Caring for someone with a terminal illness
The death itself
Cassie knew her dads condition was deteriorating and she told him it was OK to let go.
He was probably about five stone, I’d say, at this point. And he’d gone completely grey, from having dark hair, to completely grey and he just looked like a, just did not look like my dad anymore and I hadn’t had a conversation with him for probably about three weeks. I’d said things to him and he might have sort of grunted or made a sign to me but I hadn’t heard him speak to me for three weeks.
So I knew that I was losing him and that day I just I knew he was going to die and so I lay with him all day and said to him, “It’s okay. I know you’re in pain. We all know you’re in pain. We can’t imagine how bad it is, but it’s okay to let go. You don’t need to hold on any more.” And I sort of said this quite a bit to him and talked about what it was like watching him being in pain and how difficult it was to see him in so much pain when he didn’t need to hang on. And then my mum and my sister were there and I kept insisting that nobody left him. Nobody can leave the room because something might happen and so they sort of respected it for a while and, you know, probably rolled their eyes at me a bit that I was trying to be, I was being controlling again, about his care.
Sarah remembers her mothers death at home as very peaceful and very natural, with her family...
And the family… when… I mean we’re a good family. We sort of stick together. There was myself and two, my husband and two daughters at home and we didn’t even, particularly, we didn’t have much conversation about it. I mean it, it caught us out that Granny was going this way but, at the same time, I, yeah, perhaps it wasn’t a surprise. I don’t know or having realised pretty quickly that you couldn’t see how she was going to get better it was just a question of keeping her to us and her having us near and being at home and having flowers and music round. And, you know, we I put new curtains up in her bedroom window and everything and she’d taken all that in before she’d sort of taken to her bed, well, taken to her bed, couldn’t get out of bed.
And it, well, she was an immensely peaceful person actually in herself. She was a very calm person. She was sort of still waters run deep but, and that helped because it was like she was really being herself and I think when you think about it, being in hospital’s such a public place isn’t it?
So it was very natural and very organic and very, funny word, holistic sort of thing. She like was in the bosom of the family, which is where she’d been and where lots of women are anyway and it was just, often those little funny things where you think like, you know, the fact that she had the pretty curtains up that were new for her coming home and lots of flowers, which we always had anyway and then, when it became that she was in bed, you know, we’d lit candles, which was probably more for us than for her but it was nice through the night that we were with her and there was just candle light.
And, on top of that, it was the week of the snow and it meant, well we live next to a big school and the school was off so there was no traffic outside, so it was immensely peaceful and it was like my mum had ordained it somehow because she was so peaceful. She loved beauty. She loved the outdoors. It was just amazing and she’d seen the snow and on top of no traffic, the snow muffled the sound anyway. So there was like an incredible peacefulness about it and my twenty three old daughter’s put in an order for a death like it so I think that’s quite a good recommendation.
Val wanted her husband to die in peace at home but he died on a noisy hospital ward; Val found...
I would have liked to have had him home just to be peaceful because Fred was on the ward. There was no, little room available for him at all. They were all too full up. We were on the ward. We were by the nurses’ station. They had the curtains around him most of the time anyway but this particular day that he died, oh God it was horrendous. They were hoovering. They were shouting, “Do you want tea? Do you want, what do you want for your dinner?” And, and we were behind the curtain and there was Fred being injected because he was, you know, getting worked up and they were trying to keep him calm. Every time the curtains opened for somebody to come in, everybody was sort of looking. Oh, dear. That was awful. It really was horrendous and I said to them, “Isn’t there anywhere please you could put us?” And they said, “No, there isn’t. We’re sorry. All those single room aren’t available.” There was a room that should we want to stay overnight, which was in the corridor, that we could have slept there because there was a bed in there. I said, “Can he go in there please? Can you put him in there just to have a bit of peace to be with him?” And they said, “No, we couldn’t.” And he actually, died on the ward and just we had to walk away and leave him there with the curtains around him. That I found, that haunts me... sorry.
Roger was holding Teresa's hand when she died. He experienced her death as a 'terrific whoosh'.
Her, her death itself was probably the least upsetting. She was. She went very peacefully. I was holding her hand at the time and I’m convinced I felt the spirit pass, sort of. But the experience wasn’t what I expected. I would tend to talk and words that we use. You know people “slip away”. It tends to suggest something gentle, slow, almost wave like. It wasn’t. It [clap], it was a very sudden terrific, ‘whoosh’. It’s not at all what I’d expected. And it was. And I was holding her hand and it was. It wasn’t an electrical shock but it was akin to it. It was a jolt.
And a movement like that. Now my daughter was standing at the foot of the bed at the time and the way I reacted. I didn’t have to tell it. She knew exactly the way I jumped what had happened and she was on her heels. Yeah.
They, they were, the hospital they were a little bit unsure whether she was asleep or whether she was unconscious or. It was in that, you know the pulse was so weak.
Was she awake beforehand, was she unconscious at all?
Yes I would say so. They were monitoring her pulse but I realised that they, after this they came back and said, “Oh no I can feel her pulse”. I said, “No, you can’t. What you’re feeling is the ventilator”. I knew she’d gone. Yeah.
I wanted to ask you about how the, the way the health services had dealt with her death and the way she, the way she died. Had that been the best way that…
No problems there. They just. Everybody just backed off. I think one of the doctors came in and sort of said, you know, what do we want and what do we need and all the rest of it and, and a little nurse came in. Probably unofficially but you, you can’t live in a hospital chair for a couple of weeks and not build sort of relationships with people. And she just came in to give her sympathies, support and… No I think, I think at that moment in time they need to stop being professionals and be human beings.
Georgina held her mother as she died peacefully, in a hospice.
I was lucky that I wasn’t talking to a member of staff or having a chat with a friend outside the room for the coffee, gone home to get something, although actually by this time I was I’d decided I’d moved in and I just wasn’t going to go anywhere if I didn’t have to but I did need a break from sitting in the room and so it could have happened, as I say, when I was having my shower in the morning or visiting the loo, anything.
Those moments, you can’t define that is the moment. They were able to give me signs and some of which I could see for myself as to how things were getting worse and, as it happened, it was quarter past three in the morning when it did happen and I was almost asleep. I was so tired. It was it was quite an extraordinary experience because I’d been holding her, with, my little sort of couch bed. We’d had her bed lowered so it was at the same level so we were like together and I could hold her. And I’d got awfully achy from being in one position for a few hours so I’d rolled over on to my other side and I’d put her arms around me so that she was holding me, you know holding her little girl, and we were so comfortable and I could feel myself drifting off to sleep and in my head I was saying, “You really shouldn’t go to sleep.” But I’d had very little sleep the night before, if any, for a similar reason really.
I knew she was very, very ill and it had been very noisy at the hospice the night before. There’d been bells going off every five minutes and then because Mum was, needing turning, they’d come in and turn her every couple of hours. So you’re not going, it’s not going to be a quiet night and I was really exhausted and suddenly I’d heard her catch her breath. She’d done this earlier in the afternoon so that there was no breath and then there was sudden breath and I heard that and I [gasps] and I, I whizzed around in her arms so I was actually awake and with her and she died moments later.
And that was meant to be. And it was odd. I knew the moment she’d gone I was just holding her, and I knew I had to call the staff because they needed to know and I was quite, quite calm, in a way. I didn’t push the emergency button. I thought, “There’s no point.” If they’re going to come running, they’re going to think they’re needed. They’re not. It’s merely to let them know but I didn’t want to let go of her so I didn’t want to go and physically tell them myself so I just rang the bell and the night staff came in and she said, “What is it?” And I said, “My mum’s gone.” They checked her pulse and it wasn’t there and they said, “Yes, she she’s she has.” And they just left me for a while and I just sat there holding her hands, crossed legs, very, very calm, about five or ten minutes and then howled.
Poppy had never seen anyone die before and found her dads death was not as she expected and...
Susan thought her mother would have a peaceful death at home but her mother was in severe pain;...
So you know that it’s getting near to the end and I was a bit concerned so I, I rang my brother and he rang a doctor friend of his who said, “Don’t worry. It’s going to be very calm. She’ll just go unconscious and everything will be very peaceful.”
So I relaxed on that, thought everything was going to be fine. It actually happened to be a bank holiday when she was, started to deteriorate and she then started to get very, very fussed and, and her hands started to go like this and I realised she was in pain and she started, “[aaargh] [aaargh],” And I thought, “God, we must get some morphine and, and help her.” And so I rang the doctor and the doctor, to my amazement, laughed and said, “Oh dear, no, we don’t carry morphine now and I chose, anyway, not to carry morphine after the Shipman affair and anyway it, I’d have to fill out a form and take it to the chemist and get it and it all takes time and all the rest of it. I’m afraid you’re too late for the daytime thing. You’ll have to wait until the evening.”
Well, this is this was twelve thirty so I had to stay with her from twelve thirty until eight thirty at night with her really screaming and being in the most awful stress and to me that is absolute cruelty. It’s such cruelty for those doctors not to be able to carry morphine. Some people make the excuse that it’s dangerous for them to carry them in their bags because people might want the drugs and they might pinch them out of the car. Well, good gracious, what’s wrong with chaining them to a box, a metal box? I mean, you know, there are all kind of ways of carrying morphine. You don’t have to make that an excuse.
I really feel, oh yes, and then the, eventually, two girls turned up. One was teaching the other and they came in and they proceeded to sit down and fill out an enormous form with all this going on in the sitting room next door and I could have hit them, at this point stage. I really could have hit them because all I wanted them to do was to relieve her and all they were doing was covering themselves by filling out this form and this girl was showing her how to set everything up. It took such a long time and it was a nightmare and my hands were dripping with sweat because I really found the whole experience absolutely dreadful. I felt so helpless.
Emma remembers asking the paramedics if they had found her mothers message in a bottle which...
And then everything happened so quickly it all became a blur really. I remember getting the kids ready and did all those things. Dropped them off at my friend in [Town] and then the carer, there was always one carer I talked to more than the other because I, I had a strong relationship with her. Not that there was anything wrong with the other one, but it was just that. She said, “You’ve got to come, you know. I’m not happy with your mum’s breathing”. And at that point I knew. I think I knew at that point everything changed in my head.
Luckily, I was in [Town], which is only, I was about three or four miles away. And as I got there, and she said she’d called the ambulance, and she was very calm, she was great. As I got there, two ambulances were there and I thought, “Okay. Two ambulances don’t go, normally.” And it was like, even now I can describe it as it was like this out of body experience where I ran into the house, and so did this paramedic guy, and did he, all he said was, “Do you know why we’re here?” And I remember that very clearly. And I just said, “Yes”. And both carers were in the kitchen crying uncontrollably and, you know, nobody had to say anything to me anymore. And Mum had, we’d had this message in a bottle, which basically said, “I’m not to be resuscitated” and to call me.
And I just, I remember, I remember screaming, and I’m not sure why, [laughs] because you do. I remember saying, I don’t know, something about, have, have they got it, or whatever and I think the answer was yes. I don’t remember.
The next bit I’ve only ever, I think I can take it, I’ve only ever told my counsellor, because I didn’t like it. I’ll try and tell you though. Mum, they’d put Mum on the floor because she was on this wiggly air bed thing, and I remember screaming saying, “You can’t do that.” Because, you know, none of us want to be put on the floor, do we? And I said, you know, “You can’t resuscitate her.” And I, in my mind now, I threw this thing at them. I don’t think I did, because I think they’d already got it, but your mind plays tricks on it, doesn’t it? And I remember there being three women, younger than me, and this bloke, who thankfully was quite good, this paramedic. He said, “No, no, no. We’re not going to.” I remember saying, “Why is she on the floor?” And I could see Mum was dead. And I kept saying, “Don’t, just don’t, just get her off the floor, put her in bed.” And I just remember screaming and screaming and screaming. That’s all I did. And eventually, you know, eventually, it wasn’t eventually, was it? It was probably a second or two, they said, “Yes.” She said, “Yes, I’ll do it for you.”
Ruth spent several nights at the hospital with her mother because it took longer for her to die...
The worst bit was the last two weeks and because of that I really believe in euthanasia because it got so bad she was, I, I imagine that, in the old days, they died screaming in agony with stomach cancer. It started off at her bile duct and it was gradually moving across so it blocked everything. Because they kept her clean, they kept her pain… relatively pain free, but two weeks before she died I went in on the Saturday and she was pretty unconscious by then and she woke up and she was terrified.
She didn’t know where she was. She clung to me and she was in pain and I was frightened and I didn’t stay with her. I just, “I’ll get a nurse. I’ll get a nurse.” I was really frightened and her, I went down to the nurses place and I said, “You’ve got to come she’s wet and she’s scared.” Of course, it took a few minutes and that’s what made me realise that she was better off in a Macmillan unit because at home you wouldn’t get that help. But they came rushing up and they got the doctor and they pushed the medication up and she sank back again. But it really shook me up and I was saying, “Please do something. She’s going to die. She’s unconscious. What’s the point?” And they said, “We keep being asked that but we can’t.” And then my sister came in on the Sunday and the same thing happened to her. She woke up and my sister did exactly the same as me but she had somebody with her because [Name], a family friend, was with her. So the two of them so it was a bit easier.
But [Name], my brother, was there and we were just waiting. It’s so bloody awful to just wait and eventually, it went on a week, and he had, he had to go back to work and we didn’t know whether she’d die. Both of us had spent the night there several times and we you’re mixing with other people doing the same thing but it seemed to be quicker. It was a long wait and it felt like it would be a relief if she died but the week went on, all her friends came. She had so many people visit her and talk to her, but she wasn’t there. And the, all you got was a morphine driver and you had to tell them to clean her and stuff like that. It was dreadful way to end and she, I mean she used to joke, when she, before she got unconscious, because my nephew visited her and she said, “My God, I must near the end if he’s visiting.” And things like that. She was, when she was awake it was great and she, when we were arguing over the bed once, she said, “Do you mind, I’m trying to die.” She was fantastic and that, I guess, we got closer than we’d ever been. I do thank, I am thankful that that happened.
But the last week she was unconscious. It was complete, awful, she was just being, they were waiting for her heart to stop. They said her heart was strong, her lungs were strong but the rest of her body was closing down. There was good stuff. A masseur came and did her feet and things like that.
The Macmillan unit was fantastic. They kept her free of bed sores. It was superb treatment but wasted, complete waste of time. If I, if I could have stuck an overdose in the cannula I would have done. I would have done it and I would have wanted someone to do it for me but my I nearly went out on the Thursday she died but I decided that it was getting bad so I’d go and see and I met my sister there. It was so lucky and they said, “Oh, she vomited. She vomited up some black stuff.” And she was always doing that and so the, the nurses came in to clear it up and they said, “Go and wait in the waiting room.” And then they came rushing down, said, “You’d better come. We think she’s near, near the end.” And they’d cleaned her up a bit but the vomit was still around and she was laid there and she w
Maggie had just left the room when her husband died
Donald was having difficulty, he was obviously getting fluid on his lungs and he was, they had to drain his lungs a couple of times. That had happened the night before but this time it happened once and the charge nurse came and said there was something they could give him that would stop that, “Was that okay?” So they did that and then he had a peaceful night and at eight o’clock, ten to eight, probably, about ten to eight on the Thursday morning, which is the 19th November, I said to my stepson, “Right. I’m just going to go and get us a decent coffee and move the car.” And he said, “Do you want me to come with you?” I said, “No, no, no. Stay with, with him. You know how difficult he is.”
Well, he must have died as I closed the door and my stepson tried to ring me but the ceilings are so low in that hospital that I couldn’t get a signal. So when I came back, the doctor was sort of round him and my stepson son said to me, he said, “I’m sorry, Maggie. He’s gone.” And I looked at him and I said, “How could you do that to me?” [laughs] The poor, the registrar looked absolutely nonplussed and, and my stepson said, “No, no. It’s okay.” He said, “It’s just, it’s just exactly, [laughs] it’s just exactly what he would have done.” “I’ll teach her to go and get a coffee.” Died when I was out of the room.
David wishes his mum or the family had attended his father's death. Not being there has left many...
So the fact that he ended up dying in a hospice setting it wasn’t actually a hospice it was a palliative care centre at a hospital but it’s different from a hospital ward, it’s a different setting to that. That may not have been what my dad thought that he wanted but probably, probably for the care that he needed at the end that was the best place for him.
Did you personally feel that’s what..?
I think looking back now I wouldn’t have changed that situation. The really difficult part of that was the fact that my father died when there were none of his family with him and that was, that was traumatic for everybody around that situation. My mum didn’t feel that she’d said goodbye to my dad properly. We left him one night at the centre and he died during the night. And when we came back early next morning it… Well when they phoned us up from, at home, it was obvious then that he’d gone. Yeah.
Was that unsatisfactory do you think?
Definitely for my mother and I think that we as children would have felt better if my mum had been there with him because it would have made her feel differently. We were never quite sure exactly how and where and why and when he’d died, that there have been question marks about that. And it’s something my mum is still aware of and I am. And it, it wasn’t the end, the end of my father’s life was far from being the sort of, what you’d imagine as being perfect. But there are still questions to be asked about it really because we weren’t there. We weren’t actually there so we don’t know how peaceful or how calm it was for him. And wish everybody, you know, when you’ve got to die that they could have a peaceful death but it’s a question mark for us, we’re not sure.
Last reviewed December 2017.