Adjusting to a changed life

Generally patients who stay in ICU the longest are those who are admitted as emergencies. Planned surgery patients tend to have a relatively short ICU and general ward stay, sometimes with a brief spell in a High Dependency Unit. Everyone who has been in intensive care recovers at his or her own pace. Many patients leave hospital very physically weak and complete recovery can sometimes take up to two years, particularly if they were admitted to ICU because of an emergency illness, surgical complication or accident.

Here people talk about their experiences of being full time carers because the ill person’s health had deteriorated so much after critical illness that they could no longer manage alone.

Some people said they’d had to make many changes to the way they lived their lives because the ill person’s health had deteriorated so much since the illness or accident that they now needed a lot of care. Several said they’d had to give up work for a few years so they could care full-time for their partners. One man said he’d accepted a redundancy offer at work so that he and his daughter, who’d given up college, could look after his wife.

A few people had to give up work permanently to become full-time carers. Some had been retired. Many described the changes they’d had to make to their everyday lives and the challenges they’d faced. A few said they’d become quite housebound or rarely had a break themselves because they needed to be near or with the ill person all the time in case he or she injured themselves or caused an accident in the home. One woman said her husband’s memory had become so poor she worried that he might let in strangers or pay for things over the phone that had already been paid for or cancelled. Some had found it difficult coping with their new situation and worried about managing in the future if things didn’t improve. They said they coped because they loved the ill person and this strong bond, as well as the good days they had, helped them through.

Although her husband has made lots of progress, he still can’t be left on his own for very long…

Age at interview 66

Gender Female

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Although I do leave [my husband] now, I mean I go to church and things like that. I will go out. I wont leave him for longer than say an hour and a half, two hours at the very most. But I have no worries about leaving him in the short term. I couldnt leave him for a day because I think he might go out and let the door slam after him or, you know, hes just not as with it. Also he does not cope with phone calls. He just, although he will write sometimes, he sometimes will remember to write down if somebody rings but even, you know, even family members if they ring. And hell say, Oh yes somebody rang. And Id say, Well who was it? Oh I dont, I cant remember. And then maybe the next day youll say something and you might say its one of our daughters or youll say something like, Oh [our daughters] coming. Oh yes she told me that when I spoke to her yesterday. But I will come in and he will have completely forgotten.

I could never leave [my husband] overnight but, luckily, we have a daughter that lives locally and Ive got three teenage grandchildren who, you know, are available really should he need help. Hes always got on very well with his grandchildren. He loves it when they come and theyve spent a lot of time here with him.

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Because his wife is very weak, visually impaired and still has serious bowel problems, he looks…

Age at interview 66

Gender Male

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HusbandShe is now registered, her vision is impaired, she has impaired vision and she is now registered for that. And the people from the Blind Society have come along with a few little gadgets that, i.e. for filling the cups up with water or a drink or tea or something. That helps her to do that but she cant do very much around the house at all at the moment. And this is getting her down as well because she was very house proud before. And now she just cant do it.

WifeI cant see enough. Thats the difference. I cant see it.

Have you had any support from anyone else?

HusbandWe have had lots of people contacting us, calling in to see if they can help and that but the problem with a lot of these people are they havent got access to various things but there is no manpower at the other end of it. It is all suggestions, you can do this, you can try that, you know, we can get you in touch with such and such Admiral nursing, get in touch with those, but when you get in touch with them there is not really very much they can do. You know you could do with somebody, [my wife] would need somebody with her all the time if I was to go away or something like that. She could never cope on her own. I have great difficulty in leaving her at all. And I am on tenterhooks wondering what am I going to find when I get back home. Even if I just go round to the shop and back again.

WifeI put a pillow in the microwave once and set it on fire.

So really a carer would be good, someone who could come in on certain days?

HusbandWell it would, but again you see it would take a long time for that carer to get to understand what [my wife] needs and

WifeLike fitting on the night bag. Most carers will have never seen anything like it before.

HusbandIt would be very difficult for me to leave her. At the moment we are getting a quite reasonable nights sleep now. At least we can say that and we are not absolutely exhausted. I mean with this night bag as we call it, it is giving us like six or eight hours sleep a night. And as I say occasionally I get woken up with her saying it is leaking, you know, but that is a very rare occasion now.

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Some people said they had little or no other support when the ill person came back from hospital and this meant they rarely got a break from caring. A few felt that the ill person’s needs were extremely specific and that no one else would be able to care for them the way they did. Several felt guilty about leaving them with someone else, even though they would have liked a break.

One woman said her husband had his leg amputated and would have an artificial limb fitted when he was strong enough, so he could walk unaided. She’d given up work to care for him and sometimes found it difficult but also felt extremely grateful that he’d survived his illness and that caring for him was ‘a labour of love’.

She gave up work to look after her husband full time and encourages him when he feels depressed…

Age at interview 63

Gender Female

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The routine at the moment is – I mean I am always up first anyway. I can’t lay in bed once I am awake, but my husband sleeps in if he can, because the only difference I will say is, I think because of the heart he gets tired. So normally he is up about 9 oclock and he gets up and it really just depends, because obviously he still has some good days and some bad days. And on good days he can get up and get himself into his wheelchair upstairs and into the bathroom and wash, shave, and dress himself. And then I always hear when he is on the move and sort of make sure he is okay coming down the stairs and then have the wheelchair at the bottom of the stairs ready. And then once he is on the ground floor, he is to a certain extent independent, although obviously I do his breakfast etc etc. And I of course make sure he takes all his pills at the right time of day. When we go to the hospital then we usually have to be there by 10 oclock, so we go down to the hospital.

Do you drive to the hospital?

I drive him down, yes. And then I usually come home and when they phone me I go and collect him.

He was very quiet when he first came home and a few times I have said to him what was the matter. And he said, ‘Oh I can’t do this, and I can’t do that’ and I said, ‘No, but you are alive,’ I said, ‘What you have got to remember is that you nearly died, but you didn’t, you are here, so you have got to say to yourself now every day is a bonus. So we live life to the full. I gave up working and I finished work on the 19th May to look after him, which is quite a full time job [laughs] but it is a labour of love really isn’t it.

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One woman had become her best friend’s registered carer since her critical illness. She that they were still close but their friendship had changed. It now focussed much less on going out and having fun together and much more on supporting and encouraging her.

Her best friend has needed a lot of support and their relationship has changed because she now…

Age at interview 37

Gender Female

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Were still close but its different. Im not the best friend that went out drinking and went out clubbing and went out on holiday, went shopping with. Im 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 cant stand it when its busy because she has panic attacks in the middle of the supermarket. Im the one that says, You need to get the Hoover out you scruffy cow. Have you had a shower this week? Whatve you had to eat today? I think thats all that I ever seem to say.

Does she still consider you as her closest friend because youre the one whos always around to help?

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

People laugh when you, when I say, Oh well Im, you know, my mates carer. And they see us stood next to you and shes got, you know, a nice pair of court shoes on, smart trousers, nice top, hairs done, make-ups 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 dont think people always understand what goes on inside or what complications shes been left with or what problems shes 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 shes heading for the door and the trolleys been abandoned [laughs].

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Some people said that they’d sometimes felt burdened or resentful about having to care for the ill person, especially when it had involved making lots of sacrifices in their own life. A few people said they received support with caring, which they’d found helpful.

She and her husband support each other when caring for their son feels difficult.

Age at interview 44

Gender Female

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It’s very, very difficult because I’m quite an independent person. And, you know, when you have a baby you expect to sit there and feed them and you expect to do this, that and the other, and it’s kind of human nature.

We do resent it and we do, you know, you have your low moments. And we kind of allow ourselves to have a really good moan and we say, ‘It’s not bloody fair’ and, you know, ‘Why us?’ And you know, sometimes I’ll be a bit down and [my husband] will be fine and hell sort of say, ‘Now, come along’ you know. Or hell let me have a really good grouse and then I’ll get over it. Or vice versa. He can be a bit sort of grumpy for a day or something…

Yes, so we tend to sort of, we do work as a team.

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Many people said they’d had to adjust to a very different way of living because the ill person’s health had deteriorated so much since the illness or accident and this had often been difficult or stressful. Now they were the full time carer of their relative some said they were anxious because, if anything ever happened to them, there would be no one to care for the ill person.

Shed had cancer before and worried about who would look after her husband if she ever became ill…

Age at interview 66

Gender Female

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But [my husbands] got two brothers and a sister living locally. And one of my sisters-law, his brothers wife said, You know she said because I talked to her and I say, One thing that really worries me is if I were hospitalised for any reason, you know. I said [My husband] will probably, might have to go into respite care because I couldnt ask [daughters name] to look after him. She said, [my sister-law said, Oh well, she said, He wouldnt have to do that. You know, she said, We have plenty of room here. We would. You know she said, That wouldnt, you know, it wouldnt come into the equation she said. She said, [Your husband] could always come here. And so it means there is that but it is a bit of worry for me because five years ago I had surgery for bowel cancer. I actually had to have a section of bowel removed but I mean luckily, you know, theres been no recurrence of the polyp that became cancerous. So luckily it was got in time. They were able to remove it and I have very regular check-ups for that, you know, for that but, you know luckily everything is fine at the moment.

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Some people who were caring for their spouse were concerned that their relationship would change but the role of husband and wife had been resumed. A few said that their roles and relationships had changed and were now more difficult. Several said that they’d taken on more responsibilities, not only in terms of supporting the ill person and doing more within the home but also in terms of looking after the finances because the ill person’s memory had been so badly affected.

Although shes never been interested in financial matters, she is now having to take care of…

Age at interview 66

Gender Female

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Another thing which I found, well I suppose it has saddened me so much because although [my husband] had a number of private pension plans and there was one that he had not taken and he intended to take that this year. And of course he has done absolutely nothing about it and I have sort of been arranging that. I mean luckily Ive sort of gone through somebody who is handling it for him. But you know there are forms coming in and so on and it saddens me, [my husband] who was so on the ball over things like that, but suddenly you know, here am I, who know nothing about it. I am arranging it but Ive reached the stage Well I mean luckily really they have handled it very well and theyve got sort of an impaired life pension from it. But you know hes just. I am sort of thinking well you know he has saved all along for this and so on and I thought yes I want to have the best out of it. And sometimes I think you know this is something I never really, I didnt have any interest in it because mine was a final salary pension and I mean I took what I was given and that was it. Whereas [my husband] has always been very, very, you know, very interested in those things. And suddenly here am I the person who always said, Oh I dont really want to know.

I find that things like that, having to handle things like that its quite difficult. And seeing him not having any interest in it, something that you know he would have been getting cross about and [laughs] arguing with advisors about it because, in many ways, he knew as much about, because he read an awful lot about, you know investments and all the rest of it that he would of. He knew as much as most advisors for it but I mean the fact is I sorted of handed that over to somebody else because I would not know where to start, you know, transferring pension funds and all the rest of it. But luckily its all nearly completed now. So thats good.

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At first he was worried that hed become his wifes carer rather than her husband but that didn’t…

Age at interview 60

Gender Male

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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.

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One woman said that her husband’s memory had become very poor and she often felt sadness for the time they could have had together if he hadn’t got ill.

Her husband is now very forgetful and she has to explain things to him and sometimes feels sad…

Age at interview 66

Gender Female

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Theres the sadness for what we have lost. [My husband] doesnt feel that sadness. I do, you see. Hes aware that theres very much missing. If he could drive now thats all hes thinking of [laughs]. That is. Thats, to him, that is the only thing hes lost, his ability to drive. But he thinks, you know, that hell be going off and doing things that he did before but we

How about for you?

You mean

Things that you feel youve lost, time together that?

Yes, yes, we have lost the sort of times, that I need to, I have to explain an awful lot of things. You cant just make a statement. Now like the other day we were looking around. I was just buying some milk actually and I went and said something about organic milk. Well I mean I dont know how you feel about organic goods but I dont buy organic [laughs]. And you know and I said, Oh thats organic. I dont want that. I dont want to pay extra for that. Anyhow Well now, he said, Organic, he said, Theyve just added something to it. And I was trying to explain to him what this Everything is organic, he said. After all if it grows, its got to be organic. And I was trying to explain to him that to use the term organic its got to comply with quite strict regulations. You know I said its got to be no artificial, no pesticides, nothing like that. And he just, his idea of it, well organic he just said they add something. Actually you know, they dont and I was explaining to him whereas before he would have known exactly what it all. He said everything is organic these days and they go on and on about organic things. But he didnt really realise what organic is and why it really is more expensive because obviously you dont produce as much [laughs]. If youre not getting rid of the weeds and that and the pests it does cost more to produce. And you know, just little things like that and youd have to sit and explain so much.

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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...

Support and information

Here people talk about the support they received when someone close to them was discharged from hospital after being critically ill in an intensive care...