NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

Challenging times

Your members magazine

Issue 46 | Summer 2017

Plus...

Ask the expertFinancial help after caring comes to an end

A movement for changeTaking action together

The extra difficulty of caring in later life

2 carersuk.org

Carers often have concerns if the person they care for isn’t eating enough, this can be particularly worrying after a hospital stay.If the person you care for has recently been prescribed an oral nutritional supplement (ONS) during their hospital admission, they may need to continue taking this when they are discharged. Discuss their nutritional needs with their care team before they leave hospital and remember to discuss any additional requirements with their GP.

Nutricia Advanced Medical Nutrition specialises in the delivery of medical nutrition products and services for all who need it, spanning from the very young to the elderly. We supply high quality feeds, equipment and support services to patients and healthcare professionals.

Find more information at carersuk.org/nutrition or by calling the Nutricia helpline on 0845 250 1011. Download the Nutricia and Carers UK booklets to help you discuss the nutritional intake of the person you care for with their healthcare professional.

Welcome

JOIN US! To become a member of Carers UKT 020 7378 4997E join@carersuk.org

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 AdvicelineT 0808 808 7777 E 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 July 2017

In this edition of Caring we focus on recognition. The importance of recognising ourselves as carers, and the importance of being recognised by others in our vital role.

In our lead feature, Carers Scotland committee member Marie McWaters, explains how help and support opened up when she finally realised she was a carer, 20 years after she began looking after her husband. Together we can all make a difference here. Marie is now raising awareness of caring online and in her local community. It is great to see so many Carers UK members helping other carers get advice and information quickly, making the most of opportunities such as Carers Week (p11) to reach out. The research we published for Carers Week this year showed that 74% of the public think carers are not sufficiently valued. As carers, we feel this keenly and we are determined to create a world where carers are respected, valued and supported.

I’d like to thank every single one of more than 7,000 of you who shared your experience of caring in our State of Caring survey (p16). We have used the research to share the shocking truth that 1 in 4 carers has not had a single day off in five years. I am sure you will raise your voice with us to call for change and better protection of government budgets for respite care.My thanks also go to everyone who voted on the proposed updates to our governing documents. The votes were overwhelmingly in favour of the changes, which I explain in more detail on p14. We’re now in the process of seeking up to five new Trustees. If you have the skills and experience to take on a Trustee role, or know of someone else who has, I’d love to hear from you.

David Grayson – Chairman

In this issue...

Worth recognising

Carers passports

A carers guide:

Recognition

204–7 12–17

A movement for change

Post-election priorities

3

As carers we are indispensable to the people we care for and the work we do is a crucial public service, but sadly many of us feel we are not valued by society.

Carers UK member Marie McWaters tells us about her experiences and shares her thoughts about improving

recognition for carers.

Worth caring about

Help and support

4 carersuk.org

Connect with other carers: carersuk.org/forum

“The first 20 years were very difficult.

I had two young children and very

little support”

aring for older, seriously ill or disabled loved ones

is something we tend to do out of love and compassion.It can feel completely natural and therefore unnoticed – simply doing what a parent, child, partner, friend does when someone close to us needs our care.So natural that we often don’t notice that we’re doing it, until the intensity of the role increases and we reach some kind of crisis.Noticing and accepting that we’re a carer – that what we’re doing is a specific role that’s worthy of recognition – is the first step towards the support that can keep us going.And we need our social systems to acknowledge that we’re a carer and that

what we’re doing is worthy of recognition and support.We need others to recognise the value of what we bring not just to our friends or families and communities but to society as a whole.Without that recognition, we don’t get what we need to enable us to carry on in our vital role.Whether that’s sufficient income to look after loved ones and live our own lives, the opportunity to combine work and care, or respect from health services and involvement in relevant decision making.As Marie’s story shows, we all have a role to play not only in recognising ourselves as carers but battling together for greater understanding in our society.

I’ve just turned 50 and I’ve been caring for more than 30 years. For the first 20 years, I didn’t even know what a carer was, let alone that I was one. I care for my husband, Colin, who has poorly controlled epilepsy which causes him to have multiple seizures a day. As his health has deteriorated my caring role has increased over time. The first 20 years were very difficult. I had two young children and very little support. I was working part-time as a community support worker and my husband was working as a computer programmer. He was seizing four or five times a night and then getting up and going to work. We went from day to day, working around the seizures and the hospital appointments.

Marie’s story...C

@carersuk 5/carersuk

Sleep was a luxury item in our house. My husband’s seizures are mobile, noisy and there’s a lot of banging around. The environment just wasn’t conducive to anyone getting sleep.Ten years ago everything came to a head when my husband got really poorly. We had a six-month period where he had 30 seizures a day. We were in a cycle where he would sleep, seize and wake over and over. The hospital didn’t know what was wrong and they’d tried all of the available drug therapies. We were both totally exhausted and we realised we couldn’t carry on working. The kids were at secondary school and they were struggling. My daughter has said that some days she would go out and she didn’t know whether Colin would be alive when she came back. We moved to be near my parents and they gave me a hand, but there was no other support. Colin was eventually diagnosed with a serious infection.It was around this time that I recognised myself as a carer. While we were trying to get my husband’s

invalidity benefits sorted, social services gave me a leaflet about being a carer. The first paragraph said, ‘Are you caring for somebody?’ I thought, ‘Hang on a minute.’ I read the rest and recognised straight away that I was a carer. Up to that point I thought I was just looking after my family and I just had to deal with it.Social services quickly started to help with a self-directed support package. I felt supported from the minute the forms were filled in, but I hadn’t realised how burnt out I was until it got better. It’s important to identify as a carer, people in our family were suffering – my children were young carers and we just didn’t know. We didn’t even know there was help available. There was a carers centre in a neighbouring town that we had no idea about. It’s hard for people to understand the pressure and real hardship involved

in caring if they’ve never been involved themselves. Isolation is one of the worst things about it. You can feel that no one around you understands what you’re going through. There’s also a lot of negativity in the media surrounding people on benefits that has hurt carers, too. People will look at us and because my husband isn’t in a wheelchair they don’t see a disability and they think, ‘Why aren’t you at work?’ People don’t realise I have a full time job, it’s giving medication, it’s putting someone in the recovery position, a lot of the time it’s physical nursing. I don’t think most people in society realise that carers are working hard and are really struggling financially just to make ends meet. The financial strain makes everything so much more difficult. There are added expenses that you don’t even think about, such as extra laundry or additional heating and equipment. We were burning through washing machines because we had a continual cycle of washing. Every time

Help and support “Sleep was a luxury item in our house... The environment just wasn’t conducive to anyone getting sleep”

“My children were young carers and we just didn’t know. We

didn’t even know there was help available”

6 carersuk.org

and fun stuff like cinemas and restaurants. It’s a wee bit of extra support and a wee thanks, too.I think just feeling

Connect with other carers: carersuk.org/forum

A passport to recognition

something went a bit wrong, I knew there would be a financial burden coming and either we had to try to find some funding from somewhere or find money within the family. I now volunteer as a carer representative for the local health and social partnership and I blog as a carer. I think the more we feel empowered to speak out about our experiences as carers, the more people might understand what we do. There’s still such a long way to go before we can feel valued by society.In North Ayrshire we have a Carers Appreciation Card. It’s been great for those times where you need assistance, but just don’t feel like explaining your situation, yet again. It’s a photo ID and states that I am a registered carer. It entitles me to discounts on practical things like car maintenance, hair cuts and exercise classes

appreciated for the work I do as a carer has given me a boost and made things that little bit easier. It’s brilliant that local businesses are supporting carers with discounts. Ideally, I’d like to see pharmacies and large supermarkets come on board as I think that could really make a positive impact on our finances. Anything that raises awareness of carers and recognises our worth is crucial in changing society’s perception of the role.

Carers UK is working in partnership with Carers Trust on a project to produce a Carers Passport toolkit, complementing existing schemes across England and driving more hospitals, employers, education providers, mental health trust and community organisations to set up new schemes.

It is not enough for a Carers Passport to simply identify a carer. A Passport must also set out how that recognition translates to enhanced support. Whether that’s open visiting hours, discounts, involvement in decision making, or preservation of flexible working arrangements.

“I honestly feel anything that raises awareness

of carers and recognises our

worth is crucial in changing society’s

perception of the role”

Thanks to over 1,700 of you who shared your perspectives on Passports earlier this year.Those of you who have had a Passport told us how it prompted greater recognition and openness about your caring role. The toolkit will spread this recognition further when we launch it this autumn.Watch this space!

@carersuk 7/carersuk

This is caring

I Care: Margaret

Margaret became a carer in her eighties after her partner,

Hazel, was diagnosed with Alzheimer’s disease. Margaret has

found there are unique challenges to being an older carer

8 carersuk.org

– as ministers do. I take a service locally about once a month and consult on various things that I’m still knowledgeable about.

Hazel’s health is pretty good right now, but I know it’s going to get much worse. Her father had Alzheimer’s but it was only diagnosed in the post-mortem, so we both know what’s to come.

At the moment she can still be fairly independent. She can make a nice cup of coffee, but she can’t coordinate the cooking. I make our main meals, but sometimes she prepares a few bits on a tray and I’ll carry it for her. Hazel also has coeliac disease and she used to make her own bread, but she can’t manage it now and we get her special bread from the village bakery. I do most things around the house but we have a cleaner who comes in once a week and tidies up.

I knew something was wrong but I didn’t know what. Hazel’s driving wasn’t very good after she developed cataracts, but as her sight improved after treatment, her driving didn’t. She wasn’t responding and I suspected her memory was already going. I kept thinking: ‘Why is she doing that?’ That’s when I suggested we both take a memory test that our GP surgery had offered us. She needed further tests before they diagnosed her with Alzheimer’s disease about two years ago.

Before Hazel’s diagnosis we were enjoying our retirement. I’m a minister and I was ordained when I was 33 years old. I’ve lived all over the country and I met Hazel when I was a minister in Enfield, London. I’ve been officially retired for over twenty years, but I still do a little bit of work

We play Scrabble every night – to keep the old brains going. I also like to relax with a paintbrush and I have an allotment, so in the afternoons I’m out there with the apple trees and keeping an eye on our soft fruit. Hazel doesn’t join me on the allotment – it’s not her interest and never has been. She’s usually fine back at the house reading.

Hazel likes to do things on her own, but she doesn’t always remember where she’s got to, and can’t find the way home. We have a good community and she always gets helped home by someone. In that way, I feel she’s secure in the village.

There are more challenges to becoming a carer in your eighties. I’m still recovering from my own injuries, which can be difficult. I slipped in wet weather and broke my ankle. I hopped around with

“Hazel’s health is pretty good right now, but I know it’s going to get

much worse”

Connect with other carers: carersuk.org/forum

@carersuk 9/carersuk

This is caring

my Zimmer frame, but Hazel had to care for me quite a lot. It still bothers me on some days, so we support each other.

We’re learning to write things down more. Recently Hazel went off for a loaf of bread, but instead came back with a bottle of cider, so we need to write things down. That said, the shops in our village are very helpful. We’ve lived here for nearly 20 years, since I retired, and really it’s like an extended family.

We renovated our porch for Hazel to sit in, now she

can watch the world go by. People from the village stop to talk to her and I think that’s important.

I had handrails installed by Wiltshire Council and they have also been very useful for Hazel and her tumbles. She’s had a couple of really bad falls. She fell against a brick wall and that took a lot of getting over. It was a difficult fracture that couldn’t be plastered. She had another fracture to the same arm after falling on some steps. It was really quite nasty with three bone breaks.

I think being a carer is part of my nature. I would help anybody in need whether I knew them or not. I felt like I became a carer even before the diagnosis when I noticed something wasn’t right.

I’m now learning to take advice as well as giving it. I speak to friends at a daycare centre, who give me advice on caring for Hazel.

I’m quite aware that I’m older and something might happen to me. Hazel’s brother is also involved and we’ve put things in place that allow for the fact that caring for someone

“I think being a carer is part of my nature. I

would help anybody in need whether I

knew them or not”

“There are more challenges to becoming a carer in your eighties. I’m still recovering from my own injuries, which can be difficult”

Need help and advice?Get in touch:

T 0808 808 7777 E advice@carersuk.orgcarersuk.org/help

at 84 is not ideal. At some point we might need an alternative situation, but not at the moment. When you’re in a close relationship, the last thing you want is to be parted.

10 carersuk.org

Carers Week 2017Brought to life by thousands of carers, supporters and organisations coming together to organise activities and events throughout the UK, Carers Week is our annual campaign to draw attention to just how important caring is

News & campaigns

Carers in the media…Our patron Johnnie Walker led a special segment on his Radio 2 show, when member Heather Smith read her poem A Carers Prayer. He then joined his wife Tiggy in a special Songs of Praise episode dedicated to carers.Amid the election frenzy, we also secured coverage featuring Carers UK members in a wide range of media, from Woman & Home to ITV London.

Carers Week across the UK…Boat races, walks, coffee mornings, pamper days, fun days, information stands... There were over 1,300 registered events and activities in hospitals, GPs surgeries, local carers’ centres, businesses and throughout communities to raise awareness of caring.Thanks to all of you who organised events and distributed information.

Campaign with us: carersuk.org/wecare

Carers online…Others showed their support through social media, making a pledge to support carers and recommending carer friendly organisations to promote good practice.One of the online highlights was a new definition of a carer, which reached a huge audience with a strong message about the reality of caring.

Carers Week in research…Our research report revealed that 74% of the UK public think carers are not sufficiently valued by society. This is evidence we can take to MPs and the Government to strengthen our call for more support for carers. carersuk.org/carers-week-research

Carers Week in Parliament...Due to the timing of the General Election, we held our Parliamentary event just after Carers Week. Fifty MPs joined the event to talk directly with carers and charity representatives to understand the issues better and speak up for carers in Parliament.Carers Wales held a roundtable meeting with Rebecca Evans AM in attendance, while the Scottish Government’s support of carers was discussed in First Minister’s questions.

12–18 June 2017

Carer [noun] /’keərə(r)

Looking after someone?Find out about the help and support available at carersweek.org

[1] Cares (unpaid) for family or friends who have a disability, illness or who need support in later life: Washingbodies.Andlaundry.Anddishes. Keepingappointments.Andrecords.Andtempers. Givingmedicine.Andtime.Andhugs. Fillingforms.Andfridges.Andsilences. Dealingwithdoctors.Andnurses.Andpharmacists. Andsocialworkers.Andbenefitsagencies. Andcareworkers.Andalackofsleep.

[2] Needs support to manage a life of their own.

Penny Mordaunt MP

@carersuk 11/carersuk

News and campaigns

Carers UK has a plan to create a world where carers are valued and supported for the huge contribution we all make.

And we’re all part of that plan!

A movement for change

Sometimes the pace of change in our world feels rapid, and we can barely imagine how things will be in the future.Yet when we consider our own situations, there are moments when we may feel the world is standing still.Perhaps our caring routine feels relentless and we wake

up to the same tasks or battles day after day, with no hint of a break in sight.Perhaps things have been this way for too long for us to believe that change is possible.Earlier this year we published our vision for 2021, breaking down the changes we want to see for carers.

The changes we’re striving for could make a difference to your life as a carer. And each small step forward in recognition and support has the potential to make life better for all of us. Most importantly, we will need to work together as a community and as a movement to bring these changes about.

Do a challenge

event

Hold a coffee

morning

Talk to media

Tell your story

Share your

views

Sign a petition

Get info & supportGive out

information

Encourage another

carer

Start a conversation about caring

Thanks for being a member of Carers UK

Contact your MP

12 carersuk.org

Take action now Get involved in our work on carers’ breaks (see p16)By 2021, we want a world where we can all look after loved ones without putting our own lives on hold.

Part of the plan

Greater understandingOver the past half-century we’ve won some important rights together, but there’s so much further still to go. Recently we’ve had to battle to protect hard-won rights as well as trying to break new ground so we can look after someone without putting our own lives on hold.There can be a big difference between the fresh commitments we’ve seen in party manifestos and real actions that make a positive difference in our lives. So it’s vital we seize the moment to ensure that recognition and support for carers is high on the Government’s agenda. We will need your support in the battle for care services that are there when we need them, for an NHS that supports us, for financial security and for the ability to combine work and care if we choose to.We’re campaigning for funding for carers’ breaks to be increased and protected, because far too many of us are still struggling to take any time away from our caring roles. This can’t go on.

Olga Budimir used Carers Week to talk directly with James Frith MP

and other MPs about the challenges carers are facing

Steph Nimmo’s story, which frames Carers UK ‘s vision for 2021, shows

how unpredictable caring can be.

“it’s vital we seize the moment to ensure that recognition and support for carers is high on the Government’s agenda”

Campaign with us: carersuk.org/intheplan

A lot can change in five yearsCaring can be very unpredictable. Over the next few years some of us will find our caring roles end or diminish. For some of us, caring may intensify, or new caring roles begin. For all of us, there will be some change in our own circumstances or in the people we’re caring for.However caring affects you, we’re here.

If you simply need to draw on support from fellow carers or expert advisers, that’s what we’re here for.We hope being a member helps sustain you.If you’re able to take action, big or small, then you can help to move us all closer to a world where carers feel valued and supported.Where the care we provide is not taken for granted.We can’t do it without you.

@carersuk 13/carersuk

News & campaignsTimely information

The right information at the right time can make a world of difference. Over the past year more than a million carers have visited our website for information, advice and support. With your help, we’re creating a supportive community where carers can share every question, feeling and experience and find answers from people who’ve been there. And we’re distributing information ever more widely throughout workplaces, hospitals, local services – wherever we can reach carers early into their caring role.

Richard Cross (right) used Carers Week to distribute information about caring at a Cancer Clinic

Take action now Sign up to take information about caring to your local hospital or to a faith group you’re part of. By 2021, we want to be reaching two million people per year with expert information and advice about caring.

Positive employersWhile businesses are starting to wake up to the importance of recognising the carers in their workforce, all too often a lack of support and understanding makes it impossible to combine work with caring.Over the next five years, we can change this by building a network of positive employers and campaigning for changes such as paid care leave.

Yvonne Taylor used Carers Week to talk about caring with colleagues

who were quietly struggling to cope with their caring roles.

Take action now Sign up to become a Workplace ChampionBy 2021, we want a world where no one is forced to give up work to care.

Members’ conference 201718 October, 2017, central London.

Our member conference is a great opportunity to get involved in Carers UK’s five-year vision.

RSVP using the magazine cover letter or register online at carersuk.org/memberconference17

14 carersuk.org

Campaign with us: carersuk.org/wecare

In May we invited members of Carers UK to consider proposed changes to our governing documents and to vote by post, online or at a General Meeting on 29 June.Along with changes to keep pace with legislation and good practice, we proposed introducing a Nominations Committee to oversee the recruitment of new Trustees, ensuring we maintain the right skills, experience and

Changes to our GovernanceCarers UK Chairman, David Grayson, explains what’s changed for our members following the Governance Review.

diversity on the Board.

At the General Meeting, the special resolution was passed by a clear majority (96% in support). The vote was independently verified by a lawyer from Russell Cooke solicitors. The changes to our governing documents were approved by the Charity Commission for England and Wales and the Office of the Scottish Charity Regulator.

So, what happens next? We currently have up to five trustee vacancies on our Board. We have now formed the Nominations Committee, which I am part of, together with Rosie Tope, Chair of Carers Wales Committee, and two external specialists in charity Governance.

As a committee we have defined the particular skills and experience we need to bring to the Board at this time – including personal experience of caring as well as relevant professional experience in the following areas:

Finance, Digital, Marketing, and Income generation.

Carers UK Trustees play a vital leadership role, ensuring the charity is equipped and governed effectively, establishing and monitoring strategy and ensuring we are true to our values, keeping carers at the heart of everything we do.

If you believe that you, or someone you know, could fulfil this important role please download the recruitment pack for more information.

I was moved by the sense of being part of something, by the sense of how far we've come... and the sense of everything still ahead.

Interested? Find out more about becoming a Trustee

carersuk.org/trustee

Brenda Murray

@carersuk 15/carersuk

News & campaigns

Give carers a break

The 2017 State of Caring surveyhas revealed that despite thedesire for a break, one in fourcarers has not had a day offcaring for more than five years.

A break doesn’t have to bea week off in the sun, or anexpensive holiday, just a break

These words tell a common story we hear over and over again as carers: “I tried and tried. I’ve not had respite since my son was 18, he is now 25.”This is not a simple issue. Some of us provide complex care that takes a whole team of professionals to match. Those of us caring for children have to trust services to provide the same level of care and attention that we provide. Whether the obstacles to a break are cost related, due to a lack of sufficient care options or the quality of care available, it is simply not right that

so many carers are unable to take a break. Of more than 6,000 current carers who completed our survey, those who had not taken a break in a year or more reported deterioration in their health mentally (73%) and physically (65%). This is of little surprise to us. Working long hours under normal circumstances is considered bad for our health, but if the work we’re doing throws physical and mental challenges at us all day, keeps us from pursuing our own friendships and hobbies, then there’s even more need for down time.

Taking a break was what most carers said would make a difference to improving their health and wellbeing.Our survey showed that it’s even harder to get more than a day’s break from caring. While 40% of carers haven’t had a day off from caring for more than a year, the figure jumped to 58% when considering a whole weekend off, and 73% of carers have not had a week off for over a year. The funds and services that should be available for us

“I’ve not had respite since my son was 18,

he is 25 now”

16 carersuk.org

to take breaks simply aren’t enough.No wonder carers describe themselves as close to breaking point and desperate for time to themselves – to recuperate and see friends and family. “Just to have a complete day free would be magical,” said one carer. Carers UK is calling for an increase to and a ringfence around the funding that provides carers with breaks. We want to see greater transparency and consistency locally over breaks.Those planning and delivering care services and breaks locally must to do better at understanding the needs of their population so that appropriate support is there for everyone, whatever their condition is. To make all this possible we need more funding for social care.

Get involvedDo you agree? Campaign with us carersuk.org/needabreak

Thank youThank you to everyone that completed the 2017 State of Caring survey.If you would like to read the report please visit: carersuk.org/ state-of-caring-report-2017

Campaign with us: carersuk.org/needabreak

From 14 August to 17 September Carers UK is leading the Jo Cox Commission’s focus on carers. The Commission was conceived by the late Jo Cox MP to understand and tackle the causes of loneliness. Since her death this work has been taken forward – co-chaired by Rachel Reeves MP and Seema Kennedy MP and with the support of several charities.

The difficulty of taking time away from our caring role is a major contributor to loneliness. We can be left feeling trapped and isolated, unable to take part in social activities or relationships, or look after our own health and wellbeing.

There are other contributors to loneliness though.

Besides breaks, one of the main causes of loneliness

is understanding.

Caring can be messy. It can be painful – both in the difficulties faced by those we’re looking after, and the challenges we face ourselves as carers.

Carers UK member Dawn Hart (above) explains,

“At times of crisis you quickly learn that most people would rather bury their heads. I remember one friend visiting my child in hospital and the look on her face summed up the fear I sensed in everyone around us.”

This summer we’ll highlight the impact of loneliness on carers and shine a light on the causes.

Alongside our efforts to improve access to breaks, we’ll be seeking to share real stories to improve understanding.

Will you help build the conversation? carersuk.org/loneliness

The silent epidemic

State of Caring 2017

carersuk.org/stateofcaring

“Just to have a complete day free would be

magical”

@carersuk 17/carersuk

When I first posted on the Carers UK forum I was at rock bottom. I was reaching out in desperation that someone would understand. When I logged on the next day and read the replies I was blown away. It felt like I had a team of therapists on tap. I’ll never forget that.

On top of her ongoing mental health needs, my mother was diagnosed with the most aggressive type of lung cancer there is. She rapidly deteriorated physically. We had to have a special hospital bed delivered and had a package of care. Partly due to my mother’s mental health condition I had to play a big part in helping to maintain a good relationship with the care workers.

What was hard is that I have never really had a great relationship with my parents. I tried to limit my time at theirs. Often I wanted to get “in and out” as quickly as possible;

Alex’s caring role increased as his parents got older. When he reached out to the forum, he had hit his lowest point

How you can help

Shed your social mask

fulfil my care tasks and leave.

When I approached the forum I was feeling guilty about rushing my mum’s care. Every single reply I got made me feel like I was talking to a close friend who really understood. It’s a non-judgmental space. You don’t need to wear a “social mask”. You can tell it as it is. Spill your guts out. It has a great mix of emotional support and practical advice. You feel you are among friends – among experts to a degree.

Carers supporting each other are as valuable as any formal therapy or counselling.

My mother passed away in June 2016, but I still care

Get involvedYou too can support carers coming to the forum for the first time as an ‘Online Community Host Volunteer’. Be there to help carers when they need you most, point people towards vital support, online companionship and signpost to the relevant information they may need. Find out more carersuk.org/volunteer-host

You can also support carers through social media – signposting carers through your accounts to reach those who may not even realise they’re caring: carersuk.org/volunteer-social

for my dad. He has multiple long-term conditions and has his own care worker.

I mostly help with evening meal preparation, online shopping, appointments, medication and encouraging him to leave the house. I’ve also adopted a supportive role as he’s become accustomed seeing me daily.

My message to other carers who are struggling is you are not alone. You have one of the toughest jobs out there. Reach out. Help and understanding is available.

“What was hard is that I have never really had a great relationship with my parents”

18 carersuk.org

To get involved in fundraising for Carers UK, email fundraising@carersuk.org or call 020 7378 4952 for more information. We can’t wait to hear from you!

As the sun comes out our fantastic fundraisers don their sports kit and raise vital funds for Carers UK

Chipping in for carers

From the Brighton 10K and half marathon to a golfing day in sunny Northwood (below), the past few months have been jam-packed on our fundraising calendar. The golfing day raised more than £5,000 – enough to fund

our Adviceline for a working week! The gruelling London Marathon, is always a real highlight as Carers UK staff take to the streets to cheer on our flock of runners.In April #TeamCarers hit the streets for the 2017 race. As well as conquering the 26.2 mile challenge, our five runners raised a staggering £10,200 to support carers across the UK. A huge thank you and congratulations to the team for a fantastic achievement!

Fundraise with us: fundraising@carersuk.org

Care for a LaughOn a not so sunny evening in June over 200 people gathered at the Comedy Store, London for a night of comedy at Carers UK’s first ever Care for a Laugh. With a host of comedians including Adam Buxton, Rob Deering and Neil Mullarkey the event had a comedian to satisfy every laughter need. Witty, silly, satirical and occasionally ludicrous the crowd-pleasing event raised a fantastic £1,300!

Paws for thoughtIn 17 venues across the UK you and your canine companion can get fit together while raising money to support carers.

Dog Jog is a chance for you and your dog to run or walk 5km with fellow dog lovers.

As part of #Teamcarers your fundraising target of £100 will help change the lives of carers in your community.

Register for just £10 per human (inc. doggy bag of goodies for you and your four-legged friend)!

A big thank you to all the comedians and to all those that bought tickets or donated during the event.

If you are thinking about organising an event to raise funds for Carers UK, please get in touch.

Our supporters at Buckhurst Hill Residents’ Society have raised more than £1,000 in the past year through fetes and gatherings – thanks to them for all their efforts!

London Marathon 2018Would you or someone you know like to conquer this challenge of a lifetime in 2018? Whether you’re looking to break your personal best, or break in your first pair of trainers, we can help you get finish-line fit. All we ask is that you commit to raising at least £1,900. Apply on online or by emailing hannah.hockin@carersuk.org.

@carersuk 19/carersuk

started I checked that he was eating what he needed to manage his diabetes and kidney function well.Then one day, he had a hypoglycaemic shock and was unconscious, I couldn’t get an ambulance out to us quickly enough and I had to take charge of the situation and take care of him. That’s when I realised that I was his main care giver and that I needed to have more control over his care. It’s taken a lot of learning to get to grips with the complexity of caring for someone who has multiple serious conditions such as kidney and heart failure, but I always read up on his conditions, ask a lot of questions and feel well informed.We’ve also been very lucky that the Bournemouth diabetic centre has been great, as is our renal nurse – Phil is very close to starting dialysis, which has lots of additional complications. I can just call our

A Carer’s Guide to: Recognition

Caring was always in the background to my relationship with Phil – both when we were friends and after we got together 18 years ago. I always knew what might be in store as my husband has had type 1 diabetes for over 50 years. As time has gone on he has suffered from several other conditions that have arisen as complications of the diabetes – heart failure, high blood pressure, balance problems, bowel issues and his hearing is not as good as it used to be now either.I originally gave up my job as a teacher to care for my dad who was terminally ill seven years ago. Around the same time, after a distressing prognosis following a consultation with a neurologist, I began to realise that my husband needed more support, reassurance and care than he had before. I then started to monitor his diabetes, manage his pump and help him with his medication. Once the kidney failure

Gillie, a Carers UK member wrote a guide to surviving as a carer on an online group. Other carers loved the guide, so Gillie’s son produced a poster that people bought and used the words as their mantra when they had stressful days. We asked Gillie to turn her inspirational words to create a guide to recognising yourself as a carer.

“I originally gave up my job as a teacher to care for my dad who was terminally ill seven years ago”

“It’s taken a lot of learning to get to grips with the complexity of caring for someone who has

multiple serious conditions”

Help and support

20 carersuk.org

renal nurse at any time if I have concerns, she’s amazing. My husband’s ill health can cause a lot of stress and sometimes other people’s opinions and ‘well-meant’ comments are hard to hear.

One comment in particular really got my back up, but I have developed quite a tough hide and with my sense of humour I decided to write a survival guide. Sometimes people that aren’t carers just don’t get it and can say flippant things that can be really annoying, so I wrote my guide. But many carers may not even realise that they are a carer and just think they’re helping out. Hopefully between the recognition guide and my survival guide I can help a few more carers get what they need and through the day a little easier.

Connect with other carers: carersuk.org/forum

As our lead feature shows, we can find ourselves caring without really noticing that we’re a carer. Here, Gillie shares some tell-tale signs that we might be a carer:

Gillie’s guide to how to recognise yourself as a carer:

“My husband’s ill health can cause a lot of stress and sometimes other people’s opinions and ‘well-meant’ comments are hard to hear”

To see Gillie’s survival guide go to: carersuk.org/survival

1. You can no longer just ‘pop’ out.Every outing has to be carefully planned and negotiated

4. You shake and smooth your clothesout of the ironing basket to wear them, because there is no time for ironing

Online advice and supportTo connect with other carers and find information and advice visit the Carers UK website and forum on a computer, tablet or mobile: carersuk.org

6. Being up at silly o’clock is normal. Oryou have less than four hours’ sleep butthere’s no newborn baby in the house.

2. The most exciting thing you canlook forward to is the weekly shop.

3. The height of your social life is a chatwith the pharmacist. 8. You turn up late everywhere

because you’ve been getting medicineand driving your loved one to the doctors.

9. You can’t remember the last time youmade a decision based on what you wantor need.

7. You make plans for yourself butnever get time to see them through

5. A hot dinner is a luxury and youeat your meals in instalments.

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Help and support

Ask the expert

I was my wife’s carer for five years, until she passed away last week. We had been receiving help through the benefit system, and now all of these benefits will stop. I am wondering if there is any financial help I might be entitled to, as I’m not state pension age but don’t feel able to return to work yet.

What financial help is there now my caring role has ended?

I am sorry to hear that your wife has passed away. Losing someone can be devastating, and if you were caring for that person the loss can seem even greater.In addition to exploring financial help, I wanted to briefly cover emotional support and practical matters following bereavement. People have to deal with lots of complex emotions and issues when the person that they are caring for passes away and the more information you have, the easier you may find it to navigate the weeks following the death.

In terms of emotional support, everyone reacts differently to bereavement, and there is no right or wrong way to feel. If talking about it, and about your wife, would be helpful you might find these suggestions useful:

• you could talk to family/friends who knew your wife

• you could talk to other bereaved people via the Carers UK forum: carersuk.org/forum

• Cruse Bereavement Care is a charity for bereaved people: cruse.org.uk/crusescotland.org.uk

• your GP or carer’s organisation might know of local bereavement support: carersuk.org/localsupport

There are various practical matters that need to be dealt with when someone dies. There is lots of information on practical matters in our bereavement section carersuk.org/when-caring-ends.

In terms of your financial situation, any benefits your wife was claiming will have stopped now, however any benefits you are claiming as a carer might run on for a while. If you were receiving Carer’s Allowance when your wife died, this should continue for eight weeks following her death. As should the carer premium within means-tested benefits, if you were receiving it.

After these eight weeks you won’t be able to claim benefits as a carer anymore. If you are on a low income you might be able to claim means-tested benefits like Jobseekers Allowance, Employment and Support Allowance or Universal Credit. The benefit system is complicated, so it would be a good idea to get a benefit check, to work out whether there are other benefits you can claim. The Carers UK Adviceline can carry out benefit checks.

In addition to any means-tested benefits you can claim, as it was your wife who died,

Q

Jen from the Adviceline says...

A

22 We’re here for you... Adviceline: 0808 808 7777

Connect with other carers: carersuk.org/forum

and as you are under state pension age, you might be eligible for a Bereavement Support Payment (BSP) if your wife met certain National Insurance contribution conditions. There are two rates:

• if you aren’t responsible for a child you might be eligible for the standard rate, which pays a one off lump sum of £2,500 followed by 18 monthly payments of £100

• if you are responsible for a child you might be eligible for the higher rate, which pays a one-off lump sum of £3,500 followed by 18 monthly payments of £350.

As well as looking into benefits, you should also apply for a 25% single occupancy discount on your council tax bill if you are living by yourself now.

For more information visit our bereavement section at carersuk.org/when-caring-ends.

The end of your caring role may take time to adjust to. When you feel ready you may want to think about learning something new, volunteering or returning to employment. When the time is right for you to think about your plan going forward, you might find it useful to visit our life after caring section at carersuk.org/when-caring-ends.

For carers in Northern Ireland, the When Caring Ends or Changes information is now available in booklet format, thanks to a grant from the Health and Social Care Board.

Find the factsheet at carersuk.org/northernireland /policy/factsheets.

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

Tips from the Carers UK Forum

Get involvedYou can talk to other carers who understand 24/7 at the Carers UK Forum – visit carersuk.org/forum to get started.

My dad passed away this morning. I’m in bits. I keep having moments when I just burst into tears – I can’t help it

I’m so very sad for you, it’s a difficult time. Always remember your dad couldn’t have asked for a more loving, caring daughter than you.

Just remember all your friends on the forum are here for you. Make sure you have something to eat at home. I found it easiest to be home alone after my husband died, then you don’t have to “put on a happy face” for anyone. It’s been a traumatic time for you, now is the time for rest and sleep. If you can’t sleep, ask your GP for help.

You did your very best for him and I’m sure he knew it and felt loved right to the end. It will be tough for you, but always try to remember how well you did for him, you couldn’t have done more.

A few days after my Dad died, I went through our family photos, to remind me of the happy times, selected my favourite ones and set up a memory shelf.

Forum: carersuk.org/forum 23

Recent research has shown that 35% of

carers help the person they are caring for

with their medication – that’s equivalent to

over 2 million people in England alone. It can

often be confusing for you or the person

you care for to know which medication they

should be taking and when.

When patients don’t take their tablets

properly it’s called medication non-

adherence. The consequences of this are

that the patient doesn’t get better or

manage their health condition effectively.

But there is a simple solution. If you

or someone you care about is having

difficulties managing medication then a

simple conversation with your pharmacist

could be all it takes to get help.

There are a range of solutions and support

tools available to help you or someone

you care about take the right medication

at the right time. This includes SureMed

by Omnicell easy to use weekly pill packs.

They include all your medication packed

into individual blisters for different days

and times of the week so patients know

and can clearly see exactly what tablets

to take and when. The pharmacist will put

this pack together for you, if appropriate,

and provide the service and pack for free.

Don’t struggle on alone.

Let’s Take Care of It.

Are you caring for someone with a complex medication regime?

Speak to your pharmacist today.

www.omnicell.co.uk | www.letstakecareofit.com