Caring Magazine Dec 2021 by Louis Thomas

Your members’ magazine NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

On an emotional rollercoaster Loving and caring for a daughter with an addiction

Clothing to help you care Find out more about The Able Label

Thinking about the future Tips on advance care planning from Hospice UK

Issue 60 | Winter 2021

Receiving unwanted requests for charity donations this festive season? Use the FPS to stop contact from charities for you or someone you know.

Welcome As the end of another extraordinary year approaches, and with the holiday season bringing its own pressures for carers, many are facing uncertainty and anxiety at the moment. So I want to start by assuring you that we at Carers UK are here to support you. The COVID-19 information on our website remains up-to-date, and our telephone Helpline will be open as normal from Monday to Friday, 9am–6pm on 0808 808 7777 during the festive period. It’s been a busy time at Carers UK. Since the autumn issue of Caring, we’ve held our AGM and Members’ Conference – where it was fantastic to ‘meet’ so many of you virtually and hear about your experiences and priorities – and we campaigned to raise awareness of your rights on Carers Rights Day. In November, we released our 2021 State of Caring report, the most comprehensive research into caring in the UK. Running for ten years, this year’s State of Caring survey was our biggest yet

Our mission is to make life better for carers:

with over 8,500 carers responding. If you were one of that number, I’d like to say a huge personal thank you for taking the time to share your experiences which gives us the authority to continue to campaign on your behalf. Our research is essential to our campaign for increased rights and entitlements for carers, makes a strong case for increasing financial support, and provides us with powerful evidence of your experiences. It’s central to our work, and we couldn’t do it without you. We know how hard things are for carers right now and we will be busier than ever in 2022 campaigning on your behalf, and I hope you will continue to support us as we strive to make life better for carers. With my very best wishes for Christmas and the New Year, Helen

AGM highlights

20 Planning for the future

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. CARERS UK HELPLINE

T 0808 808 7777 Opening hours: Monday–Friday, 9am–6pm E advice@carersuk.org For opening hours over the festive period, please see page 5

KEEP IN TOUCH

Carers UK 20 Great Dover Street, London SE1 4LX T 020 7378 4999 E info@carersuk.org www.carersuk.org Carers Scotland T 0141 445 3070 E info@carerscotland.org www.carerscotland.org

In this issue...

We give expert advice, information and support

35 Festive recipes for carers

Carers Wales T 029 2081 1370 E info@carerswales.org www.carerswales.org Carers Northern Ireland T 028 9043 9843 E info@carersni.org www.carersni.org

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 December 2021

News from Carers UK New six-month partnership between Carers Wales and MS Society Cymru The MS Society Cymru has teamed up with Carers Wales to put on special Me Time sessions for people with MS and those who care for people with MS. These sessions are funded by the Waterloo Foundation. Me Time is a series of online social activities ranging from information and training, craft and physical activities to sessions to support for your emotional wellbeing. Each activity is free to join and will be running weekly from November until May 2022.

Visit www.carersuk.org/wales/help-andadvice/ms-society-me-time to find out more and register for activities.

Have you ever thought about volunteering online with Carers UK? Our volunteers help us to campaign for change and support unpaid carers across the UK. We’ve got several online roles which can really make a difference to carers and help raise carer awareness without a large time commitment. Insight Volunteer As an Insight Volunteer, you’ll share your caring experiences and insights to help us look into new areas of research and improve services and products for carers. www.carersuk.org/how-you-can-help/ volunteer/research-volunteer

Online Awareness Raiser As an Online Awareness Raiser, you’ll share Carers UK social media posts on your personal social media accounts. Your posts will help carers access information and support and raise vital awareness of the issues carers face: www.carersuk.org/how-you-can-help/ volunteer/social-media-volunteer Online community volunteering Our online community roles help our carer members to connect online. You can: • connect with carers on our forum as a Moderator or Host. • facilitate online meetups as a Facilitator. • help carers look after their health as a Carers Active Online Champion. If you’re interested in any of these roles, please visit www.carersuk.org/volunteer You can also contact us via volunteering@carersuk.org or call 020 7378 4997.

www.carersuk.org

More about Carers UK: www.carersuk.org/about-us

Information and support over the festive period We know the festive season can be a challenging time. If you need information and support, our telephone Helpline will be open as normal Monday to Friday, 9am–6pm on 0808 808 7777 during the festive period, including Christmas Eve, New Year’s Eve and Bank Holidays. Our email advice service will be available at advice@carersuk.org with a reduced service from 22–24 December, and will be closed 25 December to 3 January. If you need somebody to talk to or a listening ear, the Samaritans are available 24/7. Call 116 123 or email jo@samaritans.org

Winter flu jabs Book your flu jab to help protect you and the person you care for. You can boost your immunity this winter by getting a flu jab. If you receive Carer’s Allowance or you care for an elderly or disabled person who may be put at risk if you become unwell, you could be eligible for a free flu jab. For more information on eligibility and how you can book, please visit our website: www.carersuk.org/flu-jabs

Your chance to win a free break We’ve partnered with Regina Blitz to raise awareness of caring and highlight the importance of carers getting a break – and as part of the partnership, Regina Blitz is running a breaks giveaway until the end of January 2022. There are lots of fantastic prizes up for grabs including afternoon tea, relaxing spa breaks, weekend getaways, a month of meals and lots more. For your chance to win, visit www.carersbreaks.regina. uk.com or find a pack of Regina Blitz promoting the partnership in your local supermarket.

Unpaid carers are also eligible for the COVID-19 booster vaccine under priority group 6 as set out by the JCVI. Read our COVID-19 vaccine FAQs to find out more about eligibility and how you can book your booster: www.carersuk.org/covid-vaccine If you haven’t been identified as an unpaid carer by your GP, we suggest you contact them to let them know you are a carer. You can check your local GP’s website to find out if they have a simple form you can fill out, or use our letter template: www.carersuk.org/registerwith-your-gp-template @carersuk

/carersuk

News and campaigns

Carers Rights Day This Carers Rights Day, individuals and organisations across the country got involved to raise awareness of the rights that carers have and let carers know where to get help and support.

New Working Carers Guide in Wales Alongside the new research produced by Carers UK for Carers Rights Day, Carers Wales has produced a new Working Carers Guide for people who are juggling paid employment and unpaid caring responsibilities. The guide gives an overview of carer and employment rights available in Wales, explores the challenges and benefits of identifying yourself as a carer in the workplace and what support is available.

To offer carers a chance to recharge and connect with each other, we hosted five special online meetups during Carers Rights Day. We were thrilled to kickstart the day with an energising session from Mr Motivator, who led carers in a fun and accessible workout. Carers then joined us for a special Carers Rights Day Care for a Cuppa, where we discussed Carer’s Leave, Carer’s Allowance and support for carers during the pandemic.

“Very informative and a real insight into the issues faced.” (Care for a Cuppa attendee)

In the afternoon, we ran a ‘Tips and guidance: juggling work and care’ session

with our Helpline expert Liz, followed by a moving discussion from carer and author Penny Wincer, who read from her book Tender: The Imperfect Art of Caring. Finally, carers joined our Helpline experts, who responded to questions posted by members on our forum in our Forum Q&A.

“Massive thanks once again Penny, such a wonderful advocate for carers!” (Penny Wincer session attendee)

Thank to everyone who participated and submitted questions. Recordings will be available on our website soon, so please keep an eye on your inbox.

Funded by the Welsh Government, this guide was co-produced with carers whose insights and feedback informed the content. We would like to thank everyone who gave their time to contribute to this guide. The guide can be downloaded free at www.carersuk.org/wales/ WorkingCarersGuide We also launched new research on the day, ‘Supporting carers at work: opportunity and imperative’, which set out the impact of the pandemic on carers who juggle caring with paid employment. You can read the report at www.carersuk. org/crd2021report www.carersuk.org

A tribute to our colleague, Lesley Johnston For carers in Northern Ireland, Lesley’s knowledge of carers issues made her work invaluable.

It is with great sadness that we share the news that Lesley Johnston, Carers NI’s Advice and Information Officer, passed away in October of this year. Lesley worked at Carers NI for almost 20 years and during that time was an integral part of our advice and information service, especially our Adviceline, where she provided information, advice and support to thousands of carers in Northern Ireland and across the UK. She did so with kindness, empathy and respect. Her expertise and knowledge of the legislation, policy and practice relating to all aspects of carers lives was widely recognised @carersuk

/carersuk

across the country. For many years Lesley convened the Carers Workers Network, bringing together professionals from the public and voluntary sector who worked directly with carers, keeping everyone updated on the current issues carers were dealing with and sharing good practice. She also played an important role within the Helplines Network and the Cliff Edge Coalition, ensuring carers issues and supports were regularly highlighted. As legislation and circumstances changed, Lesley was always conscientious in ensuring that our information was up-to-date, accurate and

relevant to carers living in Northern Ireland, across our publications, website and social media channels. She played a vital role in the development of a number of regional publications including our When caring ends or changes factsheet and the Department of Health’s guidance for carers during the pandemic. Lesley developed and maintained long-standing friendships with colleagues across all parts of the UK and despite not seeing many people face to face in recent years always seemed to know what was going on across the organisation. Her knowledge of carers issues and her passion and commitment to her work were invaluable and she will be sorely missed by all her colleagues and those that worked with her. Our thoughts and condolences remain with her family and friends as we all try to come to terms with this deeply upsetting loss. If you would like us to pass a personal message on to the Carers NI team, please email comms@carersuk.org

Members and volunteers

Highlights from our 2021 AGM and Members’ Conference

“It was great to feel part of Carers UK by being made to feel welcome – I thought the range of sessions was great.” Our second online AGM and Members’ Conference, held on 14 October, was a great success and it was wonderful to see so many of you there. A total of 225 delegates attended during the day for what one member described as “an enjoyable, celebratory event”.

took part in informal Care for a Cuppa chats with other carers from all UK nations. Helen Walker, Chief Executive, then gave an update on the organisation’s achievements during the past year, progress made so far on our Vision 2025 direction of travel, and outlined plans for the coming year.

The day started with Carers UK teams and trustees welcoming members and talking about their work. Carers UK member Hitesh Daudia also helped to energise delegates with a series of breathing exercises. After the Annual General Meeting, which was led by Nick Baird, Chair of Carers UK, carers

After Helen had answered several questions from members, we then listened to a fascinating discussion with three carers on their varied experiences of caring during the past couple of years and the support they hope will be available for carers as we emerge from the pandemic restrictions.

www.carersuk.org

Join us for a Care for a cuppa online chat: www.carersuk.org/cuppa

We ended the morning with a session to highlight how you can make the most of your Carers UK membership and heard your ideas for how we could provide additional member benefits in the coming year.

“A sense of belonging to a real community.” Over the lunch break, many carers chose to listen to some relaxing classical music from Orchestra Vitae, while others joined Shaun Deeney to hear him read from his book, Love & Care. Many members also joined an interactive discussion on how to get more involved in Carers UK’s work. During the afternoon members were able to choose from three sessions focused on keeping well in your caring role: sleeping better with Deborah Szebeko from Sound Asleep Club, beginner’s Yoga with Sangeeta Bhandari and an introduction to Latin dance with Mauricio Reyes from Latin Motion. The conference ended with closing remarks from Helen Walker and a rousing sing-along with Jacky Webbe who sang several Motown hits. We recognise that some of you had technical problems when signing in and we’d like to thank you for your persistence and for bearing with us when we experienced a couple of other technical issues on the day.

You should have received a link to video recordings of many of the conference sessions in your November members’ email. If you can’t find this link please contact membership@carersuk.org

@carersuk

/carersuk

News and campaigns

State of Caring The Carers UK State of Caring survey is the most comprehensive survey of unpaid carers in the UK, and the 2021 survey was our largest to date. We heard from over 8,500 carers who helped us understand what caring has been like in 2021, as well as their concerns about the future. The full report can be read on our website at www.carersuk.org/SOC2021 Key findings Carers told us how challenging their financial situation has become, with one in five (21%) saying they are worried they may not cope financially over the next 12 months. Over a third (36%) of carers stated that their financial situation had worsened since the start of the pandemic 23% of carers cannot manage their monthly expenses

Carers are worried about practical support. We heard how the workforce crisis in social care is directly impacting people’s lives. 55% of carers still have reduced or no access to day services Just 13% of carers are confident they will get the practical support they need in the next 12 months

The pandemic and the increased amount of care they provide is having a significant and detrimental effect on carers’ health. A quarter (25%) of carers said their physical health was bad or very bad 3 in 10 (30%) carers said their mental health was bad or very bad We estimate that at the height of the pandemic over a quarter (26%) of all workers were juggling work and care. There has been a substantial move to working from home, with 47% of working carers working from home either some or all of the time. For some carers, this helped them to balance work with their caring responsibilities, but for others it was a challenge to concentrate on work whilst at home. Where next? Using our previous research, we campaigned successfully for better guidance, testing for carers, PPE for unpaid carers, carers’ ‘support bubbles’ and exemptions to allow carers to get a break. Carers were included in the COVID-19 vaccination priority list, and we campaigned for advice to support juggling work and care. We want to ensure that carers’ voices are heard by Government. We used State of Caring to inform our response to the social care White Paper and will continue to use it to campaign for improvements to carers’ benefits and tell decision makers what matters to you. www.carersuk.org

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

Scottish Carers Parliament 2021 Again held virtually, this year’s Carers Parliament was a great success. Carers from across Scotland took part in discussions over three days, focusing on the Scottish Government’s consultation on a new national care service as well as work that is ongoing to develop a new Scottish Carer’s Assistance.

from discussion sessions and all the questions submitted each day and in advance, and chat discussions to ensure that those reading the response have the full picture of all that carers said over the three days.

We held 17 workshops and a main event, including carer and young carer speakers, Ministers and COSLA’s spokesperson (representing local councils) as well as an excellent panel discussion.

Carers were emphatic that something had to change and the current system is not working for them and the people they care for. They felt that the pandemic had shone a light on issues with social care that were longstanding and ignored. Participants were strongly supportive of key elements, including establishing a National Care Service, delivering a right to short breaks for carers and making care and support systems simpler to access and easier to navigate.

Using what carers discussed and questions they raised, Carers Scotland produced a response to the National Care Service consultation. We also included reports

17workshops and a main event were held over the 3 days

There was much consensus on the way forward from carers as well as challenging questions for the Scottish

Government to explore further as proposals develop and we hope the final response does justice to what carers said. You can read the response here: https://bit.ly/3lHxFiu You can watch videos of the main event on 7 October on YouTube: ‘Part one - speakers’ https://bit. ly/2ZZYMhc and ‘Part two panel discussion’ https://bit. ly/3Dx2lJm You can download the reports on discussions on work to develop a new Scottish Carer’s Assistance here: https://bit.ly/3lGVCH1

“There was much consensus on the way forward from carers as well as challenging questions for the Scottish Government to explore further as proposals develop and we hope the final response does justice to what carers said.”

@carersuk

/carersuk

Health & wellbeing

Carers Active Hub and Facebook group Carers Active is a project aimed at supporting carers to be more physically active and improve their physical and mental health and wellbeing. Physical activity is a vital part of a healthy lifestyle and helps with managing stress and anxiety as well as increasing feelings of positivity during daily life. The UK Chief Medical Officers recommend being active daily and ideally for 150 minutes per week. But every minute of physical activity counts to improve your health, and it’s never too late to start. The importance of physical activity on carers’ health was highlighted again recently in our State of Caring report. It found that the stress and increased amount of caring brought about by the

pandemic has taken a clear toll on carers – worryingly, a quarter of carers rate their physical health as bad or very bad and 30% rate their mental health as bad or very bad. Now more than ever, being supported to improve your health and wellbeing is crucial. Through our Carers Active pilot programme and research, we know that the three-quarters of carers do not feel that they are able to do as much physical exercise as they’d like to do and want to know how to build this into their busy lives.

Our insight also showed that:

75%

of carers aged over 55 do not feel that they are able to do as much physical exercise as they’d like to do and wanted to know how to build this into their busy lives.

58%

of carers said being active helped them to learn more about the importance of looking after their health.

67%

of carers said doing a range of physical activities helped them to feel more connected to other people.

Carers were more likely to categorise themselves as rarely or never lonely after finding an opportunity to exercise regularly.

Carers who take part in some form of physical activity say that their mental wellbeing improves as a result.

www.carersuk.org

Visit the Carers Active hub: www.carersuk.org/help-and-advice/activity-hub

“Worryingly, a quarter of carers rate their physical health as bad or very bad and 30% rate their mental health as bad or very bad.”

Based on these findings and insight from Carers UK members, the Carers Active project has been set up to make physical activity achievable, accessible and affordable for unpaid carers. A key part of the project is the Carers Active Hub and the Carers Active Facebook group, which are designed to help carers of all ages be more active and overcome some of the barriers to taking part in physical activity. The Hub contains a range of advice and information about the options available for building more physical activity into your life around your caring role. We understand the barriers carers face, so have designed the Hub resources with carers, and with those barriers in mind. The Hub includes the following: Health information – key recommendations and how to get started. Activity ideas and sessions – inspiration and links to resources to help you find something you enjoy. Carers’ stories – carers share their experiences of getting active while caring.

You can access the Hub at www.carersuk. org/help-and-advice/activity-hub

Expert advice – insight from health and social care professionals.

You can join the Carers Active Facebook community: www.facebook.com/ groups/297251611709357

@carersuk

/carersuk

This is caring

“I made her a promise” Martin reflects on his experiences of caring for his mother with dementia, and the support that helped him through. As part of my work within the Metropolitan Grand Almoner’s (MGA) Team, I attended two of the first three carer aware workshops, organised over Zoom in association with Carers UK, who were happy to receive our recent donation of £48,000. At one session, I was invited to talk about my experiences as a carer for my elderly mother, who now at the age of 89 has Alzheimer’s disease as well as a plethora of other debilitating conditions. “Following a sudden illness in 2014, my mother was hospitalised and underwent surgery for an intussusception, a condition that usually affects young children. Following her eventual discharge from hospital, I moved in with my mother to look after her while she convalesced. Having had some experience with other family members

with Alzheimer’s and backed up by some of the lectures organised by MGA at Florence Nightingale Lodge, I realised that my mother had started to exhibit some of the early signs. I organised an assessment and it was confirmed that she was in the early stages of dementia.

Sadly, the following year my aunt developed myeloma and had to undergo cancer treatment. My caring duties had certainly been cranked up a notch, with my aunt who lived alone requiring more assistance than my mother, and I was trying to run a business at the same time.

“She was able to live quite independently at first and I was aided by an aunt, my mother’s older sister who lived locally, and I was able to split my time between my mother and my own family.

“Luckily, I was able to scale my business down and devote the necessary time to look after these two ladies who have done so much for me throughout my life. My aunt’s deterioration was quite rapid; the time from diagnosis to death was only three months but the period in which she suffered certainly seemed much longer than three months when I think back on it.

“Once the Alzheimer’s diagnosis had been confirmed, support was much more forthcoming. Carers UK provides sage advice for carers trapped in that limbo period.”

www.carersuk.org

Connect with other carers: www.carersuk.org/forum

“I made her a promise, and as a Freemason I completely understand the importance of an obligation. For the time being then, I am happy to do what I consider is my duty and I do it with a good heart.” “Over the next couple of years my mother steadily got worse and at around 2am on a cold November morning, she decided to head over to see her sister in nothing but a nightdress. I suppose if she can forget to get dressed, she can forget that her sister had passed away. She only managed a few hundred yards when she fell, broke a hip, and went on to develop pneumonia. “Once again, my mother tweaked the nose of the Grim Reaper and was discharged from hospital. The circumstances leading to her hospital admission prompted another assessment of her mental capability, and she was finally diagnosed with Alzheimer’s disease. Up to this point, the support I received from the NHS and local authority was somewhat sketchy to say the least, but once the Alzheimer’s diagnosis had been confirmed, support was much more forthcoming. Carers UK provides sage advice for carers trapped in that limbo period. @carersuk

/carersuk

“I took steps to ensure that what happened in November was not able to happen again. I installed cameras in several rooms backed up with Amazon Echos, enabling a two-way audio exchange without my mother having to answer a telephone. I have made her home as safe as possible, allowing me to enjoy a modicum of freedom, without which I am sure any carer would mentally struggle. “When my mother was initially informed that she was in the early stages of dementia, she asked me not to take her away from her neighbours and friends and the home she had lived in for 50 years. So I made her a promise, and as a Freemason I completely understand the importance of an obligation. For the time being then, I am happy to do what I consider is my duty and I do it with a good heart. We are all capable of doing the things that we thought we would never have to do when it comes to the people we love. Strangely, her not knowing that I am her son makes

doing what must be done somewhat easier. I have a good support network in place which allows my unfettered participation in the fraternity that has certainly helped maintain my mental health throughout lockdown. I know there will come a time when the next level of care will be required, and I will ultimately do what is best for everyone. I will at least know that I did what she wanted for as long as I could. “My story is hardly unique. There are an inordinate number of carers unaware that they are actually ‘carers’ because they are only doing what comes naturally. Carers UK and the Metropolitan Grand Almoner’s team help those in our fraternity who care for a parent, a wife or partner or even a child to realise that there is support available and provide direction on how to access it.

“I have made her home as safe as possible, allowing me to enjoy a modicum of freedom, without which I am sure any carer would mentally struggle.”

Help and support

All images used with permission of Smart Energy GB

The benefits of a smart meter this winter

Keeping warm and well this winter As we head into the colder months, you may start to think more about how much energy you and the person you care for need to keep warm, safe and healthy.

Heating and keeping your home warm can be expensive, and managing household budgets can be stressful – especially if money is tight. This may be a particular worry for you right now, as current challenges in the energy market will have affected a lot of people. You may want to consider getting a smart meter. A smart meter could help you to find ways to reduce

energy waste around the home and save money. The in-home display that comes with your smart meter shows you in near-real time the amount of energy being used in pounds and pence, allowing you to keep a closer eye on your energy spending habits. This is just one possible benefit of requesting a smart meter either for you or for the person that you care for. www.carersuk.org

This content was sponsored by Smart Energy GB

Marilyn’s story Marilyn lives in Ipswich with her husband. Marilyn’s husband has a cousin, Mary, who has dementia. Whilst Mary lives very successfully in her own home, she struggles with her finances. So Marilyn and her husband took on the management of Mary’s bills. They supported Mary in getting a smart meter fitted. Since then, neither Mary nor Marilyn needs to submit meter readings, and no one has to go round to the house to read her meters.

In-home display (IHD) unit

One of the main benefits for Mary is that smart meters enable accurate, not estimated bills, helping to take the stress out of budgeting. It also meant one less job for Marilyn and her husband to worry about.

To learn about how a smart meter could give the person you care for more independence at home and help take one thing off your to do list visit: www.carersuk.org/smart-meters

Sources of support and advice If you are worried about your energy bills this winter, there are further energy efficiency steps you can take and sources of support available. Further information and help can be found by visiting: www.carersuk.org/fuel-costs

@carersuk

/carersuk

Please note: Eligibility of smart meters may vary. Health information and guidance source from Public Health England. Consumer action required to: • obtain cost savings and budgeting benefits of smart meters • keep households at a warm and healthy temperature.

Help and support

All images used with permission of The Able Label

Meet Katie Ellis, Founder of The Able Label Katie Ellis is an entrepreneur who set up The Able Label, an adaptive fashion brand that creates stylish clothes designed for people who are older, ill or disabled and find it harder to get dressed. Find out more in this Q&A with Katie… What inspired you to start The Able Label? I worked as a fashion buyer and got a buzz from seeing customers feel fantastic wearing clothes I’d worked on. However, I took for granted that there were people that were unable to feel this, being unable to dress in high street clothes. This was until my grandmother was diagnosed with Parkinson’s. I saw first-hand how she struggled not only with dressing independently, but also maintaining her identity and style. I was shocked by the lack of options so decided to put my expertise to the test and solve some of the problems she faced myself. The Able Label was created to bridge this gap between function and fashion. What are some of the challenges you faced when setting up your brand? We spent a year and a half testing everything, holding focus groups with various charities, carers and health care professionals. It was only through listening that we could really understand what was wanted.

make it easier to get arms into armholes, and we’ve also colour coordinated the inside of the tee to make the armholes easier to see. We use lime for left and red for right, which helps anyone with cognitive difficulties to dress the right way round. What is your proudest achievement at The Able Label so far? Our clothes have helped to change lives – giving back independence and growing confidence. Seeing this is what I am most proud of and makes all the hard work worthwhile. We had one customer who was cutting herself out of vests – she is now able to dress independently and no longer needs the scissors to hand! Another customer was choosing not to go out as she feared that she wouldn’t be able to get her coat back on without asking for help – since discovering The Able Label, she has started going back out again.

Do you have a favourite piece of Able Label clothing? I’d have to say our Tabatha Tee. It’s so versatile and can be worn dressed down with jeans or up with a statement necklace and tucked into a midi skirt. It’s made from pure cotton and has added features like touch-close velcro to avoid overhead dressing. The raglan sleeves

www.carersuk.org

Do you have an upcoming project you are particularly excited about? We plan to launch a ‘shop by need’ section on our website that will enable people to find the most suitable items for the person they are caring for as well as giving some helpful tips and advice along the way.

Is there anything else you wanted to share with Carers UK’s members? We are always looking to hear where we are doing well and what we could improve or any ideas you have. If anyone does have any feedback, please do contact us at cservices@theablelabel.com

Style icons Joanna Lumley and Caryn Franklin MBE have both praised your designs. Why is it important to you that your designs are fashionable as well as being comfortable and easy to put on? We want to create clothes that people would love to wear regardless of their abilities. This isn’t always easy to achieve, as there can be so many different needs from the clothing. Our focus groups help us to ensure we get as close as possible to this balance though. What are your top tips for making the process of dressing easier when caring for someone? This will be very much dependent on the individual you are helping with dressing but generally, we recommend: • Dress in a seated position or with the support of a rail or handle, in front of a mirror if possible. • Open-front clothes with velcro fastenings help avoid discomfort from overhead dressing. • Consider your surroundings. Is the room warm enough, light enough, should the curtains be drawn? How has your attitude towards fashion evolved now that you run an adaptive clothing brand? It has changed so much! It’s only when you see first-hand the difficulties someone faces with dressing that you can truly understand the struggle people go through and appreciate the difference that adaptive clothing can make. The fashion industry neglects this, with ease of dressing rarely factored into designs. @carersuk

/carersuk

“It was only through listening we could really understand what was wanted.” The Able Label has recently created a collection to help carers with the dressing process. You can see it online here: www.theablelabel.com/collections/ adaptive-clothing-to-help-carers-care 10% of the sale price of items purchased from the ‘Adaptive Clothing to Help Carers Care’ collection will be donated to Carers UK.

Help and support

Planning for the future When you see someone you care for gradually needing more and more support in later life, the need to understand their future care wishes becomes more of a priority. But for various reasons, broaching the subject can feel difficult and is often avoided.

You can gradually find yourself taking on an increasing number of tasks to support them, varying from domestic jobs like gardening and DIY in the home, to shopping and sorting out bills and medication. Amid all the practicalities to consider, it can be tempting to just deal with the ‘here and now’ and not think about the future. However, waiting until someone’s health seriously declines before considering future options around their care could turn into a regret. It’s important not to avoid putting off these conversations until there’s a crisis. No one wants to deal

with significant decisions under pressure, with limited time and information to hand. Understanding what the person you care for would prefer in terms of their future care, whilst they still have the ability to make their own decisions, is vital. So how do you talk about future care options? Opening up a conversation around your plans for the future in general could be a good starting point. You could talk about what you would want for yourself initially rather than putting the person you care for on the spot. Talking about the interesting range of technology that

“It’s important not to avoid putting off these conversations until there’s a crisis.” is available and what you would wish for in the future could be an interesting way to instigate the topic. The conversation could also be centred on how you would wish to maintain independence, especially during a time when new ideas and artificial intelligence solutions are coming to the fore. There are many examples of what you can do in terms of making adjustments in someone’s existing home or considering alternative www.carersuk.org

Find help and advice: www.carersuk.org/help-and-advice

Some tips It can be hard to know how to talk about someone’s needs, whether these are current or you’re thinking about times ahead. We have put together some suggestions to help: 1

If it’s difficult having the conversation at home, suggest going for a walk or sitting outside in nature somewhere quiet and private where you are unlikely to be overhead or distracted.

Having a cuppa and a cake is a nice way to talk in a relaxed environment and sets a lighter tone.

Bring up examples of other people’s similar situations to open up the conversation, citing helpful examples of what may have worked for them.

Share your thoughts on what your own preferences on maintaining your independence would be.

Be aware of the language you use; make suggestions rather than dictating and ensure it’s a two-way conversation so that they feel listened to.

You could mention that you’re putting together a contingency plan (in case anything should happen to you) and want to make sure you capture their best interests and wishes. See our step-by-step online guide to making a contingency plan here: www.carersdigital.org/mybackup/

living arrangements to ensure that they don’t feel too overwhelmed – and changes don’t have to be drastic. See our website for ideas: www.carersuk.org/ help-and-advice/technologyand-equipment

“Understanding what the person you care for would prefer in terms of their future care, whilst they still have the ability to make their own decisions, is vital.”

There are various steps you can take to ensure loved ones’ wishes are put first and this can be done through an advance care plan – a statement that sets out the wishes of someone’s future care. Find out more about advance care planning on page 22. @carersuk

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Help and support

Advance care planning explained by the experts End of life care can be difficult to think about. To help you and the person(s) you are caring for consider different options, Hospice UK offers a general overview of advance care planning for carers and those they care for. What is advance care planning? Most adults are able to make decisions about their treatment when it comes to end of life care, but over time and through illness, this can change. Planning ahead and thinking about your wishes is called advance care planning. It is a good idea to talk about the type of care and treatment you want to receive with the people who are important to you and can help advise you, such as a partner, family or doctor. Why is it important? Planning ahead helps to let people know your wishes and feelings around the end of life care you receive. You may wish to specify if you want to be cared for at home or elsewhere, who is responsible for you and what comforts are provided. It is important to outline information that matters to you, such as your religious or cultural beliefs and dietary requirements, to make sure the care you receive is tailored to your needs. What does advance care planning involve? Advance care plans can be made for everyday decisions that might have nothing to do with medical treatment – such as the place where you would want to be looked after if you become incapable of looking after yourself. Examples where someone might not have

this capacity is when they have conditions that may affect their ability to make their own decisions like dementia, brain damage, or severe learning disabilities. Advance care planning can also include making decisions about treatment and can include refusing life-prolonging treatments. You can refuse any treatments except basic care which includes pain relief, nursing care and the offer of food. If you live in England and Wales you can make an advance decision to refuse treatment (ADRT), or an advance directive if you are in Scotland. In Northern Ireland there isn’t a law that gives you the legal right to refuse medical treatment in advance. How does advance care planning work legally? It is important to think about who will make the decisions for you if you aren’t able to, which is why it is vital to discuss your advance care plan and lasting power of attorney, if you wish to set one up, with your family or loved ones. Advance care plans are not legally binding, but your wishes must be taken into account when making decisions about your care. Without an advance care plan, the decisions fall to your next of kin and healthcare professionals.

For more information on advance care planning and what decisions you can make when planning ahead, visit the Hospice UK website www.hospiceuk.org/information-and-support/your-guide-hospice-and-end-life-care

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Help shape our service Throughout the pandemic, we have seen demand for our Helpline services grow more than ever before.

Over the past 12 months we have answered nearly 22,000 telephone enquiries for information & advice about caring, and over 8,000 email enquiries. We’ve also launched our reshaped Listening Support Service, where our trained volunteers are speaking to more and more carers each month, providing a listening ear and emotional support. As we launch our new Direction of Travel at Carers UK, we are turning our attention to the future of our Helpline services. We want to make sure that we are meeting the needs of carers, and embracing new technologies and ideas so that it is easy and convenient to contact us with a question about caring.

22,000

8,000

telephone enquiries answered in the past 12 months

email enquiries answered in the past 12 months

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“We want to make sure that we are meeting the needs of carers, and embracing new technologies and ideas.” This is where we want to hear your voice. We would be so grateful if you could complete our survey to help us shape our services for the future. Your responses will help us understand which advice and support areas we can help with the most, and what you will expect from us when you contact Carers UK for information and advice about caring in the years to come. Whether or not you have used our Helpline services in the past, we would love to hear from you. The survey should take no more than ten minutes to complete, and can by accessed by visiting: www.surveymonkey.co.uk /r/DQW7YYZ or by scanning this QR code on your mobile device. From everybody in the Carer Support team, thank you in advance for your help.

This is caring

Melanie Pearson interview, author of Somebody Up There Likes Me: Living with the threat of Huntington’s Disease When Melanie Pearson was a teenager, her father cared for her mother who had Huntington’s disease. Her brother Nick later developed the disease and Melanie stepped in to care for him. She has now written her memoir to chronicle their family history. We had a chat with Melanie to find out more… What is caring for someone with Huntington’s disease like? My brother and I both stood a 50% chance of getting Huntington’s – it’s an inherited condition. My brother’s life started to unravel and it became clear that he was developing the illness. Huntington’s involves your whole physical mobility, everything starts to go – walking, speech, swallowing, all motor control. He got to a crisis point and that’s when I stepped in. I was project manager, looking after his daily wellbeing, trying to arrange care professionals to come and help, navigating the benefits system, shopping for nutritious foods, the list goes on. If what I did in a day or a week was translated into a job, I would be on a six-figure salary, managing a team of people.

“It gave me a new identity as a writer and as a family historian. There’s always the guilt that you’re not doing enough as a carer, even when you’re absolutely sweating blood! Writing the book really helped me look back and feel proud of what I’ve done.” You’ve now written your memoir, Somebody Up There Likes Me. What inspired you to write this book? When I first became a carer I didn’t really know where to turn. I had found a small community of people on Twitter, then I started a blog. It helped me to vent, and also to record some of the craziness of everyday life. After Nick died, I stopped doing the blog but people on Twitter told me they were sad because they had grown to love the personalities. I realised I was the only person left from our family and I needed to pay them tribute and tell our story. www.carersuk.org

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“If what I did in a day or a week was translated into a job, I would be on a six-figure salary.” You write about your experience of caring with love, optimism and good humour. Is there a particular moment of joy in your caring journey that stands out to you? We managed to get some funding to take Nick to Revitalise, which is an amazing charity that do holiday breaks for people with fairly severe impairments. I picked him up at the end of the week and he was beaming. He’d been swimming again! The volunteers at Revitalise had even taken him out to a bar and they’d had a night on the town. And this was someone who couldn’t raise a glass to their mouth or coordinate their movements. All the way home we just sang along to old music that we’d loved when we were growing up, and it felt like he had got himself back. You have also written about challenges you have had while caring. What did you find most difficult about caring? So many support organisations don’t talk to each other. Our social worker had absolutely no contact with the local authority housing people – that’s just one example. If those different services involved in the care of the service user communicated it would have been easier. But that seemed to be absolutely impossible, so it was always up to me to organise it. Getting through to any department would take about 40 minutes, and during that time, I might have my brother falling out of his chair. It was exhausting.

Has writing your memoir helped you to adjust to life after caring? It gave me a new identity as a writer and as a family historian. There’s always the guilt that you’re not doing enough as a carer, even when you’re absolutely sweating blood! Writing the book really helped me look back and feel proud of what I’ve done. As for life after caring, I got some work outside the home housekeeping. It was during lockdown, so some people would think that was not very lucky and could be dangerous, but I needed to see the world. But, really there’s nothing set up for you when caring ends. Carer’s Allowance finishes. There is very little support. There’s nothing. So that’s difficult. What do you hope your the readers of your memoir will be able to take away from it? I really hope that people with Huntington’s in the family and those who are carers themselves feel less alone. But it’s also for people who don’t have any experience of caring. I like to think that it gives insight into the whole dynamic of caring. It’s not just doom and gloom, there’s love, there’s joy and humour and silliness and just the normal stuff of life.

Somebody Up There Likes Me is dedicated to all carers past and present. You can order a copy of the book on Kindle from Amazon here: www.amazon.co.uk/Somebody-Up-There-Likes-Huntingtons/dp/B097XB7VQ8

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Information and support

Lightening the load Finding ways to save during the season of spending As we enter the festive season, it can be stressful trying to make ends meet. High energy costs, extra food to buy for special occasions and the pressure of presents to stump up for can all create a financial headache. Transport tips The costs of travelling to see relatives and friends at Christmas time can wadd up. There are some ways you could get discounts though on your travel. For example, the Blue Badge scheme offers parking concessions for disabled people. In Northern Ireland, it is referred to as the Blue Badge Unit (0300 200 7818).

Get a financial MOT Arranging a benefits check might be a good way to take a fresh look at your finances and find out if there’s anything else you could be entitled to. You could email our Helpline team at advice@carersuk.org or, if you want to do your own investigation first, you might find it helpful to try out this benefits calculator: www.carersuk.org/help-andadvice/financial-support/help-withbenefits/turn2us-benefits-calculator On top of existing benefits, there may be grants you can apply for – local carer organisations can often provide details about local schemes and opportunities, and we also have some general information on our website: www.carersuk.org/helpand-advice/financial-support/help-withhousehold-finances/grants

There are also cheaper rail fares available with the Disabled Person’s Railcard. You can order one for £20 a year by calling 0345 605 0535 or visiting www.disabledpersonsrailcard.co.uk This isn’t available in Northern Ireland, but Translink offers a range of concessions and senior citizen passes. Visit: www.translink.co.uk/usingtranslink/ ticketsandtravelcards/concession or call 028 9066 6630. The Motability Scheme offers rental deals if you are claiming a disability benefit: www.motability.co.uk Help at home With spiralling energy costs, the worry of heating bills is something many of us are facing. You may be entitled to a Winter Fuel Payment if you’re already receiving certain benefits (and were born on or before 26 September 1955). To find out if you’re eligible to claim, call the Winter Fuel Payment helpline on 0800 731 0160 or visit www.gov.uk/winter-fuel-payment/eligibility www.carersuk.org

Find help and advice: www.carersuk.org/help-and-advice

“If you feel like you’re falling behind on bill payments or finding it hard to keep up with rent, mortgage or other essential living costs, help and support is available.” It’s worth checking if you’re entitled to any discounts related to your Council Tax as not everyone is counted, and there are some discounts that may apply if you’re caring for someone depending on your circumstances. See our factsheet www.carersuk.org/fileshelp andadvice/4039/counciltaxapril-2021-22.pdf to find out more, or if you live in Northern Ireland, see our Rate Relief scheme guidance: www.carersuk.org/help-and-advice/ financial-support/help-with-householdfinances/council-tax-rate-relief#sec8 Other ideas for saving on energy include applying for the Warm Home Discount Scheme, joining the Priority Services Register (which provides specialist support for vulnerable customers), or finding out if a smart meter might be suitable for you or someone you care for. See this page for more information: www.carersuk.org/ fuel-costs Checking you’re getting the best rate Using price comparison sites can be an effective way to compare rates with other providers and check that you are getting the most competitive deal possible. It may be useful to see if you can get cheaper deals for your phone, internet and insurance by switching providers, especially if you are not using all of your current allowance.

Other expenses Healthcare If you have a limited income, you may be eligible for free prescriptions and eye tests. To find out if you qualify for help with NHS costs, visit www.gov.uk/help-nhs-costs You might also qualify for help with transport costs to and from hospital under the Healthcare Travel Costs Scheme as part of the NHS Low Income Scheme. Call 0300 330 1343 to find out more. Budgeting Loans They are interest-free so you only pay back what you borrow. They might be helpful if you have a one-off essential expense for example. To apply, contact your local Jobcentre Plus by calling 0345 603 6967 or visit www.gov.uk/budgeting-help-benefits Spiralling costs? If you feel like you’re falling behind on bill payments or finding it hard to keep up with rent, mortgage or other essential living costs, help and support is available. The charity Step Change provides advice around mortgage and credit card debts and is available on 0800 138 1111 or via their website: www.stepchange.org If you have reached a situation where you feel stressed about debt, you could also contact a reputable debt charity such as National Debtline and they will be able to help you manage the situation step by step (0808 808 4000, www.nationaldebtline.org)

It is also good practice to periodically review your accounts and double check in your financial statements that there are no direct debits that you have set up in the past that are no longer required. An example may be insurance for a piece of equipment you don’t use anymore or a membership fee. @carersuk

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Information and support

How a budget planner could help you get to grips with your finances One way to keep track of and reduce rising expenses is to create your own budget. It needn’t be too complex or time-consuming, and it could help you feel more in control of your money. You can either use pen and paper or a pre-existing template, such as this example from the debt charity’s StepChange website: www.stepchange. org/debt-info/how-to-makea-budget.aspx Weekly or monthly budget? If you work and get paid monthly or receive a benefit every month, a monthly planner may be best. Alternatively, a weekly planner may be better if your income changes week to week. Just be consistent with how you record the amounts. Is your budget just for you or someone else? Consider whether you are just tracking your own income and spending, or taking into account someone else’s too, such as a partner, family members, or the person(s) you care for. Refer to bank statements This can help you keep a record of your regular income and spending. Examples include: salaries,

regular bills, any welfare benefits, pensions and other forms of income. If your income changes regularly – for example if you are selfemployed, it may be best to calculate an average per month or per week based on six months or a year. Which payments are a priority? There are likely to be some essential payments that must be paid regularly. You can highlight these in your planner. For example: • rent or mortgage payments • utility bills • phone/internet bills • Council Tax • food costs • medication and prescriptions • transport costs. Don’t forget one-off payments Take into account one-off costs, such as insurance and emergency expenses, to fix a boiler for example. You could look at your past records and roughly work out how much you will need to set aside for these costs.

“You can work out how much you have left each month by subtracting all the expenses from your monthly income.” Cut down on non-essentials Having a record all in one place will help you better understand your finances and identify any outgoings you no longer need, such as outdated subscriptions. Work out what’s left over You can work out how much you have left each month by subtracting all the expenses from your monthly income. Some bank apps can automatically do this and if you’re unsure, it may be helpful to check with your bank or building society. Need more support? If you have more money going out than coming in, contact a debt charity like StepChange or the National Debtline for steps on how to safely reduce the deficit. www.carersuk.org

Find help and advice: www.carersuk.org/help-and-advice

Caring for someone with an addiction – Rose’s story When Rose was caring for her daughter, she not only faced challenges with her daughter’s behaviour, but also with the services that were supposed to help. I became a carer the day that my daughter Beth hammered on the door and collapsed in a drunken heap saying that she couldn’t carry on. At least she recognised that she had an alcohol problem and was asking for help. “I initially tried to control how much Beth drank. But when Beth was seen by a treatment worker they told her I’d reduced her alcohol consumption too quickly. I was excluded from these meetings due to ‘client confidentiality’ – as if it was no concern of mine! Beth was told she needed to take responsibility for her own use. “Her ideal state was oblivion. Paramedics were often shocked at how unresponsive she was and took her to hospital – but when she was discharged

“Beth did receive funding for three months rehab, but there was still an emotional rollercoaster ahead.” @carersuk

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she would just start drinking again. Sometimes she smashed up things, beat herself with broken furniture or attacked her seventeenyear-old sister. It was a challenge to motivate her to sober up enough to get help. “Beth did receive funding for three months rehab, but there was still an emotional rollercoaster ahead. I was working, but when Beth relapsed I could not continue while also keeping her safe and dealing with social workers. “I started going to Al-Anon meetings but was not ready to hear their message to ‘let go with love’, especially as I saw Beth’s problems as a mental health issue. How do you let go of your child who is ill? Instead, Adfam inspired me to start my own support group. We met fortnightly, sharing stories and recognising patterns of behaviour, both in the people we cared for and ourselves. I found it helpful to let off steam with others who shared my frustrations with the treatment system.

“For me the outstanding issue is the failure to include families in care-planning and recognise that our wellbeing matters too. It isn’t acceptable to write ‘Mum to call an ambulance’ if the worker hasn’t discussed that with me. Services need to listen to families, rather than using confidentiality as a shield to avoid recognising the complexity of a situation.

Adfam is a national charity that provides support and information for family members and friends who are affected by someone else’s alcohol use, drug use or gambling. Find out more www.adfam.org.uk

Information and support

“Fine, thank you” Conversations with Carers by Rashmi Becker, MBE It is an instinctive response when someone asks how you are to say: “fine, thank you”. I have been having professional and personal conversations with carers throughout my adult life. I understand the realities of care work – both on the frontline, having worked in social care, and at home, growing up in a family with a severely disabled older brother. Over the years, I have lost count of the number of times that people have broken into tears as a result of the helplessness, guilt, fear and exhaustion that the relentlessness of caring brings. During my project, ‘Conversations with Carers’, which gives voice to the real-life experiences of carers, people talked about feeling shame and disloyal if they don’t meet an unachievable vision of good care. Having the time, space and most importantly the permission to talk honestly

is critical for carers. As much as I think I know about what care work involves, it always surprises me to discover the weight of care that people carry silently while going about their day. I so often meet people who appear carefree and free-spirited; it is only when they learn about my background that they open up about the devastating impact that life as a carer has had on them.

I thought that the challenge was to improve knowledge about the black hole in resourcing and the debilitating demands placed on carers. But hearing from sons, daughters, mothers, fathers, and frontline workers who provide care, I no longer believe we can attribute the poor treatment of carers simply to a lack of understanding, but rather to a lack of care.

There are almost seven million carers in the UK. Their voices are often unheard because they often supress their own emotions as they prioritise the needs of people they support. During the pandemic, the isolation, stress, and poor status of carers was magnified. For years I thought that society simply didn’t understand what is required of carers;

Many carers that I spoke to reflected on the low value that society places on caring. They described frontline carers being perceived as low-skilled ‘bum-wipers’. They talked about being dismissed over and over when raising concerns with healthcare professionals about a loved one’s disability. Carers talked about ageist and ableist attitudes resulting in a loss of dignity and a loss of liberty for the people they cared for.

“Carers I spoke to felt invisible, they struggled with maintaining their own mental health and wellbeing, and they experienced financial hardship.”

When it comes to ageing, most of us want to die quickly and painlessly. www.carersuk.org

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“There are almost seven million carers in the UK. Their voices are often unheard because they often supress their own emotions as they prioritise the needs of people they support.” The reality is that most of us will require care and support from family or paid carers. And while 1 in 5 people in the country has a disability, 46% of pension age adults (aged 66 and over) are disabled1. The lack of care and support for the millions of carers who are expected to keep going has negative and lasting impact for all of us. Carers I spoke to felt invisible, they struggled with maintaining their own mental health and wellbeing, and they experienced financial hardship – trading career for caring. One carer thought she would never recover from caring for her mother; a young carer spoke of having to grow up quickly at the age of 10 to help support his younger disabled brother; and a frontline carer chose to leave care work completely as a result of the

distress she experienced at the height of the pandemic. Research by Carers UK2 found 72% of carers said they had suffered mental ill health as a result of caring. Half of working-age carers live in a household where no one is in paid work and 1.2 million carers are in poverty in the UK. When you combine the statistics with the raw, real-life experience of carers, the case for change should be indisputably urgent. We can talk in general terms about societal attitudes and the burdens of care.

What we need is leadership at a political level to create the conditions that will drive radical change that results in fair financial recognition and the right social support for all carers, both on the frontline of social care, and hidden at home. I am grateful to the carers that have been part of Conversations with Carers and have spoken honestly and openly about their life experiences. I know this was not easy to do and I hope your words give voice to the millions of carers carrying on every day.

Conversations with Carers is a project led by Rashmi Becker, Founder of Step Change Studios and supported using public funding by Arts Council of England. To find out more visit: www.stepchangestudios.com/conversations 1 gov.uk/government/statistics/family-resources-survey-financial-year-2019-to-2020/family-resources-survey-financial-year-2019-to-2020#disability-1 2 carersuk.org/for-professionals/policy/policy-library/facts-about-carers-2019

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This is caring

Love & Care Shaun Deeney is a former journalist and Emmy award-winning film and TV producer who has made current affairs programmes for ITV on social issues, including care. His memoir, Love & Care, reflects on his experiences caring for his mother with Parkinson’s dementia. I had thought I might find time to continue with the book I was working on in France and care for Mum at the same time. I was wrong. I have tried to write about the experience of care as the days and weeks have gone by, even if it has only been in the form of rough notes and remembered scenes, right up to the hospital stay. “But since Mum came home, weeks ago, I have written nothing. I have felt drained of all incentive to relive events on the page. This might be self-pity, but it feels more like despair. “Looking back, it’s hard to understand why the experience took so much out of me. After all, I was not the patient. The antibiotics worked. Going in

each day to feed and water my mother prevented the doctors fitting a peg feed, and though there were bedsores on her sacrum and her feet had blisters that were open wounds, we came through it. “In the first week or two after her discharge from hospital, the district nurses came twice a day to change the dressings. They went about the task with an easy competence, apparently accepting that hospital could do such things to a vulnerable patient. The routine care visits started up again as if nothing had happened, as did mealtimes and medications. “For a while, family solicitations came thick and fast. There were even congratulations from the

“For a while, family solicitations came thick and fast. There were even congratulations from the carers, who seemed to have a new respect for me, or at least to have lost some of their misgivings about a man in this job.”

carers, who seemed to have a new respect for me, or at least to have lost some of their misgivings about a man in this job. Like the district nurses, they were sanguine about the sores. For many of their clients, a hospital stay signalled the beginning of the end. We were lucky, they said. “I don’t feel lucky, except in the sense that we are slowly getting back to where we were before. Something has changed. Not so much in my mother, but in me. She is quieter, more withdrawn, but otherwise as she was, as far as I can tell. But I have a new watchfulness, a distrust of things as they are, a sense that, having suffered one injustice, another could come along at any moment. “The system I once saw as a safety net no longer gives me confidence, mainly because there is such a chasm between social care in the community and hospital care. I may be gilding the past, but I have the impression – from my www.carersuk.org

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own memories as a sickly child, and from the history books – that in days gone by, that gap was bridged by local district nurses out in the community and by GPs who knew their patients as individuals, who together could spot trouble before it became a serious issue. Now, things are more impersonal and we are all more mobile in our lives, and the minor complaint of a urinary infection or a rattle in the chest can quickly escalate to become life-threatening.

“Which, on the surface, is true. The hours are counted out in coffee spoons and cake, pads and medications, shorter days and longer nights.

“I don’t feel lucky, except in the sense that we are slowly getting back to where we were before.”

“For weeks now, I have felt hunted in the day, shattered in the evening and wakeful at night. It is as if I too have lost a layer of skin. Still, we are recovering the status quo. We’re no longer an emergency and a source of worry to others, professionals and family. “Once again, we’ve become peripheral, the ticking clock on the mantelpiece of other people’s more hectic and chaotic lives, a separate world where no news is good news. Despite my strong sense that our life is more contingent than I fully understood, other people have reverted to seeing us as stable and unchanging. Interested in hearing more? Listen to another reading from Shaun on our Share and Learn videos page: www.carersuk.org/share-and-learn-videos

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This is caring

Shaun Deeney Q&A When my father died in 2015, Mum was in a care home because her Parkinson’s dementia had made it impossible for my dad to care for her at home. I was living in France at the time, but I came home and quickly realised I had a choice… I could leave mum in the care home, or I could take her back to the house she had once shared with my dad and become her carer myself. I think the isolation, and sometimes the monotony of every day being the same, weekdays and weekends, and no time off for good behaviour! It’s hard because it’s just you, and because often the person you’re caring for is on a downhill slide, no matter how well you care. That’s difficult – to witness and to accept – though there are plenty of upsides too. Cake for instance! Mum has Parkinson’s dementia, and so often communication is difficult, but she has a wicked sense of humour and catches me out when I least expect it. We have giggles together, hugs, sometimes a sundowner with a few cheesy snacks. We listen to music and I sing very badly, usually Frank Sinatra. Together we forget we’re in a care situation and become just two people together, sitting in the garden.

“We have giggles together, hugs, sometimes a sundowner with a few cheesy snacks. We listen to music and I sing very badly, usually Frank Sinatra.” What do you wish you’d known when you started your caring role? Definitely that perfection is the enemy of possible. All we carers are doing our best, without training, without pay and without many breaks. Don’t worry if you get it wrong, learn and forgive yourself, then move on.

Love & Care giveaway We have three copies of Love & Care to give away to Carers UK members! If you’d like to enter the giveaway, please email: comms@carersuk.org with the subject header, ‘Love & Care’. Winners will be notified by email.

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Festive recipes for carers When Helen Lewis’ mum started to lose interest in food, Helen wanted to help so started experimenting in the kitchen with nutritious recipes that were filling and tasty, without being overwhelming. Her mum’s appetite soon returned and she continued to cook and care for her mother for 10 years. She’s shared some of her favourite festive recipes with us and each one is deliciously easy to make. Meatloaf If the person you care for finds a roast a bit heavy, this is a nice way to combine the flavours of a festive roast in one go. You’ll need… • 400g turkey mince • 190g sage & onion stuffing mix • Two eggs • Tinned tomatoes (use the flesh only) • One cup of breadcrumbs or oats. Make up the stuffing mix and allow to cool. In a separate bowl, beat the eggs and add the breadcrumbs. Add the tomato flesh to the bowl. Combine all ingredients with the meat. Don’t allow the mixture to be too wet – you’re aiming for a dough-like consistency where you can shape the ‘loaf’. Add it to a baking dish or scoop into a muffin tin and cover with foil. Bake in a medium-hot oven for around 30 minutes, uncover and brown for a further 20 minutes. Makes a decent sized loaf or 12 muffin sized portions.

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Mincemeat Shortbread Cookies This simple recipe will fill the house with festive cooking smells. The addition of mincemeat also makes the mix softer and stickier, and so much easier on the teeth. You’ll need… • 200g plain flour • 100g salted butter • 50g caster sugar • One tablespoon of mixed fruit mincemeat • A sprinkle of icing sugar. Mix the flour and sugar together in a bowl. Add the butter and rub in thoroughly with your fingers until the mixture looks like breadcrumbs and begins to clump together. Add the mincemeat and mix well. Separate into 12 portions and place them on a greased muffin tin or tray. Press down until smooth. Bake in a medium to hot oven for 15–20 minutes. Dust with icing sugar to serve. You can also find more of Helen’s recipes in her book, A Carer’s Kitchen, which is available on Amazon Kindle: www.amazon. co.uk/dp/B099XXYJYH

This is caring “But what happens when you lose your loved one?”: How one carer is using his experience of bereavement to tackle loneliness in his community Frederick Smith set up Just Friends to help him feel less alone after his wife died. Now, he helps nearly 500 people living alone in East Sussex to connect, socialise and overcome loneliness together. In 2010 my wife Valerie showed the first signs of dementia and by the end of 2011 the diagnosis was Alzheimer’s. Like so many others, we had to adjust our way of living so that we could both cope. We found comfort in going to various dementia clubs. Care for the Carers in particular were so good, supportive, and always there when required. Valerie was not just my wife, she was my best friend and my soul mate. When we were together we were as one and she was my reason for living. Caring does take its toll but for me, it was nothing to the horror of seeing your loved one deteriorate before your eyes over a period of time. In March 2018 Valerie had really faded and I

knew she was holding on because she understood how important she was in my life. It reached a stage when I sat and held her hand and explained that I would understand whatever decision she made. Just half an hour later she shrugged her shoulders and passed from this world. Valerie’s passing left an enormous hole in my life and having been supported so much by the caring professionals, I then asked the question, ‘where do I go now for continued support?’. The answer was, ‘Sadly there is nothing available, you are now on your own’. It made me so angry. But I channelled my anger into starting Just Friends, knowing there must be many in the same situation.

“Valerie was not just my wife, she was my best friend and my soul mate. When we were together we were as one and she was my reason for living.” The vast majority of the world is made for two. Restaurants set their tables out for two, four and six. But what happens when you lose your loved one? Having a chat at the checkout of the shops might be the only time you speak to someone else in the whole day. I wanted to combat loneliness by creating a place where people could www.carersuk.org

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socialise and do activities. I announced my plans at a lunch in Eastbourne, and that was our first meeting, with just four people round the table in April 2018. I had no idea how much it was needed – we grew and grew. By July 2019, we decided to become a charity. In November 2019, we opened a second branch in Bexhill and just a few months ago we opened another new branch in Newhaven. In total, our membership already exceeds 450 and it won’t be long before it will be 500. But that number is nothing compared to the huge number living alone and feeling lonely. We run regular meet-ups to help people feel less alone. For example, at the Eastbourne branch we meet socially on the first and third Tuesday of the month, while the second Tuesday of the month is a walking group and then we have the lunch group on the fourth Tuesday of the month. The Bexhill and Newhaven branches follow the same format, but on a Friday and a Monday. Any member is entitled to visit any branch and enjoy their activities, so there is somewhere to go three days of the week.

“We now enjoy a range of events such as afternoon tea parties, coach outings, lunches, theatre visits and Christmas and Halloween parties.” When we became a charity we started applying for grants so we could subsidise events. We now enjoy a range of events such as afternoon tea parties, coach outings, lunches, theatre visits and Christmas and Halloween parties. A highlight was a day out we hosted on a 1967 Bedford Coach – it was great fun and members of the public even waved to us as we went past! Thanks to financial support from The Sussex Community Foundation and The National Lottery, we now even have a selfemployed administrator.

Running Just Friends has its challenges, but I enjoy it. It gives me a purpose, a reason to get up in the morning and the benefit of keeping active both mentally and physically. It also helps others with their mental wellbeing. We want to reach out to all those living alone and invite them to join us. In the future, if we can get more resources, we would love to open more branches. There is no membership, no age limit and no expectation, so if you live in East Sussex, don’t be shy and give us a try! Our website is www.just-friends.uk/wp

Carers UK run regular online meetups for people across the UK. Our Care for a Cuppas offer a chance for carers past and present to meet, connect and share experiences. Find out more and sign up here: www.carersuk.org/cuppa

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Help and support

Forum Q&A I provide care to a family member who is quite frankly the sunshine that brings life to my earth.

What I am struggling with is I am finding I’ve lost connection with knowing how to take the moments I have with my loved one and make memories they enjoy. I just want to see them smile, uncontrollably laugh, spark the personality I once knew to be the light of my life. They have a long list of ailments but the most painful to witness is the dementia as I am mourning someone I know is still ‘here’.

Reply from the forum...

I am new here so any advice would be welcome.

My father-in-law has been living with us for several years. He has always been really active and able to look after himself until about six weeks ago. He has a terminal illness and is going downhill quite rapidly. My husband and I are caring for him at home but he is now weak and unable to do anything for himself. Our GP has been very good and came out to see him and arranged the community nurses and palliative care team to contact us. Contact has been made, but so far no help as such. My husband is sleeping on the sofa so he can be near his father, but we are really struggling when it comes to moving, feeding, washing, toileting etc. We were told that we should have been fast tracked for a care package, but I have no idea what that is or what to expect. Any ideas?

“I suggest you do things that make you happy, smiling and laughing. They are likely to enjoy your company more and subconsciously pick up on your mood. “Tap into their long ago memories – music they enjoyed, pictures of when they were young, handle memorabilia they have kept. “Lastly, connect through their senses – sounds, smells, tastes, movements e.g. make cakes and let them touch, smell and taste the ingredients, hand massages with scented lotion or aromatherapy oil, watching and listening to birds visiting a bird feeder, etc.”

Reply from the forum...

“Welcome to the forum, it’s a safe place to share your concerns and get some help. “I’m sorry that you are experiencing the delay in getting the help that you and your father-in-law so desperately need. “It’s a shame but nowadays you have to be ‘assertive’ and follow things up or things can get lost in the system. “I should call the GP again, and the community support team, perhaps look into help from a local hospice.” Read more about Continuing Healthcare: www.carersuk.org/help-and-advice/ financial-support/nhs-continuing-healthcare

Talk to other carers who understand 24/7 at the Carers UK Forum: www.carersuk.org/forum If you need information or support, our Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can email advice@carersuk.org

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How do you prefer to connect with other carers? During the COVID-19 pandemic more carers than ever have found it helpful to connect with other carers online to provide emotional and practical support to each other. However, we know that online support isn’t for everyone and we wanted to find out how you prefer to connect with other carers and whether you would consider Q1

using our online forum and online meetups to seek and give support. We’d like to thank over 650 of you for taking the time to complete our survey in September. There were some really insightful findings which are already beginning to inform our work for supporting you during the coming year.

When COVID is not a consideration, do you prefer to connect with other carers online or in person (offline)? Online – 18% In person – 24% Happy with both – 49% Neither – 10%

Q2 What is your favourite way of connecting with other carers online? Carers UK forum – 18% Social media – 23% Carers UK’s online meetups – 12% Another organisation’s forum – 6% Another organisations online meetups – 9% Other – 32%

Interestingly, although only 19% of members report having used the forum, 78% of you said that you find it helpful. During November we therefore held a Forum Focus in the two weeks leading up to Carers Rights Day to encourage more members to give the forum a try. In response to your request for more input from Carers UK staff, we posted daily links to helpful @carersuk

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information on our website and asked you to post questions which our Helpline advisers answered on the forum and during a special Share and Learn session on 25 November. We’ll continue to develop our online support for carers throughout 2022 and beyond, but also recognise that we need to maintain our support to those of you who do not have online access.

FREE Online courses for carers Two interactive e-learning programmes from Carers UK Learning for Living

You and Your Wellbeing

Learning for Living is designed to help carers recognise their valuable skills and experience.

Although caring for someone can be very rewarding, it can also take its toll, physically and emotionally.

It is an online course that enables carers to:

Whether looking after a partner, disabled child, or an older parent at a distance, caring can create pressures which have an impact on carers’ wellbeing.

• explore the specific techniques they use to learn and communicate • develop assertiveness and confidence • gain knowledge and transferrable skills. With five interactive modules, the course takes approximately two hours to complete and registered students will receive a digital badge on completion.

Try Learning for Living today at learning4living.org

With funding from the Bupa UK Foundation, Carers UK has developed a free to access e-learning course designed to help carers build strategies to maintain their physical and emotional wellbeing. The course looks at physical and emotional wellbeing together, as each can have a significant impact on the other.

Access You and Your Wellbeing at carersdigital.org/wellbeing