INSIDE:
Spring/Summer 2021
Our latest news for supporters and friends of North Devon Hospice
news
Taking care of your wishes: Dr Wright talks about Advance Care Planning
3
6 Making every day count: Sarah shares her story
The elephant in the room:
12
Having conversations about death with children
“I’m making every day count for me and my family”
Hello dear supporters, I wanted to start by saying thank you to everyone for all of your support during the last year and beyond. North Devon really is the embodiment of community spirit and we have all definitely felt that here at the hospice. For the last 37 years, the hospice has been there for so many people in the community and although Covid-19 has had an impact on all our lives it hasn’t changed the fact that we are still here to care for and support you and your family. In fact, in response to the pandemic we have continued to explore new ways to support the community and we will continue to do so, adapting how we offer our services in response to need.
2
As much as we all long for that day when we can do more things together, we also recognise the lessons learned from the current situation and that there are some new ways of working that we hope to keep, such as remote consultations, online support groups and counselling through video/phone calls. We would also like to continue making remembrance events such as Light Up A Life available virtually, because we know that has been so important to so many of you. On behalf of everyone at the hospice, thank you all for your support. Jo Dedes, Director of Care
nefit from our If you could be someone who support or know your GP for a k could, please as Devon Hospice. referral to North support anyone We are here to pacted by a who has been im illness. g itin life lim
Taking care of your wishes ‘Different events in life may lead us to reflect on who we are as individuals, what we value and what care we would wish for if our health deteriorates. An Advance Care Plan is the record of these wishes for family, loved ones and the health care professionals involved in our care. We have been working to design a booklet that helps people to think about what is important to them, helping empower them to have these important conversations and guide on how to record these decisions. Should that person lose the ability to communicate or have it impaired, everyone will know what their wishes are and can work to make them possible. From Power of Attorney to pet care we want people to have peace of mind, knowing that their individual values and choices will be at the centre of their future care. PREPARIN
Advance Care Planning is one of the most important topics in nationwide end-of-life care. Dr Wright from Bideford Medical Centre explains more.
To that end we have created a booklet titled ‘My Wishes’, and hope to be sharing it with you all very soon.’
G FOR YO
UR FUTUR
E CARE
My Wishes
How do you wish to be cared for? What is importan t to you? Who should you tell?
Dr Wright, along with other local doctors and health professionals is creating a resource booklet about ‘Advance Care Planning.’ Here she tells us why this is so important.
3
Community, Community, In so many of your communities, local Support Groups have continued to show incredible and creative support during such a unique time. These groups not only do amazing work but are part of the community spirit we all love. Riverside Support Group’s Jenny Rutter & Janet Goodall with Everything Westward’s Maddie presented a cheque for £4,227.15. This incredible total was raised by sewing and selling face masks. Huge thanks to Jenny & Janet who have crafted each lovely mask and to Everything Westward who kindly sell the masks in their shop.
RIVERSID E SUPPOR T GRO UP
4
and more
CRO YDE SU P P OR T G R OU P
community WOOL A C OM B E & M OR T E H OE HOSP ICE F R IE N D S
Thanks to Woolacombe and Mortehoe Hospice Friends group for putting on a fantastic light display over Christmas. They raised £175.28 and are hoping to do more displays this year.
Croyde Support Group raised over £3,000 for North Devon Hospice at Christmas by making and selling beautiful Christmas wreaths and Christmas face masks. The support group have been incredibly creative and raised Christmas cheer at the same time too.
Local Support Groups make a huge difference to the care we can provide. If you are able to create your own Support Group, with full support from us, please contact Jess or Jadeen below. Jess Burford-Redgrove jessburfordredgrove@ northdevonhospice.org.uk or Jadeen Lowe jadeenlowe@northdevonhospice.org.uk 01271 344248
Save the planet and help your hospice North Devon Hospice are delighted to be a beneficiary of a tree-planting initiative which will help individuals and businesses off-set their carbon footprint and encourage woodland regrowth in the area, while raising funds to support our vital care. BIR THDAY F UN D R A ISE RS O N FACEBO O K TURN IN TO R IPPL E E F FECT O F LO CAL CARE
In the last few months there have been a number of people on Facebook who decided to host a ‘birthday fundraiser’ as a way of celebrating their special day. So far this year, the January babies all the way through to the March babies raised anything from £100 to over £1,000 through hosting a Facebook birthday fundraiser. Thanks to everyone who took part and turned their birthdays into a positive ripple effect of local care and support.
By making a donation towards the ‘Trees For Good Causes’ scheme set up by local firm Birch Meadow Landscaping, a tree will be planted in your name right here in North Devon. The surplus after costs will be donated to North Devon Hospice, in order to continue caring for local people affected by an incurable illness. You can plant a tree for a donation of just £4 for individuals and £5 for businesses. This is a way to help people today and tomorrow. For more information and to make your donation towards the scheme visit northdevonhospice.org.uk or birchmeadow.co.uk/trees-for-good-causes 5
“I’m making every day count for me and my family” “It’s a brain stem tumour and it is on the part of your brain that controls your consciousness and breathing so it’s inoperable. If they touch it they can switch me off completely. Obviously they are going to try and do everything possible to keep me going for as long as they can and keep me as well as they can.”
Sarah, a loving mum, shares her story with us. “At the end of the day I can’t sit and dwell on the fact that I am going to die. You need to take each day as it comes. You can’t sit and dwell on it else you’re wasting the time you’ve got left.”
6
“Karen’s been my nurse and every time I’ve needed something they’ve jumped right on it and dealt with it. Within 12 hours or so, not even 24 hours sometimes, they just appear with a bit of kit or whatever I need. I needed crutches and someone was here the same day. They’ve been brilliant really.” Heartbreakingly, Sarah is going to leave behind her daughter Grace. “She’s an amazing little kiddie, I’m probably a bit biased, but she is. She’s loving, and
caring and thoughtful, and she’s forward thinking for her age, she’s just brilliant. I’m so proud of her. I’ve written her hundreds of letters and so Grace has got letters for her 18th birthday and her wedding day and all that. I’m hoping when she goes through it on her first day of school, that I can be there to open that letter with her but if I’m not she’s got that letter. It was a hard process to do but I had to do it because I’m Grace’s mummy and that’s what mummies do. That is probably the toughest bit about all of this because I’m not going to see her grow up properly and that’s the bit that gets me.” “It’s just about doing the little things like the other weekend we went to Arlington court and there’s a place up there with some ducks. We just went for a little walk around the woods and I took mum’s mobility scooter and we just had a little
ride around the woods. Grace likes riding on the scooter.Yeah, it’s just about making the most of the time we’ve got really.” “No one wants to die do they but everyone is going to at some point. But to be told you’re going to die and it’s going to be fairly soon is quite upsetting…but what can you do? You’ve just got to live each day as it comes haven’t you because you don’t know if you’re going to get another.
lp us to £25 could he ional ot em e id ov pr whose ild ch a support to a ng ci parent is fa ess. illn ng iti lim life
Sarah decided to do an online ‘birthday fundraiser’ on Facebook for the hospice and has been surprised by the amount she has raised to support other people who are in a similar situation to her and her family. “I just did it on a whim really. It just popped up on Facebook because it was my birthday and I thought ‘well they’ve been helpful to me and I might raise 100 quid or something’ and then it just went mad.” At the time of writing this Newsletter, Sarah has raised over £2,000 for the hospice, which is simply incredible!
7
‘I won £1,000’ “It’s only a few pounds a month so to win £1,000, well I couldn’t believe it. It was absolutely the tonic that I needed. I’m going to tell my neighbours so hopefully they’ll join too.” Angela from Northam.
Sarah from the Lottery said “I’m the lucky one who gets to make a lovely phone call each week to let someone know they’ve won £1,000. Angela’s reaction to her news was really special and heartfelt. We are always looking for new members so if you or a family member would like to join the lottery it takes just a few minutes to sign up online.” Can’t wait to find out if you’re the lucky winner? We post the winner on our website every week and on our Facebook and Instagram pages, so if you don’t already, please follow us! 8
m Angela fro on Northam w
£1,000
Calling all local photographers! Can you help? We need photos of local scenery, beauty spots and animals to turn into our 2022 calendar! If you’re a budding photographer or even a professional one, and you’d be happy to share some of your photos for us to use in our calendar, we’d love to hear from you. There’s only space for 13 photos so it’s going to be hard choosing!
55
For your chance to win, sign up at www.playnorthdevon.org.uk or call 01271 347217
17
44
ade Our teams m lls to ca t or pp 12,887 su ved lo r ei th patients and ar. ye st la es on
Please email your high resolution photos and contact details to Alison from our Retail team: retailadmin@northdevonhospice.org.uk
The lockdown hero who inspired people across the globe After camping in his garden for a whole year, Max Woosey raised over £600,000 for the hospice. On his 365th night people from across the world joined in, for Max’s Big Camp Out… In early 2020, Max Woosey’s family had just been touched by the work of North Devon Hospice, who helped care for their neighbour and close friend, Rick. When coronavirus hit, Max knew that lockdown would severely affect the hospice’s vital fundraising, so, the 10-year-old Braunton boy scout decided to act. “Rick was such an adventurous guy,” said Max. “Before he died, he gave me his tent, and told me to go and have an adventure
with it, so I thought a sponsored camp out would be the perfect thing.” Max camped in his garden from the first night of lockdown, vowing not to sleep inside until it was all over. As he racked up the nights under canvas, his extraordinary resolve was attracting worldwide media attention. His determination to make a positive difference in such troubling times inspired an unprecedented wave of support and donations to his fundraising page soared. To mark one year of sleeping under canvas for the hospice, the world was invited to ‘Max’s Big Camp Out’. People from across the globe joined in by pitching a tent in their own garden or sleeping in a homemade den indoors, all inspired by Max’s incredible efforts.
Max’s mum, Rachael Woosey, said: “As a family, we helped care for our friend Rick in his final weeks and we were blown away by the support we got from North Devon Hospice. We now know, thanks to Max’s amazing efforts, that many more local people will be able to receive this same care and support when they really need it. We are so proud of him.” We’re so proud of Max too. Our very own lockdown hero.
9
With a little help from our friends…
Liz raised an impressive £65 after taking on Dry January. She said “Both of my parents were cared for wonderfully by the hospice and we are incredibly grateful that they were there for our parents when they needed them so much.
As well as their incredible lockdown quizzes raising over £1,000 last year, Ewemove North Devon ran an initiative where sellers could donate £100 to their chosen charity, benefiting North Devon Hospice twice.
Last year, Ryan Mahajan, aged just 11 came up with the incredible idea of designing and selling rainbow rugby shirts, balls and masks. Ryan has now raised an incredible £2,500 for North Devon Hospice and Over and Above. To get yours visit: www.aramisrugby.co.uk
Jackson-Stops North Devon teamed up with their Exeter branch to walk ‘coast to coast’ from North Devon to South Devon, covering around 100 miles. Husband and Wife team Ria and James took on the rather hilly Lynton leg raising an incredible £600.
Over the last couple of years the wonderful team at Pure Dental Centre have run a dental scrap recycling scheme turning unwanted waste into precious donations. This year they donated an incredible £1,000 to support our patients and their families.
If you would like to support us we would love to hear from you! Florence and Alice West raised £45 by selling their homemade jewellery in their village. They upcycled beaded bracelets and other jewels, and their dad even stripped electrical wire to help with their efforts.
The Titans Netball Club took on a January Running Lockdown Challenge in loving memory of their coach, Jo Elliott. Running 998 miles between them and donating 50p per mile, they raised a whopping £500 to support our vital care!
All our services are provided completely free of charge, but in order to do this, we need to raise over £4.6 million every year, from scratch. This is where you, our local community of North Devon, come in. There are many ways in which you can help us raise the funds needed to provide our care locally. You could do a sponsored activity, a family quiz…even a skydive or wing walk for those of you brave enough to accept the challenge. Get in touch today to discuss how we may be able to help you with your fundraising:
fundraising@northdevonhospice.org.uk or call 01271 344248.
Katie Madgwick took on an advent running challenge - running 250km over 25 days in December, she raised over £1,100, which is just amazing and will mean so much to the patients and families we have the privilege of caring for.
The Holsworthy Cadets Group collectively swam, ran, walked and cycled the total distance of 150 miles across North Devon during February. Their efforts raised over £600 for our Outreach Centre in Holsworthy, The Longhouse!
£20 could fund one of our specialis t nurses to give an hour of vital care to a patient at home.
The elephant in the room; A letter from Christa, a hospice counsellor, about talking to children about death and dying and why it’s so important to be clear. “In a recent newspaper article, the reporter wrote of a person who had died that he ‘had been found passed away’. In these Covid times, why is there still a reticence within some of us to use words like died and death and, seemingly the hardest of all, dead? Yet the petal-less flowers in a vase on our table can be called dead, as can our phone and car batteries, a mouse in a trap or a fly on a window sill. Is it because dead describes a physical state, that doesn’t carry the gravitas needed to recognise and respect the mystery that is a person? Dead feels too final, too sharp or even too blunt. Is it something to do with timescales? Is it easier to say ‘she died three years ago’ or ‘she’s been dead for several years’ than to say ‘she died yesterday?’ 12
Euphemisms are an old tradition to deal with difficult subjects without mentioning them by name, so consequently, there are over 300 euphemisms for the word ‘death’. These begin to take on the absurd if, as in the opening sentence, they include the words found…‘pushing up daisies,’ ‘having kicked the bucket,’ ‘in a better place’ or even ‘having popped his clogs!’
talking about death
We delivered 1,502 bereavement support sessions last ye ar.
impossible, and very quickly the children see through our attempts anyway. When asking a 5 year old what he wanted to write on a card to his grandfather who had died, he replied: ‘I don’t want to write anything. Grampy has died, he’s not even going to read the message.’ As always, we can learn so much from them. It’s about being real and perhaps the pandemic is helping us with that. We have an opportunity to stop, acknowledge and face the fragility of life and death, for ourselves and for those whom we love.
Of course it’s not only the word death that has euphemisms, cancer is still referred to by many people as ‘the big C’ and medics can baffle us with words like malignancy and metastases.
‘will this happen to me when I have a sore tummy?’ Confusion occurs too when children are bereaved: ‘I’m sorry for your loss’ begs the question ‘Will someone find her?’
Euphemisms are also confusing for children. Telling a child that grandma has ‘fallen asleep’ can cause bedtime anxiety for everyone, from children not wanting to shut their eyes to the constant checking, throughout the night, that parents are still breathing.
Similarly, ‘Grandad is a star in the sky now’ leads to anxiety on cloudy or rainy nights; ‘Where is he? I can’t see him anymore.’
Finally some words from a hospice patient: ‘Here, at the hospice, I can say I’m going to die. I don’t have to pretend that it’s not going to happen. And do you know, that is such a relief.’
When we talk to children in a realistic and honest way, acknowledging we can’t answer all their questions, we bring a simple clarity. As parents and grandparents we want to do something to make it better or to make them less sad, but of course that is
To find a list of different resources and books that might be of interest to you and your family, including children please visit www.northdevonhospice.org.uk and search ‘your care’ and then ‘resources and information for you and your family.’”
Likewise, referring to bowel cancer as a ‘sore tummy’ whilst experiencing a parent’s hair loss and sickness quickly translates into
13
Take one day at a time. Take some time to invest in you, to pay attention to the present moment, and exercise some self-care. Get absorbed in creating something, take a moment to pause and reflect, or listen to inspiring words to support your day.
Visit One Day at a Time to access a wide range of resources and support for you, your friends and your family. www.northdevonhospice.org.uk
Let’s talk Business! We’re delighted to launch our brand new Better Together Business Partnership Initiative, developing mutually beneficial partnerships with businesses who share our key values and support our mission to provide outstanding care and support to the community of North Devon. We are able to tailor our partnerships to help meet the objectives of your business and together, as a network, we can ensure that the future of the hospice and our care and services are protected. It doesn’t matter the size of your business or the level of commitment you can give. There are a number of ways you can get involved as a Better Together business partner which will benefit your business and make a huge difference to local families.
Build connections Raise awareness of your business Show your commitment to supporting local families facing a life limiting illness Social media exposure Exclusive networking events Impact updates However you choose to partner with us, you will be making a real difference to the local families we are caring for right now and into the future. To find out how your business could benefit from partnering with North Devon Hospice and pledge your support, contact your dedicated Business Relationship Manager, Claire, today. Clairepaine@northdevonhospice.org.uk 07909 116026
Better Together
Making a difference to the lives of local families
floating bye Along with your family and friends, you are warmly invited to join us for another very special online gathering where we will be standing together, virtually, to remember those whom we love. On Sunday 25th July at 6.00pm you will be able to join the virtual gathering on Facebook Live (facebook.com/northdevonhospice/live) or YouTube Live (youtube.com/northdevonhospice) wherever you and your loved ones are in the world. To find out more, please visit our website www.northdevonhospice.org.uk
North Devon Hospice, Deer Park, Barnstaple, EX32 0HU Tel: 01271 344248 info@northdevonhospice.org.uk
Registered charity number 286554