Interview 02

Age at interview: 39

Brief Outline:

In 2003 her husband had an accident while cycling on his mountain bike in woods close to their home. The accident left him with a serious head injury, fractures to his neck and spine, and a collapsed lung.

Background:

Customer services advisor, married, no children. Ethnic background/nationality: White British.

More about me...

In 2003 her husband had an accident whilst cycling on his mountain bike in woods close to their home. The accident left him with a serious head injury, fractures to his neck and spine, and a collapsed lung. He was admitted to ICU, where he stayed for about three weeks. He then spent 3 weeks in a ward and felt increasingly frustrated and depressed. He persuaded his wife to take him home. 

Afraid and not knowing what else to do, she took him home and cared for her husband full-time at first, having been given compassionate leave from work. Until he gained more strength and mobility, she helped her husband with every daily activity, including getting out of bed, walking and showering. This was a difficult and lonely time as she also had to deal with the mood swings that resulted from her husband's head injury and his depression. Shortly afterwards, she had to deal with her father's death from pancreatic cancer. 

As her husband became stronger physically and emotionally they both returned to work. They helped form a local support group for ICU patients and their relatives. Although their sex life has been affected by the injuries, they are much closer as a couple and are now much more aware of the things that are important to them.
 

Because of her husband's injuries, sex is no longer such an important part of their relationship...

In the third year, this year, my husband was beginning to, continued to make a really good recovery and is able to do most of what he did prior to the accident. Although he is stiffer and has more discomfort, so he can't walk for very long periods of time. He still has problems with reduced sensation in his legs and lower half of his body. And our sex life has been affected as well. But we have a closer relationship with each other now. So that aspect of our life is less important. For a few months afterwards it was quite difficult. But I think it's like anything really. You gradually adapt to things, and you get used to a way of life. You're thankful for the good outcomes of things, and grateful to have him alive. And even with his parents, I've noticed that when he speaks to them he'll say, 'I love you' more perhaps not have said that before. It was just understood that he did. I think we just have a better understanding. Obviously we still have our ups and down, as we did before, but we tend not to sulk about things as long and that kind of thing. 

Her husband had had minor mountain bike accidents before but, this time, when she went to see him...

The accident happened to my husband in 2003. He'd been a keen mountain biker and had been cycling off-road up at the woods close by. I'd taken on a part-time job at that time, and I was working in the evenings and didn't get home till about 9.30. I thought that something had happened to [my husband] because I saw his biking friends waiting for me outside the house in the car. He'd had minor accidents before, cracked a couple of ribs, and I thought he probably had a broken leg this time. 

I wasn't too concerned. And obviously when they saw me they got out the car and explained that he'd gone into hospital, had had a bad accident and that it was serious. 

I didn't really know what to make of it at the time. But his friend drove me to the hospital. And while we were driving, his mobile phone went off. It was the police, they'd been trying to get in contact with me to ensure I knew what had happened. 

Did your husband go into the A & E first and then ICU? 

He did, although I didn't see him in the A & E. 

So you came home. His biking friends were here and you went straight to the hospital? 

Yes. 

And your husband was in ICU already? 

Yes, he was. 

What did the friends say to you when, you know, when you were going into hospital? Did they know he was in ICU at that point? 

I don't think they did, no. Because the police hadn't given them too many details because I hadn't known about the news. I found out later that his biking friend had been with him when it happened, and he was in quite a lot of shock himself. So I don't think he could really explain what had happened at that time. 

She felt her husband looked like a stranger after his mountain bike accident and dreaded breaking...

When we arrived at the hospital I was taken into a room. The senior nurse went through [my husband's] injuries, which included a fracture in his neck, a collapsed lung and a pretty bad head injury. I wanted to see him. So they took me in to see him. That was quite a shock, seeing him for the first time. Because he was all hooked up to machines and had tubes etc everywhere. What struck me as well was how swollen his face was. It looked totally unlike [my husband]. He had a breathing tube in his mouth and a chest drain coming off. All I could think of at that time though was, 'Oh, my God. I've got to tell his parents.' After having been there a short while, and because time was marching on and I didn't want to be ringing them in the middle of the night, I went home. So the friend that had come with me drove me back home and was a bit reluctant to leave me. But I said I'd be fine. 

Did you know much about Intensive Care at this point? Or was this the first time you'd really heard about ICU and how critical it can be? 

It was the first experience I'd ever had of ICU. 

So you came back from work, you went straight to hospital? 

Yeah. 

And you saw your husband in ICU? 

Yes. 

It might have been quite a blur for you as well at that time. Can you remember, obviously it must have been a huge shock? 

Yes, I just didn't feel it was my husband at all. It just seemed like a total stranger lying there. 

She felt helpless sitting by the bedside so went back to work part-time when her husband started...

After a long day at the hospital we'd come home and pick up phone calls from people wanting to know how he was. I didn't really know what to say. At that time it could go either way. I had to sign a consent form for a tracheostomy, which would enable [my husband's] breathing to be made a lot more comfortable for him. It was at that time we established a routine between us in the family, visiting [my husband] throughout the day. So that if he become conscious there would be somebody there that he could identify with. It was I suppose towards the beginning of the second week that there was a gradual improvement in his condition. And he seemed to be doing quite well. But then he went downhill with a chest infection and had a high fever. 

One of the most harrowing things I think for the family was having to go out of the room whenever he had to have an unpleasant procedure done. We would go into the relatives' room, and because the staff were so busy with the patient's needs you tended to get forgotten a bit. So you could be waiting there sometimes much longer than you needed to be. It was that waiting around for hours on end that made you feel pretty helpless. There wasn't much that you could do. So I took the decision to go back to work, although they weren't expecting me back quite that soon. I used it as my way of coping with the situation. His parents were there all the time and helping as well. I made a routine of going to see him first thing in the morning to get an update. And when the doctors had been round I'd go back at lunchtime to see him. My company were very good at giving me plenty of time off. After work in the evening I'd pop in after having had dinner. We all helped each other out, [my husband's] family and myself. 

When they lessened the sedation, her husband was so violently agitated they had to increase it...

For the first week or so he was under heavy sedation, but the plan was to try and bring him out of that, to assess his condition and improve his general situation. As soon as they started to lower the sedation he became very agitated. I was surprised by his physical strength, despite being so badly injured and unconscious as well. He kept trying to pull everything out of him and get out of the bed. So in the end the nurses had to lift the mattress on to the floor for his own safety and were constantly monitoring and holding down his hands to stop him pulling everything out. After a couple of days of this they had to bandage his hands. He was getting so distressed that they took the sedation back up again, just to give him a bit more time, for the head injury to adjust itself. 

It was towards the end of the second week that he began to make improvements. I was encouraged to bring in familiar things such as his aftershave and music. Things that were familiar to him would hopefully bring him round a bit. One of the biggest turnarounds was when [my husband's] dad was trying to communicate with him. He seemed to understand certain things, but obviously couldn't speak because of the trache. He was being asked questions and holding his hand, he managed a squeeze once for, 'Yes' and twice for, 'No'. That was really encouraging to feel that he did still understand what we were saying and had some awareness of what was going on. We tried to at that time explain what had happened. But with all the medication he was being given I don't suppose he remembers much about it at all. The third week his condition began to improve quite a bit. Some of the machines began to be removed and he was moved further down the ward, out of the critical area of the IC unit. It felt like you were getting further towards the door and out of the unit. It was that week that they were able to remove the tracheostomy to enable him to speak. Which was really good. And he had speech therapy. This was one of the best times from the whole experience. He was still very weak but making really good progress and started physiotherapy; just gentle exercises lying on the bed. On one day he was lifted out to stand briefly and then put into a chair by the side of the bed. He was making really good progress and was really positive about it. 

After seeing her husband straight after he'd been admitted to ICU, she dreaded having to break...

When we arrived at the hospital I was taken into a room. The senior nurse went through [my husband's] injuries, which included a fracture in his neck, a collapsed lung and a pretty bad head injury. I wanted to see him. So they took me in to see him. That was quite a shock, seeing him for the first time. Because he was all hooked up to machines and had tubes etc everywhere. What struck me as well was how swollen his face was. It looked totally unlike [my husband]. He had a breathing tube in his mouth and a chest drain coming off. All I could think of at that time though was, 'Oh, my God. I've got to tell his parents.' After having been there a short while, and because time was marching on, and I didn't want to be ringing them in the middle of the night, I went home. So the friend that had come with me drove me back home and was a bit reluctant to leave me. But I said I'd be fine. 

I rang his parents and didn't really know what to say to them. I said he'd had a bad accident. But I think I underplayed it a bit; they said they'd be down the next day. At that time he was still very critical. So after I'd rung them I went back to the hospital and stayed there with him, just holding his hand and not really knowing what to do. It wasn't until later that night, as I was leaving the hospital, that I was given a bag with all his clothes and a helmet that he'd been wearing. That was upsetting, arriving home with that. The next day his parents arrived and we went over to the hospital. Their reaction was one of shock at the extent of his injuries.

Her husband became so depressed, she was so concerned about him that she agreed to help take him...

Because he'd become more and more depressed as time went on, we got to see the registrar at the hospital and he was should be moved to a room on his own, so he could get more rest. [My husband] has explained that since, the whole experience was unreal to him. He described it as being in the film The Matrix where everything in his life was artificial, and anything unfamiliar or contradictory to him was terrifying. 

He had no memory of the accident and there was a big gap for him of almost three weeks in his life that he couldn't explain. At the time I had no idea what was going through his head, but his mood swings became more frequent and were difficult to cope with at times. He hadn't seen his consultant for a while and was really keen to start some more physio to improve his strength. I just wanted to really know what was going to happen and get an accurate prognosis. I'd gone in on the Monday morning after his parents had gone back home for a few days and tried to speak to somebody that would be able to tell me anything. But I didn't really get any answers so that made [my husband] really frustrated. 

Because of the deterioration in his mental state he'd stopped taking some of his painkilling medication. Because he was now in a room on his own some of the nurses hadn't noticed he hadn't been taking all his pills. So he was getting a stockpile. Which we were obviously quite concerned about him taking, because he desperate by his situation in hospital. It was after that that he asked me to help him leave the hospital. I had severe doubts about this and I wanted to speak to someone about it. His parents were not there. He insisted he wanted to go there and then. It was sort of emotional blackmail I suppose you could call it, if I didn't help him then he said he would injure himself by trying to do it later on, in the night. 

So despite my uneasiness I did help him to leave the hospital. We just gathered up things really quickly and, still in his pyjamas, we left the hospital. We mentioned to the nurses at the station on the way out what we intended doing, so they wouldn't think we'd got lost. They insisted that we wait for a doctor to discharge us. [my husband] said he would wait. But he didn't and had no intention of doing so because he felt that he'd be restrained and have to stay there. It was just his mental condition at the time.

Shortly after taking her husband home, he received physiotherapy and occupational therapy, and...

So we were coming back in the car, and had no preparations or anything at home to look after him. So I left him in the car and I arranged for chairs to be put along the hall, so that he could sit down for a little while and then take a few more steps still with the walking frame. And it must have been after a couple of hours I finally managed to get him up the stairs and into bed, where he stayed for a couple of days, just recovering after all the exertion. And so he went on to recovery at home after the sixth week. 

I got a call from the physiotherapy department at the hospital. I did feel rather ashamed of what I'd helped him to do, but I think, even looking back now, it was probably the right thing to do for his mental state but not for his physical needs. They were very helpful and they arranged for a priority appointment for the community occupational therapy unit to come and visit us at home and assess what sort of needs he would have. He'd been wearing the brace that had been supplied at the end of his bed. But we discovered that it was the wrong one that had been supplied. It should have been a lot more robust one that kept his spine straight for the whole time he was out of bed. So the occupational therapist picked that up from the hospital and came and fit it on him. 

I'd normally get up early. I was sleeping in this room and [my husband] would be in the other room to give him plenty of room to move around. I just let him wake up when he was ready, and we'd get the spinal brace on and in the shower, then back into bed. Because everything would exhaust him a lot. Then we'd have breakfast. The whole day was just spent with everyday things that for most people would just take an hour or so. 

When her husband first came back home he had a lot of mood swings and she worried that these...

And you came home. So how was it when you came home, for you? Because physically you needed to be there all the time?

Yes. 

And also his needs, how did you cope with all of that? 

I don't really know [laughs]. There was just really no choice to it. I just had to get through each day I suppose. There were times when I thought, 'Oh, is it going to be like this for ever?' kind of thing. In the early stages he would be very difficult for most of the day. But as he gradually began to improve, then it would be more changeable. 

And is it at this point you would have found having someone to speak to, maybe outside the family or someone from the hospital helpful? 

Yes, I think perhaps away from the hospital. Just somewhere that you felt that you could talk confidentially and that wouldn't go on his medical record or be repeated to my husband. 

What were your main concerns at this time? 

Just to have reassurance that this kind of thing was normal for head injuries. Having not experienced anything like that before, I didn't know whether it was the head injury or whether he'd be permanently like that. Just reassurance that things would get better I guess. I think further down the line, because of the head injury, it would have been really useful to speak to somebody. Because I was a bit reluctant as well to tell people about his depression thinking he may be put in a psychiatric ward or something. 

It would have been helpful at the time to talk to someone from a support group but she found only...

Little by little he started to improve in his mental state and get more control back to his life. Whilst he was in the hospital he had had a visit from the head injury nurse from a support group. She'd been able to talk to him, and he could explain some of the things that he was feeling.

And would you recommend people to join a support group? 

Yes, I think it's very useful. But I can understand in the early stages of you not wanting to leave the bedside. So that could be quite difficult. I think in those early stages having a website or a confidential phone line that you could call any time would really be beneficial for the moments when you're really low. 

Like a confidential phone line in the hospital? Or outside the hospital? Or in a support group? 

I think perhaps outside the hospital. Where it's away from all what you're seeing every day. That would be useful, you know. Just, or if you didn't want to talk to somebody, just a website where you could chat to people by email. 

Did you ever chat to anybody by email? Or you've only just found out? 

I've found out more since the recovery, of places to go and where you can get support. 

And have you used these places? Well, you've got the support group you go to. Is there anything else that you've made use of to help? 

Yes, there's MIND and all sorts of mental health charities. But it's just being aware of and telephone numbers that you can contact. 

Did you ever receive any leaflets when you left the hospital?

No. I understand that there is a brochure now you get in ICU. But at the time that was in there, there wasn't anything like that.

After a while she had to go back to work and, because of financial concerns, her husband also...

After a few weeks, I guess it must have been about two and a half months since the accident, I'd been at home a few weeks, I did begin to feel a little pressured about having to go back to work. So I made an arrangement to go back part-time when [my husband] was able to do more for himself. I'd help him get showered and dressed in the morning, have a couple of hours together, then I'd go to work. Seeing to his needs took up a lot of time due to fatigue. He'd rest all afternoon until I came back home.

Three months after the accident, the Personnel Department at [my husband's] work advised that they could no longer continue paying his full salary, as the statutory sick pay period had lapsed. That was a bit of a worry. With [my husband] being the main wage earner, we were concerned about how we would continue to pay the mortgage and money worries generally. But he was able to arrange for some of his holiday to be included in his recovery time for another month. That gave him a bit of extra time without the pressure of having to get back to work straight away. His manager at that time was one of his biking friends and he was instrumental in devising a gentle return to work for him. Just a few hours a week, where he could just go in and check his emails and not really have to do very much else. Then he could come home and rest when he needed to.