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Moments shared

Patients, family and supporters share their experiences of our care and their support


Sophie Gilbey

06 October 2014

Mum was just 57 when she died. Mum had been visiting a doctor for a little while as she had been initially diagnosed with what was thought to be Atrial fibrillation (AF) which causes an irregular heartbeat, then it was thought it was panic attacks, then the specialist became unclear as to the illness and decided upon the need for further tests. Following some these tests mum was diagnosed with mesothelioma. I didn’t know what this was, so I used google to find out more, but everything seems so scary when you read it on the internet.

At the time of the diagnosis, things seemed ok, mum managed and although the doctors predicted mum would only survive for one year, I learnt that Nanna has been diagnosed with the same disease years early and she lived with the illness for 11 years before she passed away. I suppose because of this we thought we had time. Ironically, though my Nanna was also 57 when she passed away, in the same year I was born, so I suppose this was history repeating itself.

Mum found herself becoming tired but mum was a compulsive cleaner so she was always busy and the house was spotless. Even up until the week before mum was admitted to the hospice, she continued to walk about as much as she could and was regularly told by the district nurses to sit and rest her legs which were beginning to swell up. Mum ignored their advice and was determined to not only keep mobile but also to complete decorating in the house.

It would be no surprise to see mum had decorated a room or papered a wall whilst I had been at college. We’d tell her to sit down and rest, but she wasn’t having it, she was determined to finish the projects she had started. It was around this time mum bought a caravan at the Butlins camp at Skegness, she wanted the family to use it after she had gone and for us to enjoy holidays there. She loved Butlins and we had been many times as children.

Mum was told she needed a blood transfusion and after much discussion with medical staff, Arthur Rank Hospice was mentioned. I had never heard of the hospice, so in my mind mum was just going to a small hospital where she would receive one to one attention. Dad immediately had reservations about the hospice, he was nervous but, I couldn’t understand why.

When the day came that mum was to be admitted, it was all a bit of a rush, we were told it was important mum got there quickly and there was to be no delay so off Mum and I went. We arrived at the hospice, mum got out of the car and into her wheelchair and we headed into reception. We were met by the cheery lady called Sarah. Given we had never been before and didn’t know where we needed to go or what we needed to do Sarah immediately put us at ease. She was very calming and it was all very relaxed given the earlier rushing about.

When we got to the ward, a lady called Ed came and greeted us. She knelt down by mum and changed her shoes for slippers. Mum was asked if she wanted to get up on to the bed, but mum was strong in her opinion that no way was she getting in bed, so with that Ed remained calm and suggested maybe a recliner chair would be more comfortable. Mum agreed and with that Ed was wheeling a leather chair up the corridor and in to the room for mum. Ed had to more everything around in the room but nothing was too much trouble, Ed just set to doing everything she could to make mum comfortable. Even then I remember mum telling Ed I won’t be stopping long, I am going to Butlins with the family. Mum stayed in the ward for two days after which she was moved to a side room.

Many of the family were still going to work and I was going to college, we were sure we had time, after all Nanna had had this illness for years before she died. We would visit and wheel Mum around the hospice and outside in the gardens. It was really relaxed and although the side rooms were a little clinical not at all like a hospital really. One day, I was at college and I had a call from the hospice, Mum was distressed and the nurses wanted me to come in and see her.

When I arrived Dad was already there and the nurses had managed to reduce her anxiety using medicine. Although sedated, I could tell she wasn’t happy so I spoke with the nurses, I thought mum needed space and as a large family, I am one of 10 children in all, the room felt cramped. I asked if Mum could be moved to the Inpatient Lounge and I was really pleased when the nurses agreed.

We were so pleased because we knew this room was important for other patients and their relatives too but seeing how mum was, we felt it was the only option. Once the bed had been wheeled into position, we turned on the television and made sure it was on the children’s channel. Mum always had the television on at home for the grandchildren, its background noise, she’d say, I like that background noise. Mum awoke and smiled. The hospice was really lovely as the grandkids were able to visit and that I know gave mum great comfort, she loved hearing their voices and hearing them play together. For mum everything was about the grandkids.

We were amazed as the nurses made us all so welcome. Ed would take the children off to the visitor’s kitchen and the kids would often return with ice cream or a peeled orange having made nannie things in the kitchen. It really took the stress out of looking after them and allowed us to be there for mum. It is lovely that the kids are made as welcome as the older people and it provided us all with such a homely environment to be in together. As a large family, having the additional space in the lounge was lovely. The nurses told me I had made the right decision for my mum and that was really nice. It was nice that they listened to me and I was glad mum was happier.

They always listened to you; your views were always taken into account. I even saw dogs on the ward, we had a dog and a cat, our dog was far too boisterous to bring into the hospice, but it was nice to see the dog and the grandkids love placing their fingers on the glass of the fish tank and following the fish around. It was nice to have animals and living creatures around. Once mum had moved into the lounge, we felt the end was getting close and we didn’t want to leave here, so we were really pleased when we were told we could stay overnight. Dad had slept at the hospice when mum was in the side room but it was only now that we all choose to stay. The nurses would ask us how many blankets we needed? Whether we needed help making the sofa bed?

The nurses noticed it was really important for my mum to hold my dad’s hand, so they even wheeled a bed into the room for him so he could be at the same level as her. Nurses noticed dad wasn’t eating well and they even made his meals to ensure he ate whilst he stayed by mums side.

It seems strange to say this but staying at the hospice was like having a sleepover, we’d sit up and talk about our mum, reminisce about the time we spent together, laugh and joke and hope that mum could hear all the things we were saying. It felt odd to laugh, you felt sad knowing the memories would be all we would have of mum soon but it also felt like whilst being at the hospice the family had been able to come together, form a stronger connection even and that was all because of mum, because we were all there for her.

The visitors kitchen was not only important for the grandkids, it was also important for us. You found really lovely things in the kitchen jellies, cereal, the cupboards were fully stocked; it really was home from home. As the days went on though, we would pop over to Sainsburys in the morning and buy things for breakfast that we could cook or prepare in the kitchen. It felt a bit like we were on holiday, all taking it in turns to prepare the meals or plan for the next shopping trip. It was in the kitchen we made good friends with other visitors and other patients too.

Nurses told us it would be just days now and at some point soon just hours. I said to Ed, ‘I know she’s going.’ I remember the conversation so clearly. The nurses were so good, so reassuring, so caring. Even when mum couldn’t talk, they talked to her, they made her smile and even though you knew she was struggling, it meant so much to see her smile. Every morning, we would wake up and check mum and every morning she was still breathing. Some nights we thought the end was close so we would call other relatives and then she would fight on for another day. We felt mum was waiting for something but we didn’t know what.

At 4.57am on the 1st March Ed checked mum and she was still with us, but at exactly 5am my sister and I had a very strange feeling and we just knew, mum had gone. The camp opens at 5am on the 1st March every year and we would still like to think she was waiting for Butlins to open and that is where she has gone.

The support didn’t end here for my family though, we all crowded round mum none of us wanting say goodbye. After a while the nurses moved mum to another room and all the family were invited to see her. I didn’t go, I didn’t know what I was going to say, I am not very good with words and what could I say to her. I stayed in the lounge and then Ed came by. She saw me crying and came in. She put her arm around me and said ‘Would you like me to come with you?’ I said yes so she told me to wait there and she would be back in a few moments. When she returned, she explained what to expect and then with dad I walked in. She looked so good; she just looked like she was asleep. That was my mum, that how I remember her, just asleep.

When I look back at the care my mum received, it was all done in our knowledge we knew what the nurses were doing every step of the way, we were consulted about everything. The family would often be invited to meetings with various members of staff. It wasn’t although we just sat and waited for the time to come, we were involved ,we knew where things were going and what changes were going to take place, we were told what we needed to look for and were told to call a nurse if they was any change. Nothing was every too much trouble and all the staff had time for you. We must have called then hundreds of time but every time they came quickly and reassured us or acted on the change.

Their care meant the whole family could be together and by being together and being able to stay together we didn’t miss a moment. Even now four months after losing mum, me and my family continue to received hand written cards from the hospice and they mean so much. We know how many people they care for and we are so pleased mum was able to be cared for there so getting a card is really nice, you know people are thinking of us. I saw Ed just the other week, I know she has seen lots of patients and their families since we were here but she remembers everything it is really quite amazing.

Sophie has now set herself the target to raise £1100 for the hospice to enable the charity to fund a syringe driver, she remembers how important this equipment was in helping her mum with her pain control and she want to make sure other patients have access to this equipment in the future.




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