Angela

Age at interview: 50

Brief Outline: In 2011, at the age of 66, Angela’s husband, a talented musician, had a cardiac arrest while in the recovery room after an operation. He was resuscitated. At first, the medical team were reassuring, but it turned out that he had suffered catastrophic hypoxic (oxygen deprivation) brain injury and he has remained in a minimally conscious state ever since. Has become progressively less responsive over time.

Background: Angela works as a receptionist, and her husband was the night duty officer, for the same funeral parlour. They were also musicians together, and had been in a relationship for 27 years prior to his injury.

More about me...

In 2011, at the age of 66, Angela’s husband, suffered severe anoxic brain injury. When we first met Angela in 2012 she was fighting to ensure her husband received specialist care. She wanted his medication reviewed and for him to be formally assessed in the hope that he might be able to obtain rehabilitation and make the maximum recovery possible. There were clear signs of response at the time: he wept on their anniversary and sobbed when she played a song from him: “and though that’s heart breaking to see it was great that he was feeling something”. He was diagnosed as being in a ‘minimally conscious state’. Although she accepted that: “the clever guy that I love is never going to come back” she hoped she might be able to bring him home and that they could have a different future together. Looking back she knows that her hopes were unlikely to be realised but says now: “love can trick you into believing that maybe it’ll be okay.” 

Meeting again in early 2014, Angela feels that there is hardly any response from her husband now at all. “He’s looking in your direction but there’s no connection there …the last time I saw him standing upright was on his way down to surgery. And I don’t know if he’s ever heard or seen me since”. She says: “You go from hoping for a full recovery to partial recovery… any recovery, but there’s no coming back”. She needed to try everything to “give him a chance” but now feels: “all I want to do is make sure that it’s as stress free as possible. I don’t want him to suffer any more in any way”. She has agreed to a palliative pathway for him: “Decisions I never wanted to have to make. They’re not my decisions to make, they shouldn’t be mine. They should be his.” She loves him passionately and does not know what he is experiencing now, but “I just would hate to think of him being afraid or lonely”.

Asked about the impact on her she says: “You’re in pain all the time. There’s not a minute you’re not. You can't un-break your heart”. Her grief remains completely raw, and she is in constant terror of finally losing him, although she now feels it “would be easier to be his widow, than his wife”.

Angela’s message to other families is: “Find out as much as you can about how you can help the person you love. And then don’t stop … just don’t give up on them. Because you might be the only one they have really, underneath it all, you might be the only one to look out for them.”

Angela’s husband looks towards her, but she does not feel he is really seeing her.

But now he’s not on any medication, he’s not even on paracetamol. He’s not on any seizure medication. There is no real marked increase in awareness. A little bit more wakeful possibly, but doesn’t, doesn’t see you, you know. Might look like he’s looking in your direction but there’s no connection there. The only time we saw something like that was the time he was off his meds for five days and he was crying. I was playing a song for him and he just started sobbing. And that continued – he would cry every now and again – it was his birthday I know in June and they – the staff did up his room with a birthday bow and everything, they adored him, you know. And he cried that day as well. 

And though that’s heartbreaking to see [speaks tearfully] it was great that he was feeling something, or showing something. It was sad that it was something that made him cry, because he wasn’t a whingey… he’s a very man’s man. [Sobs] He’s my man. And – but now I’m grateful that he’s comfortable. 

Angela’s husband went into hospital for elective surgery – but something went wrong.

My husband went in for surgery on the fourth of October, 2011 for Barrett's oesophagus and had a large section of his oesophagus removed and part of his stomach – about half of his oesophagus and part of his stomach. And part of that operation is deflating the lung. And so we knew there was a chance of a lung problem later. But the next day, about twenty hours after the operation, apparently what we were told later was that his lungs filled up rapidly with mucus and cut off the oxygen to his heart causing a cardiac arrest, which in turn caused severe hypoxic brain injury. Uniform brain injury, very much all over his brain. But we didn’t know all of this at the time. 

We were told he was going to be in ICU and they were going to try and establish what happened – first of all they didn’t know if it was a clot or a heart attack, which apparently is different from a cardiac arrest. Or if it was something else. And they were going to put him into a medically induced coma and try and get an MRI organised at some point over the next I think five, six days they were hoping to do that.

Angela watched over her husband ‘like a hawk’ and valued the effective support offered by particular members of staff.

He did have physio when he was in the general hospital and in the rehab hospital. But it was, it was sporadic enough, maybe once, twice a week. [Sniffs] But it was vital that his positioning be done properly. And these are all things I didn’t know anything about. He had one pressure sore on the base of his spine and it took months to get rid of it. But because of an OT [Occupational Therapist] in the hospital, in – who actually is now a friend of mine, he came in one day and he pulled him up in the chair. He was only a thin fellow and [husband] is six foot tall and he pulled him – he said, “He really needs to be sitting up.” And he said, “I’ll go out and talk to them.” He was the OT. And ever since then, that pressure sore started to heal. And he only ever had the one. Because I used to watch him like a hawk. And I would be there when they’d be changing him and cleaning him. And he got a rash one time and I went, “Okay, how do we get rid of that?” And the nurse said, “This is what I think,” and we got rid of it in two days.

And those kind of things. And what I – I actually had a checklist when I would go into the general hospital, for the first fourteen months, I’d have a checklist in my head, is his bed turned on, is his trachy cup full, you know, has he been moved in the last two hours? So, you know, when was the last time he was moved? And I’d come home and I would take notes. So I’d have – I’d text the family, tell them what the story was, and then I’d use that text to update my notes. And I have about a hundred and twenty single line spacing pages of notes that I kept, from every single visit while he was in the general hospital and what was going on. And I can't read them [laughs].

You can't read them?

I can't read them now. No. We kept a calendar in his room where we’d write down his temperature that day and how his chest was and various other things. And you know, just monitoring him. And we did up sheets that we could write, he was, you know, he turned his head, he did this, that and the other. And as time goes on it seems that he has quietened, you know, his body is good in that he doesn’t get infections. He hasn’t had an infection for ages. What is very likely is that now that he’s heading for sixty-nine – sixty – yeah, sixty-nine in June, that pneumonia will be something that we’ll just have to watch out for. And – but apart from that, we’ve lost him…

And that’s the – you know, I know that’s the reality and I know it’s probably been like that since the beginning, but I didn’t care.

Angela talks about witnessing her husband undergoing SMART assessments

So we got him in SMART assessment and I was at every SMART assessment session.

That’s really useful, because there’ll be other families going through SMART assessments, so it will be – can you tell me what your hopes were from SMART? And what the process was like as a family member to witness?

It’s, it’s very – it’s hard to witness in fact, because you kind of know what they’re looking for and you know if they’re not getting it. And unfortunately the environment wasn’t – from what we learnt in the UK from these four beautiful places that we visited – they were absolutely amazing, and they had great atmosphere – what we learnt is that they need – someone with brain injury really needs to be able to pick out a sound, so they would need peace and quiet, and they would need lots of rest in between sessions and be worked with when they’re at their most alert. And a lot of this kind of is now two and a half years so it’s – you know, a lot of it I knew very much at the time and I might be forgetting bits and pieces now as time has gone on, but his environment was not suitable. It was all that they had unfortunately. But it was in a general ward and there was visitors, the TV was on, there was cutlery, you know, rattling, there was care assistants and doctors talking to each other. 

So we – there was a checklist and, and I sat with the assessor who – a very nice lady and she and I got on very well – and it was – she was scoring on a sheet, you know, asking him to do things, trying to get him to turn his head, at – you know, but no – but there was no consistent response, there might be an accidental – what might have been considered an accidental response.  And – but we went through the whole thing. And he was in that rehab facility for seven months until we found a place that could care for him with his trachy. And he’s there now and they do look after him beautifully, but the result of the SMART assessment was that he was minimally conscious to vegetative.

So as they filled in the score sheets, say more about how that feels as a family member.

Well, your heart sinks, you know. Because you’re hoping. And people who don’t understand what has happened have a feeling that, you know, he’s just going to wake up some day. People have woken up from comas, you know. And although I kind of knew, I still wasn’t going to – I wanted to maximise his chances of any recovery at all. But the fact remains he will need constant care for the rest of his life.

When Angela first spoke with us in 2012 she hoped her husband might recover enough to come home. 2 years on she no longer thought this was realistic.

And it sounds like – I think when we spoke to you a couple of years ago, you didn’t feel you’d lost him, you felt there was still hope. And now it’s you do – maybe – do you think you’ve accepted – what’s got you to the place you’re at now?

I don’t have much choice. I’m a realist. I – you know, the social worker in the rehab hospital said to me, “You’re quite sensible about this kind of thing,” you know, and [laughs] she said, “We have families coming in here saying, no, he’s coming home, no, he’s coming home.” And I said, “Well, of course I want him to come home, but if that’s not possible it’s not possible. And until I know it’s not possible for sure, of course that will always be a hope in the back of my mind.” I think from the very beginning, I kind of knew, but I couldn’t – I wasn’t ready and he wasn’t ready. Until he had the assessment. And once I knew that that was the next thing that’s what I aimed for. And so I had that to focus on. And, and their assessment was that he was vegetative, minimally conscious.

So did the SMART test damage your hope, make you become more realistic? What—

No, I [sighs] no, no it didn’t. I – because I was there for it and I could see what they were trying to, to illicit from him. And I could see that it wasn’t forthcoming. So it didn’t surprise me. Because we had been kind of working with him ourselves, trying to illicit a response. And – any response at all – and failing. Their system wasn’t hugely different from that, you know, making a noise over here, seeing would his head move. You know, it seems when one of the physios, I think the main – the head physio from the rehab hospital came in to see him for the first time in the general hospital for a day assessment – they were spending the day with him, they were going to do all that – and she walked into the room and stood in front of him and then kind of moved like this. I asked, “What on earth’s all – he’s not going to follow you.” Jesus. I mean, even I know that. She was a very nice person, but for fuck sake. You eejit. He’s not going to follow you, [laughs] he might follow me. But maybe I was – maybe that was me just being hopeful when I spoke to you guys last maybe, you know. The assessment hadn’t been done at that stage I don’t think, it was quite early on in – was it two years ago about? It’s been two and a half years, you see. Yeah, yeah. And you see, the more you learn the less hope you will have, because you hear of this person – and we did hope maybe that the ambium or zopl – that stuff, we hoped it might have something, but absolutely no, no effect at all. 

Angela finds she lives in constant fear of her husband finally dying. She doesn’t know if it would have been better if her husband had died the day he sustained his injury. She says his current state has left her with unresolved grief.

You’re in pain all the time you see. There’s not a minute you’re not. Because it’s happened. You can't unbreak your heart, you know. If you lose love through, you know, romantic love through somebody walking away from you or somebody dying, maybe a new love can help mend your heart. But in this case, you see, I’m still in love with him, and there’s no new love for me. [Cries] I just want him, he’s the only one I want. But I can't have him. It’s [sighs] – I started to see a counsellor because I was having a really hard time – at the time I just felt like afraid all the time and it’s not something I am, I’m not a coward. And to be in fear all the time when I was afraid of nothing, except losing him. 

I had no problem the last two years fighting for him because he’s worth it, he really is worth it. But I don’t know if it would have been better if he had died on that day. I can't say, I can't say.

How would it have been different?

Well, I guess by now I would have mourned him. Or at least done some mourning. But I’m – it’s kind of what’s called unresolved grief or – I think we were talking about that before. [Sighs] I don’t know. I can't imagine it, you see, I can't imagine.

Angela feels redundant visiting her husband because she gets no response. She describes how she, and other visitors try to act cheerful when they go into the care home.

I just chat to him, tell him I love him. … [Cries] He knows that but I tell him anyway. I sometimes read to him. Mostly I would sing and play the guitar. Because I do stuff that we used to do together and I do the easy stuff like the Presley stuff with three cord things. Because I’m not really a guitar player, I’m, I [play the piano] primarily, but – yeah, I took up the guitar again, I actually bought a guitar, because he’s got, he’s got about a hundred guitars, but I didn’t want – they were all good ones, you know. I didn’t want to be bringing into the – in and out of the hospital, you know. And we’ve left a little – there’s a wee guitar in there as well. And in the – you know, when the weather’s good we go outside. And he had a tan when he was in the general hospital because he was outside twice a day and we’d feed the birds and I’d make sure he got some air and sunscreen and his shades, and we would sit there. You know. 

In the rehab hospital the social worker there said if Oscars were given out for acting in here the place would be littered with them. Because people come in with their hearts broken and they’re trying to cope with situations, and they try and act as if everything is okay, you know. And it’s not, and your world is collapsing around you and you’re losing everything that’s important to you, but you have to keep going. 

One of his friends said to me one day, “Oh, [Aaron] wouldn’t want to live like that.” I said, “So what do you want me to do, go up and smother him with the pillow? You big eejit. Don't phone here again.” And I won't take it, I won't have people speaking like that about him. “Can I come and visit him?” “No, you can't.” People who were kind of ghoulish about it, you know, just wanted to see him. You know, some of his other musician friends did go in and see him, they didn’t tell me they were going in, but there was three of them and I think they were nearly holding hands going in, they were so terrified. But he phoned me later and he said, “He looks fantastic and we talked to him. We were going, do you remember that gig we did, and we reminisced.” And I was glad, I was really glad they did go in. Though it can be hard for people to see, because they don’t know what to expect and they don’t know how, how difficult it is to look into someone’s eyes and not see any recognition or any awareness -especially someone you love, you know. 

And you’re surrounded by people who are injured. So every day of your life that you’re going in and out of these places, you’re not just seeing your loved one, you’re seeing other people’s loved ones. And all the little tragedies and big tragedies that happen. …If I ever get sick I am not going to hospital. …Like hanging onto the door frame like this. 

Angela’s husband – although usually unresponsive - wept on his birthday and on their anniversary. It was heart-breaking to see him weep, but at least it was a reaction.

The first time it happened, he actually was really sobbing. And it frightened the crap out of me. But it also made me feel, well, he’s feeling something. He’s feeling something. It’s not a nice feeling, but he’s feeling something. This is good, it has to be good. And it continued – it was when he was off his medication, and it continued – a few times – he did it again on our anniversary and I was reading an anniversary card to him, and he did it again on his birthday, when we were singing happy birthday to him, he started to sob. And it was unbearable because he was, he was crying like a child, not like an adult. He was uninhibitedly sobbing. And it rips your heart out. You, you really do feel like you’ve gotten punched in the stomach and someone has reached into your chest and pulled out your heart and stomped on it. 

[Speaks tearfully] To see the person that you’re trying to protect so unhappy and crying. And I’m very protective of him, I always have been. I mean, that’s funny, because he’s six foot tall and I’m four foot ten. But I used to look out for him all the time. Because he was really soft [cries] underneath, he was really sensitive and soft underneath his cutting kind of humour, his assertiveness, you know. He was never – never seemed to be in any doubt about what was right and wrong in – like everyday day, you know, he was a man of integrity. And – but very easy to wound. And I always – because I’m tougher, you know, I’m [sighs] I am tougher than he is, so I just kind of protect his feelings. I wouldn’t – I would jump to his defence if anyone said anything about him and say, “What?” [Laughs].

And one of the guys in work said to me, “You’re the only woman I’ve ever met who never complains about her husband.” I said, “What’s to complain about? He’s great.” [Laughs] You know. People are like, “My fellow does this, my fellow does that.” No, not my fellow. Even if he was the worst in the world I wouldn’t say to anybody. Desperately loyal, very loyal, both of us to each other and to our families, you know. But watching him cry...

Did you feel at those moments he understood his situation? Or what kind of interpret—

I don’t know. I don’t know. 

See, if someone’s – when someone’s brain is injured this like, it’s everything of them. It’s their hard drive. It’s the bit that controls their personality and their physicality and everything. And when you can't communicate with them, it’s just heart-breaking. His brain was what made him what he was, you know, his brain was him, as it is it for all of us. And, you know, I’ve heard about personality changes and all the things that can happen, and I was willing to accept any of those things. Even just to get him back a little bit. And of course, I would have accepted it like a shot. But that’s all I got, was crying. And not even like looking at us and crying, or looking at me and crying, just crying, as if he was on his own. It’s like he’s on his own. So now when I go into him, I’ll just put my arm around him, and put my head on his shoulder and talk to him and hug him and kiss him, because that’s the thing I can do. That’s all I can really do now. And hope he feels it.

Angela thinks that she ought to take some time for herself – and try to recover from the exhaustion and stress that have defined the last few years.

But now that he’s been assessed and –it occurred to me when we were talking before that I have to take a step back. I think it’s this survival thing, I have to take a step back. Because I’m not his – I was kind of his primary carer, even though he was in a general hospital, but I did all his laundry – I still do things like I shave him and I do all his manicure, pedicure – I won't let anyone near his nails, I won't let anybody near them. One guy cut his nails off, a bit tall guy, and he hacked them off, you know. And I said, “Here, you.” He’s a big huge guy, he’s about six foot four. “Come here. Never touch his nails again.” So he was – so – they were just trying to help, because he’s a guitar player, he has long nails and his nails grow really fast so I have to keep an eye on them. 

So I do his shaving and – but when he was in the general hospital he wasn’t able to have – he wasn’t in the showers or anything, so all the stuff had to be done – like I’d actually soak one foot at a time and [laughs] clip his nails and give him a foot massage and that kind of thing. And so you would be there for hours, you’d be there for hours trying to get him sorted, you know. But they’re the only things I can do for him now, and play some music for him. I talk to him, I tell him what I’ve been up to and what’s going on, who’s doing what. And I get – I normally get a waking up when I talk to him. He will move his head and maybe open his eyes and that kind of thing. And then he’ll probably – most likely go back to sleep again, most often that’s what happens.

But I’ve had to take a step back because it’s either that or have no life at all. And [sighs] and of course like for two years I didn’t get sick. I couldn’t afford to get sick. And then I got sick this Christmas and I was flattened, absolutely flattened. And other people that I was working with all got this cold but they – and they were all older than me and they all improved within a week, and I was still sitting like a bag of shite on the couch feeling awful, you know. And I couldn’t go in and see him for three weeks. And it was only then I realised how hard it is to go in every day.

Angela describes how worn down she feels after her husband’s injury, but has been very lucky with the support she receives

It renews itself. And, I mean, at the beginning you’re not getting proper sleep, you’re not eating properly, because you don’t want to, you can't. It’s – sleeping was [sighs] not being able to sleep was just dreadful. Not dreaming when you do sleep, no dreams. Falling asleep listening to the sound in your ears of the trachy machine, his, his respirator, you – I could hear it when he was in the first hospital, every time I closed my eyes and tried to sleep I could hear that sound. Because I was listening to it for hours every day, you know. …It just changes your whole life, everything changes. Suddenly you have to decide what is to be done with everything. With your home, with your work, and this person that you’re responsible for. And everything is down to you. And shouldering it is what keeps you going in lots of ways, but it also wears you down. …I’ve been very fortunate, I’ve been very fortunate with my friends and family and colleagues. Who all supported me in one way or another, even if it’s just the drivers will give me a hug, “Come here.” And he’ll give me a hug, a bear hug. And they let me play darts even though my darts go into the wall [laughs]. 

And, you know, all those things, they’re all like strands in a net that are holding you up. And, if they do keep in touch with you those strands stay intact and keep you held up, you know. Just phoning to say, “How are things going? How’s [husband] doing? Is he comfortable? Is he...” you know. 

A lot of people who are ignorant about this will think, oh, he’s going to wake up some day. Oh, he’s going to suddenly react or he’s suddenly going to do this. You know, and when a friend said to me, “Oh, what happened when you went in after three weeks?” I said, “Nothing.” “Oh, I was hoping he’d have missed you and would have reacted to your voice.” I thought, fuck sake, you know, Jeez. And it hurts, you know, it hurts. Because I wasn’t expecting that. And her saying it is like – but that’s all counter balanced by all those brilliant people, brilliant people, who have helped. And I’ve made so many friends. I’m not a person who makes lots of friends, you know, I wouldn’t hang around with a group of people I’m quite gregarious but they’d be more acquaintances than anything. But I actually have made friends since this happened. Because I’ve needed them I suppose and I’ve reached out to people.

Angela feels she has become less forgiving, and describes how some people can be very thoughtless about the language they use.

So the last time I saw him standing upright was on his way down to surgery. And I don’t know if he’s ever heard or seen me since in two and a half years. And it’s changed, it’s changed me because I’m not as forgiving as I would be. There’s not one person in this world I hate, I’m not that kind of person. If I fall out with somebody the way we fall out is, “oh, all right then. Will you give me a call? Nah.” And that’s it. I don’t like fighting, I don’t like confrontation. I don’t take any shit from people, now that’s a different thing. But it’s changed me now. And I would stand up, I would stand up to people who… there’s – people are thoughtless about what they say. I think we were talking about this before. For instance, now if someone says, “Oh, I’m just going to go home and veg out.” You know, I really wish you wouldn’t use that word, you know. Or, “It’s a no brainer.” Or one of the guys I work with has frequently said, “Oh, I’m brain dead today, I’m brain dead,” you know. 

The hospital may refuse to place Angela’s husband on a ventilator if he develops life-threatening pneumonia, she talks about her desire for her husband to be free of stress or fear.

I – we don’t get any reaction really from – unless he’s physically distressed. Unless, you know, his chest is at him or something like that. Now he was taken into a general hospital Christmas 2012 – 2013, sorry, with pneumonia again. And they, they put him on a ventilator, so – but when I spoke later on to a palliative care consultant who said to me, “Look, the sooner we can put a plan in place for your husband the better. And these are some decisions you might have to make.” He said ultimately it may not be my choice, the general hospital if, if my husband got pneumonia again they may not put him on a ventilator, they may feel it’s better to let his body deal with it in whatever way it’s going to deal with it. Of course the fact remains that although he’s a very youthful sixty-nine, he was sixty-six when, when – he’ll be sixty-nine this year. He was sixty-six when the surgery happened. A very youthful and very fit man. This injury has totally reduced his life expectancy and his longevity and it’s, it’s now like you feel like you’re in a limbo and you don’t know – you don’t know when or how or why. 

[Sighs] Yeah. Maybe your expectations change. …You go from maybe hoping for what might have been a full recovery to partial recovery, to no recovery. I can't say, you know, the fact that [husband] is staying alive – his sister feels very much that he will decide on the next phase for him. And all I want to do is make sure that it’s as stress free as possible for him. I don’t want him to suffer any more in any way. And so I had to have a meeting with the palliative care chap, who was incredible. Absolutely lovely person. And he told me what he thought I needed to make decisions on. And we met again in two weeks and I had made those decisions, and he said, “Making those decisions now, as you have done fast, is excellent. So now I can put a plan in place for [your husband].” And he said, “Have you spoken to the family about this?” And I said, “Yes. I’ve asked them all did they want to be – did they want to give me their opinion on anything, and they all, without exception, said, no, we trust you to make the best decision for [him].” [Cries] 

Decisions I never wanted to have to make. [Cries] They’re not my decisions to make, they shouldn’t be mine. They should be his. And I suppose they will be his, I think [sister-in-law] is right. I think [husband] will decide when he’s had enough. And I, I’ve spoken to him. I’ve spoken to him about it, and I said, “Look, if you have to go, baby, then you have to go if you’re unhappy.” I don’t know where he is, I don’t know what he’s experiencing. I don’t know anything about it, and just not knowing. You feel, okay, I don’t think he’s in pain. And that’s very important of course. I just would hate to think of him being afraid. Or lonely. [Cries] And I can't tell, I can't tell how he’s feeling. 

Angela says get all the information you can and never give up, stand by for your injured relative.

Find out as much as you can about how you can help the person you love. And then don’t stop, don’t give up and persistence is the only thing – education – what’s sad is that an awful lot of people might not have the education to – or the ability – or the resources to source some of the information that we got. And that’s when they kind of need someone to help them. But do persevere with whatever it is, because money is not going to do it unless you’re absolutely loaded and can pay for everything that you need. And just don’t give up on them. Because you might be the only one they have really, underneath it all, you might be the only one to look out for them. And that’s, that’s about the size of it.