NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

Campaigning latestEnsuring caring is a priority

Reflecting on relationshipsFinding ways to keep your life in balance

Back on trackFinancial tips for the New Year

Your members’ magazine

Issue 52 | Winter 2020

More of the UK’s carers are getting involved than ever before – thank you

Over 3,000 members posted in our online forum

2019 in numbers...

Our stories were seen in the media

500 million times

We answered over 12,000 helpline emails and phone calls

520 people are now Carers UK Volunteers

More than 140 members attended our Members’ Conference

Nearly

7,500new members

joined

Total number of members in 2019 is almost

27,800

Welcome

CARERS UK HELPLINET 0808 808 7777Opening hours: Monday and Tuesday, 10am-4pm

E advice@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

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 January 2020

For many of us, the new year is a time to set resolutions, and we at Carers UK are no different. We have been working on ambitious plans to ensure that we do all we can to make life better for carers.

We will be coming to you, our members, for your views and feedback to help us shape our new strategy.Coming into effect in 2021 and taking us through to 2025, our 60th anniversary, this strategy will guide us in tackling the issues which can cause isolation, in its many forms, whilst ensuring recognition for the enormity of the contribution you all make, not just in terms of your loved ones, but to society as a whole.Back to this year though, we will work to ensure the new government delivers on their promises, and make sure that carers and their needs are always represented at the highest levels.With every day that passes, fewer older and disabled people are receiving the standard of care they need

and carers are increasingly picking up the pieces. A clear and robust plan for social care reform, including long term investment, cannot come soon enough. You can find out more about our latest campaigning work on page four; making sure that the right for a weeks’ leave for carers in employment makes it in to law.But, as we look to the future, we recognise that this time of year can be particularly difficult for some carers, with the additional financial strains a new year can bring, and the dark evenings and harsh weather making it even harder to keep in touch and connect with family and friends.There is some advice in this magazine which you may find helpful, along with wonderful stories that I hope you will enjoy as much as I have.

Helen Walker – Chief Executive

In this issue...

Campaigning updates

A big thank you

Will I care?

4 10-115

3

Following the General Election that took place in December last year, the Government set out its priorities for this year in the Queen’s Speech. This included over 30 new Bills that will bring in new laws and rights.

Continued campaigning for carers’ rights

Carers UK are delighted that – thanks to our campaigning and the help of our supporters and members – the Government announced that one of its priorities will be to introduce a new right for a weeks’ leave for unpaid carers in employment. This is a huge step for the 5 million working carers who struggle with tiredness, stress and looking after their own physical and mental health while balancing work and care. But it is also beneficial for employers, who should see improved productivity and retention

as a result of investing in staff wellbeing. This is by no means the end of our campaign: the Government will still need to bring the right to care leave into law, and we still want to ensure that care leave is paid.. We know our supporters will help us campaign to improve working carers rights’ in the employment bill. We also know there are millions of people across the UK caring for a family member or friend. Cumulatively, carers play

News and campaigns

Cumulatively, carers play a vital social role, providing care worth £132bn each year – equivalent to a second NHS

a vital social role, providing care worth £132bn each year – equivalent to a second NHS. Despite this, they are in urgent need of increased support and recognition to enable them to make decisions about how they care, and so they can live a fulfilling life alongside caring. With many carers feeling unsupported and hidden from society, we want to ensure that they are top of the Government agenda. Beyond workplace rights, the Government will be bringing forward plans to implement the NHS long-term plan. We believe this is a real opportunity to ensure the NHS recognises and is required to support carers. Our social care system is near breaking point, held together by unpaid carers for too long. We were pleased that the Government have said they will tackle this and find a cross-party consensus. It is simply not right that carers struggle financially because of their caring role, yet a shocking 1.2

4 carersuk.org

Read our carers’ manifesto in full at: carersuk.org/manifesto19

million carers are living in poverty. Two thirds of carers providing substantial care pay towards the cost of care for their loved one. As a result of this financial strain, many are unable to plan for their own futures. We will continue to campaign with you to ensure that carers can plan for their retirement and to raise the level of Carer’s Allowance.

Your support is essential to us being able to help improve the lives of unpaid carers in the UK. We look forward to continuing to campaign with you in 2020, making sure unpaid carers are a top priority for the government, and would like to thank you for your existing support.

A shocking 1.2 million carers are living in poverty

Most people don’t anticipate having to care for someone at some point in their lifetime. Back in 2017, when Carers UK asked people how likely they thought it was that they would provide care for someone, just 4% of non-carers thought it was ‘very likely’.However, new research by Carers UK, in collaboration with the Universities of Sheffield and Birmingham, reveals that two thirds of people in the UK can expect to become an unpaid carer at some point. The research, Will I Care?, was released to mark Carers Rights Day in November, and found that UK adults are just as likely to care, unpaid, for a loved one as to own their own home. This shows how prevalent caring has become in our society, with the average person having a 50:50 chance of caring by the time they are 50. The impact isn’t neutral across sexes: women have a 50:50 chance of providing care by the time they are 46, whilst that same 50:50 chance doesn’t hit men until age 57.

Our new research reveals that providing unpaid care will be a reality for two thirds of adults in the UK

Will I care?

Patterns of caring are also different across the UK’s four nations; the percentage of adults who had been carers during their adult life was 70% in Wales, 65% in Scotland, 66% in Northern Ireland and 63% in England.

Carers Parliament ScotlandCarers from across Scotland attended this Edinburgh event in October. The theme was ‘Diversity of Caring’ and Judith Robertson, Chair of the Scottish Human Rights Commission, chaired, with government ministers also addressing the Parliament. Carers highlighted key issues that affect their lives in workshops and informal discussions.

The average person has a 50:50 chance of caring by the time they are aged 50

But only

4%of non-carers thought it was ‘very likely’ they would have to care at some point in their lifetime

Continued...

@carersuk 5/carersuk

Variance of care givers across the UK

News & campaigns Campaign with us: carersuk.org/news-and-campaigns

Our State of Caring Survey, the UK’s most comprehensive research into the lives and experience of carers, will open in February.

State of Caring Survey 2020

To find out more visit: carersuk.org/stateofcaring

Our call for commitmentCarers UK is urging all political parties to commit to delivering long term investment in social care, so that millions of people can look after loved ones without putting their lives on hold. It is also calling on all parties to better recognise carers within public services, including placing a legal duty on the NHS to identify carers and promote their health and wellbeing.

Despite caring being something that will feature in the majority of our lives, it is not something many people plan for. For too many people, this results in not being able to get the right advice and support, which can have a huge impact on health and wellbeing – from long-term physical health effects, to mental ill health and social isolation.

To read the full report, visit carersuk.org/will-i-care

Our Chief Executive, Helen Walker, said:

“Many of us don’t expect to become an unpaid carer but the reality is two in three of us will do so in our lifetimes. Our research shows women are disproportionately affected, facing difficult decisions about their loved ones’ health, family finances and how best to combine paid work; and they become carers more than a decade earlier than most men.

“The government has to make sure this ‘gender care gap’ is addressed by giving carers a right of five to ten days of paid care leave. It must also prioritise sustainable, long term investment in our social care system so that millions of people caring for loved ones can stay in work and look after their own health.”

“Our research shows women are disproportionately affected”

65%Scotland

70% Wales

63%England

66% N. Ireland

6 carersuk.org

Last year, over 7,500 carers shared their experiences and helped inform our State of Caring 2019 report. Your responses enabled us to provide comprehensive evidence to the committee of MPs who scrutinise the work of the Department for Work and Pensions, helped us push for improvements to the NHS and was at the heart of calls for more funding for social care.

Please help us push for more support for carers by taking part in our 2020 survey.

@carersuk 7/carersuk

Find out more at myfoothold.org

Foothold, The Institution of Engineering and Technology Benevolent Fund a company limited by guarantee. Registered in England. Registration No. 00441284. Registered charity No. 208925. Registered office: Napier House, 24 High Holborn, London, WC1V 6AZ, United Kingdom.

WHO CARES?WE DO.

Caring is challenging, but it shouldn’t be unmanageable. If you or your partner is an engineer and you have less than £50,000 in savings, we can help.

respitetechnology

benefits advicecarers wellbeingfinancial support

home adaptations bespoke equipment

Foothold-Carers Mag Ad-A4-Nov19-v6.indd 1Foothold-Carers Mag Ad-A4-Nov19-v6.indd 1 02/12/2019 10:5502/12/2019 10:55

News and campaigns

Last year we celebrated the 10th anniversary of EfC! We are proud to say we now have 150 members across the private and public sector, not for profit organisations and local authorities. There are 2 million employees who are covered by our member organisations across the UK. EfC’s main purpose is to:

• Provide practical advice and support for employers seeking to develop carer friendly policy and practice and retain skilled workers

• identify and promote the business benefits of supporting carers in the workplace

• influence employment policy and practice to create a culture which supports carers in and into work.

Craig’s story Craig works for PwC, a founding member of EfC. He also cares for his seven-year-old son Morgan, who has cerebral palsy and autism. One of the things that Morgan experiences, because of his autism, is an exaggerated separation anxiety, which is particularly acute in the mornings. Craig knew that changing his working pattern so that he could leave the house after his son would have a hugely beneficial impact for the whole family, and PwC supported him in making this change.

“Because of Morgan’s anxiety, in 2017 I made the decision to ask for flexible working hours so that I could do what was best for my family. Being able to adapt my working hours was a win-win situation for everybody. If you need to make changes to fulfil your primary caring responsibilities don’t feel guilty about it. You will be able to bring your best self to work if you look after yourself.”

Employers for Carers (EfC) is Carers UK’s membership forum for employers who want to support the people in their workforce who are carers.

Supporting more carers in the workplace

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Read more about your rights at work: carers.org.uk/work

What is Carer Confident?The Carer Confident benchmarking scheme supports employers to build an inclusive workplace for carers to make the most of their talents.There are three levels, Carer Confident Active, Accomplished, and Ambassador. Following the launch of the benchmark in January 2019, we now have 11 carer confident employers across the corporate sector, public sector and government departments ranging across all three levels.

For more information about Employers for Carers or the Carer Confident benchmarking scheme please visit: employersforcarers.org/

“Working with Employers for Carers was invaluable in setting up a Carers Network in a large and complex Government Department. They were always on hand to provide practical and common sense advice and to offer a helping hand. The result, I am delighted to say, is a thriving and proactive network which supports people with what are quite often complex caring responsibilities, including caring at a distance.”

Former Senior Diversity Adviser, FCO Services

“The provision of support and useful information for our staff, via your website and helpline, is invaluable; helping us to raise and maintain awareness of the issues staff and the organisation face.”

HR and Equalities Specialist, Transport for London

“We want to make our workplace as inclusive as possible. Being a member of Employers for Carers allows us to understand the impact caring can have. As a growing number of people have caring responsibilities it’s important we enable colleagues to do their caring role alongside their work.”

Chief Operating Officer and carers’ network sponsor, Financial Ombudsman Service

How do Carers UK help support Carer Confident employers?

Some examples of how we have helped include:

• reviewing members’ workplace policies

• holding information stalls at events (eg during Carers Week and Carers Rights Day)

• joining speaker panels at wider events held by our members (eg health and wellbeing events)

• running workplace discussion sessions for employees and for managers

• each member also has a dedicated account manager who is available to answer any queries and to support employers throughout their membership.

What have employers said about EfC?EfC’s members reflect on how the service has helped them support carers in their workforce.

@carersuk 9/carersuk

We want to say a huge thank you to all the fundraisers and volunteers who supported our work in 2019. From sharing our information online to holding events in your local community, from climbing mountains to running in fancy dress, you went above and beyond to help us make sure no one has to care alone – we couldn’t have done it without you!

How you are helping carers

Meet our volunteers and fundraisers

Simon and his friend travelled 1,500 miles through India in a tuk-tuk, raising £505 for Carers UK.

The Fazackerley family hosted a beautiful 16th birthday ball to celebrate the life of their daughter Bobbi, raising £3,007.

During Carers Week, volunteer Norman organised a walk for unpaid carers in Stevenage and raised £2,296.

Our youngest fundraiser was 8-year-old Elsie, who completed the Yorkshire Three Peaks with her family and raised £720!

The Papaioannou family organised a 20 mile walk with friends and family in honour of Dmitri and Anna, raising £5,309!

Kirsty and Shane took on a year-long challenge in memory of their dad. They completed over 10 runs over the year, all in amazing homemade fancy dress.

SimonElsie

NormanPapaioannou Family Fazackerley Family

Kirsty & Shane

10 carersuk.org

Volunteer newsSeven Local Awareness Volunteers shared their experience as a carer with their nearest ASDA Academy to give them a real insight into caring. Feeling inspired, the academies went on raise £2,200, which far exceeded their £1,700 target.

Massive congratulations to Volunteer Ambassador Linda Jaggers from South Wales, who was elected as the first carer to sit on the West Glamorgan Carers Partnership Board.

For Carers Week, Vinesh, Htay and John hosted an information stand at Moorfields Eye Hospital and spoke to patients, carers and staff about the support available to carers.

Volunteer Ambassador Anne Barnes recruited a record-breaking 11 Carers UK members during the space of three hours at an event hosted by Birmingham Carers Hub.

Social Media volunteer and Self-Care Coach for Carers Abbie Fish hosted our first ever virtual Care for a Cuppa via webinar for Carers Week. You can watch the webinar by visiting https://bit.ly/2MYFiA3. You can also join Abbie’s ‘Self-Care Community with Abbie’ Facebook group for tips on self-care.

For Volunteers Week 2019, we released our first ever volunteering promotional video. A big thank you to all the volunteers who got involved. You can watch the inspiring video by visiting carersuk.org/volunteer.

Read more about getting involved: carers.org.uk/takepart

#TeamCarers 2020 Do something you love. Do something you didn’t think you could do. Do something incredible to make life better for carers.

Email fundraising@carersuk.org to see our full 2020 events calendar.If a challenge isn’t for you, please share with your friends, family and colleagues.

In 2020, why not join Team Carers - our incredible community of events fundraisers. Whether you fancy trying a short fun run for your first ever challenge, or are a seasoned pro keen to take on a long distance event, we’ll have something for you!

Events in 2020 include:

31 May Run4Colour 5K, East Anglia

5 July Wales 10k, Tenby

16 August Prudential Ride 100, London

30 AugustLap the Lough, Lough Neagh

20 SeptemberSpartan Sprint, Edinburgh

@carersuk 11/carersuk

On Wednesday 22 January The Association of Charitable Organisations (ACO), who represent 120 benevolent funds and grant-giving charities, ran their first national awareness campaign to show how these charities help people in need.

This is caring

One Day Changes Lives

A life can be changed in just one day, if you know where to look. People know big-name charities but are often unaware there are hundreds of charities across the country that offer support to people going through difficult times. ACO’s campaign, One Day Changes Lives, seeks to change this and show how in any day in an ACO charity’s office lives are being changed.

What are benevolent funds?Most benevolent funds were established to help professionals hundreds of years ago, before the welfare state existed. Despite their centuries-old heritage, these charities are used more than ever today to help people during challenging times. Most award financial grants when someone faces a sudden unexpected or life-changing crisis. This could include someone, or a family member, suffering an unforeseen illness or

disability, or redundancy, leaving them unable to work or facing additional costs. Or a sudden household repair or unexpected bill could ruin an already struggling family. This is where grant-giving charities can step in to help. These charities are also increasing the services they offer to help people get back on their feet, such as mental health, wellbeing and counselling services, offering career or legal support, and operating befriending services to combat loneliness. For carers, there are a whole host of support services available from ACO member charities. Each charity has their own eligibility requirements, but in most cases they only require that the applicant, or a family member, has ever worked in a certain career, or been a member of a certain group, to be eligible. ACO has a huge range of member charities that support people from engineers and nurses to retail staff and entertainers.

Are you a carer in need of support? The Carers UK website has information about finding and applying to grants and schemes. Visit carersuk.org/grants-and-schemes to find out more.

Or visit ACO member Turn2us, who can help you search for a grant, at turn2us.org.uk.

About ACOACO brings together 120 charities in order to encourage collaboration, learning and best practice in the sector, while also representing member interests.

To find out about the good work charities are doing every day to transform lives and make more people aware of where they can turn to during difficult times, follow ACO on social media (@acobenevolence) and check out the hashtag #OneDayChangesLives.

For more information visit www.aco.uk.net/page/One-Day-Changes-Lives.

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Find out more: carersuk.org/grants-and-schemes

Tony’s story Tony had been working for the Royal Mail for 28 years before he developed spinal problems, leaving him in severe pain, his mobility compromised and unable to work. He now relies on his wife, Lisa, to do most things for him.

“It’s frightening: you don’t know what the future holds. You don’t know where the money is going to come from. Because I’ve got so many different skeletal problems my GP did say it would benefit me to get an adjustable bed. But how could we buy an adjustable bed, they’re a fortune.”

They applied to the Benenden Charitable Trust, a grant-making charity that provides financial assistance to people struggling due to a medical condition, largely members and ex-members of Benenden, but there are

circumstances where they can help non-members.

“When I applied to Benenden initially it was just a phone conversation, and I talked to Thom who was amazing. I only had to do the one application form and then he really did a lot of the other work for me, it was amazing it was so easy.”

Because of Tony’s employment history of 28 years with the Royal Mail, Benenden Charitable Trust worked with the charity attached to the Royal Mail, the Rowland Hill Fund, to get Tony the maximum help possible.

“The difference the bed has made has just been huge. Less pain, less interrupted sleep, and more comfortable. It’s made so much difference,

I don’t need to be propped up with pillows. Even getting in and out of bed is easier because I can raise myself up to a position, swing my legs and get down. We would never have been able to afford what they provided us with. It would have taken us a long time and I think the pain that I would have gone through in that time would have been immense.

“I just cannot thank the charities enough for what they’ve done. I actually got emotional when we heard that we were getting something because in this day and age no one gives you nothing. You don’t get nothing for nothing. It just made me feel a bit more that there are some good people around. It’s not all doom and gloom.”

“I just cannot thank the charities enough for what they’ve done... It just made me feel a bit

more that there are some good people around”

@carersuk 13/carersuk

This is caring

“The more I realised that nobody else was in this position, the more isolated I became”

Prakash Radhakrishnan is the youngest of four children. Two of his siblings have severe learning disabilities and varying degrees of epilepsy; his sister who is 45 and his twin brother who is 38.

Growing together: caring for my siblings since childhood

My first memory of realising something was different is from when I was five. I couldn’t understand why my twin brother was always shouting and laughing. I remember asking my mother and she replied, “He is a special child”. That didn’t mean much to me as a five-year-old, so I thought that it was normal for my brother to be the way that he was, and that it was just his personality.

“Other early memories are of picking up and dropping off my sister. At the time, she didn’t live at home but in a centre for children with learning disabilities and only came home on weekends.

“My sister was the polar opposite of my brother, and was very quiet and mostly kept herself to herself. The centre was a 45-minute drive each way, which for me felt like forever. But hey, I did what any child would do in the 1980s and

counted how many cars passed until I fell asleep from boredom.

“As I started to go to school, it soon became very apparent that I was the only one in school that had siblings like mine. Others went to parks, family events or even on family holidays with their siblings, while I spent my time at home, in a car, or helping my parents care for my siblings.

“The more I realised that nobody else was in this position, the more isolated I became. I just went to school and came home to do my homework and help my parents. I had nowhere to express how I was feeling.

“When other children found out about my siblings, it led

to years of severe bullying.

“The more I was bullied, the more I saw it as normal and ‘just how life is’. I didn’t feel I could share it with anyone at school or home because my parents already had a lot to contend with, looking after my siblings.

“Eventually, when her centre closed down due to funding issues, my sister moved back home. This caused its own set of challenges, as she was not used to being at home all the time, but I’m also glad she moved home because I got to spend more time with her, and all my family were under one roof.

“Both my eldest brother and I had to be responsible from a young age in supporting our parents, while at the same time dealing with growing up and, importantly, passing exams and getting a good education, which thankfully my parents ensured we achieved. The

14 carersuk.org

Connect with other carers: carersuk.org/forum

“I’ve embraced my habit of getting up at the crack of dawn, thanks to my brother waking me up in my childhood days, and now go for early morning walks or to the gym”

“But now life has thrown me a new challenge: how can I maintain their routine if I’m not in good health?”

big change for my siblings came when my eldest brother went to university. Both my sister and twin brother were extremely attached to him and it took many months to settle them.

“Now I’m an adult sibling carer to my sister and brother. I have found a partner, who welcomed both my siblings with open arms and is now a major part of their life as they are of hers.

“In 2016 I had to undergo open-heart surgery (which came as a shock) for a congenital heart problem I didn’t know I had. Due to the nature of my surgery, I was unable to be around my

siblings for the first three months of recovery, and then had to slowly increase my interaction with them as I got my strength back.

“During my recovery, I became very conscious of my health and how maintaining it was paramount in ensuring I was an effective carer. This was something I’d never considered before, when all I knew was how to maintain my siblings’ routine. But now life has thrown me a new challenge: how can I maintain their routine if I’m not in good health?

“As a result, I have had to make changes. I’ve embraced my habit of getting up at the crack of dawn, thanks to my brother waking me up in my childhood days, and now go for early morning walks or to the gym.

“Although my role as being part of my siblings’ world whilst also trying to create a life of possibilities for myself has been an emotional rollercoaster, I love them and want the best for them both. While I often felt like I didn’t belong growing up, the more I learned about life the more I realised that there is no set format to anything.

“I’m a unique individual with two amazingly cheeky siblings, who are both full of happiness and love. Things will continue to change with time, but my siblings have taught me to adapt and focus on what is important.

@carersuk 15/carersuk

How you can help

We hit the road during 2019, holding events where carers connected with each other, found out how we’re championing carers’ rights and received health and wellbeing tips.

In May we were in Luton at the Carnival Arts Centre, sharing ideas, holding information stands and helping carers in the area connect with one another. 100% of the attendees who completed their feedback forms said they would recommend the event to another carer. Highlights included a talk from longstanding volunteer Valma James and a session on nutrition led by Lynne Stevenson, who works for Carers UK partner Nutricia.In July, we hosted an event in Birmingham with local carers’ organisation Carers

United. It was our best attended roadshow event, with over 60 carers joining us on the hottest day of the year. The event also gave us the opportunity to recognise long-serving volunteer and Carers UK founder member Gill Doherty for her commitment and support of carers in the Birmingham area. Jacqui Darlington, a member and volunteer, shared her powerful story of caring for her son and how that inspired her to volunteer for Carers UK. Finally, in November we were in Manchester where we hosted an event with

Gaddum, a local organisation and affiliate member of Carers UK. As well as holding an information stand, Gaddum’s Chief Executive Lynne Stafford spoke about their services and the introduction of their new ‘Being a Carer’ resource, which was developed with Carers UK. Carers UK volunteer Wyn Higham, from Warrington, delivered an inspiring talk about her experience as a carer and volunteer. It was a brilliant event, with 92% of attendees telling us they thought it was excellent or good.

Hearing from our members, from across the UK

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Visit carersuk.org/volunteer to find out more about volunteering for Carers UK

Volunteer with us: carersuk.org/volunteer

We asked our Volunteer Ambassador, Anne, to tell us about herself and her volunteering.

Why I volunteerAnne Barnes

Why did you choose to volunteer for Carers UK?I chose to volunteer for Carers UK because they are the only membership-led national voice for carers. They have a great reputation which holds sway with national and local government. I feel that together we can really make a difference for carers. I have volunteered for many organisations over the past 20 years, mainly in roles that support parent carers, and I’ve found that Carers UK really appreciates and values its volunteers better than most. Volunteering is easy and you are well supported to do as much or as little as you feel you can. There are lots of other volunteers, and it’s great if you can attend events together. There’s also support on our own Carers UK volunteers Facebook group.

Tell us briefly about your caring experienceAt the moment I am the main carer for my 21-year-old son, who has both physical and learning disabilities. I did have a daughter with the same condition who was older than my son, but sadly she passed away three years ago. My son currently attends a specialist day college where he is thriving.

What difference do you feel volunteering makes?

Being able to speak to other carers and share information makes a huge difference. It’s not only knowledge that you’re sharing – it’s also empathy, which can really help if someone is feeling isolated due to their caring role.

Describe what it means to be a volunteer in one word?In one word... rewarding!

We’d love to meet you in 2020!We’ll be holding more carers’ events this year, with upcoming dates in London and north Wales.

Keep an eye out for more information from us for your opportunity to meet other carers local to you and share your experiences.

You’ll also learn about carers’ organisations and other groups that offer support nearby.

@carersuk 17/carersuk

Maintaining friendships and good family relationships amid the challenges of caring can be hard. Carers UK member Alison Cram, whose father Sandy lives with the impact of traumatic brain injury, stroke and dementia, shares her experiences and tips about this crucial issue.

I care for Dad in ways I would never have imagined a decade ago. This morning I helped him to drink his tea and eat his porridge; I brushed his teeth and combed his hair; I washed him and put on his clothes; I settled him in his comfortable chair and snuggled some blankets around him to keep him warm.

This is caring

A carer’s guide to:

Relationships

“Doing these personal tasks for Dad has undoubtedly brought us closer. There are many lovely aspects to this intimacy. I’ve learnt to appreciate him while he’s still here; I’ve learnt to treasure small moments with him; I’ve learnt to tell him I love him.

“But spending so much time together has its

downsides. As Dad’s health deteriorates, he’s more dependent on me for emotional support, practical help and social interaction. With his communication difficulties and his dementia diagnosis, many family friends have melted away. He cannot be left on his own and is only happy leaving the house for short periods.

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Connect with other carers: carersuk.org/forum

“Sometimes that need for constant attendance and his reliance on me can feel relentless. No matter how much we love each other, we all need time away from the idiosyncrasies, habits and demands of our nearest and dearest. Sometimes stress and tiredness make me grumpy, so no doubt Dad needs a break from me, too.

“Fortunately, I have good support, both from wonderful paid carers and from my two siblings. My brother lives here and provides great hands-on support. My sister lives much further away but visits when she can and is a good listening ear for emotional support. In many ways it has brought the three of us closer, as we see and hear far more of each other than we ever did before. Nevertheless, we are three people with different temperaments and strong

opinions and reaching agreement on the best way forward hasn’t always been easy. Ultimately, though, doing the best for Dad remains our shared aim and we recognise we can’t do that without each other. Keeping that in mind has allowed us to negotiate the bumps in the road and stay on good terms.

“That support also allows me time out to see friends. As a single person with no children, friends are vital but it’s amazing how quickly you can drop off the social radar and out of people’s consciousness. In what free time I have, I try to give friends some priority

– they’re more important than hoovering the hallway or darning Dad’ socks.

“Nevertheless, there are many times when I have to turn down invitations or cancel at the last minute. It’s especially hard maintaining friendships with those who live further away. I need at least a whole day free in order to meet up and that rarely happens. I have several dear friends that I haven’t seen for years and that saddens me.

“I’ve had to learn to be more open about the difficulties and let friends help. Even small things count. One long-distance friend phones me diligently every month for a quick chat while another local pal continues to invite me to local

events, even though she understands that 99% of the time I can’t make it. It makes me feel wanted and not forgotten.

“So when it comes to relationships, my top three tips are:

Be honest with friends and family

“Share the challenges you face and their impact on your relationships. Never be afraid to ask for help and make suggestions – often people would like to help but just don’t know how.”

Find easy ways to keep in touch

“Sending a text or a postcard may not sound like much, but at least you remain a visible presence in others’ lives. Frequent short communication is better than trying and failing to find time for that long phone call or a lunch date.”

Find support“If you are feeling isolated or relationships are under strain, it’s important to find a neutral person to talk to, be it an online forum, telephone helpline, local carers’ group or counselling service. And don’t forget that the person you care for may welcome a similar opportunity.

Read more of Alison’s writing at alisoncram.com

“I’ve had to learn to be more open about the difficulties and let friends help”

@carersuk 19/carersuk

In this second instalment from her diary, Dawn recalls her father-in-law losing sleep over financial worries and their concerns about keeping him and his money safe at home.

Dawn’s Diary

A letter from the past

The letter

Midday and John’s puzzling over a letter in semi-darkness. ‘I don’t know if I need to do anything,’ he says, handing it to me. ‘It’s about my shares.’

The letter, typed on a proper typewriter and dated August 1993 is from a unit trust company, asking him to confirm his details and giving him an investor number. At the bottom there’s a box to enter a change of address and he’s filled in his name and address, including postcode. On the back he’s written:

“I am taking action because I haven’t been paid the money I should have received. I was a leading trackman on the Saxilby

- Lincoln route for many years.”

‘John, this letter’s from 1993,’ I laugh. ‘I don’t think you need to do anything.’

‘Why, what is it now?’ He looks at the super duper dementia clock.

‘2018,’ I say, ‘so this letter is

twenty five years old.’

‘Is it?’ He takes it back and peers at it and I show him the date typed at the top.

He laughs and says he can’t think where he got it from.

‘It’s a good job you came, I would’ve sent that off. Do you want to take it and show David?’

‘No, you show him when he comes tomorrow,’ I say.

‘Well, I need to talk to him about my pension anyway,’ he says, ‘If he’s going to keep getting it for me. I’ve not got much left.’

‘Have you got enough money for today?’

‘No, not much.’

‘Is it in your pocket?’ I ask. ‘How much have you got in there?’

He pulls out seventy pounds. ‘Where did I put that letter?’

He roots around beside the chair and, finding it, looks at it again.

‘I don’t know where this came from,’ he says.

‘It’s probably out of that drawer,’ I say, ‘from when you were looking for Christmas cards the other week.’

He looks doubtful. ‘I can’t be trusted anymore. I used to do it. My dad showed me how to do shares. I was all right at Maths, I passed the school certificate. And in Latin and French.’

“John, this letter’s from 1993,” I laugh. “I don’t think you need to do anything”

20 carersuk.org

Connect with other carers: carersuk.org/forum

and advice slip and John seems pleased. ‘Well, I shall be able to give Kathleen a bit more now shan’t I?’

‘It’s your money Dad, you can do what you want with it.’

‘So if I wanted to go on holiday I’ve got enough?’

‘Yes, you’ve got enough. I’ll keep getting cash out as you need it,’ David says, ‘but I don’t want you building up large amounts of money in the house because it’s not safe.’

David reminds him about the six hundred pounds he found a few weeks ago, but John seems not to register what he’s saying.

‘Well, I’m glad you’ve explained all that because I’ve been losing sleep over it.’

‘Dad, I’ve explained all this to you before,’ David says wearily. ‘We talk about it

John’s pension

The next day David and I arrive to find John sitting in his chair with his coat and hat on as though he’s just got in. ‘I saw my old mate off the railway,’ he says. ‘I told him I’ve not been getting my pension. He thinks it’s disgusting, he said I need to get something done about it.’

It seems he’s been over to the old post office this morning and, very likely, has been harassing them about his pension again.

‘That young lass who works there, she looked a bit fed up with me.’

‘Dad you’ll get me put in jail if you keep telling people I’m not giving you your pension,’ David says.

‘What?’

David goes over everything again: how the post office has moved to the other end of the village, how he’s been getting John’s pension out for him. John pleads poverty again and when asked to check his pockets, again pulls out seventy pounds.

‘So I’m finished with them now am I?’

‘I’ve been to the post office this morning,’ David says,

‘and withdrawn a hundred and fifty pounds. You can see on here what your balance is.’ He hands over the cash

every time I come, it’s just that you can’t remember.’

‘Well, thanks for putting me right. I shall be able to get some more coal now, won’t I? Who do I get it from?’

‘I’ve been ordering it from Grimes. I’ll get you some more in a couple of weeks.’

John adds the cash to the money already in his pocket.

‘So you’ve got two hundred and twenty pounds there,’ I say. ‘That should be plenty for the week shouldn’t it?’

I remind David to put some coins in the tin so John has change for the church collection, and though it seems we’ve covered the money situation from every conceivable angle, I can’t help wondering how long it’ll be before John calls us again to tell us he’s got no money.

“David reminds him about the six hundred pounds he found a few weeks ago, but John

seems not to register what he’s saying”

@carersuk 21/carersuk

Help and support

Feeling the pinch post festive season?

1. Get all the help you’re entitled to Carer’s Allowance is the most obvious benefit that’s worth looking into if you care for someone. But it’s also worth checking if the person you are looking after is claiming all the benefits they’re entitled to.See our website for more details and consider getting a benefits check if you’re unsure. Several organisations have online benefits calculators where you can check what you could be entitled to including benefits-calculator.turn2us.org.uk/AboutYou.

2. Travel lighterIf you’re caring for someone with certain disabilities or have a disability yourself, you could see if you’re eligible for a Blue Badge for parking concessions. Contact your local council or the Blue Badge Unit in Northern Ireland (0300 200 7818).

• If you receive certain disability benefits already, you could perhaps get help towards leasing a car or scooter, for example, through the Motability scheme: motability.co.uk.

• Getting a Disabled Person’s Railcard could also help you cut down on your train fares. Call 0345 605 0525 or visit the Disabled Persons Railcard website: disabledpersons-railcard.co.uk. Although this isn’t available in Northern Ireland, Translink offers a range of concession and senior citizen passes. Visit: translink.co.uk/UsingTranslink/ticketsandtravelcards or call 028 9066 6630.

3. At homeYou could be entitled to a Winter Fuel Payment if you’re already receiving certain benefits (if you were born on or before 5 November 1953). To find out if you’re eligible to claim, call the Winter Fuel Payment helpline on 0800 731 0160 or visit gov.uk/winter-fuel-payment/eligibility.Household bills: If you haven’t done a price comparison on your gas and electricity providers in the last year, it may be worth looking at an online price comparison site to see if you can save money by switching providers. It may also be helpful to do this for other household bills, such as telephone bills, internet providers and insurance.It might also help to review your existing deals on TV packages or mobile phone contracts – do you use all of your allowance? If not, you could try negotiating a new rate or package with your provider.Council Tax discounts: You may be entitled to certain discounts on your bill as not everyone is counted for Council Tax purposes. See our website to find out more: carersuk.org/counciltax. (If you live in Northern Ireland, you can also find more information on the Rate Relief scheme here).

4. GrantsWhen unexpected costs arise, it’s not just your local council that might be able to help. There are lots of charities that award grants to people in financial need. Visit: grants-search.turn2us.org.uk

We have seven top tips on how to get your finances back on track.

22 We’re here for you... Helpline: 0808 808 7777 (Monday and Tuesday, 10am-4pm)

Forum Q&AQ

My mum has now been put under the palliative care team so we know time is limited. Once she has passed, who will I be? How do you find out who you are?

Connect with other carers: carersuk.org/forum

Replies from the forum...

“When a caree dies, the carer is dealing not only with grief but also coming to terms with a total change of lifestyle. There are many threads, on the forum from past carers. I’m sure some of them will be along to offer advice. In the meantime, value this time with your mum.”

“Discovering the ‘new’ you can be fun and scary at the same time.I’d suggest that you start by making a list of everything you’ve ever wanted to do or to learn. However, between now and then there is a lot of heartache to come too.Can I suggest you consider having some counselling to help you? I found it very helpful when my own mum was dying.”

Talk to other carers who understand 24/7 at the Carers UK Forum. Visit carersuk.org/forum to get started.

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5. HealthcareIf you are on a low income, you may be eligible for free healthcare such as free prescriptions and free eye tests. To find out if you qualify for help with NHS costs, visit gov.uk/help-nhs-costs. Through the NHS Low Income Scheme, you may also be able to get help with transport costs to and from hospital under the Healthcare Travel Costs Scheme. Call 0300 330 1343 to find out more.

6. Budgeting loansThese can help with one-off essential expenses if you get Pension Credit or certain other benefits. They are interest-free so you only pay back what you borrow. To apply, you can contact your local Jobcentre Plus, by calling 0345 603 6967 or visit gov.uk/budgeting-help-benefits.

7. Money mattersA helpful tip is to go through your bank statements and make sure that you don’t have any direct debits set up for services that you no longer need (ie a gym membership that you no longer use) or for insurance policies on items that you no longer own (ie technology insurance cover).If you are concerned about repayments of a mortgage or a credit card with a high interest rate, then an option that you could look in to is switching to a different rate or transferring credit card provider. It’s always important to get some professional advice when looking in to these matters. Charity Step Change (stepchange.org) can provide advice around mortgage and credit card debts, and are available on 0800 138 1111.If you have reached a situation where you feel stressed about debt, there are organisations that can help. Avoid using credit cards or payday loans to fix the problem. Instead, contact a genuine debt charity such as National Debtline (0808 808 4000, nationaldebtline.org).

Forum: carersuk.org/forum 23

Looking after someone

Carers UK’s Looking after someone guide contains essential information for anyone caring for family or friends.

The booklet outlines your rights as a carer and gives an overview of the practical and financial support available.

There are five versions of the guide: England, Northern Ireland, Scotland, Wales (English) and Wales (Welsh).

The guide is free to download from the Carers UK website at carersuk.org/LAS

Printed copies are available to order from the Carers UK online shop: shopcarersuk.org

Information and support for carers in Scotland

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Looking after someone

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Information and support for carers – FREE guide

Download or order your FREE guide today at carersuk.org

Please note: printed booklets are supplied free of charge, you just pay the P&P

2019/20

Looking after someoneInformation and support for carers in Northern Ireland

Looking after someone

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Looking after someoneInformation and support for carers in England

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Gwybodaeth a chefnogaeth i ofalwyr yng Nghymru

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