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Keith’s story

“Kate had such an uplifting spirit, she would always say ‘I’m not dead yet, so we’ve got lots of living to do!’

Talking about death and what ‘dying well’ would look like was something Keith Brown and his wife Kate were never afraid to discuss following her terminal cancer diagnosis in 2016. Being open and honest about the heart-breaking situation their family found themselves in meant Kate was able to live the last years of her life to the full, whilst dying in peace and comfort at home thanks to the care and support of Ashgate Hospicecare.

Kate received ‘warm and compassionate’ care at the North Derbyshire hospice, from her first visits to the Day Hospice until the day of her death on 27th November 2020.

Now, as part of Dying Matters Awareness Week, Keith has spoken of Kate’s end-of-life journey and the care the family received at Ashgate, to highlight the importance of not shying away from talking about death.

The 72-year-old said: “Kate was so strong; she was a tremendous person. Her spirit, faith, determination and her happiness despite having a terminal prognosis spilled over to us and talking about the situation meant it was easier for us to deal with.

“We started talking very openly about the end of her life as soon as she was given a terminal diagnosis. We spoke about it together and with our boys Alex and Sam; we were all dealing with it differently, but it made everything much easier for us all.

“Kate had such an uplifting spirit, she would always say ‘I’m not dead yet, so we’ve got lots of living to do!’

“We decided to live our lives to the full which meant we were able to make special memories together through our shared loved of photography and on unforgettable trips to Switzerland.

“Kate was always determined to live every moment and that’s exactly what we did!”

Kate, who lived in Hope and worked as an accounts assistant, was anxious about accessing the hospice’s services at first because she thought hospices were places of ‘doom and gloom’.

But Keith insists when Kate first attended the Day Hospice, which provides specialist palliative care to patients who are living with a life-limiting illness; that was far from the case. They found Ashgate to be a ‘beautifully calming and happy’ environment, which will now forever hold a special place in the family’s hearts.

He added: “Ashgate became a very special place for us after it helped Kate and I physically, spiritually and mentally. We were nervous about visiting the hospice at first but the welcome we received was overwhelming and from then on, our experiences were always second-to-none.

“We discussed it beforehand, and it was her wish to die at home. As she got progressively more poorly, it turned out to be the best decision for us all, as she was so comfortable with the support of Ashgate by our side.

“It was difficult because of the lockdown but Ashgate made sure there was someone there in the weeks leading up to Kate’s death and they were even there to support us on the day she passed.

“For us, receiving the support of the hospice felt as if a burden had been lifted. The people are so compassionate and are there to give you the support that you need.

“From the nurses that came out to care for Kate to the counselling I received to help me adjust before and following her death, the care was excellent, and I can’t thank everyone enough for their loving support.”

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Vanessa’s Story

“I’ll never forget the special memories me and my mum Jean made during her last few days at Ashgate.”

A daughter has told of her Mother’s Day heartbreak after being unable to celebrate with her mum last year, in what would turn out to be the final one for the pair. Vanessa Pearce, 40, from Derby, still has the unopened Mother’s Day card and enclosed letter she’d written for her mum last year; the lockdown meant that she was never able to give them to her. Sadly, Jean, who had terminal lung cancer, died in August after the disease had spread to her brain and lymph nodes. But Vanessa has nothing but praise to give for staff at Ashgate Hospicecare, in Chesterfield, saying she is grateful that she was able to make special memories with her mum while she was in their care during the last week of her life.

“I’ll never forget the special memories me and my mum Jean made during her last few days at Ashgate. It was the little things that meant the most; we’d just sit there and talk to one another about anything and everything.

I remember she hadn’t been able to read because her eyesight had got bad with her illness, so I sat next to her and read from her Sarah Millican autobiography. She would just lay there and drift off to sleep.

It was such a hard time, but I was able to spend every moment with mum while the staff on the inpatient unit focused on looking after her. They made her so comfortable and put her at ease from the moment she arrived.

Ashgate was such a wonderful place for her to be in. She spent a week at the hospice and was able to laugh and joke with the staff in the early days – from the housekeepers to the doctors and Health Care Assistants, everyone was so lovely to us.

Even when she was sleeping, they’d pop their heads in to check she was okay and if she needed anything. The care she received couldn’t have been better, there was nothing you could have improved.

Before receiving end-of-life care on Ashgate’s Inpatient Unit, Jean regularly attended the Day Hospice where she could socialise and speak to health professionals about her condition.

At the Day Hospice she’d make all sorts of things in the craft sessions and enjoyed having a little tipple; flavoured vodka was her drink!

She’d start a conversation with anybody and make friends wherever she was. She was always so happy and there was never a sad moment when she was around.

Mum won’t be here this Mother’s Day, but I’m so glad and grateful we got to make those lasting memories at Ashgate in her final days; I’ll always remember them.

I’m looking forward to this lockdown being over so that on the one-year anniversary of her death, I can fulfill her wishes of scattering her ashes in Cirencester, where she used to live and work – that was her happy place.

I mentioned to her that I was going to use a little bit of her to create a memorial ring, so she’d always be with me, but she wasn’t too sure about it. I told her: “I’ll be able to take you on holiday with me! When I said that she was more than happy with the idea!”

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Richard’s Story

“Don't presume that you’re just going somewhere to die, that’s not the case at all.”

Richard was encouraged to attend Ashgate Hospicecare’s Day Hospice after becoming somewhat of a recluse, but he was apprehensive about taking part at first. Booked to start the Living Well 12-week programme in March last year, his plans were halted when the UK was plunged into its first national lockdown. Since then, Richard, who has stage three lung cancer and severe chronic obstructive pulmonary disease (COPD), has been shielding to protect himself from catching the deadly virus, but it’s meant he’s been unable to receive in-person support at the Old Brampton site.

That is until Ashgate launched its new Virtual Day Hospice service for patients who would usually attend in person each week, so they could continue to access the hospice’s range of services from specialist medical support to complimentary therapies.

The online sessions take place between patients and healthcare specialists over the phone and on video calls.

Richard, who worked as a senior manager of a finance company before his diagnosis in January 2017, had been experiencing feelings of loneliness and isolation while shielding from the virus, but Ashgate’s support has helped and given him a sense of purpose.

The 54-year-old, from Killamarsh, said: "The Virtual Day Hospice has given me something to look forward to every week – I’m planning my week around them now rather than sitting there and just watching Judge Judy on the television!

“It might only be an hour a time but that ends up taking a good few hours out of your day, because you have the hour getting ready, the hour taking part and the hour after to reflect on it. It breaks up my day and just gives me something to do.

“I’ve enjoyed attending the coffee and quiz and there’s lots of talks that you’re invited to as well; there’s always specialist healthcare staff available if you have any questions as well. I know where to go now if I need advice on anything.”

Richard’s life has changed massively over the past five years.

He took redundancy in May 2016 and was planning to take six months off when his brother suffered a cardiac arrest, leaving him in a coma for several weeks.

During this time, Richard himself was diagnosed with lung cancer and he ended up being in hospital at the same time as his brother.

He says that recently his life had started to become increasingly reclusive, which is why an Occupational Therapist referred him to Ashgate’s Day Hospice.

Initially he had reservations about attending the hospice, but admits the experience has been “completely different” to what he expected.

“My life has changed massively since my diagnosis, it’s been incredibly complicated,” Richard added.

“My consultant referred me to see an occupational therapist, who didn’t think I was getting out enough so recommend I attended the hospice – I wasn’t socialising and was starting to become a bit of a recluse.

“It was around February or March time last year; I was set to start at Ashgate the following week but we went into lockdown.

“I was concerned at first. I’m not close to dying so I was wondering why I had been referred to a hospice, but it’s completely different to what I was expecting.

“There are so many different aspects that can help you, whether it’s symptom control or just having kind people to have a chat with.

“Just because you hear the word hospice, don't presume that you’re just going somewhere to die, that’s not the case at all.

“Ashgate is there to help you and there has been plenty of stuff that’s been really interesting that I didn’t know about before. I’d recommend the services to anybody who was considering attending.”

The Virtual Day Hospice initiative was made possible thanks to a £78,606 grant from the Coronavirus Community Support Fund in partnership with the National Lottery Community Fund.

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David’s Story

“I thought it was a place people just went to die, but it's much more than that.”

In 2013, David Lawton’s life changed dramatically when he suffered a cardiac arrest during a ceremony in which his son was being recognised for his service in Afghanistan. Army medics rushed to his aid and resuscitated him before using a defibrillator to keep his heart pumping. He was placed into an induced coma for two weeks and now relies on an ICD implant to keep him alive.

Lucky to survive the terrifying ordeal, he has lived with heart failure ever since and is now adjusting to a different challenge following the outbreak of the pandemic.

It’s been a difficult year for the 73-year-old but being invited along to Ashgate Hospicecare’s Virtual Day Hospice has certainly been a highlight.

He’d never accessed the hospice’s services before the lockdown started but has enjoyed making friends at the weekly coffee and quiz events and testing out his art abilities at the activity sessions.

David, from Hayfield, in High Peak, said: “A local heart specialist nurse put me in touch with Ashgate via my doctor, she asked me if I’d like to try out the Virtual Day Hospice services, so I thought I’d give it a go.

“It’s nice to have friendly people to speak with; they’re people who are on the same level as me with regards to their ailments. We can have a laugh and a joke, doing the art and that.

“I’ve enjoyed the coffee and quiz and art sessions too. There’s lots of useful information you pick up on and everyone shares their experiences.

“It’s all helped and given me something to do which isn’t too strenuous at this moment in time.”

Like many of those who use Ashgate’s services, David is at increased risk of developing severe symptoms should he be infected by Covid-19.

To reduce his chances of catching the virus, he has rarely left his house since last March, which means he’s been unable to give his beloved grandchildren a hug.

But Ashgate’s Virtual Day Hospice services give him something to look forward to each week and allow him to stay connected with other people in a similar situation to his own. He adds: “I’ve found it to be interesting and very entertaining and it’s stopped me from going round the bend because I’ve had something to look forward to!

"To be honest I thought a hospice was somewhere where people just went to die but it’s not the case, it’s much more than that.

“I would recommend the services of Ashgate to anyone because it is a big help. You can find out so much useful information with the people and services that are made available to you.

“You can always ring them up and ask them about something. It really is a great thing and I’m grateful to have had the opportunity to be involved with it.”

The Virtual Day Hospice initiative was made possible thanks to a £78,606 grant from the Coronavirus Community Support Fund in partnership with the National Lottery Community Fund.

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Paul’s Story

“From the moment I walked through the doors at Ashgate I knew that Kim was in safe hands.”

After being diagnosed with ovarian cancer in 2014, Kim Clayton underwent four rounds of chemotherapy and a hysterectomy. Tragically the cancer returned and in November 2020, during the midst of the Coronavirus pandemic, she was admitted to Ashgate Hospicecare’s Inpatient Unit. Sadly, at 56 years old she died just a few weeks before Christmas. Paul, her husband of 33 years, describes the difference Ashgate Hospicecare made.

Paul said: “From the moment I walked through the doors at Ashgate I knew that Kim was in safe hands. She’d been suffering from severe pain for some time and Ashgate was able to get a handle on that almost immediately, it brought her great relief and meant that she was able to make the most of the time she had left.

“Throughout her stay, Kim was always well looked after, and everyone involved in her care took the time to explain what was happening and what to expect. In fact, everybody who works there deserves a special mention, from the volunteers to the doctors.

“They all took the time to know your name and to talk to you, it really feels like you are part of one big family. They were incredible and offered support in every way.”

During her time in hospital Kim had been unable to have any visitors due to restrictions caused by COVID-19. However, following her move to Ashgate Hospicecare, Paul was able to visit daily due to patients having private rooms.

He said: “We used to say that staying at Ashgate was like being at home, with all your home comforts but with expert medical care when you needed it. Kim had her own room that looked out over a patio with a bird feeder. It sounds like such a small thing, but Kim liked to sit and watch the birds, just as she had done at home.

“Being able to visit as often as I liked made the world of difference to Kim and I. Phone calls are great for keeping in touch, but nothing beats physically being together, even if we were sat doing our own thing, we found great comfort in just being close to one another. That is especially true when you know that time is against you.”

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Sheila’s Story

"Hospices are places to gently reflect, be cared for, and hopefully ease the inevitable for yourself and your family."

Sheila was cared for on our Inpatient Unit and was so touched by the kindness of our staff and volunteers that she wrote this beautiful letter.

"The day I was transferred from hospital to Ashgate Hospicecare was grey, wet and windy. As I walked through the doors I started to cry. The first thing that happened was a total stranger came and sat next to me and asked if I wanted a hand to hold. It was such a small gesture, but it was so powerful. That is Ashgate. It holds your hand. In fact, for me it put its arms around me and hugged me.

I was put in a room with a view of flowers and a bird feeder. And the next day, when my son and partner came to visit, both said it was the first time in weeks they had seen anything like a smile on my face.

I know my time is limited, and sad things will happen here at the hospice, but it is not a sad place. It emanates calm, quiet happiness for simple things, and acts of tenderness from staff and volunteers. If you need to talk, they will talk. If you need quiet, that is there too.

Places like Ashgate Hospicecare are precious and the wider community must be made aware of this. They need support, and any sort of funding that you can give, however small, will help to keep hospices alive.

Hospices are not places to come to die, although I hope that is what I will be able to do. I can think of no gentler departure. Hospices are places to gently reflect, be cared for, and hopefully ease the inevitable for yourself and your family.

Look after the hospices, like Ashgate Hospicecare, in this country. No one can tell you how special they are until you need them. Please don’t lose them. They need all the recognition they can get.”

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Sarah’s Story

“I was with my partner, Jackie for 38 years. She wasn't just mine, she was the world's really. We had a great time together and everybody tells me now how quiet things are without her here.”

“When Jackie was diagnosed with Chronic Obstructive Pulmonary Disease (COPD), I had to come to terms with the fact that she would be the one to die first. I just didn’t expect her to die so soon. Five years went by with us trying to cope and her gradually getting worse, and then she had a stroke in 2012 and that’s when things really changed."

Part One

"In 2014, Jackie had to retire due to ill health, however we continued to make the best of life and we would go on many trips and have friends over. In August 2016, Jackie was admitted to hospital with stomach pains and released with pain relief. Then in December 2016, Jackie went back into hospital with a chronic chest infection. By now her energy levels were seriously low. She was discharged and had support from a physiotherapist. She fought on working towards rehabilitation.

Jackie’s twin sister died in October 2016 and then she had to deal with her father’s death at the end of January 2017. After returning home from the funeral, which she had helped organize, she was exhausted. A week later, the rest of her body began to let her down. Her liver started releasing toxins which caused her to be confused and which compromised mobility. Jackie ended up going back into hospital in March 2017. Her brain was not telling her when she was thirsty or hungry and, even though she initially agreed to tube feeding, this was abandoned after the third attempt. At this point, Jackie was assessed at the hospital and that was when we were told that she had only four to five weeks left to live.

Everything changed when we were introduced to Chris, a palliative care nurse from Ashgate Hospicecare, who was based at the hospital at the time. From then on, we were gold plated! Jackie had a personal advocate in Chris, who could offer her palliative care expertise to ensure that Jackie was getting everything she needed whilst in hospital. Chris helped to support Jackie in coming to terms with what was happening to her physically and emotionally, while keeping me going too.

After a discussion with Chris and Jackie’s GP, it was decided that Jackie should be placed on the waiting list to be admitted to the ward at Ashgate Hospicecare. Her medication needed changing so often that they decided being at the hospice where she could be monitored 24/7 would be the best thing for her. In her usual selfless way, Jackie said, ‘I don’t want you to have to look after me. I'm going to the hospice.’ We knew people who had been cared for here and so Jackie knew that it was a wonderful place. Jackie wasn’t afraid of dying, she was just worried about the rest of us - especially me. A bed was available at the end of March 2017 and Chris did all she could to make the transfer as smooth as possible.

Jackie’s condition had progressed and by now and she was no longer able to make decisions. Nonetheless, the staff discussed all the options with me fully and always treated me as an equal in doing so. I told them the ‘Jacqueline Waring way of doing things’ and they completely respected her wishes. This was a pleasant change from some of the care environments Jackie had been in before. It was important to both of us that her wishes were listened to and I always felt in a partnership with the hospice in that respect.

During the time Jackie was on the ward, the staff were considerate in leaving us to spend time together, while always being on hand to offer the prompt nursing support that Jackie needed to keep her safe and comfortable.

Jackie started to sleep more, but she still needed a lot of medical attention. Every member of staff was coming up with different ideas to help make her as comfortable as possible. If she was wriggling around, they came in and would try to settle her. It was reassuring to know that she was very safe here. I don’t think we could have achieved that at home.

As the week progressed, Jackie became weaker. However, the staff kept me informed about what was going on and how her death would be managed. They made sure they all knew Jackie’s end of life wishes.

Jackie died very peacefully at 5.45am on 7th April 2017. They weren’t expecting her to die so quickly and I was at home when they phoned me to tell me what had happened. I raced to the hospice and arrived at about 7:20am. The first thing I noticed when I walked in to see Jackie was how tidy her room was. We’d had all sorts of issues with Jackie not staying put on her bed and so it had looked quite a mess in the end. But they rearranged everything and made the whole space look very nice and peaceful. It didn’t look medical at all.

I was with Jackie for 38 years; we met in our twenties. She was a stubborn and bossy woman with a very big personality, but she was a terribly caring person towards me and everyone around her. The amount of times people have come up to me and told me things about Jackie or written to me since she died has made me realise that she wasn't just mine, she was the world's really. She touched so many people. We had a great time together and everybody tells me now how quiet things are without her here.

The lead up to Jackie’s death was a roller coaster for us and, whilst naturally I wish it had never happened, I am pleased that Jackie died where she did and that all her needs were dealt with right to the end. Even though Jackie died much more quickly than I’d expected, I wouldn’t have wanted her to go on how she was, and I know that she certainly wouldn’t have liked it. The hospice ensured she had the best possible quality of life right up until the end and I’ll be eternally grateful for that.”

Part Two

“After my partner, Jackie, died on the ward at Ashgate Hospicecare, I didn't take up the immediate offer of counselling because I was so well supported by ‘Team Sarah’, as I call them! These are a group of my and Jackie’s mutual friends who were there for me through it all. Jackie had told them to look after me and nobody says no to Jackie!

Jackie and I were quite different, but we complemented each other well. Even when Jackie was really ill, she was an emotional comfort to me and I was to her. And lovely as ‘Team Sarah’ are, in the end, my friends couldn't fulfil all my emotional needs and I became emotionally worn out. That’s when I realised that I needed bereavement support from the hospice. Even though it was well over a year after Jackie died, the Supportive Care Team at the hospice were still happy to offer me support.

I also decided to become a volunteer for the hospice. I do bucket collections and help wherever I can, at events and so on, and I've met a lot of lovely people. Not only that, it’s a comfort to me volunteering for the hospice as it was something that Jackie and I were going to do together when we retired. We were supporters of the hospice even before it opened over 30 years ago and we always wanted to help.

When I was assessed by the Supportive Care Team, they decided that a drop-in support group might be the best thing for me. It had just started up at the time. The counsellor, Liz, was able to give each of us a little bit of one-to-one time and see if we needed formal counselling. There were only three people there when I first started going and we were at different stages of our journey, but it was nice to chat to each other and hear what other people were going through.

Liz was very welcoming and said that I could keep coming to the group as long as I wanted to. I still attend most weeks now as it’s good to have that space to talk about how we feel. It’s a place where I know that I can go and exhibit my fragility, and where I can have the counselling insights of Liz too.

One thing it’s helped me to realise is that grief doesn’t always get better over time and that it’s very normal to still have days when I feel very fragile, and not to worry about feeling like that time spent chatting to Liz and the other attendees over a nice cup of coffee does the trick. We do different activities and have a lot of fun too.

I’ve met some really interesting people there and struck up friendships with some of them. It’s provided a forum where people don’t feel like they’re on their own. I’m very lucky that I have a very active social life, which is bolstered by volunteering too, but I can see how important the group is for some people socially.

What I have learned on this journey is how important it is to be able to talk about death and to not make it a taboo subject. It's going to happen to all of us. You can't say you're ever ready, but I was prepared both by Jackie and by the staff at the hospice. Jackie and I didn't always see eye to eye; we rowed, we argued, and we irritated each other immensely at times! But at the end of the day, there was nothing we left unsaid. I shall be forever grateful to Ashgate Hospicecare for all they did for Jackie and for all they continue to do for me.”

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Dawn’s Story

“Ashgate Hospicecare is a cheerful place, not the sad place I thought it would be. The happy times didn't stop when mum came through the hospice doors.”

“Mum was diagnosed with thyroid cancer at the beginning of February 2019. Mum took this news very gracefully, but I was distraught. She had looked after her mum when she was dying and she didn’t want that burden passing onto us. She made it very clear from the start that, if it came to it, she wouldn’t mind being cared for by Ashgate Hospicecare. I was less convinced."

"I was terrified. I thought hospices were quiet, serious medical places. I came with her on that first day and I was so upset walking through those doors, no matter how much mum was telling me not to get upset. All I kept thinking was, ‘Mum is never going to leave here’.

As I spent more time on the ward, however, my opinion of the hospice changed. I saw families come and go on the ward as patients were sent home. I could hear laughing and joking coming from other rooms and I didn't expect that at all. It was a cheerful place, not the sad place I thought it would be.

Something that will always stick with me is, the day after mum arrived at the hospice she said, ‘I feel so much better now I'm out the hospital. It's so relaxed here, I feel better already.’ And for a few weeks she was a lot better in herself. It was lovely to see. Mum loved her time on the ward. Although she was very ill and couldn’t eat or drink, every single staff member took the time to get to know her and find out what she liked. They offered mum a lolly just to taste, which was really thoughtful. Mum thought it was like a hotel with room service! Even the housekeepers and the kitchen staff would pop their head round the door and say hello. Everybody was so kind.

The staff let mum do things at her pace. For example, in the mornings they’d ask if she wanted to have a wash and get dressed and if she just wanted to chill out in her pyjamas for a while, then they’d come back and wash her later. They’d say, ‘Just press your buzzer when you want us, Glenice’. Nothing was too much trouble. Having the buzzer meant that she felt safe even when we weren’t there. And when I wasn’t staying at the hospice, I could call the nurses anytime and ask questions if I was worried about mum.

Mum loved watching the birds from her room, especially two pheasants that kept reappearing. She named them George and Mildred and she used to watch out for them walking past her room every day! We had so many laughs about them! The first time she spotted them, one landed on the tiny bird table outside her room and it started to tip over with the weight of the bird. I heard mum burst out laughing which was so lovely as I hadn’t heard her laugh in a long time. It brightened her day watching the different birds come and go, and it gave her something to take her mind off how she was feeling. I’ll cherish those memories of the two of us watching the birds together.

Mum loved to be pampered and she especially loved it when the complementary therapists would come and give her reflexology in her room. It always relaxed her and it also helped with her breathing. She loved the reflexology so much that each day she would be watching the corridor and waiting for the therapist to arrive!

Another lovely memory I have is of when my son graduated from medical school and we celebrated at the hospice with champagne. Mum couldn’t drink anything, but she was able to taste the champagne on a sponge. That was just three days before she died; we were still making special memories.

We liked to spend time in the café where we could have lunch and take a break. The staff even put sandwiches aside for us in the Family Room, so that we could have those at night. In a normal situation, this may seem like just a small thing, but for us, it meant the difference between driving around Chesterfield late at night trying to find food and spending precious time with mum.

I felt so welcome at the hospice. The staff even looked out for me arriving each day to say good morning to me. If they were making any changes to mum’s medication, they’d always try to find me or another family member to talk it though with them first, so we always knew what was going on. I felt very involved in everything and I really value that.

Mum was able to maintain her dignity right up to the end. I would go and spend time in the Family Room whenever the nurses took her to the toilet or gave her a wash. That was just nicer for her.
I can't fault the care at all. The staff would always check on me as well as mum because they knew I was staying up in Chesterfield on my own. I live down South, so my immediate family were really far away. But the staff helped me to feel less alone and made things less scary. When my sons came up, and when my daughter came from Australia, we were able to use the Family Bedroom here. This meant that we could all spend more time making memories with mum in her final days. It made a huge difference to us.

Thanks to the staff at the hospice, mum was able to pass away peacefully on Easter Sunday, 21st April 2019, holding my hand and her sister’s hand whilst the other family members were close by. We had such great support during those last few days and, for the following weeks, the counselling service checked on me to see how I was coping.

Now, if other family members were in my mum's position, I wouldn’t think twice about them coming to a hospice. In fact, I’d tell people not to worry because having the hospice’s support took so much pressure off me and off our family. It was the worst thing I’ve ever been through, but Ashgate made it so much easier and helped me not to feel alone.

It was all the little things that changed my mind about hospice care. It’s not just a place where people come to die, as I had thought, it’s a place where people carry on living until that time comes. Mum was still laughing and joking right up until the end. The happy times didn't stop when mum came through the hospice doors.”

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Claire’s Story

“All I wanted was for mum to die knowing that she’d met her granddaughter which was her biggest wish and Ashgate Hospicecare enabled us to do that.”

“When my mum became ill with lung cancer in July 2016, it was a really stressful time for me. Only weeks after mum told me that she was terminal, I found out I was pregnant with my second child and had another little girl to look after who had only just turned two years old at the time. This meant that I couldn't care for mum myself, even though I had always promised her I would. My brother was caring for her at home, but he wasn’t very well either. This meant that I was constantly worried about mum and felt guilty that she wasn’t getting the care she deserved. It broke my heart to see this and I felt completely hopeless."

Part One

"Mum began to be seen at home each week by an Ashgate Hospicecare Support Worker, and she loved her visits. More than anything, mum really needed someone to talk to and share her worries with. They spoke about everything and I think, for those three hours that the Support Worker came out, mum was able to forget that she was dying.

In January 2017, my brother had to go into hospital and, although he didn't end up staying there, it was decided that mum should come and live with me for a couple of weeks. Mum’s illness was progressing and she also caught a chest infection so it was getting really difficult to care for her. I was worried that we weren’t giving mum the care she needed. We spoke to her GP again and, fortunately, she was able to come onto the ward at the hospice.

As soon as mum came onto the ward, I could see that the care was excellent and I knew I wouldn’t need to worry about her so long as she was here. I can’t overstate how much of a relief this was for me. Knowing that mum was getting excellent care 24 hours a day was absolutely invaluable, especially as I was heavily pregnant by this time.

The plan was always for mum to be on the ward for a couple of weeks just to build her strength back up and then she would go back home. In the end, however, she never left. Every time the doctors and nurses got her well enough to leave, she suddenly went downhill again.

Nonetheless, the hospice staff and volunteers were amazing. They made mum feel good about herself and she was always treated as an individual, with her needs taken into account. She was always listened to. Her needs were always met no matter what time of day or night it was.

At the hospice, mum was able to have a proper bath, which was a big deal for her. You can't put a price on care like that and I don't know anywhere else that would be able to do that for her.

Every time I came into the hospice, the staff and the volunteers were always happy to see me and it made me feel really welcome there. It made dying feel normal, rather than something to be feared or apprehensive about. The staff always had time for me and always asked if I was okay. They watched me grow through the last trimester of my pregnancy and they were always asking about the baby.

If I needed to know how mum was doing, I could ring the hospice anytime and they’d let me know. Mum and I could both trust the doctors and nurses and we got to know the staff well whilst we were there, which meant that we felt comfortable speaking with them about everything. I'll always remember the way the staff and volunteers treated me and supported me through such a difficult time, as well as what they did for my mum.

We could all see that mum was desperately holding out to meet her second granddaughter. It was the only thing keeping her going. It was a Wednesday morning on 4th May 2017, and the hospice called me to say that they were struggling to wake my mum up and that she wasn't being responsive. We all rushed to the hospice to be with her, but I had started having painful contractions so before long I had to go to the hospital.

All I kept thinking throughout all of this was that I needed to get back to the hospice as soon as possible so that mum could meet the baby. It was a stressful birth and the baby was tiny; only five pounds and five ounces, so the nurses wanted to keep us in hospital. I explained to them that my mum was dying at the hospice and asked if I could leave for a few hours. They said they would discharge me and the baby for an hour or two on the proviso that I came straight back.

When I went into mum’s room, I could see that she didn’t have long left. I placed the baby in her arms and the look on her face was as if to say, now the baby's here, that's me done. But she held her granddaughter for about 10 or 15 minutes and that was perfect for me. She couldn't hold her properly, so I put the baby in her lap and she stroked her face with her finger. She placed her hand onto the baby’s chest and, even if I do it now, it still settles her. It’s like grandma’s special touch.

Mum told me that she loved me and I told her that I loved her. We were both really upset to say goodbye to each other. Mum died on the Friday 6th May 2017, just days after her granddaughter was born. All I wanted was for mum to die knowing that she’d met her granddaughter which was her biggest wish and the hospice enabled us to do that.

I will always be eternally grateful for the care mum received. There isn't a word that's been thought of yet to express how grateful I am! It just took so much weight off me knowing that she was being so well cared for. Everybody needs to realise that Ashgate Hospicecare is a place you can come to, no matter who you are or what kind of situation you’re facing and it’s a place where you’ll be welcomed.”

Part Two

“I wasn't dealing very well with mum’s death. It's hard losing somebody you love, but when you've just given birth you go from an immense high to the worst low, it's an emotional rollercoaster. I had no idea how to deal with it because I felt guilty for feeling elated about the birth and I’d also just lost someone who meant the world to me. It was very confusing emotionally and I think to an extent it stopped me bonding with my daughter as I should have done. I couldn't feel that pure love for her because my heart was broken by the death of my mum.

I felt empty and broken and I just didn't know what to do. I couldn't focus on anything. Nothing made sense. I didn't want to go on antidepressants and rely on medication as I wanted to be present and feel like me for my two girls. I felt completely on my own.

I ended up ringing mum’s Palliative Care Nurse at Ashgate Hospicecare, as I was totally lost and I knew she’d be able to point me in the right direction. She referred me to the Supportive Care Team at the hospice and before long a Social Worker called Julie came out to see me.

Luckily, I’d already met Julie a few times whilst my mum was ill, so when she came round it just felt normal and natural. She knew about me and she knew everything I’d been through, so I didn’t have to explain myself at such a hard time. Just knowing I was important to somebody was all I needed. When everything felt like it was against me, she helped me to feel like I mattered.

I had finished the sessions with Julie when, ten months to the day that my mum died at the hospice, my brother died suddenly. I had no idea what to do. I felt totally lost again as it was such a shock. I phoned Julie up again and, because we’d built up such a great relationship and she knew how difficult things were for me, she told me straight away that she could help. I was so relieved that she was able to support me through my brother’s death because I felt completely lost again after receiving the news and Julie really understood my situation.

Even though I received bereavement support from Ashgate Hospicecare after my mum died, they didn’t just forget about me. You can’t put a time limit on grief. Even now, I don’t feel like I’ve grieved for my mum properly as there’s been so much else going on, but I know I still have Julie to call if I feel like it’s all getting too much for me.

I didn't think I was strong to go through all of this by myself, but, with the support of Ashgate Hospicecare and having my children to think about and with the stubbornness I’ve inherited from my mum, I’ve managed it. I’m eternally grateful to the hospice for looking after my mum so well and for all they’ve done for me, but I know that there will be other people who will need those services just as much or even more than me. It’s vitally important that as a community we do what we can to support Ashgate Hospicecare so that they can continue to provide bereavement support to everyone who needs it.”

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Sanjoy’s Story

"My mum was so well cared-for and loved in her final months thanks to Ashgate Hospicecare.”

"My mum was diagnosed with breast cancer in 2016 and received the all-clear after treatment. But in June 2018, we heard that the cancer had, sadly, returned and she was given just six more months to live."

"Support from Ashgate Hospicecare came in seamlessly after her diagnosis and mum began attending the Day Hospice every Friday where she saw doctors, nurses and physiotherapists, as well as socialised with other people in a similar situation to her. I had never been to a Day Hospice before, so, driving up from London where I work to visit her there, I wasn’t quite sure what to expect. I was worried it was either going to be depressing or one of those places where everyone gets forced to participate in ‘fun’ activities whether they liked it or not.

But it wasn’t like that at all. There were so many things to do, from complementary therapies like massages to talking to chaplains or just taking a break from being at home and having tea and biscuits brought to you. With me working far away, I often worried about mum being at home by herself, so when she came into the Day Hospice, I didn’t need to worry as I knew she was being well looked after.

It wasn’t just mum who received support from the hospice, they also supported me, both practically and emotionally. The staff helped me to deal with the situation and took away a lot of the fear for me. I can’t imagine how I would have coped without them.

The doctors at the Day Hospice monitored mum’s condition weekly and supported her by adjusting her medication. Meanwhile, the occupational therapists helped make living at home easier for mum by ensuring she had access to items such as a special mattress. One day, the doctor saw my mum was looking worse when she came to the Day Hospice and immediately admitted her to the ward where she stayed for over a week in order to stabilise her condition.

Towards the end, a community nurse from the hospice came to visit mum at home and, realising that her condition had deteriorated, ensured she was admitted to hospital for emergency treatment, after which she began her final stay on the ward at the hospice. It was such a relief to know that the hospice nurses were keeping such a close eye on mum. They would always take the time to assess her properly and intervene when they could see that she had declined in order to keep her as comfortable and dignified as possible. Being so far away in London, it was difficult for me to always be there for mum at these crucial times and I certainly wouldn’t have been able to get her to hospital when she needed to go. That’s why having the ongoing support of the hospice meant so much to me.

Before my mum’s diagnosis, I didn’t fully understand what hospices did. I assumed that they were just places where people went in their final weeks of life. What I discovered was that they are warm and positive places where people eventually end their lives as comfortably as possible. Most importantly, my mum was rarely alone. So many friends and family whom we’d lost contact with got back in touch and they were able to visit mum any time at the hospice in a relaxed and friendly atmosphere. My mum was so well cared-for and loved in her final months thanks to Ashgate Hospicecare.”

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Sharon’s Story

“Ashgate Hospicecare made my mum’s last weeks as good as they could be and gave me the opportunity to make amazing memories with her right to the end.”

“At the age of 70, my mum started having trouble breathing and was taken into hospital where she was diagnosed with Chronic Obstructive Pulmonary Disease (COPD). The doctor said that if we hadn’t taken her to hospital, she probably wouldn’t have survived the night."

"Mum acknowledged that she would eventually die from this debilitating disease, but chose to embrace life and fought on for a further three years. As a family, we felt blessed that we were able to spend quality time with mum for those remaining years. We’d spend many hours chatting and putting the world to right. We made a bucket list and spent many happy days ticking things off.

Sadly, those precious times became increasingly more difficult due to the oxygen that mum re-quired. Her health and quality of life deteriorated and, eventually, she became housebound.

We had a really difficult Christmas in 2017 because mum developed sepsis and pneumonia but decided that she didn’t want to spend Christmas time in hospital. She wanted to be at home with her family. Following this very worrying period mum recovered, but she decided that she didn’t want to spend her remaining time in hospital if she became seriously ill again. As a family we found that difficult, but we totally understood. It was her wish to stay at home.

Not only had mum got COPD, her spine was also getting weaker and so she was in a lot of pain with it until it was managed with the right pain relief. From February 2018, she started to decline more rapidly. I used to go to her house every day to help care for her and one day in March 2018, I went round to see that she was really suffering. It was heartbreaking to see.

The GP came round and thankfully administered some pain relief. She suggested that it might help if mum went onto the ward at Ashgate Hospicecare for a few days where specialist support could be provided and mum’s pain could be monitored and managed. Mum was worried that she was going to die there, but the GP explained that if she didn’t want to be there, she could come home after a few days.

Mum was unsure, but we told her that the most important thing was that she was pain free, so she decided to do it. She asked me if I could stay with her for the whole time whilst she was there. I told her I’d be with her every step of the journey and, if I was able to, I would stay overnight as well.

When the ambulance arrived, she was anxious and overwhelmed by it all. However, I told her that I’d be right by her side. When my dad and I walked through the doors to the hospice, we felt a huge pressure lift. We were relieved that someone else would be taking care of mum’s medical needs so that we could give her the emotional support she needed. As soon as we arrived I asked the staff if it would be possible to stay with mum and, when they said I could stay as much as I wanted, all the stress on mum’s face disappeared.

I stayed with mum every single night whilst she was in the hospice. We were totally overwhelmed by everybody’s kindness and care – not just from the medical professionals but all the staff, the volunteers and even the housekeepers who came in to clean the rooms. Mum would always apologise to everyone for being a ‘nuisance’, but they all said, ‘Not at all, that’s what we’re here for.’ It made her feel much better.

Mum loved the food she was served, especially the treacle sponge and custard pudding. The volunteers got to know that too, so they’d say, ‘Guess what’s on the menu today, Joan?’ As mum got more poorly and distressed the volunteers even offered to bring me my lunch as they knew mum didn’t want me to leave her side. I told them they didn’t have to, but they insisted. All of that sup-port really meant a lot to me.

I was able to do much of the day to day care of mum, because she preferred it that way. But the staff would keep popping in to ask if we were okay. At one point, one of the nurses noticed that I wasn’t feeling great and so she took me into a side room and gave me a hug. She said that the hospice could offer me counselling if I wanted it. It was really nice to think that they were concerned about my well-being as well as mum’s.

When mum was at home, I used to come over and wash and blow dry her hair every other day, which she loved, but due to her illness she hadn’t been able to have a bath for years. She’d always say how much she missed a nice bubble bath. Whilst walking down the corridor at the hospice, I noticed that they had an amazing bathroom with a huge bath in the middle. I asked if I could give mum a bath and the nursing staff said, ‘Of course!’ and went to fetch some oxygen. Mum was so excited. She had all the bubbles, the mood lighting and the music. She loved it! From then on, every other day, I would give her a bath at the hospice.

Mum was able to have as many visitors as she wanted and the staff never complained. In fact, it was me telling people to go home because mum needed to sleep! We were also able to celebrate my 50th birthday with family and friends at the hospice. I’ll always look back on that day with fond memories and such gratitude that I was able to spend the day with the people I love. Mum couldn’t stop smiling all day!

With mum on the ward, it gave us the time to have long talks and grieve together. On her bucket list was to watch Watership Down because that was the first film she took me and my brother to see at the cinema. I managed to find the DVD and we watched it together in her room with cinema snacks and everything! That time, our cinema night, is a memory I’ll treasure forever.

We spoke about everything. We listened to loads of records together, chose the songs mum want-ed at her funeral and what she wanted people to wear. We chose some gifts for each member of the family and a photograph to go with each one, so that mum could leave a really special, personal gift to everyone.

The care from everybody at the hospice was amazing and, for a few weeks, mum seemed to get a little bit better and there were discussions about putting a plan in place for her to go home. However, she took another down turn and her pain returned so the decision was made to keep her on the ward a bit longer to manage the pain.

Mum started to decline further and, although she became quite distressed in her last few days, the staff did all they could to help her to be as calm as possible. We phoned the family to let them know that mum was close to the end so they could come and see her. When we were all in her room, we were recalling all the fun things that mum had done in her past and you could see that she was responding at times as we’d try to bring her into the conversation. We were all laughing together and it was lovely.

Mum died peacefully on the evening of 28th April 2018 with all of us surrounding her. One of the nurses told us that we could spend as much time with her as we wanted. Then the staff asked us to wait outside and made us a drink.

It brought a tear to my eye when I went back into her room to say goodbye. They’d moved all of mum’s personal things – photographs, flowers and Mother’s Day presents – closer to her. When I walked in mum looked beautiful and at peace.

We’d developed a lovely relationship with everyone at Ashgate Hospicecare. At mum’s funeral we asked for donations to the hospice and raised an incredible £500. We chose to bring the money in ourselves as well as a CD player and some tranquil CDs which we thought might help other families through difficult times as music had brought us great comfort. We were nervous to come in again, but when we arrived we were overwhelmed by everybody’s kindness and empathy when they heard mum had died. Everybody gave us a hug and said they were really sorry to hear that mum had died and that she was a lovely lady – we couldn’t have wished for anything more!

Ashgate Hospicecare was my home for over four weeks and it genuinely felt like we were all one big family. There aren’t enough words to say how thankful we are as a family for not just the care that my mum was given, but for the care they showed us too. We knew mum was going to die, but we were all very worried about how we were going to manage that. Ashgate Hospicecare made my mum’s last weeks as good as they could be and gave me the opportunity to make amazing memories with her right to the end.”

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Lyndsey’s Story

“Ashgate Hospicecare made something awful and heartbreaking that little bit easier with their kindness and compassion shown to my grandad and all our family.”

"Our story began on the 4th November 2015. I had to take my grandad to the doctors about his blood test results. They sent us straight up to the hospital as his haemoglobin levels were dangerously low and he needed an immediate blood transfusion."

"Two days later, after further investigations, grandad came home with a diagnosis of bowel cancer and had been given 12 months to live. We were all distraught, but hopeful, as he was a strong man and we knew that he would put up a good fight. Grandad always lived life to the full and loved all his family with all his heart, especially his great grandkids. He wasn't ready to go anywhere yet!

Two weeks after grandad returned home from the hospital, he took ill overnight and had to go back into hospital where he spent a further two weeks.

Grandad never complained about anything, not once. However, we could see he was in pain and was struggling. Grandad was referred from the hospital to the ward at Ashgate Hospicecare, so they could try to get his pain under control. Grandad’s wish was to return home again and the staff said they would do what they could to make this possible. This was an eye-opener for me as I had always thought that the hospice was just a place where people went to die.

When we first came into the hospice, I was surprised at how relaxed it was. We were able to visit grandad every day and spend as much time with him as we liked. The staff made our whole family feel very welcome. My daughter was able to visit her great grandad anytime, which was really important for her as they were really close. She spent a lot of time with him and even celebrated her seventh birthday here with him.

The staff always had time for grandad and if he asked for anything, which he rarely did, he would be listened to. Nothing was too much trouble.

When we thought his pain was under control, the staff at the hospice helped to get him home to my dad's house. The Occupational Therapy team made sure that everything was set up for grandad to stay at my dad’s house comfortably. They even made sure there was jelly and ice cream in the house, as grandad had really enjoyed eating that at the hospice!

Grandad was home for two nights, but he was in too much pain and couldn’t get settled, so he went back into the hospice. We were hoping that we could get him feeling well enough to go home again, as we knew that’s where he wanted to be.

The team at Ashgate Hospicecare helped to get his pain back under reasonable control. Christmas was approaching and grandad was getting weaker, so we asked if we could throw a little party for him on Christmas Day. The staff said yes, of course! My nana was with him throughout Christmas Eve and, on Christmas Day, they ate a lovely homemade Christmas dinner together at the hospice.

We all arrived on Boxing Day and put on a small buffet in the family room. Grandad put all his effort into that day; singing and dancing along with the kids! I’ll remember it forever, as will everybody else in the family. It was a really special day and grandad had a great time.

After that, he started to decline. He was moved from one of the bays into a private room and we could all be there with him. We wanted to spend as much time as possible with grandad in his last few days and we really didn’t want to leave him. They gave us the relatives room so that my nana could stay every night and my sister and my mum took it turns to sleep there too. Mum, dad and I slept in the same room as grandad, on camp beds and recliners that the hospice provided. The staff were brilliant and they even brought us breakfast in the mornings! I couldn’t fault the care at all.

Grandad only woke up once after going in that room, but he kept going until the 30th of December. During his last moments, my sister said, ‘Goodnight, God bless’ to him, as he always used to say this to us. Then he went to the angels, surrounded by all of us.

We could never have imagined how awful something like this could be, but the hospice made something awful and heartbreaking that little bit easier with their kindness and compassion shown to my grandad and all our family. We will never forget what Ashgate Hospicecare did for him and we met some lovely people along the way. I will be forever grateful!”

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Liz and Chris’s Story

“Knowing that we could phone Ashgate seven days a week and ask for support was like having a safety net beneath us.”

"My dad was diagnosed with skin cancer in January 2016, and we were told he had two years to live. It all started when my mum noticed that the mole on his back that he'd had for years had started to get bigger. She kept telling him to go to the doctors and he kept saying he’d go but kept putting it off. The mole kept on growing and changing shape."

"When he was finally seen, he was referred to the hospital where he had a scan. The scan revealed that he had cancer in the skin near his kidney and there were another two growths underneath his skin. They cut the piece of skin out and tested it and found he'd got cancerous cells all the way up to the margins of the piece of skin. He was referred to an oncologist and then had six weeks of radiotherapy on the area around where they’d taken the skin.

After the radiotherapy, he went back for another scan, hoping for the all clear. However, they found more cancerous cells in his skin right at the edge of where they did the radiotherapy. So, they cut some more skin. Again, when he was tested they found more cancer cells. It went on like this for several months until they found that the cancer had spread to his lymph nodes in his right armpit. By this time, he had oncology, plastic surgery and dermatology involved and my mum and dad had one appointment after another. It took over their lives. It got to the point where we asked whether my dad needed all of this or whether it was more important for him just to get some rest.

A scan then showed that the cancer had spread to his brain and they told us there was nothing else they could do to try and make him better. We went home and tried to settle ourselves; we tried to get our heads around the fact that losing dad would come sooner than we thought. We were in shock because that wasn't how this was meant to go. We thought we had more time to enjoy with him and more time to say goodbye.

A referral was put through to Ashgate Hospicecare around April 2017 and my dad started to be seen regularly at home by Sharon, a specialist nurse. When she first came to see him, his attitude was, “I don't know what you're doing here, I'm not dying”. And Sharon said, “The hospice isn’t just for people who are dying, the hospice is for those who need support. That's why you’ve been referred to us. I can come out to your home anytime you need me, whether that’s once a week or once a month, and I can give you and your family whatever support you need. You don't have to come into the hospice if you don’t want to.” He was scared of the hospice and didn’t like to talk about it, so Sharon said that if he ever did want to come and look around, just to see it, she could arrange it. We hoped he’d eventually say yes and then it might dispel some of his fears about it.

It was great to have Sharon as a point of contact for both me and mum and we felt very well supported having her there to ask any questions to. Gradually, dad also became comfortable with her. He was able to build up a relationship with Sharon over the year or so that she was supporting him. He also had a Palliative Care Support Worker from the hospice who came to sit with him once a week so that my mum could have a break or nip out and do things she needed to do.

From the time he was given a terminal diagnosis, mum and I felt it was really important to try and talk to dad about where he wanted to be when he got more ill and what his wishes were for the kind of care he wanted to receive. We wanted to make sure that if anything happened, his wishes would be respected and he’d be in the place he felt most comfortable. It was hard because my dad really didn’t want to admit what was happening, let alone talk about it. However, having Sharon there to back us up and to facilitate some of those conversations gently and with understanding was really important. She had a rapport with him by that time so she could nudge the conversation in that direction without getting told off – unlike us! Sharon had a very good way of judging dad’s comfort zone, so she only spoke to him about things when she could see that he was ready.

He was still having treatment in hospital to reduce the cancer, which was tiring for both him and mum. He started having immunotherapy in June. I wanted the hospital to do as much as they could for him, but at times I just want them to leave him alone. The cancer was aggressive, and I wasn’t sure how much the treatment was going to help. Sharon understood that. She understood the balance between keeping dad going and making sure he had a good quality of life. It was nice having another medical person outside of the family to talk to him about that.

When Sharon visited, she helped him with his medication. She referred him to the occupational therapists at the hospice who came round to measure the house so they were ready to deliver whatever equipment he needed. They gave my mum a baby monitor, so she could hear if dad was making any noise in the night, which gave her peace of mind. Sharon told us that we could call the seven day a week Advice Line, which we had to do one Saturday. A specialist nurse even phoned us back on the Sunday to check everything was ok, which was a really nice surprise. Knowing that we could phone Ashgate seven days a week and ask for support was like having a safety net beneath us.

Sharon was good at liaising with the different services. So, instead of us getting stressed because we needed to phone dad’s doctors at the different hospitals and his GP when his condition changed or when he needed more medication, Sharon could sort it out and that took a real weight off our shoulders.

Sharon had been able to convince dad to try the Day Hospice, which he really liked, although I don’t think he wanted to admit it! This meant that, not long before he died, he said he preferred to die at home but wouldn’t mind going into the hospice if that was the only option. All the times Sharon had seen him and spoken to him had really helped him come to terms with what was happening and had helped him to warm him up to the hospice. In the end, fortunately, he was able to stay at home right to the end.

I’m a nurse and there were times at home when I could see dad struggling and all I wanted to do was give him the dose of medicine I knew he needed. I explained my frustrations to Sharon and she authorised me to give dad a specific amount of pain relief if he needed it, but only if I felt OK to do so. That was great because instead of watching him in pain when we were waiting for the district nurses to arrive, I could give him some pain relief.

Dad died on the morning of Sunday 8th April 2018. We wanted what everybody else wants; for my dad to have a peaceful death and to not be in pain. Thanks to Ashgate Hospicecare, dad had as ‘good’ a death as he could have and we’re really grateful for that.

After dad died, we got a call from Sharon asking how we were doing and if we needed any more support. My mum and my eldest daughter were already seeing counsellors at the hospice before dad died which carried on after his death. My mum has also been to group bereavement sessions and continues to meet with people from that group, which I think really helps. So, even though we’re no longer getting medical help from the hospice, we feel really well supported by them in terms of all the bereavement support we’ve had and been offered. We’re going to continue coming to the Ashgate Hospicecare events and supporting the hospice as much as we can."

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Lesley’s Story

“I went from somebody who didn’t even want to think about the word ‘hospice’, to someone who now wants to raise as much money as possible for Ashgate Hospicecare.”

“My husband, Glyn, was a fireman. However, he had a bike injury and suffered head trauma and then epilepsy, so he retired out of sickness aged 50 in 2015. That summer, we went to Florida with the kids, we went on a cruise and we had more big plans for Glyn’s retirement."

Part One

Just after Christmas that year, Glyn was in and out of the hospital with pain in his stomach. He was never one to complain, even when he had all the head trauma, so I knew it was bad. One day, he phoned me up from hospital and said, ‘Come in, I want to talk to you.’ I was worried about what he was going to say, but I had no idea what was to come. When I arrived he said, ‘I’ve got cancer.’ I just screamed, ‘ WHAT!?’ I couldn’t believe it.

When I told our daughter the news, she was distraught, but together we felt prepared to deal with it. We would do whatever we could to help Glyn – husband and father – get better and get through it.

After the results came back from Glyn’s tests, the doctor sat us down and said that Glyn had pancreatic and liver cancer. I didn’t know fully what that meant for Glyn, but I didn’t want to know. However, Glyn was very practical and wanted to know how bad is was. He asked the doctor how long he had left. That was not a question that I wanted to hear the answer to. The doctor said, ‘You’ve got months’. Hearing that and knowing that Glyn wasn’t going to get better turned my whole world upside down.

After that, I was a wreck. We’d been married 29 years and we were a very close family. We had a beautiful son and daughter who were in their twenties. Although Glyn was getting more ill, he acted fine about it. He didn’t want us to worry and so he was still making jokes and being silly all the time – being his usual self!

The first contact we had with Ashgate Hospicecare was in the hospital when a nurse came in to speak to us. As soon as I saw her, I panicked. I wasn’t ready to think about Glyn dying. I was distraught and so I asked her if she could come back to speak to us another day.

When a nurse came over the second time, she explained that Ashgate Hospicecare is not only a place where people die, she told us that patients can go to receive specialist care and there’s a Day Hospice too. Both of these options would help Glyn to manage the pain. They made us feel a lot better about the hospice, but I was still scared about losing Glyn.

We managed to keep Glyn at home for a while, but he was in and out of hospital. By the middle of February, his belly had blown up with fluid and he was in more pain. We rang the hospital and they said they’d have a chat with Ashgate Hospicecare to see if he could go onto their ward and drain some of the fluid. They had a free bed, so they told us to bring Glyn down. Although I was still nervous about going inside the hospice, the staff were always positive and did everything they could to help Glyn. They made us feel really welcome.

The hospice nurses helped us to start those difficult conversations about where Glyn wanted to be as he got more ill and when he dies. They eased us into these conversations so it didn’t seem as scary. I spoke to Glyn about having him at home so that I could take care of him, but he didn’t think it was fair on me. After initially being quite scared of the hospice, we’d started to warm up to the idea of Glyn being there at the end of his life. I just wanted what was best for him.

They managed to drain fluid from Glyn’s belly in the hospice and a few days later he was able to come home. However, he was still having stomach pain, so we tried to see if we could get him back into the hospice. Before long, they called back saying there was a bed free. We brought Glyn in and once he’d settled in, he told me I should go home and get some sleep as I was exhausted. I went home, but a few hours later, I got a phone call from one of the nurses on the ward telling me that Glyn really wasn’t very well and that I needed to come back in so I rushed back to the hospice to see him.

It was clear that things had changed and Glyn was now struggling a lot. He was in a bay, but the staff told us that as soon as a private room became available, they’d move him. It was so much better for us once they moved him to his own room.

On the Friday morning, Glyn kept drifting in and out of sleep. He seemed to change quite suddenly and we knew he didn’t have long left. From then on, I didn’t leave Glyn’s side. With Glyn now in his own room, the nurses put up a bed right next to him so that I could stay with him. I sat and held his hand and we mostly just watched telly together. I would still talk to him, even though he was asleep for most of the time.

I rang up the minister from our old church to let him know that Glyn was dying and he asked if he could come up to the hospice and pray for Glyn. Glyn was a bit distressed by that time, but when the minister came to pray with him, Glyn suddenly calmed down. It was incredible how calm he looked and it was lovely to see. I thought it was really nice that we were able to do that at the hospice.

By the Sunday, Glyn was getting worse. So, I called the family and they all came up to the Hospice. There were about 12 of us there altogether, but the staff didn’t mind at all and we were all made to feel welcome. Some of them had come from quite far away, so the staff said we could use the relative’s bedroom to stay in, which had its own shower. This meant that we could all spend precious time with Glyn in those last few days and hours.

Whilst everyone was there with Glyn, I took a walk down to the Family Room. As I was walking down the corridor, I could smell chicken and could hear people giggling. I thought, Glyn is here dying and I can hear giggling, what on Earth is going on?!

When I got to the Family Room, my daughter, my son, my son-in-law, and my god-daughter were there playing games and eating food. It was actually really nice to hear them laughing. Just because we were in the hospice, we didn’t feel like we had to be miserable the whole time. The Family Room gave us the much-needed space to have a break and relax after spending time with Glyn.

The nurses were lovely to us during Glyn’s final days. They kept coming to talk to us and they would come and sit with me and chat to Glyn, even though he was sleeping most of the time. We could see he was struggling, but they gave him as much pain medication as they could.

I said to him, ‘You can go, if you want to go’ and he was rubbing my hand the whole time. But it felt like he was waiting for something and we couldn't figure what it was. The kids said, ‘Mum, you know on Monday it’ll be 29th February. He'll wait for the leap year day!’ Glyn was such a joker and I knew he would do that!

By the Sunday night the 28th February 2016, I could feel that he was going to go. I told the family to leave him and go and have some kip. His mum and dad went to the relative’s bedroom to have a sleep and my son went too. It was just me and my daughter there with Glyn. We waited, and at twenty past twelve on the leap year Monday, he died.

It was such an awful experience finding out my beloved husband and best friend only had a few months left to live, but I’m glad that he was able to be cared for by Ashgate Hospicecare. It was a really horrible and scary time, but the staff did all they could to make us feel better and to make Glyn’s death dignified.

I went from somebody who didn’t even want to think about the word ‘hospice’, to someone who now wants to raise as much money as possible for Ashgate Hospicecare because they made those last few months of Glyn’s life so much better for the both of us.”

Part Two

“I found out my husband, Glyn, had pancreatic and liver cancer in early 2016 and had only a few months to live. We received help from the Hospice and then, on the leap year day in February 2016, he died on the ward. Myself, our children and the rest of our family were really well supported throughout this time and could spend as much time with Glyn as we wanted. I went from being someone who was very scared of the word ‘hospice’ to experiencing first-hand the care and dedication of all the staff at Ashgate Hospicecare.

Glyn was a fireman and after he retired he became a school governor at a local primary school. He was very well loved by everybody in the community - there were nearly 500 people at his funeral! We had the full fire service send off and collected donations for the Hospice.

Everybody wanted to help me sort things out and do everything for me after Glyn died; from organising Glyn’s funeral to all the paperwork. I was really grateful for all this help, but I was left thinking, what do I do now? I was grieving for the loss of my husband of 29 years and best friend and I had nothing to keep me busy.

After a few weeks, I had a call from a counsellor at the Ashgate Hospicecare asking if I wanted bereavement support and, feeling as lost as I was, I said yes, hoping she could help me. When we first met, I told her how I was feeling and explained my situation. She was excellent. She listened to everything I was saying, and she really understood and helped me to process what I was going through.

I wasn’t working, but I had a been doing a voluntary role for about three years setting up a library in the primary school where Glyn was a governor. After he died, I went back, but it didn’t feel right. People didn’t really know how to talk to me about his death. By April, a few months after Glyn died, I decided I couldn’t stay there any longer and left.

At the same time, I was thinking back to how lovely all the staff at the Ashgate Hospicecare were when Glyn was ill, and I was wondering how I could possibly pay back their kindness and care. We took a lot of donations at the funeral and so I decided to set myself the goal of raising the amount it had cost for Glyn to receive care at the hospice.

In July 2017, we did the Sparkle Night Walk for the first time in Glyn’s memory. We had a huge team – 45 of us! – and we had t-shirts made with our team name ‘Wookie’ on, because that was Glyn’s nickname at the fire station. We also had Wookie balloons made so we could find each other on the walk!

A few months before Sparkle, I was asked to go on a school trip and whilst I was there I badly broke my foot. When it came to July, it still wasn’t right and so I couldn’t actually do the walk, which was a shame. My son did it, so he drove me down anyway and I had my Wookie t-shirt on. I wanted to go to the event no matter what, so I planned to just sit in the car and wait for them to finish. I had my crutches with me and before I knew it I was up and asking the volunteers if I could help to hand out the medals. I got chatting to some of them and said that I’d really like to start volunteering for the Hospice.

By the end of July, we handed in a cheque to Ashgate Hospicecare and we’d raised a total of £6,500! That was all the money from the funeral, from Sparkle, from funds raised by the school and from a dancing group, then I doubled it. Once I knew the total, I thought, let’s get to £10,000!

Around Christmas time I dedicated a light to Glyn at Light up a Life and came to the switch on event
Glyn's Tribute Fund was getting close to £10,000, but I wanted to carry on even after I’d reached my target! I got the primary school involved in doing a Mini Sparkle Walk and the Fundraising Team supported me to do that.

I’ve had so much love and positivity from all the Ashgate Hospicecare Staff. I've never felt so part of something. Even though I’ve been through a really awful experience, I’ve been sent in a new and positive direction as a fundraising volunteer and the Hospice has become my new family. I’ve discovered a passion and talent for fundraising that I didn’t know I had. Now Glyn’s Tribute Fund is close to £15,000 and I couldn’t be more proud!”

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Steven’s Story

"We got two chairs in front of the mirror in his room and he sat there and taught me how to shave. It was so special to me that we were able to do that at the hospice."

"My dad was a very strong, fit man who was a Police Inspector for Chesterfield. He was diagnosed with cancer for the first time at age 43 – bowel cancer – and went through treatment to remove it. But then at 48, unfortunately, he was diagnosed with liver cancer."

"It was 1994 and I was only 14 years old at the time. I was living at home with mum and dad, and both my sisters had moved out as they’re a bit older than me. One of them was due to get married a few months later and, unfortunately, I ended up giving her away in my dad's place. Dad knew that I would be giving my sister away and we spoke about how I would do it. He gave me his tie to wear for it and everything. It was good that we were able to speak about what was happening, but it was a very difficult time for us all.

With liver cancer, it’s quite common to have severe itching, which is what dad started to get. We’d spoken about where he wanted to be cared for and he told us he wanted to stay at home as long as possible, but he didn’t want to die at home as he knew my mum would struggle to live in the house afterwards. However, as time went on we were finding it more and more difficult to control the itching at home, and so he was offered a bed at Ashgate Hospicecare for symptom management.

The first time I came to visit him was my first experience of a hospice. I remember that we were always greeted with a smile and the staff would always ask us how we were. It felt a bit strange at the time that the staff weren’t solely focused on my dad, but it was really nice that they cared for us too and helped me to feel better about everything that was going on. I remember one of the nurses talking to me about school and talking to my sister about her job. They made things feel normal for us.

All my family felt welcome on the ward at any time. Not having any visiting times made it a really positive experience as we were able to spend lots of family time together which we remember fondly. The team who looked after dad were just phenomenal. They were so helpful and kind.

Once the nurses had managed to control the itching and other symptoms, the staff made sure everything was ready for dad to go back home, like making sure the correct equipment was delivered to the house and so on. They linked with community nurses from different organisations for night sitting, which gave me and mum the respite we needed to be able to care for dad for longer at home. I only realise now that some of the nurses who cared for dad at home weren’t from the hospice because the communication between the different organisations was so good.

As dad started to reach the end of his life, he came back into the hospice and this time he was given his own room. That made a huge difference. I used to come straight from school to the hospice on my own and the staff didn't bat an eyelid, they just welcomed me in and were really supportive. I never felt like an inconvenience and I was never treated like a child. When I would walk into his room, it felt like his own room. It didn't feel medical at all.

One of my fondest memories was when dad realised he’d never taught me to shave. So, we got two chairs in front of the mirror in his room and he sat there and taught me how to shave. It was so special to me that we were able to do that at the hospice.

I also remember talking with dad about my GCSE choices as I was trying to decide what I wanted to do when I grew up. I’m a nurse now and both of my sisters went into healthcare – one as a healthcare assistant and one as an occupational therapist. We've all said we feel that is a result of the amazing care we experienced at Ashgate Hospicecare. The whole team were fantastic, so I knew I wanted to go down that route.

As well as being a qualified nurse I’m also a senior lecturer at the University of Derby at the Chesterfield campus. We’ve got a good relationship with Ashgate Hospicecare so the student nurses I teach often do their placement at the hospice and they come back and tell us all about it, which is lovely to hear. We’ve taught them how important palliative and end of life care is in nursing. I feel that through my role, I’m able to give back some of the care we received. That’s been my motivation the whole way through.

Whilst dad was on the ward, we were so preoccupied with making sure he was comfortable, pain free and happy and so we didn’t actually realise how fantastic all the care was that we were given as a family. We were here all the time and the team really looked after all of us, not just my dad. That’s why Ashgate Hospicecare is so special to us. Whilst it was a very difficult time for us all, we felt listened to, involved and valued. The staff were so kind and compassionate; it was just phenomenal in terms of all the care that was given.

Dad died on the ward, where he wanted to be, on the 22nd June 1994. Since then, we’ve all done our bit to raise money for the hospice. This year is the 25th anniversary of my dad’s death and so I’ve decided to walk the Markovitz Sparkle Night Walk in his memory. This will be my first time doing the walk and I’m very excited! It’s a special year for me and my family but we don’t want to be sad, we want to commemorate dad’s life in a positive way. We’re all doing our own little thing this year to remember him.

Not only is it the first time I will be walking, it’s also the first time my friends will be walking and they’re doing it in memory of somebody they know. So we’re really looking forward to the night and the atmosphere. My sisters and my mum will be cheering me on!

I’m also looking forward to seeing who everybody is walking for – seeing the names and photos on the back of everybody’s T-shirts, talking to people on the night and hearing their stories. Sadly, hospice care touches so many of us and so everybody walking will have a different story and be walking for different reasons. It’s nice that we can all do something so positive together.”

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