Compassionate Neighbours during lockdown
Just as the country went in to a national lockdown, John’s wife Ruth died in March 2020. He found during the following weeks and months that friends slowly started to distance themselves from him and he was left with almost nobody he could freely talk to about Ruth.
It was Compassionate Neighbour Co-ordinator at the Hospice, Alison Kilby, who first suggested to John that he be matched with someone who could support him through this difficult time.
Compassionate Neighbours are trained volunteers who offer friendship, a listening ear and regular emotional and social support to people in their local community; People who are lonely or socially isolated due to the effects of their own or a loved one’s long term or life limiting illness.
John was matched with Robin who phoned John weekly to chat about anything and everything.
John quickly learned that Robin was a good listener and understood his situation. He could talk to Robin freely about Ruth and this reduced the stress he felt. They also shared a love of football which led to a regular swapping of notes on their teams.
What started off as a weekly phone call, due to COVID restrictions, soon progressed to regular Zoom sessions and these gave John something to look forward to. In John’s words: ‘a reason to get up, get washed and get a proper shirt on’.
He also added: “I would whole heartedly recommend the service even for a short time to get over the initial months of bereavement.”
If you, or somebody you know, could benefit from the support of a Compassionate Neighbour, please visit https://www.pah.org.uk/our-care/compassionatecommunities/
James and Charlotte’s story
Charlotte and I met at university, but it wasn’t until after graduating that we started to go out together. We both joined a charity project and taught English in township schools in South Africa. It was a memorable experience, in tough circumstances, and it helped to bring us together.
Charlotte was a food writer and editor who worked with some of the country’s best known chefs. In the 90s she lived in London, and I came down from a job in Newcastle to join her. We were married in 2000, in Shropshire, and the year after our first son, Joseph, was born. We moved to Ireland the following year and spent almost a decade in Dublin. Two more sons, Patrick and Charlie, arrived while we lived there. In 2011 we moved to Thames Ditton, just a few miles from Princess Alice Hospice, and the boys settled into local schools.
Two years before that move back across the Irish Sea, Charlotte had been diagnosed with breast cancer, and she was treated in Dublin. She continued to write and work, editing books and writing about food and travel, while based at home and bringing up the boys. She was always determined that her cancer would never stop her doing the things she loved in life, although she didn’t ever like being called “brave” or “battling”. Charlotte was a beautiful person, as her obituary in The Times after she died in October 2018 described, and it was her spirit, her dignity, grace and loyalty which made her so loved by her many friends and family.
In 2015 we found that the cancer had returned. After more forms of gruelling and difficult treatment, Charlotte went into a hospital in London that October before being moved to Princess Alice Hospice, much nearer to our home. We had driven past the place often on the way for muddy walks with the children or to Garsons Farm, but we had never been inside. While it was comforting to have her nearer, it was overwhelming to know that she was in a hospice, and what that meant.
We talked often during her time at the Hospice about how wonderful the staff were. They helped make the most difficult, painful time more bearable. Without exception – and we met dozens of nurses, doctors and other staff in that short, intense period – they were caring, warm and kind, as well as utterly professional. We always agreed that care is to be expected, but compassion goes well beyond that. The Hospice staff we met were compassionate to Charlotte, and to the rest of us. That really mattered, and it has stayed with me.
On one occasion a member of staff spent a long time tracking down a TV for Charlotte’s room so that we could watch a family film together. We felt guilty as we didn’t really feel in the mood, but it demonstrated how the team really wanted to help us as a family, and especially Charlotte as a patient. Another time a wheelchair was quickly found so Charlotte and I could go round the garden on a beautiful autumnal day. I slept in the room for a few nights, and started to recognise the friendly nursing staff as they came on shift. Friends and family came from overseas and around the UK to visit Charlotte, and they were welcomed with cups of tea, warm smiles, tissues when required, vases for the many bunches of flowers, and calm information.
Charlotte died on October 28th 2018. I have been back many times, for events or to visit staff, and we are pleased to be able to help and support the brilliant work in a small way. Our boys, all teenagers now, do the Santa Run with me each December. We donate items regularly to the Princess Alice Hospice shops.
The fact that Charlotte and I managed to have some very special time together in the last few days of her life was due, in part, to the compassionate support of the Hospice team. I will always be grateful for that.
If you’d like to help ensure we are here to help families like Alex’s, please support our In Touch appeal with a donation today.
David and Alex
David was 70 when he died of cancer on 29 November 2016. He and his wife were living in Fetcham, where David spent the last 16 weeks of his life with the care and support of Princess Alice Hospice. Here, his wife Alex tells their story.
David and I met at university in 1965, when I began my degree in biology. I was a little taken aback to discover I needed to know such advanced maths, so a friend put me in touch with David. I still can’t understand the intricacies of advanced maths but we had a very happy marriage. Our golden wedding anniversary would have been in 2019, but we celebrated 50 years together in 2015.
David didn’t know anything was wrong until he started struggling to swallow food. By the time he was diagnosed, he was already Stage 4. He went through chemotherapy and a major operation in August 2015 before being referred to Princess Alice Hospice.
A nice young man came to see us and explained what the Hospice could do. We chose that, as far as we possibly could, we’d manage David at home, which is what we did. As David approached the end of his life, two Princess Alice nurses came every day. It came to the stage that David actually looked forward to them coming. They were so reassuring and very nice to be with.
When I first met the Princess Alice Hospice nurses, I knew things would be okay. They were totally competent, so friendly and there was a lot of continuity. We tended to get the same two nurses throughout, which was lovely.
The Hospice cared for David in a whole range of ways. They helped with practical and medical matters. David wasn’t bedbound at first, but became increasingly weak so they helped him shower and get dressed. I could only help a little – I’m only 4’9” so the practical things were quite difficult. When David had to be moved downstairs they were amazing. They arranged for him to have one of these proper beds downstairs, which made things so much easier.
Having the support of the Hospice, meant David could stay in the place he felt most safe and comfortable. It was comforting for him that everything around him was familiar. I was there all the time, his daughter and grandchildren could come and go and all his friends could come and visit whenever they wanted. We had a constant stream of friends and family coming to see us and that would not have been possible otherwise. People could just come and go, they brought food and all sorts of things and right up until the day he died his grandchildren could come and see him. He just felt comfortable in his own environment. There was a very nice atmosphere. I had friends saying ‘you can’t come for supper, but we’re coming and bringing it with us’. They knew they could come any time and would always be welcome, which was lovely.
But not everything was easy and the Hospice supported me through some of the most difficult times. They showed me how to make David more comfortable, what to give him, not to worry – this might happen, that might happen – but you know not to worry. And at the end of the day I knew they were only ever a phone call away – no matter the hour. David was never in any pain at night, but when he was a bit distressed I’d call and a couple of nurses would visit that night, which was wonderful. They made us both feel extremely confident that if we needed help, they’d be there.
They also supported us emotionally. We’re both terribly English and tend not to show emotion much. David only broke down a couple of times and I made sure I never broke down in front of him or my daughter. The nurses were great. They provided reassurance when I needed it.
The Hospice was there for us every step of the way, enabling David to have a peaceful death. The morning he died they came as usual and said, ‘he’s not going to last much longer now’ and a couple of hours later he stopped breathing. There was no distress once the nurses settled him, which made it easier for him but also for me and my daughter. The other great thing is they were able to say ‘it’s not going to be long now’, so I could call my daughter and she was with us when he died.
Supporting the family afterwards
The Hospice continued to support me and my daughter after David’s death. I was very touched that the Hospice called me on several occasions after David died, saying ‘Are you alright? Is there anything we can do for you?’
I found out about the little services that the Chaplain Steve Nolan ran and my daughter and I went to one just a week after my husband died. It was very raw, but great to come – a soothing experience. Months later they were still in touch. It was really lovely.
Supporting Princess Alice Hospice
I can’t bear to think about how David’s last weeks would have been without the kindness of those nurses and the support Princess Alice Hospice gave us, it meant so much.
I want to help the Hospice and have become a member of the Hospice’s research committee. It’s nice. I’m giving something back to the Hospice and it makes me feel useful. It’s such a worthy cause.
If you’d like to help ensure we are here to help families like Alex’s, please support our Care Round the Clock Appeal with a donation today.
Anne and Sarah
Anne was just 66 when she died from lung cancer at Princess Alice Hospice in April 2019. She was a devoted mum, grandmother and sister. Anne was initially cared for at home by Princess Alice Hospice nurses and spent the last weeks of her life in the Hospice. Here, her daughter Sarah tells their story.
“Mum had many jobs throughout her life – she left school at 15 to start a hairdressing apprenticeship and continued hairdressing throughout her life, with a short break as an air hostess for a few years in her twenties. She later established a thriving dog-sitting business. She absolutely loved animals. She was a very hard-working, active and positive person, who was always on the go.
Once the hospital referred mum to the Princess Alice Hospice, the care she received was almost instant. She wanted to stay at home for as long as possible and, with the help of the Hospice, she was able to do so.
I stayed with mum a couple of nights every week and I particularly remember one of the nurses, Lucy. She came once a week at first, then every few days, phoning on the others to see how we all were. I really appreciated how she always had time for us. She must have been so busy and emotionally drained, but every time she came into the house I never felt that she was in a rush. She was present with us, there to listen. She was there for as long as Mum needed her and with the phone calls, little touches like that, you just knew someone was looking out for you. I could be honest and say ‘It’s not OK. Can you come out again?’ That constant care really helped.
As mum’s illness progressed and her pain increased, the Princess Alice Hospice 24 hour helpline became crucial in giving mum the support she needed, when it was hard to cope. I remember coming in so many times and she’d be in tears – she had a really high pain threshold so I knew she felt so helpless. That’s when I’d phone Princess Alice Hospice and they’d say to me ‘try this tablet, do this’. They taught me about the medication so I knew inside out what everything was. They educated me so much, which I found helpful because initially I found it overwhelming.
The Princess Alice Hospice nurses reviewed mum’s medication every few days and checked she was using the oxygen and equipment properly. They were so sensitive, gentle, straightforward, honest and kind. Importantly, they gave mum some control. They would guide you and say, ‘this is what we can offer’ but never ‘you should do this’.
We’d explain that she was struggling to make it upstairs to bed or get to the toilet and the next day a hospital bed for downstairs and a commode were delivered. They’d just help with everything. She was losing weight and I remember trying to order special drinks and different things to keep her comfortable online and they said ‘No, we’ll do that for you.’
Lucy was always respectful and always checked that Mum was happy for the family to be there for difficult conversations. It’s a very simple thing, but very important in order to keep someone’s dignity.
Mum’s pain continued to gradually increase and soon she was having trouble sleeping. The Princess Alice Hospice team were there for us again. They’d come out at night and administer pain relief and comfort her so she could her get some sleep.
I knew I could call on the Hospice, even at night. They always came very quickly and if they couldn’t, rather than just saying ‘Sorry it will be a while’, they’d give you a time and a few things to try in the meantime so psychologically you’d feel you were doing something. That gave a bit more peace of mind. I’d often phone them in a real state and they’d calm me down and say ‘right this is what we need to do’. Then they would come and give medication and stay until mum could fall asleep, so we could relax. They’d give you that peace of mind.
As Mum’s condition deteriorated, the nurses suggested Mum stay at the Hospice to help with pain management. My Grandmother had been cared for there in 2014, so it was a familiar place and one we trusted to help mum at this overwhelming time. We knew it was the right time. As soon as we arrived I saw mum relax.
The Hospice made every effort to make mum comfortable and content. I remember the Hospice’s therapy dog visiting mum. Small things like this made such a difference. I will also never forget how much it meant to Mum when the Hospice gave her a bath, which she’d been unable to have due to a stomach drain. She was like a new woman when she came out. They’d washed her hair – it was so nice to see.
Towards the end mum only really wanted ice cream and she could have that any time of day. The nurses and doctors were constantly thinking of things, rather than just leaving her lying in bed. They’d say, ‘Would you like a hand massage today?’ It was all about comfort, peace of mind and breaking up such a long day.
We could spend all day at the Hospice and the nurses even made up a bed for me to sleep over. The nurses felt like family. They’d bring Mum her breakfast and they’d say to me ‘Right, what are you having for breakfast?’ They didn’t have to do that. They genuinely cared about Mum and about my welfare too. You could push a button in the middle of the night because mum’s breathing had changed and they’d never make you feel like you were being a nuisance. One nurse would bring me hot chocolate every night and have one with me. I could talk to them because they understood and would never judge. The emotional support was amazing.
The Hospice is such a special place. It sounds strange, but a Hospice is one of the loveliest places to be. You no longer feel alone. Walking in, my shoulders would drop, I’d feel relaxed, and I’d feel safe. We knew she was in good hands.
Supporting the whole family
Not only did the Hospice support mum and me throughout, they were always there for our whole family.
My Aunt remembers how they helped her mum (my grandmother) when she went into the Hospice: “When the lady said ‘I think it’s time she went into the hospice’ she was a shoulder for me to cry on. Who else do you go to for that? Where else would you get that reassurance, and know they’re there for you as well? And when she died it didn’t end. I don’t really do counselling or anything like that, but it was nice to know it was there if we needed it.”
I too found the continued support helpful. The Hospice phoned regularly afterwards just to see how we were. I’m not really a talker, but having that one person phoning you, allowing you to stop and think ‘How am I doing?’ really made a difference. And things like the annual Light up a Life service give you permission to really have a moment and remember.
Supporting Princess Alice Hospice
Sarah says she and the family are committed to helping Princess Alice Hospice in recognition of the incredible care both her mum and Grandmother received.
“Princess Alice Hospice is my charity because it’s touched our hearts. We would have paid unlimited amounts of money for that care and the fact that you’re not charged any money is beyond belief really. We will always support the Hospice because the job they do is amazing and I hope that sharing our experience means it can help someone else.”
If you’d like to help ensure we are here to help families like Sarah’s, please support our Care Round the Clock Appeal with a donation today.
Tom, Emma, Daniel, Matthew and Sam
Tom, 42, died peacefully in his sleep at Princess Alice Hospice in 2019, with his beloved wife Emma at his side. The couple have three young sons, who visited their dad every day he was at the Hospice. Here Emma tells their story.
“Tom and I met soon after leaving university. Our relationship was full of love, friendship, hope, happiness and adventure. We married in 2006 and have Daniel (now 10), Matthew (now 8) and Sam (now 4). Tom was a natural father. He adored our boys, and they adored him. He made us feel so special.
“Tom was diagnosed with cancer in January 2016. I was 37 weeks pregnant with Sam at the time. Living with cancer became our normal. We shared everything and always supported each other. Tom was remarkable throughout, and we chose to live life in every moment.
“Life became truly hard in 2019, with many visits to hospitals. Tom’s health deteriorated and he began to receive palliative care from Princess Alice Hospice. We started with care in the community, but management for Tom’s symptoms was difficult and he moved to a bed at the Hospice in May.
“The staff were phenomenal and made Tom and all our family feel as comfortable as possible. The doctors discussed what they could do to help get Tom’s symptoms under control. We were supported by a family support worker who was always available for both Tom and me.”
“I stayed with Tom at the Hospice, and the boys visited every day. Tom was in a room that looked out onto the beautiful garden, and he enjoyed watching the boys play. The room was only a short distance from the playroom, which the boys loved to explore.
“In early June 2019, we celebrated Daniel’s birthday in the Hospice garden. Tom’s parents, siblings, my parents and our boys were all together for that special occasion. Our nurse, Suzanne, found a comfortable chair for Tom to sit in outside, and it felt so normal to be together enjoying all the laughter and joy a birthday brings.
“That evening, he drifted in and out of sleep, but I was with him to comfort him when he woke. I told him that I loved him and he smiled and nodded, he was so tired. Shortly after I fell asleep that night, one of the nurses woke me up. She’d come in to check on us and told me she had watched for Tom to breathe for a while and he hadn’t. She stayed with me while I held his hand and stroked his face. He looked so beautiful and so peaceful as though he was still asleep with his head turned towards me.
“Princess Alice Hospice has become so much more to the boys and me than just the place where Tom spent his last weeks of life. We have joined the Dovetail bereavement group for families like ours at Princess Alice, which meets once a month. It helps the boys process their feelings through creative craftwork and activities. I meet with other parents, who have also
lost their life partner far too soon. It’s a comfortable and safe space.
“2020 has been an unusual year for everyone. For my little family, it has meant the added challenge of grief and temporary loss of adult companions and the support I had come to rely upon. However, Dovetail has continued to meet via Zoom, which has been a tremendous support to the boys and me.
“Tom will always light up our lives when we think about and remember him. Before he became ill, our little family always spent Christmas mornings together. That time alone together, just us five, was so precious.
“I have loved Tom for twenty years, eighteen and a half years where I could reach out and hold his hand whenever I wanted to, and eighteen months now with space where his hand used to be. This Christmas, we will be thinking of all those who have loved and lost, and who are living their lives without their special person.”
Gary met Carolyn 41 years ago when they worked in the City. Dinner one Saturday was, as Gary says, ‘the beginning of the beginning’ and they married five months later. After their first daughter Carly was born, they moved from Primrose Hill in London to Weybridge.
Before the birth of her second daughter, Julia, Carolyn discovered homeopathy, which led her to qualify over the years as an RS Hom, Homeopathy’s equivalent of a PHD; she built a highly successful practice and established an eminent career around homeopathy, nutrition, Theta healing and kinesiology.
To mark what Gary describes as a ‘wonderful marriage’, they celebrated their 25th wedding anniversary in 2004 by taking 6 friends to Patara in Turkey: at one memorable long lunch, Gary donned a top hat and Carolyn wore a tiara. When the photos were developed a few weeks later, one of Carolyn showed lumps on her neck: a doctor confirmed it was cancer, along with the words, ‘I can save your life, but the procedure will involve removing part of your jaw and your entire palate,’ leaving her unable to speak coherently or eat and drink in public again. With much of her life spent talking with patients and dining with friends, Carolyn decided she would prefer not to live than undergo such radical treatment. Instead, she researched all she could and embraced many alternative therapies. After four years the cancerous cysts had shrunk, all seemed well, but then tumours returned in her neck.
By this time, surgical practices had moved on dramatically and Carolyn’s new surgeon told her he could rebuild her palate using part of her wrist and repairing that with tissue from her stomach. Following a gruelling 18-hour operation, Carolyn faced a long recovery at home; six months later, she discovered a cancerous lump in her breast and underwent a full mastectomy; a hysterectomy and regular grommet replacement operations followed, as well as more facial surgery and reconstructive plastic surgery. By November 2018, following some radiotherapy and what they hoped was a full recovery, Gary and Carolyn were hopeful and holidayed in Dubai; they talked positively about their future, but by February 2019 the tumours had returned.
Gary was advised by medical staff at the Royal Marsden Hospital to engage with Princess Alice Hospice about a care plan for Carolyn at home; he was later introduced to Zulfika, a counsellor, who he found ‘a delight, very easy to talk to and who put me totally at ease.’ Gary found he could talk about the pressures on him without any guilt.
Carolyn’s new grandson, Rory, was born on 22 December 2019 and she spent Christmas with her family, before telling Gary on Boxing Day, ‘I want to die now.’ Carolyn was admitted to Princess Alice in mid-January this year and was met by nurse Sarah, who ‘was delightful, she treated Carolyn like a Goddess and had her eating out of her hand.’ In Carolyn’s own words, ‘this place is amazing, everything is perfect.’ After three weeks Carolyn was able to return home and the family was visited by the ‘absolutely brilliant’ Hospice at Home team; Carolyn told Gary the nurses seemed like friends, ‘they get me.’
Three weeks later it was clear that Carolyn was nearing end of life and she asked to go back to Princess Alice, as she wanted to die there. Carolyn died a week later on 3rd March this year.
Gary now plans to retire early from a successful career, saying ‘I would like to fundraise for the Hospice more than I want to work now.’ The poignant tribute page established by him is raising vital funds; a week of care costs approximately £4,000 for each patient, so Gary’s goal is to raise £16,000. The tribute page contains photographs and wonderful anecdotes about Carolyn, a perfect way of keeping her memory alive forever. In the words of one contributor, ‘she was a towering figure in my life…so much positivity and joy come to mind when I think of her’.
Gary plans to fundraise further and has been inspired to become a volunteer Ambassador for the Hospice. In his own words, ‘the great thing about Princess Alice is that don’t just offer care, they really care.’
Myra, Wellbeing Centre participant
Myra is one of our Wellbeing Centre patients. When the lockdown started, she initially thought we wouldn’t be able to see each other until it finished. But with joy she participates in our Zoom sessions every week. She was really keen to share her experience so far with us.
I really don’t know what I would have done without the Zoom sessions.
The Discussion group is very interesting, but you also have a laugh, we talk about everything going on around us and how we are feeling, it is so good seeing everyone face to face, I get a lot of enjoyment out of it.
The art session is so much fun, we all do something on the subject chosen it doesn’t matter how good or bad you are, drawing, painting, decoupage, knitting, crochet. Anything goes.
The chair exercises are such a help, doing them with other people helps a lot. There are some I can’t do, but it doesn’t matter as adjustments are made for each person as needed. I always feel good and have more energy after each session.
“OH BOY” – the relaxation session gives you techniques you can use at home when feeling down or upset, I have fallen asleep during the session, after I feel light and so relaxed. I use them at night when it is hard to turn my brain off. I always feel happy and so relaxed at the end of each session.
Everyone is so friendly in whatever session you are in.
I look forward to each session every week.
Dina, in the news
Did you see BBC Newsnight’s short film about our work when it aired back in April?
Following an afternoon of socially distanced filming by the production team, the film featured interviews with members of our team and shone a light on how coronavirus had changed the way we were able to deliver care to patients and their families. One of our patients, Dina, talked about her experiences of being coronavirus-positive. After the film aired, Dina continued to stay under our care at the Hospice; after five weeks, you can imagine our joy when we knew she had recovered from the virus and was well enough to return home to her family.
To support us by making a donation click here.
Supporting frail, elderly people to complete Advance Care Plans with volunteers
Providing Advance Care Planning support to our Hospice Outpatient Clinics
Princess Alice Nurse Consultant, Angie Redpath referred an elderly gentleman from her Teddington Outpatient Clinic to our volunteer Advance Care Planning (ACP) service.
“I met the patient and his wife three times in Out Patients Clinic (OPC); initially he had been reluctant to discuss ACP. As I got to know him better I became aware he was anxious about discussing his end of life wishes with his wife and realised he very much wanted to die at home. I was able to discuss the clinical aspects of his care but I felt the ACP volunteer would be able to spend more time with him and his wife exploring some of the other issues.”
Our ACP Volunteer Coordinator proceeded to match the patient with Planning Ahead Volunteer Judy Barnett. Judy called and arranged a convenient time to meet the patient and his wife in their home.
During her first visit Judy took time to get to know the couple, gaining an understanding of their circumstances and family situation. She introduced the couple to the ACP document used by the Hospice, explaining that it was the patient’s document to keep and complete, recording his wishes and preferences for his future care. Judy clarified that she would be there to support them through the process and direct them to any further sources of support and information they may need. She spent over an hour with the couple and agreed to call them the following week to see if they would like her to visit again.
Judy made one further visit during which she saw that the couple had given a lot of thought to the process and started to fill in the ACP document. On this occasion she took the opportunity to talk to them about the online NHS system called Coordinate My Care (CMC)*. CMC is an online record of an individual’s care plan – containing important information about an individual’s health, treatment preferences, next of kin and so on – this information is then shared with all health professionals involved in an individual’s care, including 111, the ambulance paramedics and Emergency Department staff. Judy supported the patient to set up his own record on a system called MyCMC which is the online CMC record that can be created by the patient themselves. They were then able to input their personal details and information from their ACP document into the online record.
The next time Angie met with the patient at the Outpatient clinic, she was able to view the information the patient had created via MyCMC and input further information regarding the patient’s clinical choices.
For Angie, being able to refer patients from her outpatient clinics to the volunteer ACP service, means that she is able to focus her ACP conversations on the clinical decisions. She feels reassured that people are being supported in the community and given the time to understand and reflect on the wider options and choices around their care. It is also really useful to have these recorded and shared via MyCMC.
“The ACP volunteer service provides the patient and carer with an opportunity to explore their thoughts and wishes for the future. With increasing demands on the clinical services, it is reassuring to know patients can spend time with the volunteer to consider their options and feel in control of their future.”
Judy felt that her visits had prompted conversations between the couple that might not otherwise have happened.
“They both said they had found the conversations very helpful – although they had started to think about the patient’s late life preferences and possible arrangements before we met, our meetings had enabled them both to feel more confident and willing to discuss things in more depth with each other, and also to write them down, and complete MyCMC.”
If you would like to know more about out ACP Volunteer service please contact the Volunteer Coordinator, Jo Bolton at firstname.lastname@example.org.
*CMC is currently only available to all London based patients.
Nick Garrett – Hospice care at home
For Nick Garrett and his family, their experience of Princess Alice Hospice care was brief but profound.
His wife Carol’s illness was diagnosed just one year before she died – a year which saw her embark on treatment for ovarian cancer from two hospitals in a bid to extend her life.
Once it became clear that Carol’s condition was not going to improve and she needed symptom control above all, the question arose of where would be the best place for her.
By the end of January 2019 the family knew they had to think about the inevitable.
“She wanted to feel safe, to feel she was being cared for,” said Nick. “Leaving a hospital setting was a worrying prospect for her. The set-up is geared towards managing your needs and functions at any time of day or night.
“Given the choice of Hospice or home – she didn’t want to say. We felt it would be better for her here at home, even though her Dad died here, and the house had been specially extended to create the space for her to do her quilting.
“It seemed the right thing, to bring her home, and I’m very glad we did,” he said.
“She was able to make the most of the time she had; Princess Alice Hospice co-ordinated her care and the service was fantastic.
“The Hospice At Home community nurses were absolutely lovely. The Hospice nurses who came overnight were just great. When you need to call someone out in the middle of the night, even an hour’s wait can seem too long – so it was marvellous to have a nurse staying overnight, even just a few times.
“Also, I was able to be with Carol at home. When the overnight nurses came, it was comforting to know there was someone there to help; my daughter also found it made a difference knowing her Mum – and I – were in such good hands. It enabled all of us to relax a bit.”
Carol was at the heart of her family when she died aged 64 in early March last year.
Keeping close ties with their son, Andrew and daughter Claire bring Nick the bonus of enjoying watching his grandchildren grow up; both his offspring have two young children each – all aged four and under.
Visits to Texas to see Andrew, and with Claire and her family nearby mean Nick is having an active retirement following a successful career in engineering.
A keen Rotary club member – he’s President of the Bookham and Horsley branch – Nick has motivated his fellow Rotarians to raise funds for the Hospice night nurses and brought in a £1,000 donation just before Christmas.
The club is currently organising a fundraising light opera gala evening – A Touch of Glyndebourne – in May.
Nick also has plans to help spread the word about the Princess Alice Hospice charity – by volunteering as a Hospice Ambassador, attending events and giving talks about the outstanding levels of care given freely to those in need.
To support the Hospice’s care Through The Night appeal, visit www.pah.org.uk/nightcare
Alison Jesson – author’s story
While many people have an interest in their ancestors – and some delve deeply into tracing forebears and family trees – it’s something else to create vivid life stories from the records, papers and memories left behind by previous generations.
Alison Jesson has done this twice – telling her father’s story, and that of her maternal grandmother, in two novels which have received enthusiastic reviews.
All the while she has been a cancer patient – now under the care of Princess Alice Hospice At Home.
Diagnosed with breast cancer in 2004, Alison had treatment and reconstructive surgery before the cancer returned in 2013, this time in her spine and pelvis. She’s receiving palliative care at home in Dorking, where she has lived for 28 years with her husband of 30 years, Mark.
Now she gets regular visits from Hospice nurse Karen Smith, whom she describes as “lovely” – and who also takes time to focus on Mark’s welfare as well, which the couple appreciate as they both feel they are treated as individuals.
Alison’s father John Garrett’s time as a WW2 prisoner of war in is told in The Mind’s Garden; her grandmother’s story of life as a missionary midwife in 1900s Peru is told in Holding The Threads.
Alison, 65, was inspired to write her Dad’s story while transcribing his war diaries, which now reside at the Imperial War Museum.
She found that the diaries – and letters between him and his mother, who was living in wartime England – evoked much more that the records and official papers she had been researching for the family history.
The novel follows his life as one of 400 men held in a propaganda camp in Korea which the Japanese set up in order to convince the West they were treating their prisoners well.
The story tells of his life as camp doctor, including his love of poetry, camp schooling in architecture and his guilt at having a better wartime experience than thousands of his fellow PoWs.
Her other novel, Holding The Threads, has been glowingly reviewed by readers.
Her grandmother and grandfather left the UK in 1904 to work in Peru as missionaries; he as a preacher, she as a midwife, in conditions which almost defy description. Alison brings to life the atmosphere, deprivation and danger inherent in an early 20th century rural Andes town, and the young family’s life there and into the middle of the 1950s in the UK.
Its Amazon website description – “a vivid memoir which explores how the richness of our lives depends on the quality of our relationships” is particularly appropriate, given Alison’s deep interest in the connections between people across generations.
Her own story includes an early career as a cardiac nurse at St George’s Hospital, followed by a period training and practising as a counsellor/psychotherapist – for cardiac patients, then staff, until she moved into private practice as a psychotherapist.
Her psychotherapy specialisation was transactional analysis – how we develop and treat ourselves, how we relate and communicate with others and how we can change and grow.
When she wrote her father’s story, she imbued him with her own philosophy: Explore, Experience, Create, Connect – which enabled her to develop his character in a sympathetic way and round out the detail.
She is frequently asked to give talks on family history – both her own, which she’s pleased to have researched so well – and for others to learn how to make their own connections.
“It’s the anecdotes that bring family stories alive,” she said. “I encourage people to start writing their memoirs for others to read; parents and grandparents, brothers and sisters, for their children.”
Pragmatic by nature, Alison is making the most of what she knows is limited time in which to leave a legacy of memories.
She has achieved a number of “bucket list” goals including travelling far and wide, to the Niagara Falls, Vesuvius, Pompei and Alhambra; heard Mozart’s Requiem in Vienna and the Monteverdi Vespers in Versailles.
She’s found herself glass-blowing, silversmithing and water colour painting – which she continues to enjoy.
“Even little things like a family beach barbecue have been immensely enjoyable, making memories,” she said. “I’ve really had a good time!”
One permanent reminder of Alison – which she and her husband have already ensured is in place for all to see – is a memorial picnic table in Norbury Wood – inscribed Explore, Experience, Create, Connect”.
>>>>> Unable to continue marketing her book Holding The Threads, Alison has donated the last 40 copies to the Princess Alice Hospice, where they can be bought for a donation to the Hospice. They are also on sale at the Hospice Christmas gift fair on 26 November, open 4pm.
- From the first page l found ‘Holding the Threads’ a highly engaging and enjoyable book that was difficult to put down. l particularly enjoyed the amazingly vivid, colourful descriptions of life in Peru. l highly recommend this well-written moving memoir
- Just finished reading this book which grabbed me from the first page. I loved the descriptions of Peru and of life for missionaries at the turn of the 20th
- This delightfully easy to read but well researched book is a wonderful true story of a young couple embarking on their married life on a new continent and setting up home in Peru. A good read indeed.
Alison and Stuart were childhood sweethearts who moved to London from a small village in the north east of Scotland in 1982. They intended to stay for two years, but Alison is still here. Being away from all her family made Stuart’s diagnosis all the more difficult. Stuart was diagnosed with malignant melanoma, which started as a small mole on his leg, in 2001. Over the next 18 months the cancer spread and by Christmas 2002, he was unable to walk. The cancer had also spread to other areas in his body, including his brain, changing his personality.
“Stuart became very angry at being unwell and decided not to tell his family in Scotland the full extent of the cancer. They knew he was ill, but were unaware of how ill he really was, which put incredible pressure on me, but I knew it was Stuarts way of coping.
Whilst I could do whatever I could to help in a practical way, I felt I couldn’t help him with his emotions. I was also feeling overwhelmed and worried about our two sons, Iain and Alex who were only nine and 12 at the time. After having to call an ambulance on 27th December just to get him in to bed, Stuart was referred to the Hospice. An appointment with his consultant at St Georges Hospital on January 3rd 2003, told us both that Stuart had already lived for nine months longer than was expected, so we actually left that meeting in quite good spirits knowing that we’d had more time together. Stuart was still very angry though, the Chaplaincy Team at the Hospice visited him regularly and with all the positivity of the staff he came into contact with, they helped him to lose his fear and accept what was happening, he then became peaceful and content. ‘The boys began to spend a lot of time at the Hospice and were always welcomed and chatted to by staff and volunteers. They never felt scared and when Stuart died on 14th January, the boys were supported by the Bereavement Team who helped them enormously.
They wouldn’t talk to me for fear of upsetting me and I knew they were keeping it to themselves, so the support they received was invaluable. In the years that followed, I went back to work, but my youngest son Iain really struggled, thinking his mum wasn’t coming home every day. I called the Hospice to see if they could point me in the right direction in terms of some help for him and before I knew it, the very same bereavement counsellor was on my doorstep. I couldn’t quite believe that after two years, the Hospice would still support us. They never abandoned us. What they did for us was above and beyond what I would have expected. I knew then that I would do something for the Hospice, but I didn’t know what or when.
Then in December 2018, a neighbour of mine was admitted and I came to the Hospice to visit. I felt then that I could come back and offer my help in return for all the help the Hospice gave me and my boys and so I applied to be a volunteer and was accepted. Now I am an Ambassador and Community Fundraiser and get involved in all sorts of volunteering ranging from organising collecting tins for local shops and GP surgeries to speaking to children at local schools about the Hospice and the care it provides. I never know what I am going to be asked to do and I really like that. When I was working in London, I was part of a large team and I am now part of the Hospice team. I enjoy it so much.”
Adam, Pippa, Ethan and Imogen
Pippa died in December 2017, leaving husband Adam, Ethan (now 11) and Imogen (now 9). Here Adam tells their story.
I met Pippa in 2003 in Morocco. By the time the holiday ended, we were chatting away non-stop. It was pretty much love at first sight. We married three years later.
Pippa loved sport and travelling and was a very caring mum. We had a loving family life. Then, in 2014, Pippa was diagnosed with breast cancer. Over the next year, she had chemo, surgery, radiotherapy, the works. Afterwards, we thought she was fine – and she was for a couple of years. Then, just after Christmas 2016, Pippa started to have pains in her legs. Her consultant gave us terrible news. The cancer had spread. She could have as little as a few weeks left, months at best. It was very, very hard.
Within a week, we were introduced to the team at Princess Alice Hospice. Leo looked after me and the children and Sharon helped Pippa and her parents. They made sure we were all coping, supported us and prepared us for Pippa’s death. First, the Hospice focused on making sure Pippa could stay at home for as long as possible. The Hospice at Home nurses helped with her care and the occupational therapists advised on equipment such as walking aids and wheelchairs, because Pippa lost the use of her legs.
Throughout Pippa’s last year, the support evolved. She was given all she needed, from pain relief to relaxing therapies like reflexology and massage at the Hospice’s Wellbeing Centre. The Hospice provided practical, medical, emotional and spiritual support. It was the cornerstone, the glue that stopped us falling apart.
Leo was there for me and the children every step of the way. He helped us to understand what was happening and build a foundation for the future. We had a year before we lost Pippa and, with the encouragement of the Hospice, we made lots of wonderful memories together. Pippa wrote her life story and together, we made memory boxes with mementoes and photographs. And, although it took a lot of strength, she wrote Ethan and Imogen cards for the funeral and their birthdays. So, every year, until they’re 21, the children will have a birthday card from Mummy to open.
Then, one day, as Christmas was approaching, Pippa said to me “I think it’s time.” I knew she was ready to move into the Hospice, but it hit me very hard. When we got to the Hospice and saw how lovely the rooms are, how welcoming everyone is and the care they provide, a weight was lifted from my shoulders. The responsibility and worry of being a carer disappeared and I could be 100% husband and father again.
Nothing was too much work for the Hospice. They’d allow the children to stay overnight or visit before school, and arranged a family movie night with their favourite food – scampi and chips! The positivity of the place makes you feel more positive, helping you to move through the next stages. Ethan and Imi weren’t afraid to visit – they’d run in with Kibibi our dog to give Pippa a cuddle. When it became clear that Pippa wouldn’t survive until Christmas, the Hospice helped us have an early celebration. We had a tree in Pippa’s room, the children made decorations with Leo and we shared a Christmas dinner together. Right up until the end, Pippa was ordering presents and festive jumpers for us. On the 18th December, Pippa passed away holding my hands. The children chose to be there too, and Leo and Sharon were there to support us. The nurses helped the children pick a bouquet to rest on Pippa’s body. She looked beautiful and peaceful – a positive memory that will stay with them for the rest of their lives.
Since then, we’ve all been regularly to the Dovetail bereavement groups, where we can share our thoughts and feelings with people who have been through the same experience. The children do a lot of creative activities that help them to process their emotions. Any time things are difficult, I know the Hospice is there for us. Without them, we’d have been lost. There would have been more worry, more stress, more confusion. They helped us navigate a horrendous situation and make it as good as it could be.
Help us support families like Adam’s this Christmas by donating to our Facebook fundraiser here.
Sara, Julie and Henry’s story
Sara met her partner, Julie, in 1998, and they went on to have a son, Henry, together. When Henry was only four, Julie was diagnosed with breast cancer and, five years later, in November 2016, Julie died. Since then, Henry has been seeing the Hospice’s Children’s Social Worker Leo, who has taught him some of the tools for dealing with grief and helping him make sense of what’s happened. Sara and Henry hope that sharing their story will help other families with young children at such a life-changing time.
It wasn’t an easy decision but at the time of Julie’s diagnosis, Sara and Julie felt that Henry was too young to understand about cancer, so they chose not to tell him about Julie’s diagnosis. “Everyone was telling us what we should do,” says Sara, “but we didn’t feel it was right to impose all that worry on a young child. We never lied to him or hid anything; we just never talked to him about cancer or the possibility that her illness could be terminal. It was difficult enough for us to get our heads around everything, so dumping all that fear on a child just didn’t seem fair.
“All Julie wanted was to enjoy his childhood and for Henry to enjoy it too – so we were busy getting on with life and making memories. She and Henry wrote lots of stories together, made drawings and they played all the time – she was incredibly funny and creative. About a year after Julie died, and once Henry had a better understanding of all the treatment and health challenges Julie had faced, I asked him whether he would have rather known or not known, and he said ‘not known.’ So that helped me feel we’d done the right thing.”
When the cancer returned in 2013, it was ten days before Sara and Julie were due to get married. Sara says, “Julie had surgery on the Thursday, came out on Friday – still with a drain which we disguised with a scarf – and we dashed down to the wedding venue at Goodwood near Chichester to meet the family for dinner before getting married the following morning. All the family were there and Julie was incredible!”
Both Sara and Henry talk about how strong Julie was. “Life’s never been easy,” says Sara. “Four years of IVF and several miscarriages – Henry was our little miracle. Then with the cancer, Julie went through ten surgical procedures, six different chemo treatments, multiple hospitalisations and two rounds of radiotherapy. She would have tried anything to stay alive.”
It was a battle to get the right treatment and in the right hospital, particularly towards the end of Julie’s life. Sara says: “It felt like a constant fight for treatment; once she had pneumonia which we couldn’t get treated. Then she broke some ribs coughing and the doctors mistook the lesions on her x-ray for evidence that the cancer had spread, which it hadn’t. In her final few months when she was struggling with so many health challenges, we had to beg for her to be admitted to the Royal Marsden Hospital. At the same time I was just trying to hold our life together with a young child when I could barely put one foot in front of the other.”
In the summer of 2016, Julie came home. They had visits from the District Nurse, GP and one of the Hospice’s community doctors; Sara and Julie decided to manage her care at home themselves. The family went on one last holiday to Goodwood and the Isle of Wight, something both Henry and Julie really wanted to do. “Julie still didn’t want Henry to know what was going on,” says Sara, “but he knew. You could see how sad he was, knowing she wasn’t well.”
Right up until the day before she died, Julie continued to work. She wrote communications for Henry’s school, including the headmaster’s blog. “Her willpower was insane,” says Sara. “On that last morning, I got her dressed and on the sofa, and all she wanted was her laptop. She was drifting in and out of consciousness that day but she didn’t stop working. The school’s business manager phoned us on Monday, amazed to find Julie had posted one last blog!”
The one thing Julie wouldn’t talk about was the end of her life. “She just shut down if any of the professionals mentioned it, so it was difficult to make specific arrangements, and that’s left us facing problems now,” says Sara. As part of that, when the Hospice made a follow-up call to her, she asked about help for Henry. “I was having to explain everything to Henry retrospectively and I asked him if he would like to talk to someone. For me, it was having another adult supporting what I was saying. It’s tough being the only adult and it’s good to have someone who understands what we’ve been through. In the absence of my partner, the Hospice has been the partner I’ve needed to shore up that emotional stability and comfort to my very vulnerable child.”
Henry meets with Social Worker Leo, normally at the Hospice, although they have also met at Julie’s memorial bench along the river. Henry says: “I do enjoy seeing Leo and I look forward to it. It’s hard to put into words… Leo’s nice.”
Sara comes in with Henry, which gives her the chance to speak to Leo and to be a part of what they do and talk about. She’s also spoken to Leo separately about a couple of issues that impact on Henry during this time of such enormous change. She describes what Henry and Leo do together: “They feed the carp in the pond, create things, play Jenga and talk about what’s going on and how Henry is feeling. Leo gives him ideas on how to handle things. Julie is always going to be missing from his life, there’s no getting away from that, but he can learn to recognise the sad feelings and take appropriate action to prevent them becoming destabilising.”
Sara and Henry have chosen to fundraise for the Hospice as a way to give something back. They got Henry’s whole school involved in the Bushy Park Santa Run last Christmas and Henry wants to run it again this year. “Henry loved it,” says Sara, “but I might just stand and watch with the dog this year!”
“Ours has been a different experience of coming to the Hospice,” says Sara, “but it’s an incredible resource that we’re very lucky to have. I understand why Julie avoided engaging with the services here because the word ‘hospice’ has such negative connotations. I supported her in that decision, but since losing Julie, Henry and I have found Princess Alice Hospice to be an invaluable resource where we’ve found the support to help us put into context what’s happened and to know we’re not the only ones in this awful situation.”
The McAvoy family
When dad of five John McAvoy’s final days approached, his dearest wish was to die at home, surrounded by those who loved him the most.
Thanks to the Princess Alice Hospice At Home service, his final wish was able to be granted without compromising his care or burdening his family.
His son, Fraser, explained: “It was one of the few wishes he had – to end his days in the family home where he had lived, happily married, for almost 40 years – and the home where each of his five children were born and raised.”
Initially the family were unsure about whether John would be able to remain at home with them. When he developed bed sores from being confined to his old bed, his loved ones imagined they had no choice but to see him moved out of his familiar surroundings.
There was help at hand. Fraser said: “It was such a relief when the Hospice sourced Dad a proper hospital bed and arranged for it to be set up in his bedroom. It meant so much to him – and us – knowing that he could stay and pass away with dignity, in a familiar setting.
“The Hospice nurses who visited Dad would always ask him how he was feeling and what he wanted. It gave him the opportunity to speak more openly, something that he might not have done with us, perhaps for fear of seeing the worry in his family’s eyes or upsetting us at knowing the pain and discomfort he was in.
“Instead, the Hospice nurses brought him comfort when it mattered most and meant we could focus on those special, precious last moments with him.”
The family was deeply grateful that the Hospice At Home service is available at any time: “Someone was always at hand, on the end of the phone for us when we had complication with Dad’s morphine drip in the early hours of the morning.
“It brought us a great peace of mind knowing they were available and ready to help, 24 hours a day,” said Fraser.
Not only did the nurses bring the McAvoys peace of mind, the service gave them the space they needed to come to terms with saying goodbye to John.
Fraser recalled: “They patiently guided us as we navigated unfamiliar territory, and their expertise meant that we were able to make informed decisions and put in place the necessary arrangements, such as Dad’s Do Not Resuscitate order, so that when those final moments came, they were calm, they were peaceful.
“We will always be grateful for the work of the Princess Alice Hospice and their Hospice at Home service as it meant we could spend as much time as possible with our Dad in the family home we had all grown up in.
It meant we could be there with him, right up until the very moment he passed, holding his hand. The work of the Hospice is critical and we hope that they can continue to offer other families the support and peace of mind at the toughest of times.”
Fraser and his brother Liam have signed up for no fewer than four marathons in 2019 – raising funds for Princess Alice Hospice by running in London, Edinburgh, Manchester and Belgrade.
Becca – night nurse
“I see the relief on people’s faces when we arrive”
Becca, a former intensive care nurse, is now a night nurse for Princess Alice Hospice. Her job is intense, demanding and very rewarding.
The night nurses provide much more than medical care. Night-time can be frightening when someone is nearing the end of life. Nurses like Becca can make it a little easier, by settling the patient and just being there when needed. That might mean giving them medication, changing a dressing or reassuring them about a symptom that’s worrying them. Or sometimes just sitting with them, so they know they’re not alone. In many cases, they’re granting a patient’s dearest wish – to spend their final hours in the comforting, familiar surroundings of their own home.
“Not long ago, I was called to sit with Jay. During the latter part of the day, he had deteriorated rapidly, and his wife Naina was worn out. She’d injured her back caring for her husband and was extremely concerned about his welfare. The couple’s teenage sons were at home and needing support too.
When I arrived, Jay’s symptoms were quite severe, so I gave him pain relief to settle him and then monitored his medication during the night to ensure he was as comfortable as possible. After talking to the family, I sat in the room next door while they stayed by his bedside. I popped my head around the door regularly, to check everything was ok. At one point, his wife got into bed beside her husband for the last time. Reassured by my presence, she managed to grab an hour’s much-needed sleep.
Although being with patients and their families at such a critical time is a privilege, it can sometimes take its toll emotionally. But making a difference to local people, like Jay and Naina, makes it all worthwhile.”
Following our support to Jay, his family sent this lovely message:
“From the moment Becca stepped into our home I felt a huge sense of relief…I felt I was not alone. Rebecca was kind, gentle, reassuring and very professional. She had an amazing sense of calmness about her and an ability to comfort without being intrusive. For that night, I was able to be Jay’s wife and not his carer. I was able to fall asleep next to him, with my arms wrapped around him, in the knowledge that he was being cared for and was in safe hands with Rebecca watching over him. For that time, I will be forever grateful to her” – Naina
Mark, Kei, Melissa and Kacy
It was love at first sight when Kei and I met. In my eyes, she was perfect. And Melissa and Kacy couldn’t have had a kinder mum. The girls were just 10 and 11 when she sadly died last September from bowel cancer, which she had battled for 6 years. Kei was only 39. When the Royal Marsden told us there was nothing more they could do for Kei, there was no question in our minds that she’d go to Princess Alice Hospice. We knew how kind and caring they were, because her grandfather had been there. At first, the Princess Alice team visited us at home. Then we went to a family fun day to slowly introduce the girls to the Hospice. They felt happy there straight away and still talk about how much they loved the farmyard animals!
I lost my dad when I was 18 and I still remember the cold, clinical smell of the hospital. But Princess Alice Hospice is different. It’s the most amazing place with such a positive vibe. Nobody complains or looks miserable, which is really nice because they’re looking after your loved ones. We still go back there now. It gives me comfort just to sit in the coffee shop on a sunny day. There are beautiful gardens, where we took Kei when she was well enough, and in the Sanctuary you can light a candle, have some quiet time and write down what’s on your mind. Kei’s name is in the Book of Remembrance there. When Kei became really ill, we all got one-to-one counselling. It helped us to come to terms with what was happening. We all now attend the monthly Dovetail bereavement groups. For me, it’s a chance to get things off my chest and be with people who understand. The children learn about their emotions through creative activities.
Recently Melissa and Kacy made a volcano. It helped them to understand that feelings bubble away and sometimes it’s ok to vent them. The Hospice team managed Kei’s pain and supported us all emotionally. Nothing was too much trouble. Even at the end, they helped Kei to find pleasure in little things. They’d organise the baths she loved whenever she wanted and when the hand massage lady came, she’d herd us all out of the room, saying “This is Kei’s time”! I could tell the staff genuinely cared about Kei. There was one lovely night nurse, Lorna, who she really clicked with – they were always laughing together.
The Hospice helped me through the hardest times – like knowing how to tell the girls that Mum wouldn’t be coming home. Kei’s passing was as peaceful as it could be. I was holding her hand and she looked into my eyes as she took her last breath. I’ll never forget how compassionate the nurses were. When the girls came in to say goodbye, there were no machines or tubes, no drama – just Kei looking dignified and calm, with flowers in her hands. It’s not easy managing on my own, but I think Kei would be proud of me. Christmas is always a hard time. Kei was so organised, from the Santa sacks to her famous roast potatoes! This year, I’ll take every day as it comes. We’re looking forward to the Hospice’s Light up a Life service – Melissa and Kacy jumped at the chance to turn on the Christmas lights. It was lovely last year, like being welcomed into a family.
Andy’s wife Louise was cared for by the Hospice during her illness, and had 3 stays on our ward, as well as receiving care and support while she was at home, at our Day Hospice and also from our Night Nurses. She died at the Hospice, at the age of 56.
“You felt like the Hospice was taking care of you, and it wasn’t just the patient they were taking care of, it was the family as well”. One of Andy’s sons had counselling sessions at the Hospice, which really helped.
It was while Louise was attending our Day Hospice that she first heard about our Man Shed. At that point, it hadn’t yet opened, but she liked the sound of it and thought it would be good for Andy and their sons, perhaps helping them to form a connection with the Hospice. She died the morning of the Shed’s opening, but true to her wishes, Andy started attending a few weeks after she died.
“Coming here a couple of times a week, it makes things easier for me, and it feels like I’m giving back to the Hospice through the Man Shed, because I can come, and I can help other people. I’ve been through leukaemia myself, and also lost my wife – we’d been married 32 years. So I know various people here have gone through the same thing, and I know how they feel. Some of them are quite a bit older than me but it’s not about the age. You’ve lost a partner, and you need something to carry on.”
Two of of Andy’s sons still join him at the Man Shed, including Chris (pictured). Andy and son Alexander are also helping our Community Engagement team with various events during the summer.
Andy has found the Man Shed to be so beneficial, he has recently moved from being a ‘shedder’ to becoming a session leader, helping the Hospice to open up the Man Shed to more people.
So he still enjoys not just the contact with other people who have had similar experiences, but also the connection with the Hospice itself – “even now, I still see nurses, and physios and people from the Day Hospice, and even the staff that brought the meals around on the ward still come up and say hello”.
Revd Dr Steve Nolan – Princess Alice Hospice Chaplain
“There’s more to a person than where they worship.”
For Steve Nolan, being a hospice chaplain is very different from being a church minister. “Working as a chaplain is much more about being part of a team of professionals and, of course, it involves spending a lot of time caring for people at the end of their life. People sometimes think chaplains are only interested in a person’s religion, but there’s a lot more to a person than where they worship.”
“We’re there for people of all faiths or no faith.”
As a minister, Steve tended to meet people who were associated with his church and community life. Now he works with people of all sorts of beliefs, some of whom are religious and others who are not. “Together with our team of Chaplaincy Volunteers, we are here for anyone who needs us,” he explains.
“We work on the ward, in the Day Hospice and in the community. I don’t go in with an agenda – I don’t wear a ‘dog collar’. Sometimes people want to talk about things that are important to them, or about dying, or about their beliefs. Other times our conversations may have nothing to do with religion or spirituality, because the person just wants someone to talk to or read to them or perhaps do a crossword with them. We aim to build a relationship with people.”
There are 15 people in the Chaplaincy Team. They include two Buddhists and a Hindu and the Chaplaincy also has a good relationship with the local mosque. “We have a good relationship with the churches, as well as with the local mosque and synagogues.”
Bereavement Cafés and LGBT+
Recently, Steve’s work has involved developing a network of Bereavement Cafés. He works with local groups who want to support bereaved people and trains and supports their volunteers to run the Café once a month. “There are five Cafés up and running and several more in the pipeline. I’d like to see Cafés in different parts of the Hospice area, so that if a person needs some support, it won’t be far away.”
Together with Den Pearce, one of the Buddhist members of the Team, Steve has helped set up a bereavement group for people who identify as LGBT+. “We know that bereavement for people who are LGBT+ can be a difficult experience with its own particular problems.”
“Alun was worried about how things would be towards the end.”
Steve first met Alun after he was admitted to the Hospice. Over the next few weeks they enjoyed several discussions together. In their conversations, Alun seemed to be reviewing his life, talking about his father who had been a minister, his work as director of a local company and his family.
But as they got to know each other better, Alun shared his worries with Steve. “Alun was concerned about how things would be as he came to end of his life and what would come afterwards. I told him that his pain would be managed and that in my experience people usually die peacefully. As for the afterlife, I told him that God loves us and accepts us and that, whatever happens, we will be safe.”
Steve continued to visit Alun and his family. Then, over one weekend, he received a text from Alun’s son saying: “Dad passed away very peacefully at lunchtime today”. He also added “I really believe that you made a huge difference in helping dad accept what was to come and allowing him to slip away so calmly.”
“In the most imperfect situation, Princess Alice Hospice was perfect.”
When Tariq met Bryannie at university, he knew he’d met the woman he was going spend the rest of his life with. But just a few years later, and after successful careers and two beautiful daughters, their happiness was shattered. Still in her early thirties, Bryannie was diagnosed with cancer.
In May 2013 she was admitted to Princess Alice Hospice – but she was determined to beat the illness. “Bryannie didn’t want to talk about end of life. The staff at Princess Alice quickly worked this out and they didn’t persist. Nobody forced anything – they got it just right.”
“I felt privileged to share that moment with her.”
Tariq and Bryannie’s girls were only eight and five. Being able to see their Mum every day and still go to school as normal was very important, so the fact that the Hospice was local really helped. On her last day, Bryannie was sitting up in bed, brushing her girls’ hair as she always did. She was happy and was still talking of going home at some point.
But at 5am the next morning, Tariq received a phone call, telling him to come to the Hospice straight away. “She passed away in my arms. And it didn’t feel traumatic. She looked at peace. She looked beautiful.” Later Tariq went home and brought the girls to the Hospice. “We lay with her for two hours. The nurses suggested we pick some flowers from the garden. No one disturbed us – they knew we just needed to be with her.”
“The support group became an anchor point for us.”
Back at home, Tariq called to see if there was anything he needed to do and was told “No. You do what you need to do – we’re here.” And they continued to be there. In the first year Tariq and the girls all had individual counselling. Tariq found going to his younger daughter’s sessions helped him understand how she was feeling. “I remember they filled jars with different coloured sand to represent different emotions.”
Later, the Hospice suggested a support group for children which parents could also come along to. “It was clever because if I’d have thought it was for the parents, I may not have come,” remembers Tariq. “It was challenging sometimes but we were among people who really understood.”
“I genuinely don’t know what I’d have done without them.”
As well as coping with the loss of Bryannie, Tariq also lost his business. But Gill, from the hospice’s Patient and Family Support team, was there to support the family. “The first Christmas, Gill turned up on Christmas Eve with toys for the kids from the hospice. I cried my eyes out with her.”
Today the family are doing well. Tariq is enjoying being a full time father and the girls are thriving at school. “We’re in a good, healthy calm place and a simpler life. A lot of that was helped by the support and kindness of PAH.”
Sharon Fleming – Lead Social Worker
“I never know what I’ll be dealing with and that’s what I love.”
As a social worker, Sharon Fleming has always been used to multi-tasking. Her role brings her into contact with a wide variety of patients, families and other professionals and no two situations are ever the same. “People often ask what social workers do in palliative care,” she says, “The answer is that every patient and every family is different so we need to be able to deal with whatever comes up.”
“We help people talk openly about dying.”
One area of her work that is unique to working in palliative care is preparing people for the future. “People often find it hard to talk about their death with family or friends – especially with their children. I remember a lady who had two children of 7 and 9. We have a social worker funded by Children in Need and they did a lot of work with the children to prepare them for their Mum’s death. When it happened, they were able to be with her and they weren’t scared at all.”
“We do a lot of problem solving.”
But our social workers help in very practical ways too. Life-limiting illnesses can result in lots of extra expenses and financial difficulties. “We have two welfare benefit advisors on the team,” says Sharon, “and they help people get the benefits and grants they’re entitled to. We can also help with other issues such as making a Will, getting reductions on council tax and moving people to more suitable housing.”
The team often act as intermediaries in complex family situations, where for example, there may be ex partners and children from different relationships. “One gentleman was in the process of splitting up from his wife when he got his diagnosis. They have two young children and we are supporting the whole family to help them cope with this really painful situation.”
“We’re there to support each other too.”
The work that Sharon and her team do can be emotionally intense. “We know when we start a relationship with a patient and their family, there will be an ending. We have good support and professional supervision to help us build resilience.”
Sharon has been at the Hospice for seven years now. “I can’t imagine working anywhere else now. I love the variety of people I meet and the compassion and commitment of the people I work with.”
“I used to feel so angry. Now I’ve learnt how to tell people how I’m feeling.”
The loss of a loved one is painful at any age. But young people can find it particularly difficult. They may never have experienced grief before – and they may not know anyone else of their age who has been through it.
12 year old Amelia lost her Granny in June 2016. A few months later she moved to a new school and so as well as dealing with her grief, she was also having to settle in and make friends. Just a few months later in December there was more bad news. Her beloved Grandad, Joe, was diagnosed with cancer.
The two had always been close, and until he fell ill Grandad had driven her to school every day. Now she worried about losing him too. But often her fear and grief came out as anger because she couldn’t control her feelings or explain them to anyone.
Then Grandad’s Princess Alice Hospice nurse, Tracy, started coming round. When Amelia’s Mum found out that the Hospice could support them as well as Joe, she confided her worries about her daughter. Tracy offered to arrange a meeting for Amelia with one of the Hospice’s specially trained social workers.
“He’s given me techniques to deal with my anger.”
Amelia had never had support sessions before and was expecting a couch and someone in a suit with a clipboard. But Leo, her social worker, soon put her at ease with his calm manner. He was nothing like what she was expecting – he was even wearing jeans!
Together they have talked about how Amelia could channel her feelings and let others know when she’s feeling sad or afraid. One way has been to write down how she’s feeling so that she can see at what times or in which lessons at school she is most likely to get upset. To balance her feelings of sadness, Leo has advised her to spend more time doing things that make her happy like art, drama and music.
One simple technique that Amelia found really helpful is to draw an angry face on her hand every time she feels anger. It makes her aware of how she’s feeling and can also make it easier for her to talk to others about it.
Today Amelia is coping much better. She understands why she feels as she does and has been shown ways to deal with it. She is much happier and can enjoy time spent with Grandad Joe. In the summer they went along to the Hospice’s Fun Day and had a great time dressing up for pictures in the photo booth – a magical memory she’ll always cherish.
“Tracy is more than a friend. She’s part of the family.”
For 87 year old Joe from Shepperton, Christmas 2016 was unforgettable for all the wrong reasons. He had lost his wife, Patricia in June that year and Christmas without her was going to be hard. Theirs had been a long and happy marriage and they had been proud to receive a telegram from the Queen on their 60th anniversary.
Then just a few weeks before Christmas Joe was diagnosed with prostate cancer. It was a terrible blow for him at a time when he was still mourning his wife. At first he stayed at home but as his illness progressed, it was clear he couldn’t cope on his own and he moved in with his daughter Alisa and her family.
After undergoing different types of treatment including radio, chemo and hormone therapy Joe was referred to Princess Alice Hospice for palliative care. It was then that Tracy came into his life.
“You just feel cared for.”
Tracy Meadwell is Joe’s nurse from Princess Alice Hospice. He wasn’t sure what to expect at first but as soon as he met Tracy he knew he and his family were in safe hands. She was friendly and relaxed and answered all their questions honestly.
As well as helping Joe with managing his symptoms and pain control, Tracy was able to offer him other services from the Hospice. He has really benefited from physiotherapy sessions which help him stay mobile and he very much enjoys the free massage sessions which he finds very relaxing.
He was also relieved to see how much support his daughter, Alisa, was getting from Tracy. “She takes a lot of pressure off my daughter,’ he says.
“Being able to call the Hospice was a life saver.”
Tracy comes around every two weeks. But in between visits Joe and his family know they can call Tracy with any questions and concerns. One of these phone calls saved Joe’s life.
He had been suffering a lot of pain but had already taken the maximum dose of tablets. He and Alisa didn’t know what to do next. So they called Tracy. She was away so they spoke to her colleague who knew all about Joe’s case.
She immediately realised that Joe was experiencing spinal compression and told him to go straight to A&E. Thankfully he was treated in time, but without that phone call, Joe could have been left paralysed, or worse.
At first Joe was quite dubious about being cared for by a hospice. But not anymore. He and Tracy have a close and trusting relationship, and although Joe likes to tease Tracy sometimes, when she’s out of the room he confides: “I can’t praise her enough”.
“Princess Alice Hospice bridges the gap with support, care and love.”
Think of a hospice and what picture comes into your head? A patient in bed being cared for by a nurse? Our work goes way beyond this. Because we’re there for the whole family, giving them all practical and emotional support for as long as we’re needed. And it makes a big difference.
No one would agree more than Joe Burchell and his family. Joe is 87 and lives in Shepperton with his daughter Alisa, son in law Paul and twelve year old granddaughter Amelia. The last eighteen months has been tough for them all.
Heartbreak at Christmas
In December 2016 Joe was diagnosed with prostate cancer. It came just as the family were preparing to spend their first Christmas without Joe’s wife, Patricia, who had died in the summer after a long illness. The news about Joe was a devastating blow for them all.
Joe moved in with Alisa and her family and Alisa became his main carer as well as being a Mum and holding down a part time job. Although she had helped care for her mother, she didn’t have any experience of caring for someone with cancer.
But then the family were referred to Princess Alice Hospice. At first everyone felt a little dubious, not least of all Joe. Just the word ‘hospice’ conjured up negative images. Until, that is, the family met Tracy.
The expert who became a friend
Tracy Meadwell is one of our team of specialist palliative care nurses who work out in the community, visiting patients in their own homes or in their care home. But she’s not just there for the patient – she’s there to support the whole family.
She gave Alisa practical advice on symptom management and pain control, which really helped to build up her confidence in caring for her father. She was also able to talk Joe through the various tests, treatments and therapies he was going through. Having someone there to explain things and answer questions was very reassuring.
A gateway to others who could help
Tracy quickly picked up on the fact that everyone in the family was suffering in some way. As a Princess Alice nurse, she was able to tell them about other hospice services which could help them.
Alisa and daughter Amelia were finding it particularly hard to cope with feelings of sadness and grief. They had already suffered one bereavement when Patricia died and Joe’s diagnosis had added to their pain and grief.
So Tracy referred both of them to Princess Alice Hospice counsellors. They are specialists in helping people deal with the difficult emotions around terminal illness and loss. Thanks to the help they’re getting, Alisa and Amelia have learnt better ways to cope with their feelings and carry on their normal lives at home, work and school.
“It’s like being part of a family”
The family were also surprised to learn that the Hospice runs a busy calendar of social events from craft clubs to drop-in support groups where they could meet other people in similar situations to theirs. Being able to share experiences can help reassure people and make them feel less isolated.
Far from being a sad place, Joe and his family have found our Hospice to be a peaceful and positive place they enjoy coming to. “People are happy to be here,” says granddaughter Amelia, “They make everything fun.”
One highlight of the year was when Joe and his family came along to our annual Fun Day in the summer. It was a precious opportunity to relax and just enjoy each other’s company. Amelia and Joe particularly liked the special photo booth and have the pictures to prove it!
Someone to rely on
Tracy visits Joe and his family every two weeks. But even when she’s not there, the family know they can pick up the phone and talk to her or one of her colleagues at any time.
It means they don’t have the worry of wondering who is the right person to call with a problem or a question. “You know that if you phone, she’ll put you on the right track,” says Joe.
No one knows what the future holds but there is one thing Joe and his family can be sure of – whatever they’re going through, they won’t have to go through it alone. Tracy and the rest of the Princess Alice Hospice team will be there to support them for as long as they need them. Which means they can get on with making the most of their time together as a family.
Des Williamson- Vicar of the United Church of St Mark
“Bereavement Cafés are an important resource – they help us reach more people in need.”
As the Area Dean for Epsom, Des Williamson is responsible for overseeing 15 churches in our area. For some time, he and his colleagues had been keen to offer more support to bereaved families after a funeral. So when he was approached by Steve Nolan, chaplain at Princess Alice Hospice, with the idea of opening Bereavement Cafés in local churches, he was happy to help.
“We contacted churches in the area to see who wanted to be involved. As a result, we set up two Bereavement Cafés in churches and another in an existing café was started and run by Age Concern/Staywell. Princess Alice Hospice helped train up our volunteers and gave us great resource material to use. ”
“It’s important to meet people in the same boat.”
At St Mark’s, the Cafés are open on Saturday mornings. Everyone is welcomed on arrival with a cup of tea or coffee and offered a seat next to a volunteer. For the first half hour, people enjoy chatting informally and then the group session starts. To make it easier, the volunteers use cards with words or sentences to discuss topics such as ‘loss’ or ‘money’ or ‘people avoid me’. “No one is forced to talk,“ says Des “You can pass on a card and just listen if you’re uncomfortable talking.”
“People find coming to the Cafés socially enriching.”
But it’s not all about talking about difficult feelings. The Bereavement Cafés also help tackle the loneliness and social isolation that many bereaved people experience. “One man who comes to the Café lost his wife 18 months ago. Most of his social life had been with his wife and when he lost her, he stopped going out.”
Many people find they make good friends at the Café. One volunteer decided to arrange social meet-ups, so members could get together more often. She has also reached out to other lonely people in the community who don’t attend the Café, giving even more people the chance to enjoy regular company.
“We couldn’t do this without our volunteers.’
Des is full of praise for the volunteers who run the Cafés. “Nearly all our volunteers have been bereaved themselves. It’s so important for the people who come to the Café to be able to share their feelings with others who have been through it. I’d like to thank all our volunteers – they give so much of themselves. That’s what makes the Café such a safe and caring place for people to come at this painful time in their lives.”
Suzanne Turner – Nurse
“Leaving this world is just as important as coming into it.”
Last May Suzanne was spending most of her time at her husband’s bedside at Princess Alice Hospice. Little did she think that just a few months later she would be working as a nurse here.
Hers is an unusual experience and it means she’s in a good position to talk about the Hospice “from both sides of the fence.”
“From the point we were referred to the Hospice, we felt supported.”
Suzanne’s husband, Chris, was in hospital when he was told that his cancer was terminal. Although he was getting help with pain relief, he and his family needed more support. Fortunately, they were referred to Princess Alice Hospice. “They were so good,” recalls Suzanne, “Chris came home on Saturday and on Monday a nurse and a doctor from the Hospice came to see us.” They were able to help with pain control and a swelling in Chris’s leg. Realising that Suzanne needed support too, they arranged for a social worker to give her emotional support. “I was caring for Chris, working, looking after two children and all the while worrying about the future.”
“Chris had a positive death – and that’s helped us all.”
Chris decided that, for his children’s sakes, he didn’t want to die at home. So it was a great relief when he was given a place at the Hospice. “We were able to be with Chris whenever we wanted,“ says Suzanne. “As a former nurse myself, I was allowed to do some of the care for him. We were both grateful for that – it wouldn’t have happened in a hospital. Most importantly, we were able to be there when he passed away, so he wasn’t on his own.”
“Now I want to help others by training as a palliative care nurse.”
Seeing the care that Chris received at the Hospice inspired Suzanne to come back to nursing and to specialise in end of life care. Just a few months after he passed away, she found herself back with us, this time on a training placement. She found it a little strange at first to be ‘on the other side’, but she soon felt at home. “It was my place of work, rather than the place my husband died.”
“What I love about this work is that you treat the person, not just the illness,“ she says, “and here at the Hospice you have time to talk with patients. People who are dying often worry about how their family will cope. I’m able to tell them from first-hand experience that they’ll be well supported by the Hospice.”
Tony Green – telephone volunteer
“I wanted to keep myself busy and keep my mind active.”
Tony’s work as a TV cameraman took him all over the world. He witnessed major events as a combat cameraman covering war zones, and met important figures including many prime ministers.
His interest in people and their stories didn’t end when he retired. One day he was listening to the radio when he heard that Princess Alice Hospice was looking for volunteers.
“I used to live near the Hospice,” he says, “so I knew about the incredible work they do.” He had been looking for a volunteering opportunity that he could fit in around his other commitments and this seemed ideal.
“I’ve got time to listen.”
After a couple of interviews at the Hospice, Tony joined the bereavement support team as a volunteer. His job is to telephone bereaved families about three months after the death of their loved one to ask how they’re doing and tell them about support services which may help. These may include one to one sessions, group sessions or joining in activities such as walking or woodwork in the Hospice Man Shed.
He likes being able to work from home at times to suit him. And every call is different. Some people don’t want to talk because it brings back painful memories. Others are very lonely and welcome hearing Tony’s friendly voice. Sometimes, a bereavement can give rise to other problems, such as family conflict or financial problems.
Tony’s job is to listen and point the person to where they can get the help they need. As someone who has experienced loss himself, he understands the complicated range of feelings it can bring.
“I like to still feel part of a team.”
One thing Tony really enjoys is meeting other volunteers and staff from Princess Alice Hospice. He’s part of a team of 15 volunteers doing the same job as him. They meet up regularly to talk about their work and any issues they’re having. “They’re a very nice, social group of people, “ he says, “and there’s a friendly, caring atmosphere.”
“I am very privileged to be a member of the Princess Alice Hospice family”
Tony appreciates the support he gets to do his job. As well as the meetings, he has also been sent on courses about helping bereaved people. “I’d say it’s a worthwhile job,” he says. We couldn’t agree more.
Den Pearce – Buddhist chaplaincy volunteer and facilitator of LGBT bereavement group
“We are just there for people in that moment.”
Our Hospice chaplaincy often surprises people. Many people expect it to be a mini version of their local Church of England. But our chaplaincy is different – it’s there for people of all faiths or no faith. And it isn’t just a place – the chaplaincy is a group of people who offer compassionate support to patients, families and carers. They work at the bedside, in the coffee shop, in patients’ homes – wherever they are needed.
“I’m not there to counsel. I’m there to support and listen non-judgementally.”
Den Pearce is a practising Buddhist and, for the last four years, a volunteer with our chaplaincy service. “I work on the wards mainly. I tend to spend more time with families than patients, because they are often too poorly to talk. My job is not to counsel people, but simply to be there with them when they need it.”
Den has found that although it’s quite rare to meet a Buddhist patient or family, being a Buddhist makes him accessible to everyone. “I think that some people worry that the chaplaincy will try to ‘convert’ or ‘recruit’ them. That’s not what we’re about at all. But somehow when they realise I’m a Buddhist, that worry seems to disappear.”
On occasions Den has also been asked to be with someone in their final moments. “Although the patient is unconscious, I think it makes a difference. It just feels right. No one should die on their own.”
“It’s important for everyone to feel safe and accepted at the Hospice.”
Den also facilitates an LGBT bereavement support group at the Hospice. “Support groups can really help some people,” he says, “but going to a general group can be difficult for LGBT people. Just talking about your partner, for example, means you have to come out in front of a group of strangers.”
He is hoping that the group will flourish and would encourage any LGBT people who are living with bereavement to come along and see if it’s helpful for them. “The Hospice is a very safe and welcoming place anyway. But LGBT people may find it reassuring to know there is a group here just for them.”
“I feel very appreciated and supported at Princess Alice Hospice”
Like most of our volunteers, Den loves working for Princess Alice. “I feel appreciated and really well supported. Steve, the chaplain, is always there to talk to if I need him. Everyone here is so friendly and I feel completely accepted by everyone.”
“It’s reassuring to have Sharon in my life. I feel supported all the time.”
When Sue was first referred to Princess Alice Hospice, she cried. Receiving a terminal prognosis had been shocking enough and now this… Little did Sue suspect that through the Hospice she was about to meet someone very special – someone who was to make such a difference to her and her family.
“She’s so warm and funny. We laugh a lot together.”
Sharon is one of Princess Alice Hospice’s social workers. She visits Sue to provide emotional and, sometimes, practical support. Right from the start, they hit it off and Sue really appreciated the fact Sharon came to see her at home, where she feels most comfortable.
But it’s having someone she can talk to about anything that Sue has valued most. “I can’t talk to friends or family about end of life stuff. I feel guilty about upsetting them. But with Sharon I can talk openly about my plans and write out lists and instructions for my family. These conversations are so important – but quite often Sharon and I end up in fits of laughter!”
Sharon has also helped Sue talk about the future with her family. She’s given her advice about how to explain things to her sons and two young grandsons. “I think it’s important to be honest about your illness, and it means I’m free to say ‘I don’t feel great’ or ‘I don’t want a visitor’.”
“I’m so fortunate to have a hospice neighbour too.”
Sue has another friend to turn to, this time even closer to home. Lyndsey is one of our volunteer ‘hospice neighbours’ who visit patients in their community. “She’s young enough to be my daughter but we get on really well,” says Sue. Lyndsey has been a cancer patient herself and when she recovered, she wanted to help others. “We don’t have cancer conversations. We go out for coffee. Time really flies with her and it’s good to be with someone who’s also been on a cancer journey.”
In spite of her situation, Sue feels lucky. “Princess Alice Hospice is everything I thought a hospice would be. Everyone is so positive and loving – they give you this enormous sense of enveloping warmth. And if sharing my experience can help someone else, I’ll be happy.”