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. One such patient was Karen.
“I came to Karen’s home one evening and had the privilege of making her final night a little easier. She was only about my age and her grief-stricken partner was struggling to take it all in. Her mother was suffering in the way that only a mum losing her child can – but got into Karen’s bed and simply held her. It was heartbreaking. Karen’s sister was there too, and a couple of close friends. Because I was able to give her care at home, Karen was surrounded by warmth, love and laughter as her life drew to a close. In the early hours, I left the room to give Karen’s nearest and dearest some time alone with her. Not long after, her little boy came and joined me. He was only seven or eight and reminded me of my own son – so I chatted to him about ordinary things. It would have been so much more difficult for the family if Karen had been in hospital. But instead of those clinical sounds and smells, she ended her days in the heart of her home. It normalised things for her young son too, giving Karen peace of mind.
I was so glad that Karen had support when she needed it, until the end. Usually, I manage to fight back the tears, but once my shift was over, I wept as I thought of the mother, partner and son Karen had left behind.”
Becca is passionate about her job, but it can be lonely and exhausting. “The area where we work is very wide and some of our patients live in really rural locations, where the street lights go out at midnight. It’s not unusual to find yourself stumbling around in the dark with a torch, looking for the right house!”
“I take some of the burden away from relatives too”
Caring for someone is physically and emotionally draining. I might give them a much-needed rest, or simply a chance to talk openly. And if the patient dies, I’ll support the family through that difficult time too.”
Night nurses play an important part in the wider team caring for the patient. They work together to solve problems and provide free, joined-up care around the clock.
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 counselling. “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.”