"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.”
“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!”
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."
“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."
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.”
“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!”
"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.”
“Everyone is treated as a person and their wishes are taken into account.”
My mum died on 1st November 1962, leaving myself, who was seven years old at the time, my brother, who was ten, my dad, and my grandad. We’d lost my grandma a few months earlier.
In 1962, there were no hospices. Mum was taken to hospital to die and, because we were children, neither myself nor my brother were allowed to visit her. The most upsetting thing is that, at that time, anyone close to death was moved to the bed nearest the door. I was told this harrowing fact by my cousin who was old enough to visit at the time and it has stuck with me ever since.
There was no after care for our family either; no bereavement support. The result is that mum was never talked about. As a small girl, I was scared to ask any questions about her and I can only assume our dad didn't talk about her in case he upset us, or because he was trying to protect himself and not let his emotions show. He died twelve years later when I was 19.
I remember as a teenager asking what mum died of. It was a quick answer: cancer. The conversation stopped at that. I was only left with about seven clear memories of her and I've written them down so I don’t forget them. It’s only been in the last few years that my cousin has told me snippets of what she remembers about her. Even though this answers some of my questions, it still leaves a loss that has affected me all my life.
For all these years, I’ve wanted to know why I was never allowed to see my mum when she was dying. The rules were simply: no children allowed. It hurts that my cousin was allowed to see my mum, just because she was older than us and that’s something that’s going to stay with me forever. Thankfully now things are different.
My mother-in-law died on the same day as my mum, 33 years later in 1995. She was about to go into Ashgate Hospicecare but she died more quickly than expected. The difference this time was that she wasn’t placed in a bed near the door. She was put into a private room in hospital and her family could visit anytime they liked. That was a blessing for us.
Then I lost a lifelong friend in at Ashgate on 26th December 2017. We were friends since school and lived a few doors down from each other; she was the sister I never had. Sue died only three months after receiving her diagnosis, so it was a great shock to all of us.
Seeing the care that Sue received at the Hospice and comparing it to the care my mother had, I can say that the differences between them, 55 years apart, are vast. Sue was in a private room, and as many people who wanted to visit her could go at any time. Sue was able to talk to a minister during her time here, which I know really helped. Sue wasn’t able to eat or drink much, but if any of the patients wanted an alcoholic drink, they could have one. Sue’s dog was able to visit, and her young nephews and nieces. I went into the Hospice every day to see her. I knew she hadn't got long, so I wanted to make the most of the time she had left. One of the nurses on the ward even came over and comforted me when they could see it was all getting too much for me to bare. They were absolutely fantastic, and I can’t thank them enough for how they were with Sue.
In 1962, mum wasn't a person, just a death and the family who were left behind didn’t matter either. Fast-forward to 2017 and you can see everyone is treated as a person and their wishes are taken into account. There’s bereavement counselling for families and close friends. Everyone is well cared for. Even the staff on the reception desk are very helpful and kind.
It might have taken me until now to appreciate the real importance of hospice care, not just for the patient, but for their family and friends too. That’s why I’m going to support Ashgate in whatever ways I can.
“Even though grandad had died, it was like the Hospice didn’t just forget about our family. We were still able to be involved.”
Delia tells the story of how her father-in-law was the first male patient to be cared for on the ward at Ashgate Hospicecare.
“The Hospice opened on Monday 10th October 1988, and we took grandad – I always called him grandad because of the kids – my husband’s dad, Bill, in on Thursday. The Hospice was so much smaller than it is now – there were only 14 beds compared with the 21 they have now.
With grandad being the first male patient in there, they made such a fuss of him! When he came into the Hospice for the first time, they kept saying, “Come on in Bill, you’re our first gentleman you are!” I think grandad quite enjoyed having all these young, enthusiastic nurses running around after him. It made it that much easier because he got on so well with them.
It was a lovely atmosphere in the Hospice. The staff would feed grandad whenever he was hungry or make him a cup of tea whenever he wanted one, because grandad loved a cuppa! There was always someone there to take care of him, day or night. The staff had always got time to talk to him. Often when we visited, there would be a nurse sitting at his side talking to him.
I thought the staff must have got fed up of us because we asked so many questions! We’d never dealt with cancer in the family before, but the nurses were always happy to speak to us about any worries we had. We’d ask them about how grandad was progressing and about his medication. And if they couldn’t answer us straight away, they’d always get back to us before we went home. They never left us wondering.
There was one nurse I'll never forget. They were all good, but this nurse was particularly special, and she got along with grandad very well. This nurse got married just after grandad died. She had her wedding at the chapel in the Hospice and we were all invited to attend.
Grandad stayed in the Hospice for about two weeks and then we brought him home. At that time, over 30 years ago, when grandad came out of the Hospice, we had to pay for a private nurse to come and sit with him because we couldn't leave him on his own. Now, of course, there are teams at the Hospice that can support patients at home. We only had grandad home for a matter of days, and then he had to come back into the Hospice and was given in a private room.
I remember going to see grandad one night and he was really wound up, in a real state. We did what we could to calm him, but it wasn’t really working. The next day when we saw him, he was really relaxed. He told us that a Roman Catholic priest had been to see him and he said they’d had a really good talk. From then on, grandad’s attitude seemed to change completely. Grandad seemed much more at peace and more prepared for death. I still don't know to this day what the priest said to him, but it really helped.
That was only a few days before he died. On Tuesday, 15th November 1988, he died. When grandad died, we were taken into a little side room and one of the nurses came in with this great big tray with pots of tea on it and coffee and whisky too! The nurses never rushed us away from grandad; they gave us the time we needed with him. We still wanted to talk to him, even though he was gone. His eldest grandson had travelled from London to see him, so he wanted his time with him too. There were a lot of us there, but the nurses didn’t mind. They were very considerate.
I say it was a horrible time, but there were lots of caring and thoughtful people who were involved in grandad’s care. They couldn’t do enough to help us. At that time, many people were afraid of hospices, but Ashgate Hospicecare was a beautiful place.
The Hospice invited us to the Christmas service that it held in the chapel. Even though grandad had died, it was like the Hospice didn’t just forget about our family. We were still able to be involved. The Hospice was brilliant, and I can't praise the staff enough, even now, thirty years later.”
“The Hospice was a life-saver to me. They took all the stress out of caring and I got the best bits; the nice moments.”
“My husband, Alex, was ﬁrst diagnosed with prostate cancer when he was 62, and we were very lucky because he had quite a pioneering treatment and was still going 20 years later! He was still cycling, and he went up the Alps at age 84! He was also having hormone treatment that worked to keep the cancer at bay. He had a few minor side effects with it, but he was still well and active most of the time."
"When he was 85, he became quite poorly. We carried on as best we could for a few years. Fortunately, I’d retired by then, so I was able to care for him full-time. He was a very good patient! He was impatient with himself and kept asking how he’d come to this after keeping himself ﬁt for all these years, but he never put any blame on anyone else.
He declined more and more, while I was still nursing him at home. He put up a very strong ﬁght, he’d got a strong heart, but he was really quite poorly. This went on for two years and it was getting more and more difﬁcult for me, caring for him on my own. It got to the point where I had to lift Alex whenever he needed moving. He was in a lot of pain and it was taking its toll on me too. So, the nurse at our GP surgery put a referral through to Ashgate, as he said the staff there might be able to help.
Having help from the Hospice was like receiving a bag of gold! Three days after we were referred by that nurse, the Hospice said they had a bed for Alex. They said we’ll just take him in to give you a break and we can go from there. He came here and I immediately felt as though we belonged. Everybody at the Hospice treated him with the utmost care and respect and they were even asking if I was ok. I was really surprised, thinking, I’m not the patient!
He was only here for three weeks but he was content and happy in that time. I slept on the ward overnight in a recliner at the side of his bed. I had a routine of nipping back home in the morning to see our cats and have a shower. I’d sit next to him, sometimes he was conscious and other times he wasn’t, but I’d just sit and chat to him and it was just like being at home. I couldn’t fault the nursing care at all.
Many of our friends who came to visit thought it would be a dismal place, but they were really surprised to ﬁnd that it’s not! It’s just the opposite. In fact, we had quite a few laughs here, together, and with the nurses as well. I was worried that I would feel guilty not being able to look after him right up to the end at home, but he got far better care here. I was still able to care for him and yet there were professionals here to help too; to help with the difficult bits.
The Hospice was a life-saver to me. They took all the stress out of caring and I got the best bits; the nice moments. My friend had a little dog which Alex was very fond of. So, when I found out you could bring dogs in here, it was wonderful! The dog would come in, get on the bed and lie across Alex whilst he stroked him. It was great. You could come and visit no matter what time it was, and the fact that dogs could come in made all the difference. It made the Hospice feel like ours. I can see that it’s a very tight organisation, but to the relative of a patient it feels very informal. I think that’s exactly what’s needed.
It was difﬁcult with the family living far away. Our son and daughter live in Scotland and they are both professionals with tight time schedules. It was hard because we didn’t know when the end might be. My son had been to visit his dad the weekend before he died. Alex then started to decline the following Tuesday and died on the Wednesday. On that Wednesday morning, my daughter had rung me and asked how her dad was, and he was alright. But after that, he suddenly started to deteriorate rapidly, and so I called her back and she drove down at speed from the Isle of Skye. It was all very sudden but the care we received was excellent.
The nurses on duty knew he was close to the end, so they’d keep coming in to check on things, but they never imposed. My daughter arrived only about 20 minutes before her dad died, but we were so lucky that she was able to be there.
I can still hear his voice at the back of my head, sometimes saying, ‘I’m alright Jude, don’t you worry about things.’ It’s a comfort to know that he was so content here and he felt like he was ready to depart after 87 years. He knew he couldn’t live like that any longer and he was very accepting of that by the end.
I feel great affection for the Ashgate. I couldn’t fault the care we had at that time and I feel very indebted to the Hospice. I sometimes still see some of the nurses who cared for Alex, and I feel so happy that they still welcome me warmly when I come back in to volunteer. They told me about the counselling services they have here and said if I ever needed to, I could receive counselling. I got to know one of the Chaplains, Siobhan, and I knew that if I ever wanted to talk to somebody I could.”
“The staff were totally sensitive all the way along.”
“My husband Duncan was a brilliant man. We were married for forty years. We were soulmates. He was a Highland Scot, very intelligent and had a degree from Glasgow. He had thousands of books and read all the time. To see a man with a brain like that deteriorate is just awful. After he was diagnosed with cancer, Duncan developed Parkinson’s and I was his main carer for ten years."
"When we were told he had Parkinson’s, I told him to keep challenging it, keep doing things, keep walking, potter in the garden. I did all I could to keep his spirits up, but it wasn’t easy to handle. I used to give him his pills on a spoon with a bit of jam because that’s the only way he’d take them. One day, he got the spoon and threw it across the courtyard. I thought, well that's that then! Another time, I went out to the garage to get something and when I came back in, he'd taken everything out of the kitchen cupboards, and it was all on the worktop. He said he was looking for something. I didn’t realise Parkinson’s could do that to people. He had to take steroids for the cancer and the skin on his poor arms went thin and sore, so I put covers on for him and he took them straight off again.
It was difficult knowing what was happening to him, but I never cried in front of him. I just kept as upbeat as I could. When we used to go to hospital appointments, I’d make it like an outing for him, like an adventure. We used to get crisps and something to drink out of the vending machine and he used to look forward to it.
It wasn’t easy, but the staff at the Hospice were supportive all the way through. The first involvement we had with Ashgate, Duncan was asked if he wanted to go to the Day Hospice. I used to drop him off and then I could have a bit of a break for the day. He was a very sociable man and made friends there. He was able to have his little tot of whisky there, which he liked. When I came to pick him up, the staff would always have a chat with me and ask me how I was coping. They could see I wasn’t well. I have other health conditions too, so looking after Duncan really took its toll. They did all they could to take the stress of caring away for me.
He went to the Day Hospice for a couple of weeks and then he went into the ward to get help with his symptoms. While he was in there, I could bring the dog in. We had a Staffy called Poppy then. We used to bring her in and my son's greyhound too because he loved dogs. It makes it feel more normal having your dog with you, just like having your little glass of whisky. It’s wonderful to think that the patients have something like that they can look forward to every day.
Duncan was supposed to come home a few days later, so the Hospice arranged for a special bed to be delivered for him at home. The occupational therapists delivered it and made it look beautiful and tidy for him. They supplied us with all sorts of equipment for the house. Then the staff on the ward suggested keeping him in for a few more days. I think they just got a feeling that he was going to go. So, the OTs came and collected all the equipment again. Had he come home, it would have all been there for him.
He would have liked to have come home to die. That’s what he said when he could remember. It sounds odd to say but, in some ways, the Parkinson’s protected him from the reality of the cancer and I was glad of that. He wasn't really aware of how it was affecting him. I would have liked him to have died at home because I think people feel better at home, but I wasn’t well enough and I think the staff saw that too. The staff were totally sensitive all the way along. I'll be forever grateful to the Hospice for making those last few weeks with Duncan easier to cope with. The staff and volunteers were always cheerful.
Although Duncan was a difficult patient in some ways because of the Parkinson’s, he never did anything to cause trouble on purpose and he never fussed when I was looking after him. I think that’s why I was so upset after he died. I’d put on a brave face for all those years for him and afterwards it all came out. However, the aftercare from the Hospice was wonderful. I went to group counselling for six weeks, which was really helpful. We all had a laugh there as well. When you've lost somebody, you feel guilty about laughing, but the Chaplain who ran the group was brilliant. He helped us to laugh and told us it was ok.
After that, a volunteer counsellor from the Hospice came to my house every week for a year, because I was still in a bad way. She was absolutely wonderful. The Hospice went above and beyond what I had expected, and they helped me through the most difficult time.
We had a collection at Duncan’s funeral for Ashgate and raised over £1,000. Then, I wanted to do something more, so I wrote Ashgate into my Will. I wanted to leave something for all the Hospice has done for me, for the way they looked after Duncan, and for all the support I received after he died, and it’s no skin off my nose. It's a legacy; it's something I can leave knowing that I’m going to help somebody when I’m gone. It’s the least the Hospice deserves.”
John and Kath’s Story
"Until illness hits, you just get on with your life and you don’t think about all these services that you might need until they’re necessary."
I’m Chris Barnes, a specialist nurse delivering care to people like Kath and her husband John in their homes. Kath was diagnosed with oesophageal cancer and was referred to Ashgate Hospicecare by her GP. When I first went to see them, I asked what their biggest worries were. It was clear that Kath was in a lot of pain and she told me that she was having trouble swallowing. Her husband, John, was concerned that she wasn’t eating properly.
I visited Kath each week in her home, making sure her medication was correct and ensuring that she had the right care at home during the times I wasn’t there. At one point, Kath’s pain was too much for the couple to deal with at home, so I asked if Kath wanted to come onto the ward at the Hospice until she felt a bit better, and then she could come home. I knew that Kath’s care was getting very difficult for John, so I arranged for home carers to come in everyday when Kath came out of the Hospice. I also referred them to our other teams to make sure that they got the equipment Kath needed in her home and that they were receiving the correct financial support as both of them had stopped working.
John said, “Chris has been an emotional support as well as everything else. She always gets a cuddle off me at the end of her visits! She’s been fantastic with us and she just sorts things out so that we have less to worry about.
We’re really grateful for all the help that’s available to us. Until illness hits, you just get on with your life and you don’t think about all these services that you might need until they’re necessary. I think it’s really important that everyone understands this. I’m sure we’re not on our own. I’m sure there are lots of families caring for loved ones at home and going through exactly the same thing as us, and I’m sure there are people struggling much more than me to care for their loved one. That’s why we believe it’s so important to support Ashgate. We want everyone to get this kind of support at the most difficult time in their lives.”
Since this was written, Kath has sadly died. We are thinking of Kath and her family at this sad time.
“There’s a different philosophy towards caring at the Hospice and it shows in all the staff. The Hospice couldn’t possibly have done more for us.”
“When we found out my mum had pancreatic cancer, we tried to do as much as possible with her as we didn’t know how much time she had. She’d had the cancer for a little while before she found out. I’m a nurse and so I’d picked up on things that weren’t quite right, but it was a total shock to her. We had eight weeks together from when she was diagnosed to when she died. She told us that she wasn’t afraid to die, just that she would miss us all very much."
The day after she received her diagnosis, my husband and I dropped everything and took her and my dad to Whitby for fish and chips. We had a great time! A few days later, on her 82nd birthday, we took her and dad to the casino for a meal. As a surprise, our sons met us there with their girlfriends and she was over the moon. She said that her perfect day had just became even more perfect!
I took time off work so that I could care for her. I knew I wouldn’t have been able to function if I’d have stayed at work; I’d have been too worried about her. So, I became mum’s main carer. At first, she stayed in her own home, which is just down the road from me. She’d text me when she woke up and I used to go and shower her in the morning. She told me I was the only one she would let shower her and we felt fortunate that she didn’t have to have a stranger doing it.
We used to have a laugh, I mean, we had moments when we cried sometimes, but we laughed a lot as well. I’d say things like, ‘Oh, come on Mother, you’ve got to comb your hair! Don’t let your standards drop, love!’ We didn’t want to treat her any differently than we always had, and it put a smile on her face.
Our first involvement with Ashgate was through the palliative care nursing team. A nurse called Anita started to visit my mum at home on a regular basis. The first time Anita came round, mum was having a really bad day. She’d had an allergic reaction to some medication and had a rash all over her body. She was also feeling very lethargic and just wasn’t herself at all.
I’m a nurse myself and so I could tell as soon as Anita walked through the door that she was a very calming presence. She had an attitude of, ‘Don’t worry, we can sort it.’ I’m the kind of person who, when I say I’m going to do something, I do it, and I appreciate that in other people. Anita was the same. Everything she said she was going to do, she did, and that really put us at ease. It meant that my husband and I could just focus on caring for my mum.
Apart from being very tired, my mum’s main problem at that time was restless legs. I was worried that she was constantly tortured by that and couldn’t sleep properly as a result. She also often felt sick. Anita managed to sort those problems out almost straight away. She had new medication within 24 hours and it worked. It was amazing to see a change so quickly.
I’d asked Anita whether, if mum were in pain in the middle of the night, I would be allowed to give her the pain relief she needed. I knew that if mum needed strong pain relief urgently, we wouldn’t want to wait for a district nurse to come and administer it. Anita authorised me to do that if I felt able to do so, and so that was another huge relief for me.
A few days before mum died, we noticed she had started to decline, so we moved her into our bungalow to keep a closer eye on her. It was a Sunday night when her pain started to get much worse. I was so stressed and worried – in a total panic – and I didn’t think I could give her the pain relief she needed. At first, I had really wanted to nurse mum all the way through, but I didn’t realise how hard it would be to nurse a family member until I was facing that situation.
I ended up ringing Ashgate and they said they would send somebody out. Before long, a nurse arrived. She could see that I was all over the place and she just said, ‘Lynn, I will sort things out for your mum.’ It was exactly what I needed. The nurse gave mum the medication to help with her pain and to help her settle. She checked we were all OK and then she left.
Mum held on that Sunday and then died on the Monday. The day she died we’d had all the family here. My dad and the boys were with us, my brother had been round too and so had her sisters. Everybody was coming in and out all day. My eldest boy and his girlfriend went out and came back with a load of food, so we all sat round eating and drinking wine and spending time with mum. It sounds odd to say it, but we had a lovely day. The district nurses had come around to set up a syringe driver for mum and they let Ashgate know so everybody knew what was happening. The communication between the different organisations was excellent.
She died at twenty to nine at night, after everybody, apart from my dad, had gone. He was with her the whole time. I noticed her breathing was slightly different, so I knew she didn’t have long left. I came out into the kitchen and started texting one of my mum’s best friends to let her know and when I went back in she had died.
I was so worried when I found out she had pancreatic cancer that she would be in a lot of pain and we wouldn’t be able to control it, but it wasn’t like that at all. Everything seemed to fall into place in the end, and my mum had excellent care throughout. Mum and I had very open conversations about the care she wanted. She didn’t want to go into a nursing home or go to hospital. She wanted to stay at home and I said I would do whatever I could to make that happen. She trusted me and she wanted me to care for her.
As soppy as it sounds, it felt like people had their arms around us. No matter what time of day, we had a support network of friends, family, the GP, the pharmacist, district nurses and the Hospice, who could help us, so I wasn’t all on my own. Answers to any questions we had were easily available to us.”
“I was so worried when I found out my mum had pancreatic cancer. I’m a nurse myself and I wanted to care for her, but I was really worried she’d be in a lot of pain and we wouldn’t be able to control it. Although mum got very tired, she was quite well up until her last few days. Fortunately, we had a support network of friends, family, the GP, the pharmacist, district nurses and the Hospice, who could help us when she started to decline, so I wasn’t all on my own. Everything seemed to fall into place in the end, and my mum had excellent care throughout.
The Hospice organised all of mum’s equipment – they couldn’t give us enough! We spoke to an occupational therapist from the Hospice and within 24 hours they came out and they assessed what we needed. Within the next 24 hours, everything was delivered! When time is precious, it’s really important to get the equipment as soon as possible and the Hospice really understand that. Anything we needed, it just arrived. We had two walking frames, slide sheets, a back rest, a perching stool and a commode. We then needed a baby alarm after we moved mum into our house in a bit of a rush. I wanted to be able to hear her when I went to bed to make sure she was OK. We told the Hospice on the Saturday that we might need a baby monitor, and they said that if we wanted to, we could come and fetch one right away, which was brilliant!
Getting a stairlift was also a big issue for me. From the minute I found out about mum’s illness, I put my nurse’s head on saying, ‘right we need a stair lift now’. Mum was getting breathless anyway when walking and she was only going to get more tired. I knew that it might mean the difference between her being nursed at home or not. This was before we moved her into our bungalow.
A friend of mine had just ordered one for her mum and told us it took three weeks to arrive, so I was panicking thinking that three weeks would be too long and we needed one sooner. Mum was only with us for eight weeks from her diagnosis to when she died. We asked Ashgate for advice and they gave us the numbers of some stairlift companies. We called up and they couldn’t have been more helpful. They came, measured up and we had a stairlift fitted within 48 hours! That really took the pressure off and it was so good that even my dad started using it too!
A physiotherapist from the Hospice also suggested that mum have a little walker so mum could get out in the garden. It’s like a Zimmer frame with wheels and a little seat. It’s things like that, that if somebody had asked me what mum needed, I wouldn’t have thought about that, but it made a huge difference. The support we had from Ashgate was just phenomenal.
Mum had to go to the Hospice only twice or so to see a consultant. The moment we walked through the door we were always greeted warmly. Everybody’s attitude was great. The receptionists were lovely and it all helps to build trust in the service. You can see that there’s a different philosophy towards caring at the Hospice and it shows in all the staff.
Most people are affected by cancer in some way but it’s only when it affects you personally that you see how important the Hospice really is. The emotional distress on a family going through cancer is huge. We needed all the support we could get and, as far as we can see, the Hospice couldn’t possibly have done more for us. They helped to make our lives as easy as possible in those final weeks. We just felt backed up. I felt that I wasn't on my own. The Hospice knew I wanted to look after mum and they knew she wanted to be at home, so they just said, ‘OK, we’ll support you to do that’, rather than leaving me on my own to do it.
We realise now that if people didn’t support the Hospice through donations, my mum wouldn’t have been able to have all those things and she wouldn’t have been able to stay at home where she wanted to be. It’s thanks to everyone who has donated in the past that she was so well looked after. And we know that what we donate now will enable the Hospice to carry on delivering this care for future generations. We were so fortunate to have such amazing care and I couldn’t criticise a single thing about Ashgate. There was nothing the Hospice could have done better to support us in caring for mum.”
“The support I’ve received since Frank died has been tremendous. The Hospice helped me get back to living again and I couldn't have done it without them."
In September 2017, my husband, Frank, who I’d been with for 30 years, went into hospital with breathing difficulties. At the beginning of his second week in hospital, I went to visit him and he was sat there crying. I asked him what was the matter, and he said the doctors had told him he had cancer and they’ll be coming to talk to me soon. A member of staff pulled me aside and told me that Frank had two to five years to live. And that was it. I broke down in tears.
A couple of days later, I had a phone call from Ashgate who said that the hospital had been in touch and they were asking when they could come and visit me to discuss the future for both of us. I had two visits from somebody from Ashgate whilst Frank was still in hospital to see how they could support me throughout Frank’s illness.
Frank came home from hospital on the Tuesday and he was ok. But on the Friday morning, he wasn’t feeling well and had to be readmitted to hospital.
When I headed to the ward Frank was in, a nurse came up to me and said the consultant wanted to speak to me before I saw him. She took me into a little room and I knew immediately that it was something serious. I could feel that something wasn’t right.
I was waiting quite a while with a horrible feeling in my stomach. I found the nurse and said, “Can somebody please come and see me? I think it's unfair to keep me waiting. I know something's happened… please.” She kept looking around and told me the consultant would be here in a minute. I pleaded with her and, not long after that, we saw the consultant and ward sister coming down the corridor. They sat down opposite me and the consultant said, “I'm sorry to tell you, but Frank died five minutes ago.”
I just couldn't believe what he was telling me. I was then left with the ward sister and the other nurse, so I just asked to go and see him. I stood up and collapsed. I couldn't stand. They had to carry me onto the ward where he was. When I got there I just hugged him and kissed him. He was still warm and soft and it was just like he was sleeping there peacefully. I asked the nurse to take off Frank’s wedding ring for me because I didn’t want to hurt him. I said, “Goodnight darling, I Iove you very much.” And then walked away. I was in total shock.
I was in such a bad way after Frank died. I lost my brother at the beginning of the year as well; he died very suddenly. We lost a couple of friends throughout the year and then Frank died in the September. I had all the difficulty of sorting everything out after Frank’s death and all you need at that time is support from friends, but often people don’t know how to talk to you when something like that happens. In fact, a lot of my friends simply stopped talking to me altogether.
So, it was a very lonely time for me. I felt totally on my own because I have no family now as such, and I really struggled in those first few months. Then, around Christmas time last year, I got a phone call from Ashgate offering me bereavement counselling. I took them up on the offer as I knew I needed the support.
I came to the Hospice once a week for group counselling sessions to start with. I had to leave the room a few times because I was finding it hard and I just sat and cried in the reception area and tried to deal with it. Then, when the weeks of groups counselling finished, we were offered drama therapy. I’d never done anything like that before and had no idea what it was like, but four of us from that group decided to give it a go.
I found that the drama therapy really helped me. I've come out of it a much stronger person, probably even more than I was before Frank died. Even after the first week, I felt a change. It’s really helped me to cope with things and move forward. I feel ready for life now. You don’t have to act, and you don’t need any drama experience, there’s a little bit of improvisation where you work together but we were quite comfortable with that because we all knew each other from the bereavement counselling. The four of us who did the drama therapy have become good friends now and we still meet up for coffee and lunch, one year on. After the group drama therapy sessions, I was offered one to one drama therapy and decided to take on that as well.
If the Hospice hadn’t been able to give me support after Frank died, I don’t think I’d be here. I was in such a desperate state. I couldn't handle things and I was finding it difficult coping with living. I was so lost and alone. I spent many nights curled up on the settee sobbing my heart out for hours on end, not knowing what to do or how to deal with things. I tried phoning friends, but they weren't answering the phone or didn't have time to talk. It gets to the point where you can’t call people anymore and the telephone becomes the heaviest object in the world. You need people to be phoning you and asking how you are. Or you need people to call round and ask if you need a bit of help, but many people just shy away from it.
There needs to be more done to raise awareness of bereavement. Until we learn to learn how to deal with bereavement as a society, people will continue to feel very alone. That’s why I’m no longer afraid to talk about my experiences. I want people to know how important it is to support each other when they lose someone so close to them.
I was so grateful for all the support I received from the Hospice that I decided to sign up to Sparkle with a friend. Unfortunately, my friend wasn’t very well on the night, so I decided to do the walk by myself anyway. I got there and felt a bit lost at first, but more and more people were arriving, and I thought, I have to do this. I saw a lady sitting on the curb on her own and so I just said to her, "Are you comfortable down there?" and we got chatting. A little while later, her friends arrived to do the walk with her. She said to me, “Come on then, you can walk with us.” And she introduced me to everybody.
It was a very emotional evening, especially once the walk started. We were in the middle of the crowd so, as we set off, we could see a stream of pink people and sparkling bunny ears in all directions. Then we saw the fireworks going off. I thought, I'm glad I'm with people because I think I would have just burst into tears if I was on my own. It was so emotional. Not only that but everybody came out on the streets to cheer us on as well. I thought it was really nice that they were showing their support for the Hospice and helping to boost us too; it made a big difference. I’ve stayed in touch with the ladies I met at Sparkle and we’ve even arranged to meet up next year for the walk! I loved it so much that I signed up to do next year’s walk the day after!
The support I’ve received since Frank died has been tremendous. The Hospice helped me get back to living again and I couldn't have done it without them. That’s why I am walking the Markovitz Sparkle Night Walk this year.
"Although Jason was in his final days, he did still matter, he was still a person and he was still important."
My husband, Jason, was diagnosed with bowel cancer in October 2014 and died on 24th December 2015 in the Hospice at the age of 43. No day is a good day to lose your husband, but Christmas Eve was especially hard for us. We have two beautiful children who were nine and five years old at the time.
Ashgate were involved with Jason’s care towards the last few months of his life. He used to come to the Hospice for appointments with the consultants. An occupational therapist from the Hospice came around to ask if we needed any equipment in the house but, by this time, Jason had really become very ill. When she saw him, she could see how much pain he was in, and so she said it would be best if he came into the Hospice so that the pain could be managed.
Initially, I didn’t want him to come here. I had no idea what to expect as I’d never been to a hospice before. I thought it would just be like a hospital. However, within ten minutes of being here I knew that this was the right place for him. The staff were really caring and every time we asked for something or Jason needed anything, the staff would do it. He didn’t have much of an appetite, but he liked icepops and so they would always bring him one whenever he wanted one, it didn’t matter what time of day or night it was. It gave us a lot of confidence, knowing that he was being listened to and cared for so well.
At first, Jason was in one of the bays, sharing with another gentleman. But the nurses could see that he wasn’t well and so told us that as soon as a private room becomes available, Jason can be moved into it. They moved him the very same day and it was so much better for him.
The kids could come and watch TV with him and we could spend quality time together as a family. We have memories of opening Christmas presents together and all the staff at the Hospice make Christmas feel really special. It was just nice to know that they cared about us. Although Jason was in his final days, he did still matter, he was still a person and he was still important. That’s how they made him feel and that’s how they made us feel too.
The consultants always explained everything in detail and, although Jason was near the end of his life, they didn’t give up on him. They were still trying anything they could think of to make him more comfortable.
We felt very comfortable here; the kids would walk around the corridors in their pyjamas and slippers, just like being at home. We’d go to the family room and make ourselves drinks and the kids would go and play with the toys. There were no visiting hours or restrictions on how many people could come. You never felt like you were getting in the way; his friends and family could come and visit anytime, you never had to rush off, and we were always made to feel welcome. We just felt really at home here.
I remember, in the day time on Christmas Eve, I was on my own in a room and the nurse came in, shut the door and said, “Are you all right, how are you?” She spent a bit of time talking with me and I thought that was really nice of her.
You don’t expect this, but the Hospice is a lovely place to be and I’m so pleased that Jason spent his final days here and we could make those last memories. We didn’t have to worry about the medical side of things at all; we could just leave that in the hands of the staff here and spend time together as a family in his last few days.
It was really important to me that I could stay with Jason overnight at the Hospice. Jason’s mum and dad were also able to stay, as well as his brother who had come down all the way from Scotland. It meant that we were all able to spend precious time with him.
I was planning on staying with Jason the whole time, but I had a dilemma because the kids still believed in Father Christmas and so, on Christmas Eve, I couldn’t decide whether to stay with Jason or go home and get the presents under the tree. It seems mad to say this now, but all I could think about what was what I was going to do with the Christmas presents. Jason wasn’t doing well but, in the end, I went home to help make sure the kids still got their Christmas.
I got home and it was about six o’clock in the evening. A few hours later there was a knock on the door saying that I needed to come back to the Hospice quickly, but the presents were still not ready. I rushed back to the Hospice and my brother kindly said he’d leave early to sort the presents out for the kids before they came home.
Looking back now, I definitely feel like we were out there on our own until Ashgate got involved. Before that, we didn’t know how to tell the children what was going to happen to daddy and there was no one to give us that advice. However, when we were referred to Ashgate, they gave us the emotional support we needed to deal with things better.
“Geoff was so relieved when he came back to the Hospice. He said it felt like going home.”
In October 2010, my husband, Geoff, was diagnosed with Parkinson’s. He was on medication for it which didn’t seem to be working and so in February 2011, we went back to the hospital where we saw another consultant. This consultant was new to the team and an expert in these kinds of diseases. He diagnosed Geoff with MSA on his first appointment.
It all started with a bad back and then Geoff’s bladder stopped working. Nobody could figure out what was causing it. It wasn’t until later when he was referred to neurology that they diagnosed him with Parkinson’s, then later MSA. We didn’t realise that Geoff had already been having symptoms of MSA for some time. He had been having trouble breathing when he slept and had been having violent dreams.
At Geoff’s first neurology appointment, I asked the doctor to write down the name of the condition for us as I’d never heard of it before. He didn’t tell us at the time that it was terminal, he just told us not to believe everything we read on Google. We came out with an armful of prescriptions and from then on, Geoff went to see the specialist consultant every three months.
Knowing that Geoff would get gradually worse, we decided to stop working and travel to some of the places we’d wanted to go to – a few places we’d been before and loved, and some new places we’d always wanted to visit. We were very lucky that in that first year after his diagnosis, in 2011, Geoff was still very mobile.
Then, in early 2012, Geoff had a fall in the snow and hurt his back again. He never properly recovered and from then on, he really started to decline. It was at that time that Geoff was referred to the Hospice and Ashgate got in contact with us straight away. Lesley, a Hospice at Home Support Worker, started coming over for half a day each week to help me so that I could get out. She’d say, “Right Carole, off you go! Do any jobs you need to do, meet friends, whatever you want. I’ll see you later!” She told us about the Day Hospice and Geoff was really keen on the idea, so he started going there every Friday and really enjoyed it. That gave me a bit of a break too. He had so many laughs there with the staff and the other patients. Having all of that support was wonderful; I can’t fault the Hospice at all for the support they gave us.
In 2013, the year before Geoff died, he took a turn for the worst and so he was offered a bed at the Hospice where he stayed for a few weeks. He had fantastic care whilst he was there. Geoff was quite happy to go into the Hospice when Lesley suggested it and she explained it was just to control his symptoms and then he can go back home. It gave me a well-needed break from caring, plus Geoff was able to have lots of physiotherapy sessions to help his back pain.
I went in to visit him every day with our dog, Jacob, who was very popular with lots of the other patients and their families! There was a lady in the room opposite Geoff’s who was very ill and I got to know her daughter who was with her all the time. We’d met many times in the Family Room. She said to me one day, “I’ve got a favour to ask you. I hope you don’t mind, but could you bring your little dog in to see my mum?” Normally, Jacob is very excitable when he meets new people, but I picked him up and put him on this lady’s bed and he just lay there licking her hand. A big smile came across this lady’s face. She couldn’t speak, but the daughter was talking to her saying, “Remember when so and so had a dog, mum?” We were there for about 10 or 15 minutes until the lady started to look tired so I said I’d leave them. The next day, the daughter came up to me and said, “I don’t want any tears because my mum is now out of pain. She died last night and I wanted to tell you that I’m so grateful for what you did.” I said, "I didn’t do anything! I only brought the dog in and laid him on the bed!” But she told me that it was wonderful.
Geoff and I spoke about what might happen as he got more ill. He said he didn’t want to have a feeding tube and that if he had trouble swallowing, he would just like to let nature take its course. We were very open about things like that, as it was important to both of us. Ashgate made sure to have those conversations with us about whether he wanted to be resuscitated in an emergency and what kind of treatment he wanted as he got more ill. They were really good. It was Geoff’s wish to die at home, but he said that if he couldn’t die at home then he wanted to die in Ashgate. I agreed that it was the best place for him if he couldn’t be at home.
Geoff died much earlier than we’d expected. It started when he got a urine infection one Friday and on the Sunday had to be taken into hospital. It was a really frustrating time for us because he couldn’t be transferred to the hospital he was under. They couldn’t move him until they got his infection under control. It wasn’t until the Tuesday that the results from the labs came back and they could find out what kind of antibiotics Geoff needed, all the while he was getting worse and worse.
I was so worried about Geoff that on the Tuesday I rang Ashgate and spoke to Dr Sarah Parnacott. I explained our situation and Sarah got one of Ashgate’s specialist nurses who was based at the hospital to come and see us. She was lovely and really helped to put me at ease. She said that as soon as Geoff gets on the right antibiotics and starts to improve, we’ll move him to Ashgate.
Geoff was so relieved when he came back to the Hospice. They’d even managed to put him in the same room he was in before, which he really liked because it was an individual room with a little patio. He said it felt like going home.
I didn’t want to leave him but I was with Geoff’s sister who had travelled a long way to see him and so Geoff said I should go and take her to the station; he told me he was fine. I came away, but I didn’t feel happy coming away. I knew he wasn’t right.
Our son, Dom, had moved to Newcastle but he was coming home that weekend to see his dad. He’d come straight from work so I met him at the station and said let’s get something to eat and go home. We got a takeaway and just as Dom had finished eating we got a phone call. Dom answered the phone and I realised it was Ashgate. I thought Geoff had died and was kicking myself thinking, I knew I shouldn’t have come home. But Dom told me he hadn’t died. He put the nurse on to talk to me and the nurse said, “Mrs Aitken, your husband is very unwell. He was insistent we didn’t ring you but obviously we wanted to let you know that he’s not doing very well so you can come and see him.”
I drove to the Hospice immediately. I rang our other son, Alex, who was living in the South and told him to get up here as soon as possible. By 4am, everybody had arrived to be with Geoff: myself, my sons and their girlfriends. We stayed with him all night and the next day. A specialist nurse came to see us that night at about 2am and it turned out to be the same one we’d seen at the hospital. She asked if we knew that Geoff was near the end and we said yes, but he was still trying to speak and he was aware that we were all there. The staff were wonderful with us and offered us recliner chairs so that we could stay with him all night.
Alex and his girlfriend, Sarah, went to step outside for a bit of fresh air, so I said I’d like to take a walk to the Chapel as I’d never been before. I knew Geoff was dying but I really needed a little break. I went into the Chapel and saw the little prayer box there with some note paper. I wrote a prayer asking for God to take Geoff now, he was very tired and I didn’t want him to suffer any longer. The moment I put the prayer into the box, I heard footsteps running down the corridor and I instinctively knew it was Laura, Dom’s girl-friend. She told me to come quick and when I got there, the doctor told us Geoff had minutes left.
We were all there when Geoff died. The Hospice were fantastic, they shut the blinds on the door, put up a ‘Do not disturb’ sign and we stayed for hours. It was incredible because within just ten minutes of Geoff dying, you could see all the pain that he’d been carrying just lifted and he looked like my Geoff again. He looked ten years younger! He had a very peaceful death and we’ll always be grateful for that. We were all given the space to cry and laugh as well, which was important. My son Dom was able to give his dad a shave after he died; something he’d promised to do when Geoff was in hospital but never could because he was too ill. He did it very carefully as he wanted Geoff to look perfect.
I can’t praise Ashgate enough for the care they gave Geoff and our whole family. I feel like we were very lucky because we’ve met many MSA sufferers and their carers from all over the country and we know that not all of them have had the kind of support we’ve had. With the help of the Hospice, Geoff almost got his wish to die at home, and in the end he got died in the next best place.
I started seeing a bereavement counsellor about a month before Geoff died. I only left it about a month or six weeks after he died before getting back in touch with my counsellor and after that I saw her for a year. She helped me so much. She really understood grief and she taught me a lot about it which has helped me to cope. She understood that the grief will always be there and I’ll just build the rest of my life around it. Nobody said I need to get over it, which I think is really important.
I also attended a bereavement group which was really helpful. There were people there of all different ages and we’d all gone through similar things but we were all different ages. I got so much out of those sessions and they really helped me to put things into perspective. Ashgate even rang my sons and asked if they wanted counselling. We didn’t expect that at all. Although they declined, I thought it was amazing that the Hospice was thinking of them.