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Having somebody for me

Sharon Daley has been receiving hospice in the home support, which is now more important than ever for her since she decided to stop chemo a few months ago to have, as she says, ‘quality of life rather than quantity’.

Her hospice clinical nurse specialist, Emma Mazerolle, has got to know Sharon and her family really well through her regular face to face visits, and they all know they can phone SinglePoint whenever they need to. Sharon shares her story...

 

It's having somebody for me. I know Emma is there for my kids as well, but her primary focus is me, my needs, and that makes me feel better. Sometimes you just need somebody to be on your side a little bit. It makes me feel like I'm not ready to give up yet. 

Emma has been my sort of anchor. If I ring her, she always rings back. She rings me up and says what's going on, what's wrong? And then she'll talk me through everything and then that's it, whatever is worrying me is solved. That makes me feel great because I’ve got somebody else. 

I don't want people to make decisions for me or anything because I'm quite capable still of making decisions, but it's nice for somebody to turn round and say right, they’re giving me permission to rest or they're giving me permission to do what I want to do.

Emma is absolutely brilliant. She has been by my side every step of the way. I’ve only got to ring and it’s dealt with. I feel so much calmer in myself.

Sharon sitting on a bed at the hospice

Sharon at the hospice

I know I'm doing OK. If I get another year, I'll be lucky, but at least within that year, I know that I can give good memories to my grandchildren, like sitting with an ice cream on the beach together. And now St Helena is part of the memories.

It was just easier for me to stop the treatment so that I could have quality of life rather than quantity and it gave me a chance to be around my grandchildren and my children. We've been able to make the memories, so it means that when they get older, they’ll remember me now. 

The main thing is the communication and since I've been with Emma and the hospice, it's been brilliant. I feel so much calmer in myself. Emma was my first contact with the hospice after my GP referred me. She's got so much strength and she knows things, she knows how to deal with things. I had problems with my medication and I rang her up and it was sorted straight away within half an hour. No upset, no stress. And that was it and she rang up after to make sure everything was tickety-boo.

For Emma to do what she does, she just stays so calm. It's like, ‘okay, that’s wrong, what are we going to do about it?’ It makes me feel like I'm not ready to give up yet, and that's what she does. 

When she said about me going into the hospice, I was absolutely terrified because I thought this is it; because that's what you think of hospice, isn't it? And then I thought I’d see little kids and I'm not the type to see kids go through chemo or cancer, so all those things added up.

So by going in, a) they sorted out my medication and b) they made me feel it's not a traumatic place at all. It gave me a chance to be me and talk about my fears, just chatting with the nurses and the family support girls from the hospice. They were genuine. They genuinely want to look after me. They genuinely care how I'm feeling. It's like they recognise what you need and what you don't need, and they turn around and go, if you don't want to talk it’s absolutely fine. But you end up talking and you don't realise you're talking. It was only when I went into the hospice, it was the recognition of what I was feeling and they knew that I was scared. 

It was the fear factor of going into a hospice but once I was in they were popping in and talking to me and saying 'are you ok' and it was just nice because I could say yes or no, I’m feeling like this today. I didn’t have to hide anything. I didn't feel scared anymore. I’d go in whenever because that's what it was like. 

Within two days I was relaxed and sitting there doing my diamond art with the nurses. Even if I wanted to go into the garden, I could do that and it was just nice sitting out there by the pond in the evening.

My dog Lily came in and she was fine, everybody was fussing her, she was saying hello to everybody. She's kept by my side every step of the way. She's never left my side. She always knows when I'm ill because she just lays down with me, and she also gets me out for walks because if I didn't have her, I wouldn't go out at all except to my daughter’s. The nice thing is when I was in the hospice that she was welcome in the hospice. There are a lot of people there with animals and even if they can just bring them in just so they can say goodbye or, for me, it was me knowing that she was okay. I know she would be alright with my daughter, but I wanted to see her so I knew that she was okay. 

That's another thing, it's all a worry; is the dog alright, are the chickens alright; it's just constant. But by bringing her in, I could see physically see she was just happy which made me relax again. Lily went out in the garden at the hospice and played with my grandchildren. 

When I came out of the hospice, my grandson said ‘nana, I'll go in there’. He’s only five and he even he said that he would be happy to go to the hospice. It didn't bother him, either of them. They were running around. Nobody told them to stop. Nobody told them to be quiet. It's a good place. They were playing with the Wendy house and then they went on the swing and they were really relaxed.

Nurse Emma on a home visit

Emma, clinical nurse specialist, hospice in the home team

I think when I come to the end, they can come and see me and, hopefully, it's not going to be something that they're going to remember and fear. They're going to see it as a positive rather than a negative. I think that's important because it was good for me to see that they were running around, and it's also good for them because they were not scared. 

Emma said to me ‘what do you want to do?’ I want to die in the hospice where I’ve met people that will remember me and I will be at peace when I die. So it means that doesn’t worry me so I don't even think about dying really now because everything's sorted for me. And I couldn't ask for a better place. 

When I went in, I was a scared rabbit in the headlights but by the second, third day it was just natural and I didn't even think about me dying. It was just that is what I want, desperately what I would like. I hope I can, I understand beds and everything else, but I hope that it is there where I know I can die in peace and my family will remember how I've died. I know I can die in peace and my kids will feel peace as well.

Since I’ve been back home, we’ve been making memories. I love elephants and my family got me tickets to feed an elephant and spend half a day with the elephant at Windsor. We're very much into the theatre in London as well so we went to see Wicked the other week. It's just things like that, that we've been doing together.

We go down to the caravan in Yarmouth a lot with the grandchildren and we take them down on the beach because they've got the seals down there. They’re all having their babies now so we can go and see the baby seals. They’re really cute, massive big eyes. When we go down there, we always go and have a caravan ice cream down on the beach. We always have our ice cream on the beach together, doesn’t matter how cold it is, we have to go for our ice cream, so they're all good memories.

I know the hospice is there for me over Christmas time so I can relax and that reassures not just me but my children too. The first thing they say whenever I’m not well is ‘you need to speak to the hospice and get some help’ because they know the hospice has a calming effect on me and know how helpful they are to me. 

I never knew half of what the hospice does and it’s only now that I’m using them I understand what their role is and how brilliant they are. The fact that I can pick up the phone anytime over Christmas and I don’t feel bad because sometimes it’s just having a voice by picking up the phone and saying I’m feeling like this. They are there for me.   

Sharon creating diamond art at the hospice

Sharon at the hospice working on her diamond art

On Christmas Day I wasn’t very well and my daughter rang, I think she rang, SinglePoint. I don't remember much about it, I'm afraid. I was really sleepy and I couldn't keep myself awake at all. I managed to get to Christmas dinner, I think, I’m very vague. 

They got me in the hospice on New Year’s Day because they thought that I was actually going to die, which was quite a shock to me. Then I came in here [the hospice] and I don't know if it's because it's the peace or whether it's I feel safe, I don't know what it was, but the following day I started turning a corner. I started eating a little bit and they started sorting out my medication, then they're going to try and get me home.

So that's good because bearing in mind, I was at the point of dying to the point where I’ve come in here and they've made me turn that corner because I wouldn't have done it without being in here.

Without SinglePoint and the hospice being there over the Christmas period, I wouldn't have survived but I survived because of the way they are and the way they treat me.

They're going to also sort out a bed for me at home downstairs so if I want a nap in the afternoon I can have a lay down in the afternoon. I need to go home. I'm not saying that I want to die at home because I think it'd be too lonely for me but it does mean that I have the choice; whether I go home or whether I stay even at the end or near the end, I can still have that choice of do I want to stay home? 

And also it stops the kids getting afraid because they're not afraid of coming in here. As soon as they come in, Jude just runs up and down straight away, puts the telly on. That shows you how relaxed he is around me, it doesn't bother them at all.

The first time my grandchildren came in, I must admit I sat and cringed because they were making so much noise. And then this lovely lady came past and she started laughing as well. So I thought, oh that's okay, it can’t be too bad.  

Sharon and her family on Christmas Day 2021

Sharon and her family on Christmas Day 2021

You are aware there are people in here that are hurting. You are aware of people being in pain, especially if they're losing somebody special, losing their loved one; I think they don't want kids running around laughing and joking. They may after, they may look at it differently, but at that particular time, I think they don't want that. But my grandchildren, they're very susceptible to it, they know when to be quiet. They are just good kids because that's the way their mum’s brought them up, she's just amazing my daughter, she's brought them up to respect other people and to pick up on people's views. 

We want to help St Helena Hospice, that's all we want to do, we want to get out there and help. You've given me three years in my life, and nobody can take that at all. This building, the people, have given me three years of my life. Yes, I do get upset, I'm human, but if I can do anything and I can leave a little bit of a legacy then that's what I'm going to do if I can.  

Sharon died in January at the hospice, where she wanted to be. Her daughter, Sarah, describes the support the family received over the Christmas period:

 

We called for advice for mum just to make sure we were doing everything we could to help her. The team were very helpful and we had support over the phone. Mum then got worse on the 28th December and Emma came out to my home to see us, and we realised this was different; mum was incredibly ill but she wanted to spend New Year at home. Emma and the hospice worked together to get mum's medication stabilised enough for her to be at home and arranged a bed to be ready for her.

We had constant support from Emma and SinglePoint. The support is incredible. Normally I would be terrified and tell mum to go to hospital but knowing Emma and the hospice/SinglePoint were always on hand to help was so encouraging.

It turns out New Year’s Eve was the last evening I got to spend with my mum in her home and knowing that I had a whole team of people behind me allowed me to just relax and enjoy being with mum. We had a little drink to toast the New Year, and I knew in the background all these amazing people were working hard to ensure my mum would be well looked after if we needed anything.  

This story may not be published elsewhere without express permission from St Helena Hospice.

 

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