Family Experiences of Vegetative and Minimally Conscious States

Caring at home

Some of those we spoke to would love to take their relative home – they hate leaving them ‘in an institution’ or hope they might be more relaxed, or more conscious, in a home environment. Others are very disturbed by the idea that they might be expected to care for their relative at home.

Morag found it very painful to leave her father in a care home. She and her mother would have loved to be able to look after him themselves.

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And things like putting him in a chair and then, you know, eight hours later he’d still be in the chair, well of course he’s going to get bed sores then isn’t he? So you know, and they did do really well. He had a Pegasus mattress and stuff, so for a long time, you know, it was only right at the very end he had bed sores, but they’d started – so then it was well they stopped putting him out at all because they didn’t have the time to put him out and then put him back into bed again. But as far as, you know, medicine-wise, and you know, caring for him with the objective of getting him better, I don’t ever remember anything happening. It was just us waiting and hoping and trying, you know, to kind of talk him round, I suppose [laughs]. But anybody who knows us, me and my mum, not so much my sister, but no we could talk a glass eye to sleep so probably we did more harm than good [laughs].

Where there’s life, there’s hope’ and you were ‘hoping to kind of talk him round’? What was your vision of what recovery might be for him?

We just wanted him home, you know, and we just didn’t have – my mum didn’t have the physical strength or we didn’t have the physical space to have him home and we just wanted him home. You know, we wanted him home with us where we could look after him, where we knew he’d get the care that he deserved and we just didn’t like leaving him. You know, it’s hard to go and leave somebody that you want to look after and [cries]. Sorry.

Mark was perturbed by the suggestion that he might be expected to care for his brother.

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Mark was perturbed by the suggestion that he might be expected to care for his brother.

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They’re kind of – they’re very good – the crisis bit at the beginning, patching him up, getting his bones fixed and all of that, was absolutely – wouldn’t fault. But then you get to the point where he has to be discharged. And, you know, we were having a conversation at the hospital where they were saying, “Right, well, we need – we’re going to – we need to send somebody round to your house to assess whether, you know, what modifications we can make to your house to send him home.” And I’m thinking, what? And they know what – they’ve got his – are you serious? And then you start sounding like an uncaring relative, don’t you? You’re, you’re saying, “Are you seriously expecting me to take him back home?” Well, well, you know, people, people do, people do. I’m thinking, yeah, but that—

Most people don’t.

You can have people coming in and, you know, somebody living in, a carer living in and all that. And I’m thinking, well, hang on a minute, that isn’t the best thing for him, is it? I don’t think, I don’t think he’d want me doing what they have to do. I don’t think he would want them doing it, but he certainly doesn’t want someone like me or Helen doing it.

Usually it is completely impractical to care for such a severely brain injured patient at home – but we did interview a few people who did so. Rhiannon was caring for her vegetative daughter on her own at home and felt unsupported by the system, which failed to provide sufficient respite or financial support. She also felt totally isolated:

‘It's almost like living with a dead person because there's nothing back. You give all this to the person and there's nothing. There's just nothing coming back. There's no communication. There's no affection. There's no – there's nothing, you know. You're doing this because you love them and you hope, you hope, that there is something in there that knows…I’m Amy’s voice. I'm her hands. I'm her feet. I'm her voice. I'm Amy. ...Me doesn't exist any longer.’

Shona’s husband had recovered full consciousness and she tried caring for him at home for a while – but it became too difficult, and she felt it had a negative impact on their son.

Shona ended up feeling ‘like a caged animal’ trying to look after her husband at home.

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I said to [Rehabilitation Consultant] when she first come up about my beliefs and one thing and another and [Rehabilitation Consultant] said you know looking at the scans, that she believed that he could possibly recover to a functional level of having family input. Being at home and giving some family input. And then of course you cling to that little glimmer of hope without really understanding the implications of what goes with that. You know, incontinent, argumentative, boisterous, and the cognitive issues that, unless you’ve dealt with somebody with cognitive damage, you have no perspective of it.

What level of cognitive damage does he have now?

Uhm, he’s actually quite good, (to son) isn’t he? He’s a bit like an Alzheimer’s patient.

I can honestly say looking after [Husband] I was like a trapped, caged, animal. Because I’d pace this house, not being able to leave it. And it’s things like that that pisses me off with the social services. Because you shouldn’t be put through that. Especially having a child. You know, that is not acceptable. I mean it got to the stage that one night [son] turned round to me and he said, “He won’t bother you tonight Mum”. And I said, “What do you mean?” He said, “I’ve taken the batteries out of his bell” he said “you need a decent night’s sleep”. Now that isn’t for your eleven year old to have to really have to take on that kind of thing, is it.

Home caring is extremely challenging whether the person remains vegetative or recovers consciousness. A great deal of support is needed, and is not always forthcoming. One man caring at home said he and his wife felt they had no privacy now, and found it difficult to sleep or relax at in their own house - “We’ve sacrificed our marriage, we’ve sacrificed everything - we’ve been through a lot and nobody came to talk to us about how to cope.”

Another couple felt they had no choice but to take their son home, but reflected on the way having their son at home dominated their lives and affected the whole family.

They felt compelled to take their son home to look after him – but now feel this was a ‘bad decision’.

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Miggy: I think when we brought him home after nine months, I think we knew we wouldn’t see any meaningful improvement. In reality, I think that’s what we knew, because that’s what all the doctors’ reports were saying. That’s what the doctors were saying. But I think I didn’t really have an option. I think we had to bring him home because I, it was not an option to leave him in institutional care. What I probably should have done is work on what institutional care means and find some good institutional care. But again, I didn’t have the knowledge or the ability to find out where I find out that sort of stuff. So I think, that’s when I say I think bringing him home was a bad decision. I think - probably there should have been some other pathway at that stage, another alternative.

Yeah. And I’ve interviewed quite a few families now who are thinking about bringing somebody home [in this state]…

Kevin: Yeah.

…and I suppose it’s quite useful for them to hear—

Kevin: Yeah, well—

What would your message be to that family who I’m talking to next week who says, “Well, we’re thinking of bringing him home”?

Miggy: Well, I think you feel it’s an act of love, and it is an act of love, but I think you really have to consider the people who are involved who have real lives to live - and who have real lives to get on with, because it will shatter all those. So, in our case, we had a daughter as well, a daughter who was living and breathing and going about her business, and I think we should have – well, we always loved her, we always cared about her, but I think the fact of bringing Matthew home didn’t help her. She felt, at the time, it was what we should do. She didn’t like him in hospital. But I think it just wrecks all the other lives around it, having somebody constantly with you in that situation, in the home environment. Although, you feel you’ve solved the problem at the time because they're no longer in hospital and you’re travelling up and down the motorway to see them, and things are in your control. So you feel you’ve solved the problem, but I think you’ve brought a lot more problems on yourself.

Those who had attempted home care advised others to think very carefully before taking this on. They recommended ensuring that the appropriate equipment is in place in advance, and that respite care has been organised before starting out. They also said that people caring at home should not be afraid to change their minds.

Last reviewed December 2017.