very stressful for the individuals involved. In particular, when cases of overpayment go back several years, the sums involved can be very large, and can become extremely difficult or even impossible for the carer to repay – adding to the anxiety and distress faced.People are rightly asking how these situations could occur. Some happen because of the way Carer’s

Allowance has been designed; currently the lowest benefit of its kind, it also has the harshest withdrawal rate in the benefits system. If a carer earns just marginally over the earnings limit (currently £123.00 per week after deductions), it can result in a 100% loss of Carer’s Allowance, which is currently £66.15 per week. That means that a carer would lose all of their Carer’s Allowance, just because they forgot – for example – to report an extra hour shift they worked in a particular month. Some of the most common reasons carers have given us for having to repay Carer’s Allowance include:

• having earnings that fluctuate

• differences between earnings that have been averaged out and actual earnings if you are self-employed, and with expenses that can be deducted from earnings

• taking time off for caring within a week

• not reporting a change in circumstances or being late in doing this

• enrolling as a student in full-time education without realising this affects entitlement.

If you receive Carer’s Allowance or know someone who does, avoid the risk of overpayment by

“I received a letter by the DWP telling me that there is a very strong possibility that I have been overpaid Carer’s Allowance for almost three years. As you can imagine I feel sick to the pit of my stomach. I’m incredibly confused with why the overpayment has been allowed to go on for so many years despite me speaking with various benefit departments when my circumstances have changed.”

double-checking that you aren’t earning over £123.00 a week after deductions, and that you comply with all the other eligibility criteria. It is also important that claimants immediately report a change in their circumstances to the Department for Work and Pensions (DWP) (or the Department for Communities (DfC) in Northern Ireland), so that their details are up to date.Carers UK are working to ensure that carers don’t find themselves in this position in the future. We

have provided background information and evidence to the Work and Pensions Select Committee (the group of MPs who scrutinise the DWP), who have adopted a number of our recommendations. We’ve also made a number of proposals to ministers and officials at the DWP for ways to help prevent overpayments from happening in the first place. For example, we would like carers claiming Carer’s Allowance to be able to report changes in circumstances more

easily and quickly. We will continue to work closely with the DWP to make the process of claiming Carer’s Allowance more straightforward.If you would be willing to share your own experiences with us of having to repay Carer’s Allowance, please contact us at policy@carersuk.orgFor more information about Carer’s Allowance, please read our factsheet which is available on our website here: carersuk.org/carersallowance

Keeping Well, Keeping Connected

Carers UK creative w

riting anthology: volume five

Keeping Well, Keeping ConnectedAn anthology of poems and stories Volume five

Proudly supported by With thanks to

Cover photography by Stacy Donne

The Carers UK creative writing competition underlines the power of sharing the challenges, joys and complex emotions that come with caring for a loved one.

This anthology features poems and stories from the 2018 creative writing competition.

However caring affects you and your family, we’re here.

“I am happy to say that this anthology arising from the Carers UK Creative Writing competition, now in its fifth year, boasts work of the highest quality; writing that is intensely moving and ceaselessly imaginative. The poems and stories here continue to further our understanding and deepen our appreciation of the caring experience whilst creating new and positive connections between us all.”

– Cheryl Moskowitz, competition judge

“Well done on another lovely creative writing competition. It is such a great event for us all to get close to the real emotions of other carers. Carers UK put it together with so much thought and passion.”

– Tiggy Walker, Patron of Carers UK

carersuk.org

CUK Poetry Anthology 2018 Cover.indd 1 20/12/2018 12:13

Buy your copy of our fifth anthology of competition winning and highly-commended poems and short stories for £5 Or purchase it as part of a set with volumes one to four for just £17

Available at carersuk.org/anthologyMembers can use the discount code MEMCREATIVE to get 30% off

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