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NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES
Volunteering – as easy as 1,2,3... p10
Carers UK’s Manifesto for carers p8
Care for a cuppa?
Raise much needed funds for carers by hosting a Care for a Cuppa
Find out more on page 12...
Your members’ magazine
Issue 51 | Autumn 2019
Welcome
CARERS UK HELPLINET 0808 808 7777Opening hours: Monday and Tuesday, 10am-4pm
KEEP IN TOUCHCarers UK20 Great Dover Street, London SE1 4LXT 020 7378 4999 E [email protected]
Carers ScotlandT 0141 445 3070 E [email protected]
Carers WalesT 029 2081 1370 E [email protected]
Carers Northern IrelandT 028 9043 9843 E [email protected]
Carers UK AdvicelineT 0808 808 7777 E [email protected]
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 November 2019
Welcome to the latest edition of Caring, where we look back on recent events and activities, share important news and information and hear from other carers about their experiences.
In October I felt privileged to attend my first AGM and Members’ Conference (read about this on page 14) which offered me the fantastic opportunity to meet some of our incredibly passionate members and volunteers, old and new. I think it goes without saying that the political landscape has remained challenging, but we are determined to keep the pressure up in order to effect change. This autumn, we launched our “Give Us a Break” campaign (page 9) and over 1,000 of you emailed Matt Hancock, copying in your local MP, to tell him about our campaign to increase support for carers in England to take a break.Ahead of the upcoming General Election, we have launched our “Manifesto for Carers” calling on all political parties to commit to improving the lives of the millions of unpaid carers across the UK. The manifesto includes seven priorities for
unpaid carers, which you can read more about on page 8, as well as find out how to get involved in our campaign to ensure every electoral candidate understands the importance of supporting carers. At Carers UK, we are ready to engage with any future government to bring change for carers, and to work cross-party to create a social care system that delivers for all – older people, disabled people, and unpaid carers.As I approach my one-year anniversary at Carers UK, I have been reflecting on what we’ve already achieved - and also on what we are planning for 2020 and beyond. Next year will see the launch of our strategic review, and I look forward to engaging with many of you as we strive to put carers at the top of the agenda. Thank you for everything that you have done for carers this year, and I know that you will continue to do in 2020.Helen Walker – Chief Executive
In this issue...
Carers Rights Day FREE Flu Jabs Carers UK’s Manifesto
4-5 8-9 10-11
32 carersuk.org
A central feature of Carers Rights Day is the publication of our updated ‘Looking after someone’ guide for 2020. ‘Looking after someone’ is our essential guide to carers’ rights and the practical and financial support available.Get your copy at carersuk.org/LAS
Change to ‘Find out more: carersuk.org/CRDHelp and support
I care for my 18-year-old daughter, who has a rare condition called hypoadrenalism. Day-to-day I provide her with physical and emotional support and personal care, and I can’t be more than half an hour away from her in case she goes into adrenal crisis. If that happens, she needs an injection which you have to be specially trained to give, and often the emergency services aren’t familiar with my daughter’s condition. I need to be my daughter’s expert and advocate as well as her carer. It’s very challenging and tiring at times. I don’t know if I would be able to work if it weren’t for Nutricia and their carers policy. They understand my need to work flexible hours and to leave work suddenly sometimes. I’ve progressed in my career since my daughter became ill seven years ago, and have worked with Nutricia’s HR director to strengthen the carers policy. We’ve also
Case studyJo Waller, working carer
developed a carers group on our intranet to connect carers across Nutricia. My advice to people juggling work and care is to be as open as possible with your employer about your caring responsibilities. Meet with HR and your line manager together to discuss your role as a carer and keep them updated as it changes, and make sure to have documentation to back up any verbal agreements you make.Outside work, I’m registered as a carer with my GP, which is helpful when making appointments as they understand that my time can be short, and I have a card in my car explaining that I care for my daughter in case I’m in an accident. I’ve found the Carers UK website helpful as well
– it has lots of useful information on it.
“My advice...is to be as open as possible with your employer
about your caring responsibilities”
We’re excited about Carers Rights Day, Thursday 21 November. Each Carers Rights Day, hundreds of organisations across the UK hold an event or activity to help people in their community find out about their rights as a carer and where they can go for help and support
Carers Rights Day
From coffee mornings to information stands, guest speakers to advice sessions, this year’s Carers Rights Day is set to be brilliantly busy and informative.This year’s Carers Rights Day theme is ‘Helping you find your way’. Caring can feel overwhelming, bewildering and stressful, with carers trying to navigate a maze of
health and social services. Juggling work with caring and considering how to fund care costs, as well as the emotional challenges of being a carer, only adds to the pressure. With 6,000 people in the UK becoming carers every day, it’s more important than ever that carers understand their rights and are able to
access the support available to them as soon as they need it. Carers Rights Day enables us to join together with organisations from across the UK to help carers in their local communities find their way and empower them to find any assistance that will benefit them.
2019/20
Looking after someoneInformation and support for carers in England
Carers Rights Day • Making carers aware
of their rights
• Letting carers know where to get help and support
• Raising awareness of the needs of carers
#CarersRightsDay
@carersuk 5/carersuk4 carersuk.org
Read more about flu jabs at: carersuk.org/flu-jabsNews and campaigns
A flu jab can help maintain carers’ health and wellbeing – essential when 61% of carers say their physical health has worsened as a result of caring – and enable them to continue to look after the person they care for. Carers, defined by the NHS as those who receive Carer’s Allowance or who are the main carer for an older or disabled person whose welfare would be at risk if the carer fell ill, are one of the groups eligible for a free flu jab from their GP or pharmacist. However, according to Carers UK research, not all carers are accessing their free flu jab. We found that only 55% of carers aged 50-64 had received a flu jab. In contrast, 80%
With up to 20% of the UK population coming down with the flu each year, everyone could benefit from getting the flu jab this winter. But for unpaid carers, it’s even more important to be vaccinated against what can be a serious illness
Carers’ access to free flu jabs
of carers over 65 – who are entitled to a free flu jab due to their age – had received the vaccination. From speaking to carers, we know that their experiences of flu jabs are varied and that there are a number of reasons why a carer aged 50-64 may not have had the vaccination. Many carers do not know that they are entitled to a free flu jab, or would need to get alternative care for the person they look after in order to attend an appointment. Since carers in this age group are often in work, they may also find it difficult to find the time to visit their GP or pharmacy.
Our Carer Support team says:“If you’re the main carer for someone who’s ill or disabled, keeping well yourself is a top priority. If you came down with the flu, there might be no one to step in to help look after the person you care for, or you could risk passing the virus on to them. Make sure that you don’t miss out on a free flu jab – you should be able to request one from your GP or local pharmacist.”
Our flu jab campaign:
Between August and October, we ran a campaign to raise awareness of carers’ entitlement to a free flu jab, focusing particularly on carers aged 50-64.
We contacted almost 7,000 GP practices and encouraged them to invite carers registered with them for a flu jab.
We also provided posters and social media graphics to enable practices to reach carers in their waiting rooms and online and make them aware of their entitlement to the free flu jab.
This campaign was supported by an independent educational grant from Seqirus.
FREE FLU JAB
for carers
So how can the number of carers accessing their free flu jab be increased, to ensure that carers and those they care for are protected during flu season? We have a few key recommendations:
• GPs should be supported to identify carers earlier in their caring journey and to have conversations with them about the support available to help them look after their own health and wellbeing.
• GPs should be encouraged to integrate flu jabs into other healthcare provision, eg they should be carried out during other appointments to reduce the inconvenience to carers.
• Awareness around the benefits of having a flu jab should be increased for all carers.
For more information visit: carersuk.org/flu-jabs
@carersuk 76 /carersukcarersuk.org
An update on our “Give us a Break” campaignDue to the general election, the ‘Give us a break’ campaign action is currently closed. Over 1000 members and supporters wrote to then Secretary of State for Health and Social Care, Matt Hancock MP, to tell him about our campaign and to ensure that carers are at the heart of the development of future health and social care policy.
We know that access to breaks is something that is important to members and supporters and we will continue to campaign once a new Government is in place.
Read the manifesto in full at: carersuk.org/manifesto19
Carers UK has created a manifesto that outlines the top priorities unpaid carers would want to see delivered in the future, calling on all political parties to commit to improving the lives of the UK’s 6.5 million unpaid carers.
Here we summarise the key points of the manifesto, which can be read in full at carersuk.org/manifesto19
Carers UK’s Manifesto for carers
Caring is an important part of life, it’s simply part of being human. Carers hold families together, enable loved ones to get the most out of life, and make an enormous contribution to society. Caring will affect most of us at some point in our lives, and every day 6,000 people become carers.Demographic changes and an ageing population mean that the number of unpaid carers looking after family members and friends is
increasing. The number of people aged 65 or over and caring for a loved one has grown from 1.4 million to potentially over 2 million; a 43% increase from 2011 to 2019.1 Meanwhile, a further 1.3 million sandwich carers look after an older or disabled person whilst they also have young children. The amount of people providing substantial care has risen; we know that 1.4 million people now provide over
50 hours of unpaid care per week.2
Carers play a vital social role by providing care worth £132bn each year3 – equivalent to a second NHS. In spite of this, they are in need of more support and recognition to enable them to make decisions about how they care, and so they can live a life alongside caring.This need for increased support and recognition comes in many forms:
• Health and wellbeing – carers are more than twice as likely to be in bad health as non-carers,4 and seven times more likely to be experiencing loneliness and social isolation than the general public.5
• Finances – too many carers struggle financially because of their caring role; 1.2 million carers are estimated to be living in poverty. Two thirds of carers providing substantial care pay towards the cost of care for their loved one, and over half (53%) are unable to save for their future or for retirement.6
• Working and caring – Carers UK’s recent polling suggested 5 million people now combine paid work and caring. Yet for many the challenge of balancing both can become too much, over 2.6 million people have given up work at some point to care, and 2 million have reduced their working hours to care. Every day 600 people have to leave work in order to care.7
• Carer’s Assessments – despite a right to receive one, many carers face long waits for Carer’s Assessments and too often insufficient tailored support is available post-assessment.
We believe we need to change the way we support
and recognise carers so they can continue to care whilst also living a fulfilling life beyond their role as a carer. Our vision is of a society that respects, values, and supports carers.
Priorities for lasting changeWe want all political parties to support the millions of un-paid carers by committing to:1 Placing carers at the
heart of a reformed and properly funded system of social care
2 Ensuring that carers and their families do not suffer financial hardship as a result of caring
3 Increasing and ring-fencing funding for carers’ breaks, and improving transparency to ensure that many more carers are able to take a break
4 Creating a National Health Service that recognises, values and supports carers
5 Ensuring carers are able to juggle work and care with support to return to work
6 Ensuring a strategy or action plan is in place to support carers
7 Raising public awareness of carers and caring
1 ‘State of Caring 2019 (2019), Carers UK; 2 Census, (2011); 3 ‘Valuing Carers 2015’, (2015), Carers UK; 4 Census, (2011); 5 ‘Getting Carers Connected’, (2019), Carers Week; 6 State of Caring 2019’, (2019), Carers UK; 7 ‘Juggling work and care – a growing issue’, (2019), Carers UK
To read the manifesto in full and take action visit: carersuk.org/manifesto-action
News and campaigns
@carersuk 98 /carersukcarersuk.org
Visit carersuk.org/volunteer for everything you need
How you can help Volunteer with us: carersuk.org/volunteer
We’re so lucky to have such a wonderful and dedicated family of volunteers supporting carers across the UK! They’re able to help us reach, identify and support more carers than ever before
Volunteering in three simple steps
Some volunteers signpost carers to information using their social media, leave some leaflets in their GP Surgery, give us feedback on our resources, or become a champion for carers in their workplace. There are so many ways to get involved.So, whether you can spare a few hours or a few minutes a month – join us! If you’re interested in volunteering but aren’t sure where to start, follow these three easy steps…We’ll be in touch with support, more information about your role and regular email newsletters.
We asked our Social Media Volunteer, Janet, to tell us about herself and her volunteering. Janet was a practice nurse but nothing prepared her for caring for her mother-in-law, who has complex care needs.
Why I VolunteerJanet Still Jones
Tell us about your caring experience?Upon accepting the necessity of living with my mother-in-law, I quickly recognised that she had many health concerns that complicated her care needs. She was 91 with multiple-type dementia including Alzheimer’s, in addition to other chronic diseases. After I moved in, Mum completely let go and proceeded to regress through the next five years. In retrospect, the decline moved rapidly. As a family, my husband and I did what we could to mark seasons and holidays for her. As long as she was willing and able, we took her out and about. The last 18 months, she became bedridden in a hospital bed in the middle of our house. I supported my husband and brother-in-law who were holding on to old expectations of Mum, until they could accept the dramatic changes - like Mum no longer knowing their names. This was hard,
the whole experience took a huge toll on my own health. My husband’s heart failed during this time too. My brother-in-law is disabled and frequently ended up hospitalised. But I will NEVER regret the opportunity to give in this way. These are the experiences that give life meaning.
Why did you choose to volunteer?As a fulltime live-in carer, I needed a lot of information and fast; to make sure Mum received the best care for her health condition. Carers UK stood out above all the other resources suggested to me. On the website and in the Forum, I received immediate answers or concise direction for where to find the answers I needed. And the important aspect of that was not just the immediacy, which made me feel like someone cared, but that the information and direction was always the up-to-date, efficient and effective help that I needed!
Is it easy to volunteer? Volunteering with Carers UK is effortless to me, but I understand that people new to volunteering can feel perplexed about what to do. For me, this is personal; this cause matters to me. So, when new volunteers need help, I happily volunteer to be present for them too. I’m a Social Media volunteer. This role is super easy to do.
What difference do you feel it makes? The main reason that Carers UK matters to me is that caring is underrated, even looked down upon, in our ‘modern’ society. Yet, when the shoe is on the other foot, suddenly people find they need help. And I know that there is no one as caring as people who care for a loved one…even when they think they are terrible at it. I want to help more people receive the support they need to feel good about the care they give or receive.
Describe what it means to be a volunteer in one word? Gratifying.
Watch our short volunteering videoIn it, volunteers talk about what inspires them and why they volunteer for carers.
1
Choose what you’d like to doBrowse our volunteering roles which will tell you all the different ways you can get involved. You can sign up for more than one role or change your role at any time.
2
Sign-upWhen you’re ready, click ‘Apply Now’ to sign up.3
1,2,3
You can also join other volunteers on our Facebook group to share tips, celebrate successes, or if you just fancy a chat.
@carersuk 1110 /carersukcarersuk.org
Holding a Care for a Cuppa fundraiser is a great way to bring friends, neighbors and family together to talk about caring, and raise vital funds for Carers UK
We were so lucky to have one of wonderful insight volunteers, Kathryn, host a Care for a Cuppa event at her home to relaunch our Care for a Cuppa fundraiser. She invited her family, friends and members of her two local churches to join her for an afternoon of tea and coffee, cake and scones; taking some time to catch up with old friends and make new ones - all
How you can help
Getting your friends round is as easy as one, two, TEA!
while raising money for Carers UK.Kathryn said that although this was her first Care for a Cuppa, “it was easy to arrange - I rang my mum and dad and a few of my friends and word spread fast. People dropped in when they could and it was great to see everyone and be able to share some of my baking - all for such a good cause. I think some of my
friends are inspired to host their own!”Hosting a Care for a Cuppa event is a piece of cake. It just involves serving up plenty of refreshments and collecting donations for Carers UK. It’s a great opportunity to celebrate the role of carers, helping us to raise awareness of caring and point those who need us to where they can get information and support.
Host a Care for a Cuppa: carersuk.org/cuppa
Here are our top tips for a fantastic cake-filled event: • Find the best venue for you - whether it’s
at home or in your local community centre
• Tell family and friends about your fantastic event, and why you are supporting Carers UK
• It’s a team effort! Organising a Care for a Cuppa is much more fun as a team - ask if others can help with baking and hosting on the day
• The Carers UK team would love to know about your event! We can also send you a collection box – just email [email protected]
Can’t hold your own event? You can still support Care for a Cuppa through text to donate. Text ‘CUPPA 5’ to 70450 to donate £5. (This costs £5 plus a standard rate message.)
#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 [email protected] to see our full 2020 events calendar.If a challenge isn’t for you, please share with your friends, family and colleagues.Thank you to all the incredible members of Team Carers 2019 who have raised over £16,000!
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:
For more information and to download posters and more, visit carersuk.org/cuppa
29 March London Landmarks Half Marathon
31 May Run4Colour 5K, East Anglia
5 July Wales 10K
20 SeptemberSpartan Sprint Scotland
@carersuk 1312 /carersukcarersuk.org
Conference sessions included the importance of taking a break, juggling work and care, and carers making and shaping change. A trainer from mental health charity MIND also provided practical tips on carer wellbeing. Reiki massage, beauty treatments, creative writing and wellbeing sessions took place over lunch, as well as meet-ups of our volunteers. We were really pleased that
Follow conference updates: carersuk.org/agm19This is caring
In October, over 140 Carers UK members attended our AGM and Members’ Conference in London.
What happened at the AGM & Members’ Conference 2019?
From the CUK Twitter feed...
I am on the train home reflecting on the inspiring and rejuvenated day I’ve had at @CarersUK AGM and Members Conference as well as the joy I felt when I looked around and saw another person from Rutland and later found out that there was also someone from Leicester #CarersUK2019
#CarersUK2019 Carers talking about shaping and making change. Passionate about carer voice and integration where voices need to be heard.
#CarersUK2019 what a great AGM. Great to hear @CarersUK performance and plans. No wonder carers come year after year.
I’m at #CarersUK2019 AGM and conference in Canary Wharf today. Already had some interesting coversations with #carers and CarersUK staff
Maintaining carer wellbeing session #CarersUK2019 Hanlie, @MindCharity Harrow teaching methods to notice yourself, to bring your mind back to the present and ground yourself. The now famous pebble exercise and In for 4 & Out for 8 breathing. #Wellbeing #carers #Mindfulness
Big day today my first @CarersUK AGM and members conference. Can’t wait to meet, talk to and listen to our members #CarersUK2019
Funny, frank and wise, from Emma Lownes @maudandmum about juggling work and care #CarersUK2019 @CarersUK
“It was a really great conference and a very well organised day. I really enjoyed
it and feel like I’m part of a family
that I didn’t know I had!”
– AGM 2019 delegate
members had such a great day, with 73% rating the event ‘excellent’ and 26% ‘good’. A big thank you to everyone who attended and contributed on the day. We’d like to thank Clifford Chance for providing such a brilliant venue. This year, the Carers UK AGM and Member’s Conference was supported by a grant from The National Lottery Community Fund.
Jacqui @Jacdarl
Lorena Jane @TakePartin_Art
Maud & Mum @maudandmum
Denise Ann Jackson @DeniseAnJackson
Andrew Cornwall @AndrewCornwall5
Helen Walker @Helen_M_Walker
Helen Brown FRSA @DrHelenBrown
Look out for video clips on our website coming soon: carersuk.org/agm19
@carersuk 1514 /carersukcarersuk.org
It was the fourth briefing to be compiled, and covers the third year since the Social Services and Well-being (Wales) Act was implemented in 2016. The evidence gathered from Welsh carers, and information received from local authorities and local health boards across Wales, paints a disappointing picture that the act is failing to make any real impact despite giving carers legal rights.The latest research was launched at a meeting with policy makers from Welsh government, local authorities, local health boards, academics and
With more than 6.5 million unpaid carers in the UK, our recent survey found that 81% reported having felt lonely or isolated as a result of their caring role. And although carers sometimes find it difficult to share how they feel, we believe it’s time for us all to talk about caring and help carers get the support they need.The people in the film are each caring for someone who is older, disabled or seriously ill. And the person accompanying them is very close, yet unaware of how their caring responsibilities are personally affecting them. After viewing the film, many carers have told us how strongly this relates to their own experiences - and how keen they were to share the film with their friends and family.
“Unpaid carers in wales feel demoralised and disillusioned.” This was the headline message Carers Wales sent out in a press release when they launched the results of this year’s Track the Act briefing in October
Earlier this year we worked with our strategic partner, British Gas, to create a film highlighting the impact that caring can have on people’s lives - and how those closest to them may be unaware of the emotional toll that caring can take
News & campaigns
Carers Wales - Track the Act 4 Share that you care campaign
The Track the Act briefing is available on carerswales.orgWatch the videos here: bit.ly/share-care-videos
Vote here: bit.ly/cuk-film-award
the voluntary sector at a meeting held in Cardiff. Claire Morgan, Director of Carers Wales, also presented the findings to the Deputy Minister for Health and Social Services at the fourth meeting of the Ministerial Advisory Group for Carers on 8 October 2019.The research has been widely distributed amongst politicians and key policy makers in national and local government, along with colleagues and policy makers in health and the voluntary sector, and will be used as the cornerstone of Carers Wales’ policy and influencing work over the next year.
We’ve already won awards for the film – at the DCM Awards in September, and in the ‘services’ category at the Campaign Big Awards in October – but now we need your help! We’ve been nominated for a Charity Film Award, and voting is open until the 1st of December.
Campaign with us: carersuk.org/news-and-campaigns
57%
85%
81%
of carers responding to the survey said they did not get any support
have not had a Carers Needs Assessment in the past 12 months
of unpaid carers who responded to our recent survery reported having felt lonely or isolated as a result of their caring role
@carersuk 1716 /carersukcarersuk.org
Connect with other carers: carersuk.org/forum
Caring for someone with dementia can be stressful, with additional challenges to be met but, with support, it can be an enriching and rewarding experience. We’ve invited Dawn to share her story through the diary entries she kept while caring for her father-in-law, John.
This is caring
Potatoes, carrots and half an onion: conversations with an octogenarian with dementia
Widowed for over twenty years, my father-in-law John Nicholson has lived in the same small village on the outskirts of Lincoln all his life. A keen bell ringer and vegetable grower, and in good physical health, at eighty-seven he began showing increasing signs of dementia. When he fainted at church one Sunday, we assumed he’d dashed to the service and, standing and sitting repeatedly as part of the choir, his blood sugar levels had dropped. But when it happened again a few weeks later we realised he was hurrying to church because he didn’t know what day it was, that only the sound of the bells ringing was alerting him to the fact it was Sunday. Shortly after, we started getting middle-of-the-night phone calls about how dark it was, John wanting to know if it was dark where we were too. He forgot or muddled people up, lost and misplaced money and keys, prompting
‘It’s fine I’ve done it like this loads of times,’ he says, climbing.‘No John, honestly, I don’t think it’s safe. Come down and let me do it.’He goes up another two rungs and I hang on to the bottom of the ladder, cringing, imagining what they’ll say at A&E. ‘So, you were holding a ladder for an eighty-seven-year-old to climb a tree? Apples you say?’‘I used to go up ladders three times this height when I worked in a market garden,’ John says cheerfully, ‘the boss used to tie a ladder on the end of another one.’ ‘Yes, but you were probably a third of the age you are now. And they’d never let anyone do that now because it’s dangerous. Like this is dangerous.’‘I was twenty I think.’‘Exactly,’ I say. ‘And twenty-
more panicked phone calls. At the time, I was working as an Independent Mental Capacity Advocate in Lincolnshire. In and out of care homes and hospital wards, mental health units and supported living homes, I shuttled around the county, one of a small team whose role it was to support people deemed to lack capacity to be involved in making decisions about their lives. Working as an IMCA meant a lot of talking to people - usually older people with dementia or Alzheimers - about very specific things like where they wanted to live and how they wanted to be cared for. Almost always, the people I spoke to wanted to stay in their own homes and maintain their independence for as long as possible, something I tried very hard to help them do. So when John’s short term memory problems became more obvious, I knew what the likely outcome would be. Already it was clear our
twice weekly visits weren’t enough, that he needed more help if he was to remain at home. Worn out with driving and a massive caseload, it was easy for me to make the decision to care for him. In doing so, I hoped to relieve my husband of some of the anxieties he had about his father and allow John to stay at home, doing the things that mattered to him – gardening, going to church and to his sister-in-law’s – for as long as possible. I kept a diary of the time I spent with John, a day by day account of caring for someone with steadily worsening dementia. In it, I recorded our many conversations, charting both the funny and poignant moments, the reality of seeing a person lose much of what makes them who they are, while at the same time observing how their personality becomes distilled by the disease.
A stone of applesI’ve just started heating up some beef stew for John’s lunch when he says he wants to pick some apples, ‘some of those russets,’ but they’re a bit high up. There’s talk of a ladder, so I think if he’s going to be going up a ladder – and there’s no point trying to dissuade him – I’d better get him to do it while I’m here, rather than after I’ve gone home.Everything in the garden is sodden, the ground soaked, especially where the fallen apples have begun to rot in the long grass under the trees. John attempts to pull himself onto a low branch, sliding around until I manage to persuade him we would be better off with that ladder. I help him fetch it from the garage and don’t argue when he insists on carrying it, assuming all the while that it will be me going up it. But when we get to the tree in question, he rests the ladder against some spindly looking branches and starts to climb.‘John, you can’t put it there, there’s nothing to support it.’
year-old bones heal a lot quicker than eighty-seven-year-old bones.’‘Ground’s soft,’ he says, as if that settles everything. ‘If I fall I won’t hurt myself.’ ‘Not if you land on your bottom you won’t, but what if you hit your head against the ladder?’ ‘It’s all right,’ he insists. ‘You hang onto that and take the apples off me as I pass them to you.’ I do as he says, feeling utterly ridiculous, discarding one in every three of the apples because they’ve got bits missing or have been eaten by birds. Next door, Mrs M is out in her own garden, tidying. If she’s watching, she’s probably commiserating; her husband died earlier this year of something dementia related. ‘He went a bit mental like,’ was John’s explanation.
My DiaryThe following extracts are taken from Autumn 2017, when we were beginning to understand just how confused John was.
@carersuk 1918 /carersukcarersuk.org
Connect with other carers: carersuk.org/forumThis is caring
At last the basket is full. Relieved, I put the ladder away and go inside to finish lunch. John squeezes past me, lugging the basket into the bathroom to weigh it on his bathroom scales.‘Can you see it?’ he calls, peering down at the reading. ‘I haven’t got my glasses on.’ ‘It’s a stone John,’ I say, ‘Fourteen pounds of apples. That’ll be enough to be going on with, I should think.’ He smiles, pleased with his efforts and wobbles off towards the living room. A minute later, he’s back to weigh his bounty again. I remind him that he’s already done it. ‘A stone?’ he says. ‘That’s good isn’t it?’ Over lunch John asks me to take the apples to his sister-in-law’s in the car. Appalled by my feebleness over the ladder, I say no this time, on the grounds she might not even want them. ‘I’m not bothering Kathleen,’ I say. ‘What’s she going to do with a stone of apples?’
‘Well, I’ll phone her after I’ve finished this,’ he says, ‘she might want them for one of her church things.’ Half an hour later, I drive to Kathleen’s with the apples, which she does want for a church sale. It’s always illuminating talking to her. Over the last year, John has become besotted with his sister-in-law and though he generally remembers she’s married, that doesn’t stop him visiting whenever he feels like it, so Kathleen’s always our first port of call if we’re baffled by John’s account of his life and want a more reliable version. When she and her husband went on holiday last month, John told us he’d walked to her house with his mower and cut her grass. What he didn’t mention is that he also cut her neighbour’s and the small patch of grass in front of the Co-op.‘Didn’t anyone challenge him?’ I ask.‘They must’ve thought he was a council workman.’ ‘Oh, he’s still complaining about feeling dizzy,’ I say on the way out. ‘Has he been all right at church?’A wry smile. In her view, John’s fainting in the choir a couple of months back was the result of nothing more than ‘showing off’ - trying to out-sing everyone else.
‘I take these then do I?’The house is all locked up when I call round at my usual time to make John’s lunch, his key in the lock. I try ringing but when there’s no answer and no signs of life inside, I head home. Half an hour later, I get a call from David to say his father’s up and sounds fine, though he’s complaining he feels dizzy. Drive back and find the house smelling of onions. There’s a pan on the hob, still warm but turned off, no sign that John’s eaten anything more than the other half of the onion swimming in it. Make him a cup of tea and offer to do him something to eat, but he says he’s not hungry. I offer him two of the tablets his GP has prescribed for dizziness but he refuses them, so I leave them on the table, beside his cup.‘I take these then do I?’ he asks, taking them. I make him another drink and give him a slice of fruitcake with it. John perks up immediately. He feels better now, but thinks he should go to the doctors about this dizziness. He’ll go after his tea.‘Why don’t I ring the doctor’s and see if I can make you an appointment?’ I suggest, ‘save you a walk?’‘No, I’ll go when I’ve had my tea, what time is it?’
‘Quarter to three.’‘I thought it was later than that.’ He looks at the super duper dementia clock David got him with its time, day and date display. Like so many overpriced gadgets marketed for people with dementia, the clock is only any use if John actually remembers to look at it, and then remembers to look out of the window to see whether it’s day or night. ‘How many of those tablets have I got left?’ he asks. ‘You’ve got plenty.’‘How many am I supposed to take?’‘It says to take two up to three times a day if you’re feeling dizzy. And don’t operate any heavy machinery.’ He laughs. ‘You could ring the doctor’s if you like.’ I ring the surgery to be told there are no pre-bookable appointments available within the next two weeks and I should ring at 8am tomorrow to get a same day appointment. What if someone can’t ring at 8am but they need to see a doctor? I ask. That’s the system she’s afraid; if it’s an emergency I should call an ambulance. Exasperated, I put the phone down and explain all this to John.‘Well, I’ll just go up there,’ he says reasonably. ‘They can’t turn you away can they, it’s the doctors.’
And actually, that’s not a bad plan. It’s all very well having targets for people to see a GP the same day, but how are people with dementia supposed to navigate such a rigid system, when they can’t remember what day it is, much less remember to call at a particular time? John knows. By circumventing it; by presenting himself, in person, before a receptionist who, however well-schooled in the hundred and one ways to say no, will find herself ill-equipped to refuse an obstinate octogenarian when said octogenarian is standing in front of her.‘Let me have another go,’ I say.I call again and explain the situation, asking nicely if they might bend the rules and let us make an appointment for tomorrow so I can tell John and stop him turning up without an appointment. But the woman sighs down the phone and says she can’t even access tomorrow’s appointments until 8am the next day.‘Okay,’ I say. ‘I’m going home soon and though I’ve explained all this to my father-in-law, he’s adamant that he’s just walked in and seen a doctor before, so I’m fairly sure he’s going to attempt to do that today.’She insists that couldn’t have happened unless there’d
been a cancellation and he just happened to come at the right time and though I don’t disagree with her, I think John’s right and that’s exactly what he did.‘Well anyway,’ I say. ‘If he does come, can you be nice with him and just explain and either me or my husband will call tomorrow morning to make an appointment?’ She takes his name. ‘Well, you’ve tried your best, you can get off if you like,’ John says when I relay the conversation to him. ‘I’m all right now. Thanks for all you’ve done.’ This is novel. He’s never told me I can go home before. I leave him a sandwich and do as instructed, knowing that as soon as I’ve gone, he’ll be on his way to the surgery and probably on to his sister-in-law’s, at the other end of the village, from there. Well, you’ve tried your best.
“It’s all very well having targets for
people to see a GP the same day, but
how are people with dementia supposed
to navigate such a rigid system, when
they can’t remember what day it is”
@carersuk 2120 /carersukcarersuk.org
I’m a father of two, and married to my partner (who I care for). My wife’s ability to work, look after the house, and look after the children is severely impaired. So I am single dad, carer, and I also work 20 hours a week to help make ends meet.My work is a blessing… it gives me a chance to take my mind off things and I do genuinely enjoy the work. But lately, home has begun to suffer. I’m finding myself becoming easily irritable, neglecting housework, even making up excuses to not do activities with my kids.
Help and support
Policy updates Forum Q&A
Q
Connect with other carers: carersuk.org/forum
Replies from the forum...
“Welcome to the forum. You have got a lot on your plate and do need some help.
Have you and your wife had Needs and Carer’s assessments? As for all the housework etc. Prioritise as to what has to be done daily, and space out the rest so you don’t feel overwhelmed by the mass of chores. It may help you to delegate days to different areas or tasks. Not everything has to be done every day, so concentrate on safety for the children and if it comes to playing with them or dusting the shelf, then play with them, the dust can wait till later. You also need to factor in a regular break/off duty time for yourself. Me time is essential for your own well being.”
“You need to TALK to someone about your circumstances. It could be a friend, family member or someone official. You have done remarkably well coping all this time.”
“Sounds like you are doing a fine job, but juggling everything is just too much. Something has to give, don’t let this be you or the kids. You definitely need some help and a needs assessment is the start of this process. Many of us have been in a bad place through caring, so we totally understand here how you feel. It isn’t easy, so I hope we can help support you.”
Talk to other carers who understand 24/7 at the Carers UK Forum. Visit carersuk.org/forum to get started.
It’s an horrific feeling when I look at myself from the outside, but I can’t seem to find a way off this slope I feel I’m sliding down and I’m worried that things are going to spiral out of control.
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“How old are the children? My grandson is now 7, his little job has always been to lay the table, because unless it’s laid we can’t eat our meal. He can also load the dishwasher, and empty it out. He also understands the difference between the recycling bin and the rubbish bin. Very little children can learn this, and join in with keeping things OK.”
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05 November 2019Reaction to Government response to Carer’s Allowance overpaymentsIn November, The Work and Pensions Committee published the Government’s response to its report on overpayments of Carer’s Allowance.Carers UK had previously called for the Department of Work and Pensions to write off these overpayments where its own administrative delays have allowed them to accrue; this was also a recommendation made by the Work and Pensions Committee in its report. In its response,
the Department does not commit to writing off overpayments or reviewing whether the majority of overpayments should be pursued.Commenting on the Government’s response, Emily Holzhausen OBE, Director of Policy and Public Affairs, said:
“Given that so many carers relying on Carer’s Allowance struggle financially, it is incredibly disappointing that the government has
not considered writing off the overpayments caused by its own administrative delays. This will do nothing to reassure carers who continue to sit up at night worrying about debt that could affect their incomes for years to come. The assessment of the impact of overpayments will be essential.”Carers UK will continue to raise the issue of Carer’s Allowance overpayments in 2020, when a new Government is in place.
04 November 2019Response to new rate of Carer’s AllowanceEarlier in November, the Secretary of State for Work and Pensions announced changes to social security benefits and pension rates for 2020/21. These will come into force in April 2020.One change that will impact carers is that Carer’s Allowance will rise by 1.7% to £67.25 a week, an increase of £1.10 from the current rate of £66.15 a week.
Commenting on the new rates, Emily Holzhausen OBE, Director of Policy and Public Affairs at Carers UK, said:
“Carer’s Allowance will rise with inflation to £67.25 per week, but a £1.10 increase won’t do much for carers who are struggling to pay the bills and put food on the table.Carer’s Allowance is the lowest benefit of its kind and Carers UK is calling on the next government to
significantly increase the benefit and associated premia to make it fairer for carers across the UK.”
22 We’re here for you... Adviceline: 0808 808 7777 Forum: carersuk.org/forum 23
Volume two
No one should have to care aloneAn anthology of poems and stories
No one should have to care aloneCarers U
K creative writing anthology: volum
e twoCover photography by Dawn Hart, who cares for her twins Ethan and Grace.
The Carers UK creative writing competition underlines the power of sharing the challenges, joys and complex emotions that come with caring for a loved one.
Featuring poems and stories from the 2015 competition, this anthology focuses on Carers UK’s 50th Anniversary message: no one should have to care alone.
Read inspiring and powerful writing about lives touched by caring, and explore shared perspectives, diverse experiences and distinct ways of writing about them.
However caring affects you and your family, we’re here.carersuk.org
“No one should have to care alone and no story that needs to be told should go unheard. This is writing that demands to be shared. Discover poetry and stories where words have conspired with the imagination to convey experience, increase understanding, and communicate feelings that might otherwise never have been known.”
– Cheryl Moskowitz, competition judge
CUK Poetry Anthology Cover 2015.indd 1 25/02/2016 17:37
Volume four
Not in the planAn anthology of poems and stories
Proudly supported by:
Keeping Well, Keeping Connected
Carers UK creative w
riting anthology: volume five
Keeping Well, Keeping ConnectedAn anthology of poems and stories Volume five
Proudly supported by With thanks to
Cover photography by Stacy Donne
The Carers UK creative writing competition underlines the power of sharing the challenges, joys and complex emotions that come with caring for a loved one.
This anthology features poems and stories from the 2018 creative writing competition.
However caring affects you and your family, we’re here.
“I am happy to say that this anthology arising from the Carers UK Creative Writing competition, now in its fifth year, boasts work of the highest quality; writing that is intensely moving and ceaselessly imaginative. The poems and stories here continue to further our understanding and deepen our appreciation of the caring experience whilst creating new and positive connections between us all.”
– Cheryl Moskowitz, competition judge
“Well done on another lovely creative writing competition. It is such a great event for us all to get close to the real emotions of other carers. Carers UK put it together with so much thought and passion.”
– Tiggy Walker, Patron of Carers UK
carersuk.org
CUK Poetry Anthology 2018 Cover.indd 1 20/12/2018 12:13
I belong hereCarers U
K creative writing anthology: volum
e three
Volume three
I belong hereAn anthology of poems and stories
Proudly supported by:
Cover photography by Jonathan Corbett.
The Carers UK creative writing competition underlines the power of sharing the challenges, joys and complex emotions that come with caring for a loved one.
This anthology features poems and stories from the 2016 creative writing competition.
However caring affects you and your family, we’re here.carersuk.org
“Every piece of writing contained in this anthology is a testament to belonging – a reminder of what it is to be human, and what each one of us has to offer the other.”
– Cheryl Moskowitz, competition judge
Proudly supported by:
CUK Poetry Anthology Cover 2016.indd 1 28/11/2016 16:12
Family, friendsand carers
An anthology of poems and stories
Carers UK creative writing competition 2014
This anthology of poems and stories from the Carers UK creative writing competition 2014 will immerse you in the world of caring, and all its many challenges.
The poems and stories tell us about the joys that can be experienced, the learning that comes with caring, and the way it changes us. It also shows the resilience and courage that can be required.
Published for Carers UK’s 50th Anniversary.
www.carersuk50.org
Cover design by Daphne Sanderson, a textile designer who has been caring for 38 years.
“We are invited to view the world of caring from a variety of real and imagined perspectives and consider afresh our definitions and expectations of love, relationships and responsibility. We are made to laugh and cry, and to think differently and deeply.”
– Cheryl Moskowitz, competition judge
Family, friends and carers: an anthology of poem
s and storiesCarers U
K creative writing com
petition 2014
Give the gift of caringCarers UK anthologies of
poems and stories by carers
All five volumes now available
The complete set of five Carers UK Creative Writing anthologies make the perfect gift – these books are available for £5 each or as a set of all 5 books for just £17.
Buy the complete set at carersuk.org/anthology-complete
