Interview 18

Age at interview: 37

Brief Outline:

Her best friend spent two weeks in ICU. She was the closest person to her, visited her daily and is now her main carer.

Background:

Advanced ambulance assistant, divorced with one daughter. Ethnic background/nationality: White British.

More about me...

In 2001 her best friend spent two weeks in ICU following surgery for bowel perforation. When her health deteriorated she was transferred to an ICU in another hospital and had to have further surgery. After a few very critical days she began to improve and was later transferred to a High Dependency Unit where she spent a further 2 weeks. After about four days on a general ward she was transferred back to the first hospital and also had rehabilitation for several months. During this time, she became her friend's next-of-kin because her friend hadn't any siblings and her elderly father lived some distance away. 

She took four weeks off work and visited her friend daily while she was in hospital and, when she was discharged, helped her with housework, shopping and cooking. She still looks after her friend and is now her registered carer. Her friend often has mood swings, feels depressed and doesn't want to go out very often. Although their friendship has changed, they see one another almost daily and are still very close.           
 

After saying her goodbyes to her friend, all she could do was wait until after the operation for further news.

Then one morning, again, early morning we got a phone call from the hospital followed by a phone call from her boyfriend followed by a phone call from her dad to say that she'd had a turn for the worse in the night. That she was having problems breathing again and that everything seemed to be going wrong. Her kidneys weren't working properly, her liver wasn't working properly. Nothing was working properly, she was needing. By the time we got to the hospital it was obvious that there was problems with her blood pressure. She herself, lying in the bed, had just totally changed. She'd gone from being reasonably slim to being blown up. She was full of fluid. She wasn't passing urine and the doctors were really quite concerned. They came to us at one point during that day and said, you know, 'She could possibly die. She's got like a less than 50% chance of surviving whatever is going on and we need to find out what's going on.' And the only way that they could find out what was going on was to open her up again and see what was going on inside. 

By this point she'd deteriorated so much that they'd got her on a different ventilator, an oscillating ventilator. And it was bouncing her around the bed, not that there was much room in the bed for her to bounce around in because she'd swollen up that much she filled the bed. They said that they couldn't take her to theatre that she was at too high a risk to actually move. So they decided that they were going to bring the theatre to the Intensive Care Unit, which they did. They brought the operating table, the lights, the monitors, the machines, everything. And they cleaned a side room out, sterilised it all and took her in there. 

Three different times they gave us that they were going to start operating. The first time passed by. She wasn't stable enough to come off the oscillating ventilator. The second time came and passed by. She still wasn't stable enough. And then they decided that they didn't think she was going to get any more stable than what she was so they were going to do it because if they didn't she was going to die. So we all went in said our good lucks and said our good byes [pause].

We were just playing a waiting game after that. Just waiting for the doctors to come out. Everybody that was close to her was just there [pause].

And we just all sat in there. There was two waiting rooms, two sitting rooms both with only like three or four seats in each one. And there must have been about twelve of us [sigh] just waiting for the doctor to come out. Every time the door opened, there were some other family in there as well who had somebody in the intensive care and it was just horrible. It was just, nobody wanted to talk.
 

She took in her friend's toiletries, massaged cream into her hands and feet, and sat watching her progress for several weeks.

We got there and we were ushered into a waiting room in Intensive Care and what seemed like forever and ever and ever before anybody came out to see us. And they just said basically what had been said to us from the local hospital, that she'd become distressed with her breathing, that she needed a ventilator. So she was transferred there and that. They were just sorting her out and the doctor was with her. And we could go in as soon as he'd sorted her which seemed again like ages but I know it wasn't now, but at the time it did. It was just, felt like eternity. Nobody really knew what was happening apart from the fact that she'd started having problems with her breathing and needed a ventilator. 

The doctor came out, told us that she was poorly and that like she was on this ventilator. Explained to us that kind of, intensive care is like a really, really scary place, there's lots of things going on and lots of machines and lots of noises and staff floating around but we could go in two at a time to see her. So that was the start of the following few days. We went in and out two at a time. Because my friend had no other siblings I became the person that was there all the time, that took her toiletries in, that sat and rubbed cream into her hands and feet and brushed her hair and sat reading to her, chatting to her, playing music, with everybody else - her partner, my husband, her son that had turned up by then, her ex-mother-in-law. 

Then the days progressed and although she was still, my friend was stilling needing dialysis and insulin and morphine and everything else that was going on, she seemed to be making progress again. They started reducing her sedation. She was still in the side room that they'd operated in. And she was coming round so much so that the staff were letting me suction any sputum out of her mouth and she was spitting out because she couldn't swallow very well because of the tracheostomy. She seemed alert at times. Her eyes were open but it was like there was nobody there. At other times she'd be staring out the window but wouldn't be staring out the window and she'd be giggling when the machines started alarming because she was holding her breath and fighting the ventilator.
 

Although she was very weak, gradually her friend was able to sit up, stand, walk with a Zimmer frame and have nutritional drinks to help her recovery.

When they moved her to the high dependency unit she still wasn't able to weight bear. She'd started having sips of water and spoons of ice cream but she was getting fed through a tube in her tummy. You could see the fear in her face when she moved because she was losing the staff that she'd become used to seeing. And the staff were fantastic in high dependency unit, you know, but there wasn't somebody sat at the end of her bed all the time. And they were making her do more for herself. They were making her pick her own cup up to have a drink and she was spending more time in the chair. And it wasn't a big comfortable reclining chair. It was an armchair and they tried to cut the visiting back as well [laughs]. So I was getting kicked out more often and spending less time with her. 

She became really, really, really depressed. So much so that she'd made the nursing staff aware of the fact that she didn't want any visitors, nobody at all, not even her dad. And that went on for three days. I'd phone the hospital. 'How is she?' 'She's ok but she still doesn't want to see anybody.' And she couldn't really even speak at this point. It was all lip reading and nods and shakes of the head to questions because they hadn't changed the trache round to the one with the cap on so she could talk. The staff could understand what she was trying to say sat at their desk but we couldn't understand what she was trying to say sat at the side of her. But like the nurses said, you know, 'We see this every day and day after day and although we can't always understand what they're saying we get there in the end. You know and they explained to try and ask questions that only wanted yes or no answers and you know try not ask or say anything that requires her to say too much because she gets annoyed. She gets, she got frustrated, so frustrated with herself because we couldn't understand what she was saying, which was probably one of the many reasons why she wanted some time on her own. 

After a couple of days she agreed to let her dad go in and then the day after she agreed to let me go back in but she still didn't want to see her boyfriend or everybody else. I never really found out for sure why she didn't want to see anybody. And at one point the words were lip-read, they were spoken to be lip-read by us. 'I'm pissed off' [laughs]. 

So days progressed. She continued to improve. She spent more time out of bed. The physios came to see her to try and get her standing again with a Zimmer frame, which she wasn't very impressed about. Yeah she was what, thirty-eight and using a Zimmer frame to stand up. And she ached all over. I do remember her saying, you know, 'I'm tired. I ache. I want to go back to bed.' She'd got a pressure sore on her bottom by this point because no matter what the nurses did in either ICU or even HDU they couldn't get her comfortable. When she was in ICU and she was so big in the bed, there was no way that they could put her on her side or anything and she'd got a sore on her bum which she wasn't impressed about [laughs]. But it was a sore on her bum. It wasn't important. She was getting better. She started eating semi-solids and stuff and drinking them horrible carton stuff, supplement drinks.
 

Her friend's son didn't understand how seriously ill his mother was until afterwards and stayed with his grandparents during that time.

It must have been quite a shock for her son?

It was, but being 15 nearly 16, although he understood what was going on, I don't think he understood the enormity of the situation, the fact that his mum, you know, could possibly die. I don't think that sunk in until she was probably weeks later and getting better. 

Was it explained to him or did you feel maybe not to go into so much detail and hold on to some information back to protect him? 

He was aware before he went away for the weekend that she was going for a sterilisation procedure. And we told him that there were some complications and she'd ended up with these problems with her breathing and she needed the ventilator. And that's why she was in hospital and she was sedated so she wouldn't be distressed. But it seemed just to go right over his head [laughs] really, you know. He was concerned because it was his mum but I don't think he really understood or took it all in. It was quite strange because although he knew his mum was ill he didn't particularly want to be sat at the side of her. He was quite happy to sit in the waiting room and be told by everybody else what was going on. And obviously we didn't that we wanted to force him to go and sit with her at all. So that was what happened. His days were tried to be kept as normal as possible. He was at college at the time so he continued to go into college. He was staying with his grandparents who only lived a couple of doors away from his mum and his house. So he could go home if he wanted to and he slept there and ate there and went to college. Came with them to the hospital in the evenings. 

She had to find her friend's son, tell him about his mother's illness and bring him back home as soon as she could.

I started worrying about her son, being away on holiday. Remembering her voice about threatening to kill me if I got in touch with him but decided to try and find where he was anyway. So we went down to her house to see if we could find any paperwork about where he was staying and we couldn't. And we went round to her ex-mother-in-law's, [her son's] gran's to see whether she knew where he was staying. She was in a terrible state when we got there because my friend's dad had been on the phone and told her what was happening but she didn't know where [my friend's son] was staying either. 

So we went up to the local TA barracks which is where he'd gone on holiday from. It being relatively early in the morning there was nobody around apart from the gatehouse soldier person. We explained to him what was happening and he went off and spoke to the sergeant that had took all the kids away. And he said that he'd tell [her son] what was going on and try and get him home as soon as possible. So that sorted, knowing I'd be in trouble [laughs] we went off to the hospital to find out what was going on.
 

Her friend was scared about being on a busy ward and having to do more for herself when she was still very weak

She was terrified going onto the surgical ward. She cried. She had tantrums. She had panic attacks. She felt safe. I think that was the big thing. She felt safe where she was. She was plonked, as she says, onto a surgical ward where the staff, there wasn't as many staff as there was in the high dependency and they had loads of things to do and they had twenty odd other patients to see. [My friend] felt very isolated because at that point she was managing to get out of bed into the armchair with the zimmer but needing two nurses because she couldn't stand. She could stand but she wasn't steady. And she was either lying in bed or sitting in the chair for hours at a time and she was frightened. 

And she kept saying, 'The nurses didn't understand'. But they did understand. It was just that they also understood that she needed to be doing more for herself and that it was a busy surgical ward that she'd gone onto. And that they didn't always have the time to sit and chat to her about how she was feeling or what she wanted.
 

Her friend needed a lot of help at first and, five years on, is still weaker than before and gets depressed about the way her life has changed.

I was there every day. I did all the housework, her shopping, her washing, her cooking. I'd take meals down to her that I'd cooked at home most nights and if I didn't do that I would go, I would prepare something for her in her house. She didn't have the strength to lift the pan up to cook for herself. She was having problems with her left hand strength-wise and dexterity-wise. She'd drop cups, she dropped the kettle. So she wasn't safe really. 

She's still so short-tempered now it's unbelievable. She gets angry with everybody and if it's not angry it's upset. She cries at the drop of a hat. She doesn't get dressed most days. In fact the only days you can guarantee to see her dressed is on a Wednesday when we go shopping or if she's going to hospital for an appointment. I confiscated her pyjamas on more than one occasion. She's actually moved now to a ground floor flat with a walk-in shower. She sees the physio once a month. She's still under the care of a bowel surgeon, bladder surgeon, plastic surgeon, neurologist, psychologist. 

And how long is this now after, since she was admitted? 

Five years. 

But she still gets quite depressed? 

Very, yeah. She's actually attempted to overdose on her anti-depressants. So she's no longer taking anti-depressants but she sees, I don't even know what [nurses' name] title is. She sees her for counselling at the hospital where she was in intensive care, once a fortnight. She's not very happy at the moment because she should move to this flat which has meant that the GP, her local GP who's been her GP for 17 years can no longer see her even though she's still living on the same estate as she was before she moved. But the GPs have tightened their restrictions on patients and will only see patients in their immediate vicinity. So she's had to change GPs. 

Her best friend has needed a lot of support and their relationship has changed because she now has to help her with her shopping, hospital appointments and depression.

We're still close but it's different. I'm not the best friend that went out drinking and went out clubbing and went out on holiday, went shopping with. I'm the best friend that listens to her worries. Tries to talk her out of depressions. Goes to the hospital with her. Takes her shopping at silly hours because she can't stand it when it's busy because she has panic attacks in the middle of the supermarket. I'm the one that says, 'You need to get the Hoover out you scruffy cow. Have you had a shower this week? What've you had to eat today?' I think that's all that I ever seem to say. 

Does she still consider you as her closest friend because you're the one who's always around to help? 

I think so. I think so. She does have her moments where I get a phone call and say, 'We're not going shopping today' Or 'What you doing this weekend?' And I say, 'I'm going to my boyfriend's' and she goes, 'Oh'. And you can hear that, 'oh', well you know, 'I'm going to my boyfriend's but I'm just going to be sat in his house all weekend'. When, it's like sometimes I wonder whether she actually resents the fact that she's how she is now and I'm still going on with my life. 

People laugh when you, when I say, 'Oh well I'm, you know, my mate's carer.' And they see us stood next to you and she's got, you know, a nice pair of court shoes on, smart trousers, nice top, hair's done, make-up's done. They look at you stupid. You know, well do you know if she looks better than I do most of the time [laughs] when we go out. Why am I her carer? I don't think people always understand what goes on inside or what complications she's been left with or what problems she's got. You know even stupid things like walking around the supermarket, somebody can walk in front of her, somebody can stand too close to her. I turn around and she's heading for the door and the trolley's been abandoned [laughs].