Emotional impact on family and friends

Family and close friends can experience many powerful emotions at different stages of the patient’s illness and recovery. Here men and women talk about how they felt emotionally when the patient was back home and recovering.

Many people said that, when the ill person first came back home from hospital, although they’d been overjoyed they were well enough to be discharged, it had been difficult too because the ill person had been very weak, had become easily exhausted and had needed a lot of physical as well as emotional support (see ‘Supporting and caring for the ill person at home‘).

At first, many people had to take time off work to help the ill person and they hadn’t wanted to leave him or her on their own at home. Some said they were extremely anxious in case anything happened and it was a while before they could completely relax again. A few felt they’d become ‘institutionalised’ in ICU and accustomed to having medical staff on hand to help. Now that they were on their own, they worried in case their relative got ill again. Many said that, at first, both they and the ill person had been anxious they might get ill again and they were sometimes over-protective. One woman said that she became concerned that she might get the same illness as her sister had because it had a genetic link, but this feeling soon passed.

When her husband first came back home she used to check that he was still breathing while he was…

Age at interview 37

Gender Female

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He could do all the normal washing, dressing, things like that.

He could walk upstairs could he?

Yes. He couldn’t use his left side at all because he had to wait for that to heal and his tracheotomy hadn’t healed either. And he could do the everyday things but he wasn’t allowed to hoover or anything, you know things like that. And it would limit what you do that you can’ because it was pulling this, and I think that the whole psychological thing is probably greater than the physical because all the time, and I think I did his head in, I used to wake up continually through the night clutching his chest to make sure he was still breathing. You know and things like that. Because all of a sudden you do get institutionalised because you know that there are people that are there and they are going to look after it and it is monitored and you will know. And then all of a sudden that is gone and you are on your own.

And you mentioned that when your husband first came home you were concerned and quite scared. Did that wear off with time?

Yes. But it does take quite a long time. You know. It takes a long time, you are and you know, I mean, even now if he goes out on one of his walks or something, he has to take the mobile. And if he is longer than I think he should be I always ring him and you know things like that. Because you are, and I think I absolutely do his head in, because I am very much, I have to speak to him five times a day, you know, things like that, ‘are you all right’ and things like that. But I am not clutching his chest any more making, I am not sure what I was going to do if he wasn’t breathing, but you do have these fears, because you are institutionalised with the hospital because everything is there. And when you come home, and we live surrounded by fields, so you are, you know, you are like ‘well what is going to happen”

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Some people said they’d coped while the patient had been critically ill but the real impact of what they’d been through only hit them after the ill person had come back home. Many said it was only then that they realised just how physically and emotionally exhausted they actually were.

At first some had found it difficult to sleep properly but got back into their normal routine in time. Both the stress of the ICU experience and then caring for the ill person afterwards took its toll on some people’s own health. Several said they’d experienced stress, depression or stress-related illnesses. One man said that, when his wife came back home from hospital, he was shocked and disappointed to find that there was very little support for relatives and carers. His wife was extremely weak and he and his daughter looked after her until she became mobile again. This, as well as the trauma of her accident, had led to depression and he’d been prescribed anti-depressants by his doctor. His wife had fallen through the bedroom floor when he’d made a hole in it whilst replacing a radiator, and he’d blamed himself for her accident.

It took him eighteen months to stop blaming himself and accept that his wifes fall had been an…

Age at interview 57

Gender Male

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It took me 18, myself, over 18 months to get it out of my system because I blamed myself because I left the hole in the floor. I blame myself all this time. But I must admit I actually got myself drunk that night and after that I’ve been as right as rain. I’ve accepted it was a pure accident but up until then I blamed myself.

So that night when you got yourself drunk was it almost the point where you could accept that it was an accident?

Yes.

What had happened then obviously’?

Yeah, yeah, after that yes, right. I was so fed up this night I just sat down here and polished off half a bottle of Bacardi [laughs]. I know I shouldn’t have done but, but after that once I cleared my head I suddenly come to terms with it that it was purely and simply an accident. And it was just one of those things.

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Some people said that, as well as helping the ill person physically, they’d had to help them emotionally as well. Although the ill person had improved, they’d often had good and bad days and these had affected everyone in the family. The ill person also experienced moods swings and feelings of frustration, anxiety and depression while recovering, especially when recovery seemed to be taking a long time or there’d been a setback.

Family members sometimes became very emotional when his partner’s mother was having a bad time…

Age at interview 38

Gender Male

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What was your day-to-day life when she was back at home?

Hard. Not knowing what to do. Trying to do everything, but as I say not knowing. Trying to cope with [my partner’s mother]. Mood swings for instance. You know, one day on a high, ‘Yeah, I’m going to get better” And the next day deeply depressed and in tears. You know, there was days where she just cried for hours. And then there was days where [my partner’s mother] would be in tears and [my partner’s father] would be in tears. So I’d sit with [my partner’s mother] for two hours and say ‘You know you are getting better. But then [my partner’s father] would be in tears, so I’d sit with [my partner’s father] and say ‘Common now. Hed say, ‘Oh. Hed say, ‘It’s my fault. And then going upstairs and seeing [my partner] in tears. So some days, you know, I felt really drained. Obviously I’d go out to work and I’d miss quite a lot. I’d come back and, you know, [my partner’s mother] would be upset because it had been a long, hard day. As I say, all of them would be upset. So it was terrible.

How long did this go on for?

I can’t, I honestly can’t give you a time-span. It seemed forever. It really did seem to take a long time. As I say, she did, you know, she did develop, she did get better.

Did you have anybody to talk to at work, that you could just offload? Or you didn’t feel you needed to?

I felt like I needed to offload. I mean they’ve got family friends and we chatted. They went to the hospital when we went to the hospital. I’d go round there occasionally and say, ‘I can’t stand it over there at the moment. You know, because they did go through a stage of bickering, all three of them, you know, at each other’s throats. And it, you know, it was just horrible to watch. But none of them were in the wrong, it was just tiredness and stress. And so I suppose, you know, I spoke to the family friends, but no one else really.

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Some people explained that the ill person had severe head or brain injuries and had needed to recover both physically and mentally. Because of their injuries, they’d often experienced mood swings or become angry, agitated or frustrated. For the relative or friend who’d been caring for them, this could be difficult and challenging. One woman said her husband’s depression and mood swings had been very difficult to cope with at first, but did improve over time. To begin with, however, she’d often felt lonely but hadn’t wanted to tell anyone. She said she would have liked reassurance, perhaps from someone in a support group, that his mood swings had been normal for someone who’d had severe head injuries. Another said that, at first, her son had often been confused and angry. This sometimes left her feeling vulnerable but talking to his occupational therapist had helped her off-load.

When her son first came home he was often difficult to live with because hed get angry and…

Age at interview 49

Gender Female

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We were getting near Christmas, we were into December. So it felt right to bring him home. But we had had a few times where because he was probably confused, he was quite angry at times.

I was worried that I was going to be quite vulnerable at home and I talked about that with the occupational therapist and he really took the concerns on board. And I said, ‘Very often you don’t see it. It would be when we were back in the room I’d say something and he would turn on me and be quite nasty to the point where I actually felt very, very vulnerable.

And the same with the occupational therapist. Although he [son] started to resent her, like there was one day where he was up in bed and I said, ‘Shes here. ‘I’m not coming down. And I used that session for me to vent how I felt. I was having real trouble. He was becoming horrible, really. Really hard to live with. I mean there are times where, I hate to say it but you almost think, ‘If only” [laughs]. And that is terrible, but there were times. You know, I thought, ‘My life would have been a darn sight easier if it had gone the other way. Which is the most awful thought. But I could talk to her and I also felt I had to, I had to let someone outside the family know that there were problems. You know, there we were, all, ‘Oh, it’s lovely to see him getting on and so well. Oh, isn’t he doing well?’ And part of you felt like crying sometimes, saying, ‘Well actually hes a nightmare.

You know, really hard to live with. And there were times when the other two [children] were frightened of him. You know, he was very, can be quite big physically and so, but that having that outside, and at times he said, ‘I don’t want to see her anymore. And I thought, ‘I can’t lose that link. I have got to have someone from outside coming in who almost can protect me.

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After spending weeks or even months visiting ICU every day a few felt ‘lost’ when they had to adjust to normal life again and it had taken a while to get back into their usual routine. Many people felt that, in time, everyone who’d been affected by the illness or accident did resume their routines, though some felt the experience had made them look at life differently and they described the changes they’d made to the way they lived or worked (see ‘Attitudes to life after the hospital experience‘).

Some people felt that there was very little support for either ICU patients or their relatives once the ill person had come back home. Several described feeling ‘abandoned’ after weeks or months of hospital visiting and one woman said she’d also felt angry because the lack of support showed how little recognition there was for the trauma and distress relatives go through.

When her mother was recovering, she sometimes felt angry and forgotten because there was so…

Age at interview 37

Gender Female

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Sometimes when I think back about what happened with Mum I get very upset recalling it all and kind of all you know, kind of angry I had to deal with, how did I cope with dealing with so much and keeping it all running.

Is the anger coming from doing it all by yourself?

I don’t really know. I think it is still this anger at once they are better it is all then the patient still. And the relatives are forgotten about almost. Nobody said well done, you did a good job there, or you know you have come through all right. And you have looked after your Mum or whatever. There is no praise, no gratitude. I mean obviously my Mum is grateful but you know suddenly it is then just all the patient and concentrating on them, and oh you are looking much better and not, and how are you feeling now. So I think it is probably that, that is the anger. I don’t dwell on it. It’s I not eating me up all the time, but sometimes when you think about it, you think, you know I went through all that and didnt get an award or a medal for it. You know you feel like you have done a really good job for somebody and it’s forgotten almost.

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Some people said that, in time, despite the trauma of what they’d been through, they’d been able to look back and see some of the positive things they’d experienced along the way. These included humorous moments, the love and support they’d received and the dedication of ICU nurses. Many said their relationships with family or friends had become closer or stronger. Some couples said they’d become more relaxed and had gained a better perspective on life, no longer being anxious about trivial things. One woman said her husband appreciated her more now, others that they valued one another more and spent more time together. Two couples decided to get engaged after their time in ICU. One man said that, although he, his partner and her family had grown closer, his partner’s brother still found it difficult to accept how ill his mother had been and how she’d changed.

His partner’s brother hardly ever visits now, even though he and the rest of the family are much…

Age at interview 38

Gender Male

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I probably got closer. As I say, you know, this family has become more like my family, the family that I’ve never had. So I do feel really close. [My partner’s mother] is like a second mum to me, and [my partner’s father’s] like a second father. I could have killed them at times, don’t get me wrong. You know, they beat themselves up all the time. And the arguments, petty little arguments. You know, that sticks out a lot to me. And I’ve certainly got closer. I feel part of the family. And I actually feel privileged to know them and to see what they’ve been through. And I think [my partner’s mother] and [my partner’s father] are remarkable people. And [my partner], you know, shes remarkable. The brother, does what he does but, you know, he can’t handle any of it. He can’t stand seeing his mum like she is. And I think if anything, they’ve drifted a bit. He loves them obviously and all that, but he just can’t stand seeing his mother not being able to do what she used to do. So his way of dealing with it is staying away, pops round occasionally but’

I admire all three of them. And I think if it had happened to a lesser person, lesser of a family unit, then certainly [my partner’s mother] wouldn’t have survived and, you know, I think people would have had some breakdowns or something. But because they’re such a strong family unit, they pulled through it.

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One woman said that, since her brother’s illness, she’d realised just how much a sudden, unexpected illness or accident can disrupt normal life and the lives of relatives. After her brother’s illness, she’d spent some time sorting out insurance and other financial matters so they were organised and easy to deal with should anything ever happen to her.

Anxiety, depression and post-traumatic stress disorder

A few people said they’d been so deeply shocked and affected by the whole experience that they’d had Post-Traumatic Stress Disorder (PTSD). It is common for people who have experienced an event like sudden critical illness, either as a patient or relative, to feel shocked and, later, anxious or depressed. PTSD is when people repeatedly re-live the experience in the form of memories, nightmares, flashbacks or frightening thoughts, especially when they are exposed to situations that remind them of the event. Anniversaries of the event can also trigger symptoms. People with PTSD also experience emotional numbness and sleep disturbances, depression, anxiety, irritability or outbursts of anger, and intense guilt. Most people with PTSD try to avoid any reminders or thoughts of the event. PTSD is diagnosed when symptoms last more than one month. A few people said they’d experienced PTSD. After seeing their doctor, they’d been referred for counselling.

She had post-traumatic stress disorder and counselling helped her focus on the present, whilst…

Age at interview 51

Gender Male

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Mother’My GP said I had post-traumatic shock disorder and sent me for counselling. Which has been very, very helpful. And I just have to adjust my way of looking at it. It used to amaze me that you could see, like old soldiers who’d fought in the First World War, and as 80 and 90-year-olds they talked about it and they cried. And you thought, ‘Do you never get over these things?’ My counsellor said it’s like, you remember a kaleidoscope that you used to look through when you were a child? If you get a particular pattern that triggers this, years later if you see that pattern, you will still do it. And theres no way round it. But what you have to look at is the fact that were not there any more. We have moved on. And to keep a grip on where we are now. Yes, it was awful. Yes, it was a nightmare. It was, I’d always been terrified of meningitis. Working in the healthcare field I’d always been slightly nervous, you know, if we had patients in with meningitis, to think, ‘Can I transport that home?’ And, you know, I would talk to my consultant about it and shed said ‘No, you’re okay, you’re fine. It was always the one great fear. So, there we go.

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After her son’s accident, she found it difficult to read, watch certain television programmes and…

Age at interview 58

Gender Female

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I found, even, I couldn’t read. I love reading but I couldn’t get past the first paragraph of anything. I couldn’t watch television. I have always kept up to date with the news, that’s one thing I like to do. I was totally out of touch with the news. And even now I can’t watch certain things on television. If theres a violent programme or something which causes me to feel emotional inside, I can’t watch it. It’s stretching me too far, I’m already stretched. I don’t have that give. It’s coming back, it’s much better than it was. If I’m driving and I can hear or see an ambulance going, I used to burst into tears at the beginning, that doesn’t happen anymore. I still say a little prayer for whoever it is that they are going out to or they are taking. So I think it takes a long time for things to settle afterwards.

You are changed. I’ve had post-traumatic stress, I know what it feels like and I know that, whilst my experience was individual to me, was individual to me, it can change the way you are and the way you react for a time, until you come back into yourself. So I feel that’s what I’ve been doing really.

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Two women said they’d never forget the sound of a ventilator, another that she’d become wary of missing calls on her mobile phone in case it was an emergency. Others said, for a while, they were wary of making long-term plans. One man said that, when his partner’s mother had an accident at home and fell through the bedroom floor, their lives had revolved around hospital visiting. Now, although the living room ceiling had been repaired, there was a visible patch where it had been restored and this was a constant reminder of the accident.

Adjusting to a changed life

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