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A year after Josephine died, her daughters Linda and Alison discovered their mum had shared an inspiring and uplifting account of her early experiences with St Helena Hospice, which you can read here. As part of our Hope Together Appeal and ahead of Dying Matters week, the sisters share their experience of hospice care, and why conversations about end of life and making choices matter.
Alison: "Ever since she was diagnosed, throughout it all, she was so positive. It was only two days before she went into The Hospice the second time, that she actually cried to me when she couldn't get out of bed.
"She said, ‘this is it now, isn't it?’ It must be hard to say that things are deteriorating.
"I'm sure she did have tears with her very, very closest friends, I hope that she did cry to them, and I'm sure she had tears on her own, but for us it was as late as when she knew that this was it and it was just time on our side. That's how strong she was.
Pictured: Linda and Alison
Alison: "But afterwards she was just out there; she said ‘I'm filling up my days, I don't want to sit here and mope’. It got to the point that my sister and I had to book an appointment to go and see her! She just loved being with people; mum was a really sociable person.
"I used to drop her off and pick her up from the day therapies group sometimes so she’d drag me in and she'd introduce me to everyone. At the very beginning she was a bit doubtful about it all because I don't think she wanted doom and gloom but after the first time she said, ‘oh it's great’. She enjoyed it."
Linda: "Mum took me to the day centre and I could cope with that; my sister is the stronger one. That went OK and it was lovely. I didn't really have to link the two together at the time, so that was OK.
"But my first reaction of going to the hospice… I just walked in and I just had to walk out. I was in absolute pieces, absolutely just couldn't do it. I thought no, this is silly. Mum wanted to take us there to prove that it was going to be OK and that's where she wants to go.
"So I sat on the bench outside and a lovely nurse came and spoke to me and we ended up going back in holding hands. At first, my reaction was this is such a sad place but I've got to do this because this is mum's wishes, this is where she wants to end her final days. So we did look around and when we came out I said ‘it’s very calm’."
Alison: "Mum knew what her wishes were so putting that into a book wasn't a problem. We did it as a family. Mum just had everything organised and she used to tell us ‘this is this, this is there for when I'm gone’.
It was Josh who told me now was the time to call mum’s best friends who were abroad at the time to come home. He was honest and supportive, especially in guiding us when things deteriorated quickly, and ensuring mum’s plan was implemented. She could talk to him and tell him everything. When he talked, no matter how hard it was, she listened.
"She was really worried about the Hospice not having a bed and we spoke about that right at the beginning with Josh. We were honest. Mum said that she'd rather be the in The Hospice knowing that she was being looked after so the onus wasn’t on me and my sister. It was what she wanted. She had always been positive for us. She used to discuss everything with us so I can't say there was anything really a shock, there was no, oh we didn't think about that because mum had arranged everything."
Linda: It helped to have her wishes written down. This is what she wanted to do and it was our duty to abide to that; mum looked after us all our years and she always used to say ‘as big as you are, you're still my baby’. I knew where all the finances were but it did make it easier knowing that she wanted to go to the hospice because then suppose she hadn't talked about it but did really, really want to go there; how would we have known what to have done?
Linda: "After going there to look around that very first time with the shock of it all, when mum actually got taken in for her first break I found it completely different to that very first experience. I suppose I'd been in there and I had a little idea of where things were. Although it was really sad because mum was in there, we had some fun times. People think you're not going to laugh there but we did, even in mum’s final days we still laughed together.
"It was just before Christmas and a choir came in and that was lovely to hear. The rehab girls brought around a walking frame which mum didn’t really want to use so the girls took it away and decorated it with tinsel and she was as pleased as punch with it."
Alison: "Mum went home and we had a lovely Christmas. She was adamant that she was going to have a good Christmas, and she kept saying ‘I'm not going to die because I don't want to ruin anyone’s Christmas’. And this is typical mum. Mum was in control of so much it's unbelievable!"
Linda: "We had an amazing Christmas and her birthday is on New Year's Day and mum and dad’s anniversary is on Boxing Day, so we had everything in that short space of time. We managed to celebrate Christmas and she said ‘this one of best Christmases, I wish dad was with us’. I’d said if she was feeling up to it, I would do dinner for everyone on her birthday; she really wasn't well but we had an amazing time. My children came round and she saw the grandchildren as well so that was lovely.
"At one point it was just all the girls, so we sat round the table with all these generations; there was my mum, there was me, my sister and her daughter, my daughter and her daughter. We just had an amazing time and she had that experience because she was at home."
Alison: "I remember mum was in bed and she needed help to get out; from that point I'd say she was bed bound. She was just lying in bed and she cried and said ‘this is it’. That was the only time mum showed just a little bit of fear factor."
Linda: "I think in 24 hours it was amazing what Josh managed to get done. It seemed mum kept it very, very quiet right up to very last. We knew she was really, really poorly because we used to go on a daily basis, but she seemed to go downhill pretty rapidly.
"It was very sad when she left her home to go in the ambulance. We could see her face looking up at the building as if to say I won't be coming back this time. But in another way, it was comforting, knowing now that it was mum's wishes to go to the hospice."
Linda: "When mum was awake she wanted to talk, well mum would talk to anyone, mum was such a friendly person. It was quite funny because within 48 hours she'd found out something was going on; some of the nurses were going to do a sky dive, and she wanted to donate straight away."
Alison: "I think it's just her belonging and feeling part of it all and that really helped her to get her teeth into something."
Linda: "Mum was very much up for raising money for the cuddle bed too, that's why when we had mum’s funeral, the money collected went towards the cuddle bed, and my sister and I put some extra money in for it too. I just wish it had been around with mum. Just to lay by someone and hold their hand or have their head on your shoulder; just that close contact."
Alison: "You see the young children that are there with their parents and mum kept saying, ‘isn't it lovely that someone would be able to lay in the cuddle bed together’. Mum always said, what hurt her in The Hospice was seeing the youngsters, people younger than her, who’ve got children, young children. She’d say ‘I've had a good life’…"
Linda: "She’d see a youngster there and she would say ‘I'd give my life like that for them to be okay’. We knew mum was already sponsoring a nurse every month and we carried it on until the anniversary of mum and I think mum would have been pleased with that."
Alison: "The Hospice was just out of this world. My sister and I stayed there for whole fortnight without going home. Josh still came down and saw her, which was lovely. The Hospice itself was always welcoming and had a vibrant feel to it. It never felt a sad place to be although we all knew what the final outcome would be. There was always much laughter and chatter amongst us all. During mum’s stay we became familiar to other patients and their relatives and we would find support in them as we shared our stories. I hope we helped them too by listening and taking an interest in them.
"We were able to make mum’s space hers so she was surrounded by many photos of her loved ones. Her friends came in and brought their dogs. It was a lovely place to be. All the nurses and staff were fantastic and having others around us meant we had laughter, we had fun."
Linda: "She was quite poorly and it took the nurses quite a bit time to get her up and dressed to make sure she was warm and then into a wheelchair, but Mum was determined she wanted to do it. She just wanted to feel a little bit of a breeze and see the garden as if to say I've been outside and it's another tick off the list. It was a cold day but we were out there for 10-15 minutes and then it took just as much time to get her back into bed, but she was pleased she’d done it."
Alison: "It's just typical of The Hospice - there's never anything they can't do, there's never a sigh or something because they're busy. They just got Mum ready, wrapped her up, and we took her outside. To see her face when the air hit her! We went and overlooked the pond and mum closed her eyes and there was a lovely smile on her face. I don't know what she was thinking and remembering but that meant an awful lot to her."
Linda: "She loved it when the bluebells came up. She loved the warm weather and she loved the sunshine, so her favourite seasons were spring and summer. Spring is the time all the lovely flowers come out like the daffodils and the snowdrops. She always loved the sunshine and to be out in the sunshine when she was well enough. She would still go sit under the parasol so she just loved being out in sunshine."
Pictured: Josephine with the family dog
Alison: "He was on mum’s bed all day, every day. Even when our friends brought their dogs in, he just didn't shove! The nurses used to say to him ‘we've got to change the bed, get off Paddy!’
"The day she passed away he stayed with her as they moved mum to the resting place and Paddy put his paw over her hand and it's like he was holding her hand."
Linda: "He didn't used to sit on the bed for 10 minutes, he would sit on her bed for hours and hours, it was as if he knew. Mum used to sit and stroke him, it was a real comfort. He would position himself where mum could stroke him."
Alison: "Everything was perfect really, if you can have it perfect.
"On the last weekend she wanted to see Dancing On Ice and wanted a pizza takeaway. Olivia said to her ‘are you going to share mine?’ and mum said ‘no, I want my own and I want the biggest pizza!’ So we were all around her bed eating pizza and mum had the largest Hawaiian pizza, holding a vomit bowl, and she took one nibble out of this pizza! It's just doing things like that; just what you're able to do to make it that much more normal for people. Such lovely memories right up till the end."
Alison: "They all became our family for that time; an extended family we had at the hospice."
Linda: "Everyone was amazing; the domestics, the cooks, everyone was brilliant. My mum had a thing for rocket ice lollies for a couple of days and if they ran out, they would pop out and get some more for her, they were so good. There was one doctor who would sit with mum and hold her hand, and the eye contact between her and my mum! She’d sit and stroke mum's hand and chat to her. Sometimes we’d all be together and then sometimes she’d say ‘I need to talk to mum by herself now, is that okay girls?’ and we’d go off down to the lounge.
"As much as the staff were 100% for mum, it didn't just stop at mum, they helped us as well, they were so kind. It was ‘right girls you need to get some sleep’ or ‘what have you eaten?’ They were all concerned, and sometimes a nurse would come down and just sit and have a chat with us for half an hour just to see how our feelings were and how we were coping, just as much as how mum was coping.
"It was a relief for all of the family because we had the time to spend with mum and have some happy moments. We didn't have to worry because that worry was taken away from us so we could manage to have nice times. By a person going into The Hospice, all your troubles are shared.
"We were all included apart from when there were times when maybe the chaplain or the doctors come round and they did just need time for mum to talk. I don’t know what was said but we did get told that she wasn't frightened of dying."
Alison: "Mum really connected with Vickie, the chaplain. Vickie had interlinked three wooden hearts and left them for us next to mum’s bed to have one each. Mum took her heart with her, holding the heart on her journey, and we still have our hearts."
Linda: "We were all sat discussing what we were going to have sandwich-wise, which is ridiculous when your mum’s lying on the bed potentially going to go at any time. My husband went and got some from the canteen and we took one mouthful of our sandwiches, and all of a sudden, the nurses must have noticed something different in mum and they quickly pulled the curtains round and said it’s not going to be long. And we thought isn’t it amazing, we’ve sat with her hours and just as we’re talking about sandwiches, it was as if ‘well they’re laughing, they’re having a little bit of a joke, I can go now’.
"We didn't miss her going because the sandwiches all got thrown up in the air! It just seemed so funny at the time, that we were all worried about what we were going to eat and it was as if she knew that we were laughing and it was her time then to say goodbye."
Alison: "When she actually passed what was lovely was that mum took her last breath and it was the biggest, biggest smile on her face and my sister and I just looked at each other and said, dad’s taken her hand, and it was the biggest, biggest smile. Everything about it was… can it be good? It was good in the best possible way it could have been.
"Her funeral was one of the best funerals I've been to because it was so uplifting. We covered the coffin in her favorite flowers. It looked so beautiful. We had the song from dad’s funeral. I can remember sitting there thinking why am I not crying my eyes out? But it was so uplifting and was mum to a T."
Linda: "She’d always say ‘don't look back, look forwards’. She was always honest with you. Such a lovely mum. She was a truly special person who lived in hope even when they were doing all these tests, but she always used to say if it was helping somebody else, she was happy to do so. Mum was always prepared to give everything a go at 100%. I hope when I’m older I will be like my mum to look forward and be positive."
Alison: "I am so proud of her throughout it all. I think more people need to be like her and enjoy what time they've got."
This story may not be published elsewhere without express permission from St Helena Hospice.
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