“The care feels very personal.”
When David Williams, now aged 69, first came to Ashgate Hospicecare, his quality of life had been deteriorating quickly. He told us about what it was like to be on the Inpatient Unit. Many months later, we had a catch up with David in the Day Hospice where he comes in one day a week.
In his first interview, David recalled the way our fantastic clinical staff did everything they could to make his time here as enjoyable as possible.
“I was sent to hospital where they announced that I had a brain tumour. After, I was sent to another hospital where they did a biopsy, they then arranged for me to have radiotherapy. I had 30 days of radiotherapy and that was it. I was told to come back in a few weeks to talk about chemotherapy. It was never fully explained to me why, how, what the effects are, what is going to happen to me, how it is going to affect my life...Luckily, I have a very supportive sister who is a retired ward sister. She was able to give me more information about it all. I’ve only ever had two stints in hospital before, so I had no idea how the medical system works!
When it finally dawned on me that I was terminally ill, it filled me with utter despair. I thought, What have I done to deserve all of this? I’ve always been somebody who is very healthy and does things every day of the week without fail, whether that’s walking, outdoor trips, reading, writing, or cycling etc. I bought a campervan when I retired and used to spend the summer months touring around Europe in it. I can’t do that anymore. I like to write books and research local history. I can’t do that anymore. I can’t go down to the record office and pore over 19th century scripts. I was hoping to organise an archaeological dig this winter, but I can’t now. It’s all gone. That’s when I decided to register with Dignitas, the Swiss euthanasia group. I joined it and paid the £140 joining fee. I felt so useless at that time.
Eventually, after the radiotherapy, they sent me back home to my little cottage in the Peak District. I was doing alright there for a few weeks, but then I started to have seizures. It got so bad that I was having up to 20 in a day, almost one every hour. One evening I came up the stairs, had a seizure and fell backwards down the stairs. I landed on my back, smacked my head on the wall and was taken to hospital.
During that time, I was losing weight and was constipated. When I would feel a seizure coming on in my arm, I’d start to press the buzzer before my arms and legs were tied up in knots. Each seizure didn’t last long but it was painful. One day, the physiotherapist said we should go out and stretch my legs. I got 10 feet down the corridor and my muscles seized up so I couldn’t stand up. I felt like I couldn’t do anything at all except lie there. I was completely debilitated.
After a referral to Ashgate Hospicecare I was moved in very quickly. They explained things to me and gave me medication that sorted out the seizures within a few days. I no longer have to sit with my finger on the buzzer constantly, so I can relax more.
I’ve improved a lot since coming here, I feel like I get looked after properly and my quality of life is much better. The ethos of the place is completely different. Many of the staff are local and they take the time to have a proper chat with you. The care feels very personal. I’ve already lectured some of the staff on travel and history! One of them even cut my hair the other day.
My friends and sister visit me often and I can sit outside on the terrace when the sun is shining. Plus, the food here is wonderful! You get cups of tea, cakes, jelly... even beer! I’ve put the weight back on now and I’m regular! Even though I still can’t do everything I used to do, I feel assured that the hospice staff will do everything they can to ensure my life now is as painless and dignified as possible.”
Months on, and David is now a regular visitor to the Day Hospice. Patients typically come in for one day a week. As well as running a number of different activities for the patients, which often involves members of the local community coming in to give talks and run sessions, attending the Day Hospice also gives patients the space to socialise and provides respite for family members, friends and other carers. This is particularly the case when a patient needs constant or complex medical attention. There is always a nurse or a consultant at hand, as well as complementary therapies such as massages and physiotherapy services. We took the opportunity to ask how David is feeling now, almost a year since he was first diagnosed.
“I’ve been feeling better since coming to the Day Hospice. I’m not experiencing any pain and I don’t feel ill. I’ve got hearing aids and now I just need to get my eyes sorted out. It’s better than sitting at home doing nothing because I can chat to people here. The staff are all friendly. Tim, the volunteer Chaplain, always makes me laugh! There’s another chap who usually comes in and sits next to me and we have a good discussion about 1960s and 70s music. In a moment, I’m going to get one of the Day Hospice volunteers to come over and cut my nails. Each week, I usually spend an hour or so with the physiotherapist in the gym, cycling and so on. Apart from that I sit and talk and have my lunch and they fetch me coffees and teas and biscuits. It’s little things like that that that mean it’s nice to come here.
If Ashgate Hospicecare hadn’t managed to sort out my seizures, I’m sure I’d be dead. I’ve not had any seizures since coming here. My leg’s still not quite right, but I’m not in any pain. I can walk, well, hobble, using the zimmer frame. If I don’t use it they tell me off!
As much as I would rather not be in this position, I can say that the hospice has been wonderful. When I was in the Inpatient Unit I still managed to go to the pub – one of my friends would fetch me and we’d go out. The hospice allowed me to do that even when I was very ill in the Inpatient Unit. Without being able to do things like that I would have been suicidal.
I’m a bachelor and I’ve always looked after myself and done my own thing. Having to rely on other people is somewhat odd, but now I think, I can’t do this by myself, somebody has to do this for me. I have carers from an external company coming into my home who are great. I’ve also had a stair lift fitted so I can get up and down the stairs. It’s been really necessary to have all the extra equipment. It’s wonderful to still be in my own home. I’ve had my kitchen and bathroom redone in recent years, so I would never want to move out. My neighbour, who is a longtime friend has also been wonderful throughout this time.
Two weeks ago my brother and his partner came up for the weekend so I didn’t come to the Day Hospice that day. I’m in here most weeks, although in November I’m planning on going down to Brighton to stay with my brother and have an adventure! I’ll be going to my sister’s again this year for Christmas.”
"Ashgate Hospicecare were really there for me during the hardest time."
When my mother, Vera, was diagnosed as terminally ill at age eighty-five, I was planning on spending the summer with her, but unfortunately she passed away in spring this year. It was all quite quick. We had a lovely Christmas and the New Year together, but after that she went downhill very quickly.
I lived 50 yards away so I was visiting her every day: cooking meals, doing her medicine, calling doctors, but it was clear that she could no longer live by herself. It was at that point that the health professionals, including those at Ashgate Hospicecare, got involved and we decided that she should move in with me.
This took much longer than expected as I needed to make some changes to my house to accommodate her needs. By the time mum moved in, her condition was really bad and she was only here for three and a half weeks in the end, but Ashgate Hospicecare delivered all the specialist equipment mum needed.
She had a reoccurrence of cancer. After a successful operation a few years ago to remove a womb cancer, she started to experience pains again. After many tests, they finally found a massive tumour in her abdomen, but by that time it was too late.
Mum received radiotherapy, but eventually she couldn’t be treated that way anymore. She was in a lot of pain from the tumour and it was then that we realised mum would need palliative care.
It was really stressful for me even with all the help the nurses provided. Fortunately, my employer allowed me time off so I was able to care for mum full-time during her final weeks. Even so I had no spare time. I pretty much devoted all of my time to looking after her. We used to go out for walks, but we couldn’t do that after she got much worse.
At first I was trying to get her to sit with me in the living room, but that didn’t last long until she was pretty much confined to the bed. She just didn’t want to do anything. It’s only a short walk to the bathroom but she was even struggling to do that. She had absolutely no strength, and she wasn’t eating. The cancer was in her stomach and you could see it bulging, it was really distressing to see. Trying to feed her was difficult. I didn’t know if I was doing the right thing by encouraging her to eat because, after all, it’s just prolonging the inevitable. It’s hard to describe just how difficult it is for one person to care for someone in that condition.
The worst time for me was when mum had a bowel movement just after the carers had been in to see her and wash her. I really needed help then because she was in such a state. In the end I had to get her in the shower by myself which was distressing for both of us. Mum still knew exactly what was going on. I got her sorted out, cleaned up, and changed the bed clothes and her nightie, but then an hour later a similar thing happened. As you can imagine, I was absolutely exhausted.
After that episode, I contacted Ashgate Hospicecare and they arranged for nurses from other services to come in on a more frequent basis. The speed of mum’s decline was such that this was crucial. By that stage you could tell that she had really given up and was happy to let the nurses do whatever was needed. At one point, I had four different people in the house at once caring for her! I thought it was amazing the way everybody dived in to help. However, there was so much going on that I started to lose track of who was doing what. It was out of my hands and quite bewildering, but I was certainly glad it was happening.
Ashgate Hospicecare were really there for me during the hardest time. One of the nurses started coming once a week for a whole afternoon. It wasn’t for many weeks, of course, but that was an essential relief. It gave me that respite I needed. Even though I was only going out to do the shopping, just being able to get out of the house for an hour or two was such a help. It was getting so difficult by that point; I don’t know what I would have done without that time to myself and I’m really grateful to Ashgate for that.
Even with that extra help, over the course of those last weeks, my energy levels seriously declined. I wasn’t sleeping properly as I was getting up to check on mum every few hours throughout the night, just to make sure she was alright.
Different nurses would come in everyday from different services including Ashgate, but then in the last week we started to see the same people more often. It’s nice to see those familiar faces, plus they knew mum’s condition and could make better judgements about what kind of help she needed. I phoned 111 a few times. They provided a decent service but it’s obviously not the same as being able to rely on 24-hour support from the same people.You end up having to explain the situation every time.
Mum didn’t want to go into a hospice or a home, so I’m fortunate that she was able to stay at mine until the end. However, the care she needed was too much for me to deal with on my own. Ashgate Hospicecare do such an amazing job, I can’t actually believe just six people work in the Hospice at Home at the moment covering the whole of North Derbyshire! We would have really benefited from a 24/7 service where we could have seen the same nurses whenever we needed them - at nights and weekends and those really difficult moments, but they obviously need more funding and more staff to make that service available.
"Thank you Ashgate Hospice for letting this happen. Thank you for extending Terry’s life and thank you for giving us the holidays of a lifetime.”
Emma Wilson, from Chesterfield in Derbyshire shares her story of the care her husband, Terry received at Ashgate Hospicecare. Terry Wilson, 53, had been suffering with bowel cancer for nearly three years. In July 2015, he received the devastating news that the cancer had spread to his kidneys and he only had three months left to live. Following numerous admissions to hospital, Terry was put in contact with Ashgate Hospicecare in July.
Emma said, "Terry always thought hospices were for older people, but having spent a week in here he couldn’t believe how caring all the staff were. From the dietitians to the rest of the staff, they were all amazing.
Once Terry's symptoms were effectively managed, he was discharged from the hospice and returned home after just 1 week on the Inpatient Unit. Terry was able to have a week in Cornwall and a weekend in the Lake District."
"The last holidays we had were amazing, Cornwall was one of Terry’s favourite places. He'd been going down to Cornwall since he was a child, and he and I always went once a year without fail. So, our wish of going back there, as a family was able to go ahead and I will never forget it."
"The two holidays that we had post Terry's admission into Ashgate, were to be the last of his life. But, had it not been for his week in Ashgate Hospicecare, they wouldn't have been possible, so for this, we will be forever grateful. The Hospice turned Terry's life around."
"Memories are not only in your mind but are also on photographs and I have lots of memories of Terry on our last holiday in the Lake District, mostly with our little grandson, Max. I look back on these photographs and sometimes I'm in tears and other times I just look back and think, "Gosh, thank you Ashgate Hospice for letting this happen. Thank you for extending Terry’s life and thank you for giving us the holidays of a lifetime."
In November 2015, Terry was readmitted to Ashgate Hospicecare and on the 15th of November, he sadly passed away.
Emma said, “Ashgate Hospicecare gave us all the facilities we required to be able to not leave Terry’s bedside in his final few days. None of us returned home for around 4 days, we had food, beds and showers. It was such a relief to know we had everything there that we could possibly need. This enabled Terry’s close family to be at his bedside during his final days which was one of his final wishes."
"I cannot fault anybody at this hospice. It is clean, it’s tidy, it’s well supervised and the nurses were fantastic with Terry."
"I’d like to say thank you to everybody at Ashgate Hospice for what they did for us whilst we were here and the support and care they have given me since. Thank you everybody."
Since Terry died, Emma, along with family and close friends have been heavily involved with Ashgate Hospicecare and its fundraising department. She took part in last year's Sparkle Night Walk and has re-entered for this year's as well.
Emma said, "My son along with close family friends who also have similar experiences have organised an annual golf day to raise money for the hospice and continue to plan this years event as we speak. I've personally done a few sponsored walks, but one of the best I went on was the Sparkle Night Walk. It was amazing and the atmosphere from start to finish was so much fun with lots of laughter whilst raising money for a great cause."
My mam, Dorothy Briggs.
My mam was diagnosed with lung cancer in September 2012 and it was ‘controlled’ until April 2015 when we were told it had spread to her lungs. Mam took it quite well but over a period of 2/3 months and her living alone, it became obvious she wasn’t coping well and wasn’t taking her medication correctly. The local district nurse, social services and palliative care nurses became involved and mam had all the equipment possible to help her cope at home. She was self-administering medication including morphine but became confused in her daily life and with her medication. She was admitted to a care home for respite care but unfortunately had a fall and broke her hip and was then admitted to hospital. It was a terrible time because we all thought we had lost her there and then. After an operation and a number of weeks in hospital it was decided she required special care and that was our introduction to Ashgate. Again we thought – hospice - end of life – it was a very scary time. Mam was very poorly
From the moment we arrived at the Hospice it just felt so right. All the staff were fantastic and fully explained what they were doing and why. After a few days mam started to look a little better and was more responsive and one day when I walked into her room she was sat up in bed looking like her old self. The nurses were always in and out, having a laugh and joke with mam and us. It was great, a real homely atmosphere; even to the extent that mam thought she was in another nursing home and kept saying that she would like to stay for good. One time when one of my brothers was visiting mam, it was a lovely day and the nurses opened up the French doors of her room and pushed her bed out into the court-yard so that they could chat and have a cup of tea in the sunshine. Soon after that day she was able to be hoisted into a wheelchair and we would push her around the beautiful gardens and sit in a quiet corner and talk or just take in the tranquil surroundings.
The gardens are always kept so beautiful. Mam loved Ashgate and everyone she came into contact with there – doctors, nurses and the volunteers who provide their time so freely. Everyone was so friendly to mam and to us. After a few weeks mam had to leave Ashgate as she was as well as she could be and required permanent nursing care, so we found her a home close to her family home. Unfortunately after a week she started to deteriorate again and 10 days after leaving the Hospice she passed away. That was on 22 August 2015. I know though that she was given care and love from everyone at Ashgate and I can’t speak highly enough of everyone there and will sing their praises to anyone and everyone for making my mam so happy during the last few weeks of her life. I will be eternally grateful to them and in recognition of the brilliant service that they provide I have taken part in the Sparkle Walk for the past 2 years (already signed up for next year) to help raise funds for the fantastic charity. My husband and other family members have also taken part and have also signed up for next year. I can only say that until you need the help and care from a special organisation as Ashgate Hospice, you don’t understand what they do. The whole experience of their care and support is so comforting to everyone that enters through the door. Each and every member of staff is truly an Angel in disguise. Thank you Ashgate from the bottom of my heart.
John and Mary
"After two weeks on the Inpatient Unit, I realised that I was in the very heart of the hospice and felt most humbled by the huge amount of tender loving care which fills its heart"
John Randles, (81), from Dronfield was diagnosed with heart problems in 2003. Having been referred to Ashgate Hospicecare by his GP, John was offered a bed on their Inpatient Unit where his symptoms could be effectively managed. In his own words, John wrote a letter to the team at Ashgate sharing his personal experience of the hospice. John said: “It all began after a bladder examination at Chesterfield Royal Hospital. Water retention developed until I could barely walk and a month of pills taken orally had not helped. My GP, knowing that a weak heart was part of the problem, arranged a visit to use the specialist treatments available at Ashgate Hospicecare.
"So there I was, bag packed and frightened of an unknown future. But I was soon calmed down by a coffee and a chat with the Activities Coordinator, who had a lovely southern Irish Cork accent. My treatment was carefully explained by the doctors. Slow but steady progress was made in the first week with various tweaks to my medication. “I felt short of exercise so asked for, and quickly received, a physiotherapist called Stephen. He put some exercises together for me with detailed information on how to get the best out of them. The exercises have rapidly improved my swollen legs and helped me to lose ten pounds in the second week, helped of course by Ashgate’s equipment. “After two weeks on the In-patient Unit, I realised that I was in the very heart of the hospice and felt most humbled by the huge amount of tender loving care which fills its heart. Besides the care, there are many regular physical checks. Bed sores, for example, have no chance to develop. The food is very, very nice, and with choices for each course, it is easy to overeat as the dishes seem designed to tempt. There are frequent surprises too such as Chantilly cream and Apple strudel! Perhaps most important is that everything is sparkling clean – there’s no risk of an upset tum from this food! “I’m going home a new man after careful treatment at the hospice.
I cannot thank the staff at all levels enough. The things I’ll remember the most are the happy giggles from staff trickling up and down the corridors, breakfast and a three course lunch served on a doily covered tray and a cheerful good morning.” Feeling upbeat and rejuvenated, John returned home but sadly died a few weeks later. His wife, Margaret, says: "Ashgate enabled John to have a few upbeat weeks at home and a holiday at Christmas which we are very grateful for. £450 was collected at his funeral which is being donated to the hospice."