when caring just feels right · eating a healthy balanced diet is vital for maintaining good...

NEWS • CAMPAIGNS • SUPPORT • EXPERIENCESNEWS • CAMPAIGNS • SUPPORT • EXPERIENCESNEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

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Carers UK members’ magazine

carersuk.org

Issue 44 | Feb 17

Help & adviceStruggling at work p12

A carer’s guideSharing the load p10

Plus...

EATING WELL Nutricia is proud to be working with Carers UK to help you make a positive difference to the life of the person you care for through good nutrition.

SPEAKING TO YOUR GPWhen you’re concerned about the nutri onal intake of the person you care for

Eating a healthy balanced diet is vitalfor maintaining good health.

Carers often worry about the nutritional intake of the person they care for. If you have concerns it is important to seek help from their GP.

Use this booklet to help prepare for your discussion regarding the health and nutritional intake of the person you care for with their GP.

The following booklets are also available:

EATING WELL AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE

EATING WELL AND CANCER

EATING WELL WITH DEMENTIA

THE IMPORTANCE OF EATING WELL FOR CARERS

carersuk.org/nutrition or by calling the Nutricia helpline on 0845 250 1011.

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

2 carersuk.org

Welcome

JOIN US! To become a member of Carers UKT 020 7378 4997E [email protected]

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

reach and support carers.

Our mission is to make life better for carers:

We give expert advice, information and support

In this edition we consider what it is

from shared understanding, from

Carers UK is here to provide, so I was delighted that ‘belonging’ emerged

the number one feeling members associate with this magazine.

experience of caring. ‘It can be tough, but I wouldn’t

sentiment we often hear

in her prize-winning poem, I Belong Here

times when we’d rather be anywhere else! And times when, like it or not, we

ourselves. This was true for

A Carer’s Guideshe shared the load when her own responsibilities became unmanageable.

In this issue...

Creative Writing Competition

Winning poems

This is caring

Julie’s story

214-9 14

Where we’re heading

Our vision for 2021

campaign to free carers from the constraints of hospital visiting hours.

setting out our campaigning

our vision for the impact

make it happen.

“on the road” and onto the online forum, so I’m looking forward to discussing it with

ahead.

join me in congratulating

the CBE in the New Year

to her dedication and achievements, as well as

of the Carers Movement.

3

When Gaia Holmes’ dad David asked her to make the 500-mile trip from Halifax to the remote Orkney Islands to care for him, she was

devastated to discover just how ill he was. But despite the challenges of the rocking gales, her dad’s privacy and refusal of conventional

medical treatment, Gaia would not have been anywhere else.

The experience inspired her to write the poem, I Belong Here, which won 3rd prize in Carers UK’s Creative Writing Competition.

I belong here

Help & support

4 carersuk.org

My dad was diagnosed with cancer in August 2015. But my mum, two brothers and I didn’t know how severe it was. He wouldn’t tell us and neither would his doctors.

ask for help unless he was desperate. So when he phoned to ask me to come over to the island I knew he

still, I was in absolute panic! I thought, ‘I can’t go! I don’t know how I am going to do this’. It was the not knowing how to look after someone

are the practical issues?

the thought of what was in store.

caravan behind Elwick Mill, an old water mill he was in the process of renovating into an artists’ retreat.The caravan was cold and

a boat when the wind

place’ but it was paradise

Connect with other carers: carersuk.org/forum

to the island. But I got used to it. I was able to see the

saw and understood the reasons he didn’t want to leave the place.

since I had last seen him.

on liquid morphine and was in quite a confused state.

in the middle of the night to

he’d just been dreaming

obsessed the clocks were going backwards.

was far from ideal. But it was where he wanted to be.

medicine and believed in alternative remedies, that

Several times he refused to

So I did feel frustrated. Yes, there was anger too sometimes. But it was more anger at the cancer, anger at the situation.

bed-wash. It took over two hours because I had to keep re-boiling the kettle and it

“The caravan was cold and draughty and rocked like a

boat when the wind howled and wailed. One of my brothers

described Shapinsay as a ‘godforsaken place’ but it was

paradise to my dad.”

@carersuk 5/carersuk

brick against the control dial. But because it was so

the brick kept slipping and

had to take breaks, pull the

again. I never imagined

was awkward and intimate.

comfortable, to relax as much as he could so I lit some candles, put on some of his favourite music and sprinkled a few drops of lavender oil in the washing water. ‘You could write

dad said. And I did, which became the poem Hygge

I suffer from depression and thought all this would push me over the edge. But

things I did. I think we are

more resilient than we realise.

traumatic situation there’s an inner strength that kicks in. So I didn’t think about how terrible the situation was,

to do. The doctors did come

wouldn’t ask them to change

thought he could do it himself

it got to the point where he

with it and in the end he

Again I thought, ‘I can’t!’ But somehow I did manage it.

even on the most wicked

closer to the edge of things.

I Belong Heredidn’t start out as a poem. It started as a stream of consciousness and became a poem later. I wanted to

strange situation to go into

poem there is that feeling of dread, not wanting to be there and thinking, ‘Can I cope with this?’

dad appreciated what I was doing.

“Up there you feel closer to the edge

of things. It’s all deliciously precarious

– a frightening

conducive to writing.”

“When we are plunged into a traumatic situation there’s an inner strength that kicks in. So I didn’t think about how terrible the situation was, I just completely focused on my dad and did what I had to do.”

Help & support

6 carersuk.org


“Looking after my father was one of the most frightening,

ever done. But it was also one of the richest, most beautiful things I have ever done and it has changed me.”

“Ultimately, I belonged there

at that time with my dad and

wouldn’t have been anywhere else.”

and wouldn’t have been

2015. In the end, he had to go to hospital. It was like a

believe it was happening. It was raining, the wind was

dad being carried from his caravan to the ambulance

favourite Afghan hat! It was

poignant and sad and I

out there swearing at the

being carried off like a king.

it takes time to process these things. After a loved one dies there are all the practicalities of sorting out their affairs, which in a

process from kicking in.

to sell the Mill as we

complete the restoration.

I can’t seem to stop. I think,

oranges instead!’ But then it ends up being about him

poems which relate to the whole experience of looking

I’ve been writing these poems it has plunged me back into the grief and it has

times, writing them has been cathartic and given me a sense of closure.

was one of the most

I have ever done. But it was also one of the richest, most beautiful things I have ever done and it has changed me.


I belong hereI belong here,

little star,

walking to the village shop

waving at the locals,

I belong here

beach combing for hope,scrumping kelp and driftwood to burn

singing love, love, love.

Hyggehygge (n): A Danish word which, roughly translated, means, the art of building sanctuary and community, of inviting closeness and paying attention to what makes us feel open-hearted and alive. To create well-being, connection and warmth. A feeling of belonging to the moment and to each other.

and crackle and glow,

Tonight the sea will be too wanton

3rdPLACE

Help & support

I belong herewith the cracked windows

the wild and the raw,

stacked between the jars of pills

I belong here in December

to powder at midnight,

I belong here

seethingand blisteredwith stars.

– Gaia Holmes

No one will come and no one will goand in the morning there will be no fresh bread or milkon the shelves of the village shop.

Tonight we will keep the cats in.

as rain pelts the windows like little pearls

our bond thickeningas love and thin motets chase the coldfrom the corners of the room,and I will almost forget

– Gaia Holmes

8 carersuk.org

‘I belong here’ is the third volume of our

which showcases the best entries from

competition. It includes Gaia’s two entries, printed in full on the previous

The new term

website.carersuk.org/creativewriting

of poems and stories from the Carers UK creative writing competition. Full price £5 each


Kathy Watson

The new term

to the gawping fascination of a childas our Mum drags him backwards up the aisle,

the twin grooves spoil the pile.No-one offers to help.

pulse and fuse with the train’s mantra

Cerebral Palsy, Cerebral Palsy...

Both seated again,

the new school term,and without warning, slides

then off again,

in the bleak, Cheshire landscape

A woman, kind and anxious,offers sweets,

covered in snot, a big saliva grin.

he tries his new voice on the woman,hard Salford vowelsnow lengthened and softened

‘They’re not mints are they?’

– Kathy Watson

1stPLACE

I belong hereCare

UK

i

Volume three

I belong hereAn anthology of poems and stories

Proudly supported by:

Creative Writing Anthology – Volume 3

The Carers UK creative writing competition underlines the power of sharing the

complex emotions that come with caring for a loved one.


Help and support

A Carer’s Guide to: sharing the load

mother’s affairs was a nightmare. She was

for her to be in charge of running things.

took so long to sort out.

Helen Page shares her experience of

In the end we did manage to get into

the arrangements we’d made, which could

It was tough on all of us and sometimes there was no reprieve; caring was all consuming.

end he couldn’t walk, he was incontinent and would call for help two or three times in

“It was tough on all of us and sometimes there was no reprieve;

caring was all consuming.”

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


Helen’s top tips for sharing the load...

Spell it out

shouting the loudest to get support from

not beating around the bush!

Know your limitsAccepting that I’m not a perfect, limitless source of care has been hard but it has

what’s right for one person is wrong for another; we have to work out what we

help others if we’re not coping ourselves.

Learn to trustSometimes we are unwilling rather than unable to share the load. Letting go, even

is worse, both for ourselves and the person we’re caring for. It helped when

not as ‘helping’ with care because I was incapable of caring, but allowing me to care better. It can be good for the people

activities and have different experiences.

Don’t suffer in silence

let’s be honest, sometimes coping isn’t enough to sustain us. If we don’t ask for

to me several times that he just wanted

couldn’t cope with his care needs 24/7, even

an awful feeling.

responsibilities for his affairs and grieving

and processing what’s happened. lessen the load.

Forum: carersuk.org/forum 11

Help and support

Ask the expert

muddled along for a while, but things are now getting worse, and I’m struggling. I’m worried I

How do I juggle all of my roles when things are getting worse?

Jen from the Adviceline says...

It sounds like you’ve got a lot going on, and it’s no surprise that you’re struggling to juggle all these roles.

full time with these extra responsibilities,

important to consider the implications and

It’s important to consider the impact leaving

pension entitlement.

Carer’s Allowance and Income Support.

able to claim help for these.

would be in either case.Note: In some parts of the country Universal Credit has replaced certain bene ts and ta credits.

For more info visit

NI contribution credits, which can help to

For more info visit carersuk.org/pension

Your rights in work

Q

A

Q&A

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


which could include: home working, part-time working, term-time working, working

or job sharing.

contractual rights which could help, such as carers leave. It is therefore worth checking

For more info visit carersuk.org/work

Getting support for you and your Dad

You could get a carer’s assessment from

include things like help with housework or

If support is offered then the council might

not all councils charge for carers’ support. For more info visit carersuk.org/assessmentsYour dad could get a needs assessment from his council, which would look at his

have to meet these particular needs.

the council must provide support. This could include things like a care worker, replacement care or equipment and

For more info visit carersuk.org/needs-assessment

cqc.org.uk which.co.uk/

elderly-care/care-services-directoryNote: The above information on getting support for you and your Dad is correct for England. If you live in Wales, Scotland or Northern Ireland visit carersuk.org/practicalsupport

I hope this helps. Remember you can talk this through by contacting the Carers UK Adviceline on 0808 808 7777 (Mon-Fri, 10am – 4pm) or email us at [email protected].

Advice from the Carers UK Forum

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

“I care for a family member with motor neurone disease. I am really struggling with feelings of guilt and just general rubbishness as I feel there is no point in me being here and I don’t think I am good at it. My family keep telling me they are proud of me which makes me feel worse. Anyone here feel the same?”

feel? I had counselling which taught me to feel proud of what I could do, not

Their phrase is “You deserve a medal!”.

Forum: carersuk.org/forum 13

Our Vision for 2021

Carers UK Chief Executive Heléna Herklots outlines our vision for 2021 and our priorities for shaping a society which respects, values and supports carers.

Thinkingahead...

I wonder how you felt when you woke up on New Year’s Day and looked 2017 in the eye. Tired, perhaps, from seeing

the night-time caring that has scant regard for special occasions! But I wonder

challenges facing us right now, as individuals and as members of our wider communities.I’m not sure I can

greater challenges on

resolve that things must change. That together, we can make change happen.

social, humanitarian. But it’s at times like this when having vision is so important. It can take courage and imagination

14 carersuk.org

recognises the importance of caring, we can unite behind this vision and create the world we want to see.

Shaping that world means being there for carers with information and advice, right from the start.

we’ve managed to double the number of people we reach with online information and support.

this growth to reach

smartphone or not, knows

information and support.And shaping this world means preventing carers being forced to give up work to care. Giving up work should be a choice,

will be harnessing these to transform support and understanding of carers in workplaces throughout the

experiences, frustrations, passions and commitment of our members and supporters. You’re the

bring this change about.

sure others don’t face the

experienced, I know we’ll be

“To create the change we need to see, we will be speaking forcefully over the coming months.”

“By building a movement of

carers and everyone who recognises

the importance of caring, we can unite

behind this vision and create the world

we want to see.”

challenges and be part of making change happen.It’s with something of this spirit that Carers UK has developed a clear vision for the world we want to see in

carers are supported not

challenges of looking after someone, but to build a life of our own too. A life which includes caring but is not

Shaping that world means taking action now.

stops taking us for granted.

achieved a lot together over

not enough.To create the change we need to see, we will be

the coming months. The

address the growing crisis in health and social care and provide the support that carers need.

Find out more and get involved: carersuk.org/intheplan

Our priorities1. Battling for greater

understanding and support for carers

2. Being there for carers with information and support from the start

3. Building a network of carer positive

To deliver on these, we will also focus on:4. Growing income

streams so we can increase our impact,

5. Being a great place to work and volunteerMaking the best

respond to changing behaviours.

Continued on next page >>>


Our Vision for 2021

Priority 1 Greater understandingOur society cannot keep taking carers for granted. We will battle for understanding and better support.

carers is pushed much higher up the political debate.

Through research we’ll build an irrefutable

By 2021, we want a world where we can all look after loved ones without putting our own lives on hold.

How you can help: •

to ensure we can produce hard-hitting research

•

political agenda and into the minds of the general public

• Campaign with us on the issues that affect carers most.

case for better support for carers. And we will continue to campaign for carers’ rights

issues that affect carers most.

read more about this and future campaign priorities, visit carersuk.org/campaigns

“It’s not the caring

16 carersuk.org

Find out more and get involved: carersuk.org/intheplan

Priority 3 Positive employers

How you can help: • Become a Local Awareness volunteer,

•

volunteer host or moderator• Make a donation to help us expand our

information and membership services to reach more carers.

Priority 2 Timely informationThe right information at the right time makes a world of difference for carers. We will be there with expert help and advice, right from the start.

By 2021, we want to be reaching two million people per year with expert information and advice.

and experience can be shared and where answers can be found.

“Without this small amount of respite I believe we would have hit breaking point.”

How you can help: •

reaching out with useful information and helping carers to connect with each other

• carers know about Carers UK services and raise funds to help us reach more carers.

We should be able to combine work with care if it makes practical sense for us to do so.

By 2021, we want a world where no one is forced to give up work to care.

with caring, but a lack of support and understanding can make it impossible to continue with both roles.

“My manager and team were incredibly supportive. The organisation knew that keeping carers in the workforce really mattered.”


It took me a long time to recognise

through the time I spent caring, but I still didn’t recognise that I was carer.

step back from the situation and tell me that

of cancer, I wanted to help other carers, to

I was being useful.

the role of carers is often unrecognised. I became a volunteer for Carers UK to improve

need with endless tasks, appointments or interacting with professionals, it is seeing the

changing, and the fact that sometimes

on their behalf.

communicate and work with carers’

networks, health providers and local authorities to champion the vital role carers

information centre.

good use and changes people’s lives with

are struggling like I was, before I recognised that I was a carer. The role of a carer is to be the backbone that keeps things together. I’m proud that I volunteer for Carers UK, together we can achieve increased carer awareness, improved access to

Volunteering makes me an ambassador for a carer-friendly community

Mike Molete became a Carers UK volunteer after caring for a loved

“The health system is fragmented and the role of carers is often unrecognised.”

“Volunteering for Carers UK puts my skills to good use and changes

people’s lives with the added

Volunteering

Get involved

Carers UK, visit carersuk.org/volunteer or give us a call on 020 7378 4997.

y

18 carersuk.org

Volunteer with us: carersuk.org/volunteer

Volunteer Voice

This group of 21 volunteers are acting as a critical friend to Carers UK’s volunteering programme, providing ideas and feedback on how we can engage effectively with volunteers across the UK to reach, connect and support many more carers.

joined the meeting to listen to volunteers’ views and afterwards most of the volunteers

volunteers with each other and with Carers

During a busy autumn season we held events across the UK to bring carers together to share ideas and spark debate.

opportunities and challenges that lie ahead,

Northern Ireland enabled carers to discuss

to help carers in their communities.

volunteers to 3,000. Together, we can make sure that caring is an issue that penetrates

knows where to turn for help and support.

please visit carersuk.org/volunteer or email [email protected].

support and resources.

different perspectives on our work. During March we will be holding three

Leeds to continue the conversation.

AGM and Members Conference


activities from our supporters!

Be remembered: A gift in your willGifts in wills are so important to

funds towards our support and advice services.

about leaving a gift to Carers UK in

or email [email protected]

“Caring had been such a big part of my life. I wanted to give

something back.”

How you can help

Thank you

From taking part in marathons, and 200-mile

even cutting off dreadlocks, our supporters went to great lengths to raise funds for Carers UK and help make life better for carers.

support, we couldn’t do

Carers UK in 2017, we have

get involved. You could join us for the Gauntlet Games, a hilarious obstacle course race that takes place in various different locations

5k or 10k, taking on giant

swings, water obstacles and real Gladiators!

of tea and a natter?

To get involved in 2017, email [email protected] or call our fundraising team on 020 7378 4952 for more

20 carersuk.org

mum and that at least the formal diagnosis focussed our minds and stopped me blaming her for behaviour

One of my coping mechanisms is to write down what is happening and try to use this process to analyse my own reactions, which I hope can allow me to manage future situations better.

That was the germ of my book, Beloved Old Age.

earlier experience as a carer helped me develop a sense of perspective.

This is caring

I Care: JuliaJulia Jones, 62, has children, grandchildren, a partner and work that she

of mum’s dementia when she became increasingly unstable. It was like living beside a volcano. She was

often horrible to be with. Sometimes she would go

and howl.

Her formal diagnosis came at the memory clinic of her local hospital. There

felt like a long period of

her diagnosis there was no support, I felt that she and I were, in effect, tipped out into the snow to get on with it.

I didn’t want to be mum’s primary carer. I felt as if I’d been standing in the wrong place when the music

book convinced me that

for mum. She presents old age and end-of-life care as an integral part of the

her experience and writing

During the period that I was writing Beloved Old Age, mum was still living in extra care accommodation.

to keep as much of her independence as possible for as long as possible. It took quite a lot of organising and

week with her. But we had a

used to take her horse riding

“The formal diagnosis focussed our minds

and stopped me blaming her.”

Describing the start of her caring role as “standing in

gone on to lead a major campaign and incorporate her own experiences of caring into her work as a writer.

Beloved Old Age, interweaves the caring

The Relay

“I felt as if I’d been standing in the

wrong place when the music stopped.”


still manage it and if

personal support.

Mum has always been stubbornly independent and it was important for her to be “allowed” to go out even if she sometimes got lost or

and I often heard that

guided her back home again. Social services were often involved and it was a great relief when mum and I met a social worker who understood the concept of “positive risk-taking”. I supplemented the basic

the extra-care housing with

and paid companions. It took a bit of organising but Mum was still living a “real” life, despite her dementia.

When my friend Nicci Gerrard described the

catastrophic effect that a stay in hospital had on her fathernothing like that should happen to mum. Families can be excluded from offering care in hospital due to the visiting hours’

that I knew her needs the best. She was developing such essential trust in me; it would be unthinkable to be

at her time of greatest need.

John’s Campaign in 2014.

The primary focus of our campaign is to ask that carers should be welcomed at any time if the person they care for is admitted to hospital. That includes

carer wishes to do so.

Two years later, change is on the way and over 400 hospitals throughout the UK have signed up to implement John’s Campaign with nursing and care homes starting

Campaign conference she shared her hope that together we can create the expectation that if the

presence outside visiting hours would be valuable,

staff to the campaign and ask them to implement

of carers who are raising these questions throughout

change on this issue.

Mum is reaching the later stages of her illness now

into a dementia specialist nursing home near me. This move was traumatic but was unavoidable. Although she now has 24 hour

responsible for her well-

“The primary focus of our campaign

is to ask that carers should

be welcomed at any time if the

person they care for is admitted to

hospital.”

“Mum has always been stubbornly independent and it was important for her to be “allowed” to go out even if she sometimes got lost or upset.”

This is caring

22 carersuk.org

Further Reading

Beloved Old AgeAn unpublished work

The Relay

Beloved Old Age interweaves

caring for her mother in

Available now from Golden Duck publishers, £9.99.

John’s Campaign Behind John’s Campaign lies the belief that carers should not just be allowed but should be welcomed in hospitals and all residential institutions outside visiting hours, and that a collaboration between the patients and all those connected with them is crucial to better health and well-being. Find out more:johnscampaign.org.uk


“I can see that my role is not

only to help mum feel safe and loved, but to remind her

who she is and reassure her that she has

mattered.”

Margery Allingham explained care in old age as a time when the baton of identity is being handed on. It’s a fascinating concept

feel safe and loved, but to remind her who she is and reassure her that she has mattered.

I am with her in the morning and the evening every day. It’s a relief to me to be working in partnership with experienced professionals and I am grateful for their understanding that what I have to offer mum is personal and special. I know that I am welcome in the

until the end of her life.

At the end of the John’s campaign conference, Tommy Dunne, a man living with dementia addressed the audiencethat he was not afraid of

going into hospital or into

for as long as she wished.

Part of this fear comes from the stories of unkindness or neglect in the institutions where family carers may not be welcome

not just be individual

working together to ensure there are no more closed areas we can do something

to contend with.


I belong hereAn anthology of poems and stories by carers

Volume 3AVAILABLE

NOW

Buy your copy of 2016’s winning and highly-commended poems and short stories for £5. Or purchase it as part of a set with 2014 and 2015’s anthologies too for just £11.

Available at carersuk.org/anthology

Members can use the discount code MEMCREATIVE to get 30% off.

– Cheryl Moskowitz, Carers UK creative writing competition judge

“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.”

I belong here

Volume three

I belong hereAn anthology of poems and stories

Proudly supported by:

Family, friendsand carers

An anthology of poems and stories

Carers UK creative writing competition 2014

Family, friends

andcarers:an

anthologyofpo

di

Volume two

No one should

have to care alone

An anthology of poems and storiesldhave

tocare alone

Carers UK creative w

riting anthology: volume tw

o

when caring just feels right · eating a healthy balanced diet is vital for maintaining good...

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