|
Our story
|
|
|
In 2004 his wife and her mother spent six months in hospital and was admitted to ICU three times because of sepsis and heart problems. Because of the severe sepsis, she had to have both legs amputated above the knee. She is now at home and her husband cares for her full-time.
He visited his wife in hospital every day while she was there, apart from when he had the flu. His daughter, who lived some distance away, had five weeks off work and visited her mother daily. After that, she visited almost every weekend until her mother was discharged from hospital. They were also in the middle of moving house at the time.
Her daughter felt that during her mother's time in ICU it was important for her to have a sense of normality. As well as going to the ICU daily she and her father watched DVDs and ate out in order to maintain a balance between being at the hospital all day and normal life. She found her mother's transition from ICU to a general ward difficult because there were fewer nurses per patient. Once her mother was back home, she had to re-adjust to normal life, having had a routine for six months of travelling and visiting the hospital. She received support from her father and some of her friends during this time, and praised the professionalism of ICU staff.
He gave up work so he could look after his wife full-time. He received a lot of helpful practical advice from friends who'd had a similar experience. He also had a lot of support from his faith and friends from his church. |
|
|
|
They were given lots of information about surgery and other treatments, and felt the nurses were supportive to them and the patient.
|
|
|
Husband: Well there were two, I mean the consultant who was dealing with her, they called me in and gave me an explanation of what was happening and how, in order for her to have the surgery, they were going to sedate her and if she was on heavy sedation, basically they wouldn't need an anaesthetic as such because the sedation would act… would carry out that role.
Daughter: So that worked out quite well really.
Husband: So that worked out quite well. So the following day she went from ITU into the theatre and had the below the knee amputation which is what the orthopaedic surgeon had advised. Then she came back obviously but she was still heavily sedated and was very unwell really…
Daughter: There were … I mean she was stable when they brought her back in. They said that she was okay and her bloods were okay and that the operation had gone well. I mean at that point everything was fine really and it was just that she was in intensive care. She had had an operation and they were just monitoring her and it was cool. That was - I mean that is how it was for about three or four days. We just went in and it was okay.
Was she still sedated?
Daughter: Yes. They kept trying to bring her out but then I think her blood pressure went crazy so they kept her sedated and they would wake her every morning pretty much, not fully, but just check that she had come out of the…
Husband: The other thing that happened within a couple of days, because her kidneys weren't functioning properly, so they then had to put her on haemo… whatever.
Daughter: The renal kidney thing.
Husband: It's not called haemodialysis is it? Haemofiltration. And so about this time, it was sort of Christmas weekend basically wasn't it?
Daughter: It was. Was she on, I don't think she was having her kidneys done on Christmas. She wasn't you know because do you remember on Christmas Day there was that lovely, lovely nurse there.
Husband: In fact we've actually got a photograph of her in her bed on Christmas Day.
Daughter: Yes, you freak taking pictures. Yes you are a crazy person [laughs].
Husband: And of you sitting in the ITU waiting room [laughs].
Daughter: Getting irritated with you.
Husband:…with the Christmas tree.
Daughter: That was ridiculous. But she is very nice and I remember she gave me hand cream to sort of massage her hands and stuff and they were fantastic. I couldn't fault any of them. They were playing Christmas music quietly. It was all very respectful but also nice. I thought they were great. |
|
|
|
Although they have many relatives, few of them visited or gave support.
|
|
|
Daughter: Certainly a lot of people like mum and dad's, two of their best friends, [friend's names] who go to church with them, like they are like family to me anyway in some respects. And I think they were a lot more supportive than any of, like our real family, which is sad in a way, because I don't think our family were very good.
Husband: No.
Daughter: They were rubbish actually [laughs].
Husband: [laughs]
Daughter: They were terrible, shocking.
Husband: I mean they all live a long, you know a substantial distance away.
Daughter: But then occasionally you would see like these 400 brothers and sisters and extended cousins, greatly extended cousins weeping in the corner. Which was taking up the waiting room. But then there was just us. Like mum has got five brothers and sisters and only one of them really came up.
Did they understand how seriously ill she was?
Daughter: Yes, yes, absolutely. We told them. I felt a little bit irritated about that. But not for me, but for mum I think, more than anything. It felt a bit hurt for her, but then you also felt a bit philosophical, like if they can't handle it, it is their problem and you know we have greater things to be dealing with most of the time I think. |
|
|
|
To help his wife understand that she'd been hallucinating, nurses took her back to visit ICU when she was on a ward.
|
|
|
Husband: She had actually interestingly been into ITU, because she was beginning to remember things from the extended four week period and she wasn't sure whether they [hallucinations] were real or imagination and so…
Daughter: She thought she was on a ship didn't she or something about that. And it was to do with the noise or…
Husband: Well one of the big issues was that, a lot of her sort of background is Jewish Polish so a long time ago, but obviously with the sort of holocaust and stuff like that, there's that sense that relatives of hers, that she had never met, but many of her relatives would have died in that. And when she was on ITU she was in a bed near a window and when you looked out of the window you could see the hospital chimney with smoke coming out of it and that had also played into this thing about, you know, being held prisoner and you know sort of Nazi guards and things like that. And that continued to be played for a while when she was on the medical ward, they moved her into a bay away from the nurses station and she began to get better.
Daughter: But that had already happened before she went into Intensive Care the first time when she had had the thing with the nurse, like when she was on the morphine when she had already been having… that seemed to be a recurrent sort of theme throughout really.
Husband: And anyway when they moved her into this other bay again she had a clear view of the chimney, it was literally virtually outside the window and…
Daughter: Haunting her.
Husband: And other chimneys with other sort of smoke coming out. It was a hospital boiler house basically is what it was. But obviously it was very unsettling for her. And so as she began to get better, one of the sort of follow-up after care nurses from ITU came to see her and we told her about this and so she said would it help if she came down to ITU. So they actually wheeled her down and she had a little sit by the bed that she had been in, and then she said, 'oh look that is what I was remember, you know this chimney, I can remember that and wasn't there somebody' - and she sort of vaguely remembered a sort of a conversation where a couple of the nurses were talking about, you know, boyfriends and things and she remembered. So it was obvious when she was there that a lot of what she was remembering was remembering rather than imagining like [laughs]. Yes so that was quite good. |
|
|
|
She needed some balance between hospital life and normal life, and made an effort to spend time relaxing with her father when not sitting at her mother's bedside.
|
|
|
So your day to day life mainly revolved around going to the hospital, coming back?
Daughter: Watching films. We watched an awful of DVDs didn't we?
Once you got back home?
Daughter: Yes. We had quite a nice time. Like in some ways it wasn't all really negative. We had fun didn't we? We used to go shopping a lot. We spent a lot of time in Sainsburys buying nice wine.
Husband: Yes, Sainsburys was our… because we haven't got a Sainsburys here you see. Whereas near the hospital there is a Sainsburys so we spent a lot of time there.
Daughter: Buying Gourmet food.
Husband: We spent a lot of time there.
Daughter: We bought all this food and wine and came home and made lovely dinners.
Husband: And the very nice Indian restaurant.
Daughter: Oh yes. We used to eat out a lot. We did watch a lot of films didn't we?
Did you talk much about what was going on or was it just - you were just too involved in the visiting really to step back from it all?
Daughter: I don't know, I suppose we did. I don't know, it was hard at the time because you talk about it always, it is not, I think we talked about it when we first thought about it. Or something. We didn't make any…
Husband: No. I mean we had…
Daughter: Chats about it.
Husband: And we had sort of low moments and high moments and supported each other. But I mean we didn't over talk about it I don't think. But then we didn't ignore it either.
Daughter: We were quite philosophical. And also, no, actually, I mean we, like we chatted about what you would do if she died quite a lot.
Husband: True.
Daughter: I think the most important thing is like even, through the whole situation, like that guy said on, whenever it was, the Santa pixie [consultant] turned up, I think that was the best piece of advice, it is balance and it has always been balance the whole way through, in everything, even now. Balance it is just crucial, to try and get a good home / hospital life balance even. If you are visiting someone every day, it is important that you make time at least once a day to do something that is nice that is just for you, because you need that. You can't, I don't think you can function at that level of emotional intensity without re-charging yourself slightly. I think that is really crucial. And I think for anyone going through this sort of situation that that is the trick, you have got to try and stay balanced. |
|
|
|
They felt the nurses were excellent and that they got to know them quite well having spent several weeks in intensive care.
|
|
|
Husband: I mean basically the problem was then that the wound wasn't healing properly and they tried vac machines and maggots and you know you name it, they tried it to try and get this wound to heal and they were showing some…
Daughter: Who was it, the vascular nurse?
Husband: Yes.
Daughter: She was absolutely fantastic… before mum went into Intensive Care, before she had to have any of the operations, she was amazing. She was so fantastic with people. She was excellent. And she would come and tell us everything. All the time. And she was - I think she was a real comfort to you both actually wasn't she?
Husband: Yes. I mean she was the main link to the whole vascular side of the thing anyway, but yes she was our main, sort of pillar of support.
Daughter: She was amazing, yes.
Husband: And the ward - the main ward sister.
Daughter: Who I didn't have much to do with did I?
Husband: But I mean, I think various members of the nursing staff in particular saw my wife as a friend in the end. I mean they would talk to her and she felt very supported by them and the doctors were fantastic as well. I mean the consultant herself was. But her team was very good and I mean it was highlighted for me by a later incident, which was to do with taking blood because my wife's got very poor veins and she is always, even at the peak she has been very difficult to get blood from. And of course when she was really ill, it was almost impossible. And the senior house officer on the team, I mean he would spend ages just finding a vein that he could use and he was just so patient about doing it. He was remarkable really. So the whole thing was like that and it was almost like a little family really wasn't it?
Daughter: Hmm. |
|
|
|
They didn't want their relative to be kept alive if she would be brain damaged because she wouldn't want to live like that.
|
|
|
Daughter: Basically the other guy [consultant] had told us that she was very ill and probably...
Husband: It wasn't looking good, yes.
Daughter: He said, “It wasn't looking good and to be honest I am not sure she will be coming home” is what he said.
Husband: Hm.
Daughter: But by the time we got to the relatives room, which is about two, about three days later, he sort of, I mean you know we made the agreement that if she had another heart attack they wouldn't resuscitate her.
Husband: That was the other thing he said in that interview, you know that was their feeling that they shouldn't attempt to resuscitate her.
Daughter: Yes which was fine.
Did they ask you should they attempt to resuscitate her. What did you say at that point?
Husband: Well basically we took his advice and said well…
Daughter: Well there was no point was there.
Husband: No. No. We wouldn't want her to be resuscitated just to be a vegetable. She wouldn't like that.
Daughter: We had also come to terms with it, I mean really by that point, because we were sort of aware that she was very poorly you know. |
|
|
|
Their relative had a lot of hallucinations while on the ward but became more aware as time went on.
|
|
|
Daughter: She was being quite difficult at this point. It took about five days, a week for her to start… because it was strange because at the beginning when she first went back onto the ward she was like a hundred per cent psychotic, delusional, really difficult. But then each day it would almost go down by ten per cent, so in about seven days, she was practically normal. And you could see it, even at the end you would think she was normal, and then she would say something crazy. But that just went after a while and she was absolutely normal again. But she didn't remember any of the strange psychosis.
Husband: No, none of it at all.
None of it. None of the time in ITU and that first big in the general ward?
Daughter: No she couldn't remember that at all.
Husband: I think bits of it have come back since.
Daughter: Later. But it was difficult. |
|
|
|
Their relative had an infection and, when it spread, she needed to have more surgery and another leg amputation.
|
|
|
Husband: The problem was that this wound wasn't really healing properly and I suspect they might have battled on trying to get it to heal. But the difficulty was then in the other foot, she began to get some…. Basically virtually the first or second day she had been in, in November she got out of bed and her foot had slipped and just banged against the wall, the other foot, and there had been a little bruise there which sort of disappeared but never fully disappeared and that suddenly began to get worse. And eventually it was obviously deteriorating so the vascular surgeon decided that he would try a bypass on the left leg and so when they took her in to have that done, which was Easter time wasn't it?
Daughter: No. Are we into Easter now?
Husband: Yes. She had something against the major Christian festivals at this stage. In ITU as well as at Christmas.
Was she in hospital all that time?
Husband: Yes. Hm. Yes. So basically he did the bypass and at the same time they then did an above the knee amputation…
Daughter: Yes because it wasn't healing properly.
Husband:…because the wound just wasn't healing and obviously the blood supply wasn't… |
|
|
|
At first he was worried that he'd become his wife's carer rather than her husband but that didn't become an issue.
|
|
|
Husband: I mean basically I gave up work in about March, you know the March time when she was still in hospital so that I could devote myself to full time to caring whereas I think perhaps others are looking for caring support from statutory agencies. I mean we did have carers in the first couple of days but I mean, basically, they have to come at set times and my wife didn't necessarily want to go to bed at half past seven at night and things like that. So I mean basically we said, “Well thanks, but no thanks. If we need you well obviously we know you are there and obviously we will call on you”. But basically, I mean apart from the physio and the district nurse who came for a long time to continue treating the wounds while they healed up and things like that. Basically we sorted out our own support.
So I have been the main carer and obviously other people have come in and provided additional help. We have got a lady who comes and does a bit of laundry and things just to ease that burden and a young lad who does work in the garden and helps with bits and pieces. And the OT has been very good and has arranged for various adaptations to the property to make it feasible. So yes, on the one hand don't feel that you can't ask for help. On the other hand don't get pressurised into feeling that you have to accept help that you don't really want. But you know, each situation is different. So you have to learn how to do it yourself.
Yes. And what were your main concerns when your wife first came home?
Husband: Well I suppose you are moving into a totally different situation really. The difficulty is that if you take on the caring role, some how you lose the husband role, and that was an anxiety. But I don't think it has proved to be a problem. Though from time to time it is something that we talk about. And I suppose it is the practical things about how you cope with doing those practical sort of personal tasks. But again you fall into a routine and it seems the natural thing to do now. |
|
|
|
He found the practical advice from another couple useful and was later able to pass on advice to others who'd found themselves in a similar situation.
|
|
|
Husband: The year before all of this happened we went to a Christian conference in mid Wales and there was a lady there who was a double amputee, who was the wife of a minister there [place name]. And so when [my wife] was going through the experiences that she was, I made contact with him and really drew on his experiences. And they wrote a very long email setting out the things that they thought were important. You know about contacting the OT and what pieces of equipment you might need in place and what support you might need and things like that. And that was very helpful.
We didn't necessarily find that we needed all of those ourselves. But it was useful to have that sort of check-list really of things that you might need. We have now got other friends who in a sense follow our footsteps, a couple from [place name] actually and the wife again had a double amputation and I think we have been able to pass out some tips to them. |
