Age at interview: 43
Brief Outline: In 2013 Phil’s 46yr old partner, Lewis, had a brain haemorrhage leaving him in a minimally conscious state.
Background: Phil is 43 years old. He worked as an investment consultant and has been with his partner, Lewis, for 16 years. Lewis was an IT project manager before being made redundant in 2011. He was just about to start volunteering at a local library when had his haemorrhage (aged 46). He was a keen chorister with a wonderful bass voice, had a wicked sense of humour and loved bridge and musical theatre. Phil takes some comfort from the fact that luckily, and “as a perfect illustration of not putting off to tomorrow what you can do today”, they had fulfilled one of Lewis’ ambitions and enjoyed a 3-month trip around South America in the first half of 2012.

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In 2012, Phil returned home to find his partner, Lewis, collapsed on the floor from a brain haemorrhage (aged 46). He was rushed to hospital where he had an operation to remove a blood clot and was placed in an induced coma. Interviewed in early 2014 Phil says: “Denial and hope are the only two things that you can rely on to keep a positive attitude really…. you just have to hope. And all they’ll say is, ‘it was severe, but the brain does strange things’. They say the first six months really count, then the first year really counts and things drag on. And over time you lose the opportunity to be able to sit down with the right kind of people to try and discuss it properly, yet at the time you don’t know what to ask.” 

A year after his partner’s collapse Phil paid for a private consultant to review Lewis’s notes and scans. The consultant indicated that “the most we could hope for would be to get to a ‘yes’ or ‘no’ answer, which would be a good leap forward from today. But that’s likely to be it. So that would imply severely, severely disabled and dependent at the very best. So that was crushing.” 

Lewis’s level of cognitive ability seems to vary: “he occasionally looks at me with normal eyes and might mouth words very quickly and that’s when I know he’s more there” but for a lot of the time he is more distant. After a long period of unmanageable pain, (“every day he was in acute pain, grimacing and wincing and it was just awful”) Lewis is now more comfortable. He can now swallow and “anticipates food coming, you don’t have to touch his lips”. Phil’s greatest hope is that eventually Lewis might be able to communicate in some form.

Phil has given up work to be able to go in regularly to the care home, and has formed close bond with other relatives there: “they have become my other family and we provide each other with empathy and a form of unstructured, organic counselling”. He hopes that Lewis is not distressed by his current existence, even though Lewis had previously stated he would not want to live like this. “They say that if you are like this then your perspective changes, so you can't guarantee that he wouldn’t want to have an existence where he could have pleasure from my daily visits… and all those things. But if something serious happened to him health wise again we might look to see if he would be able to go quietly instead of fighting so hard to help him live, and that’s horrible.” Phil misses Lewis terribly and is in grief but: “you’re grieving for someone that you’ve lost but you’ve kind of still got them, you sort of hope that you’re going to get a bit more of them but you don’t know what, when, how or if … you’re in a hideous limbo”.

It was ‘hope’ and ‘naivety’ that kept Phil able to stay optimistic during the early weeks and months. However, after a year he paid for a review of his partner’s notes and he now feels he has a ‘realistic’ sense of what is possible.

Denial and hope are the only two things that you can rely on to help you try and keep a positive attitude really. And so you just have to hope. Because you have no idea. And no one ever tells you with brain injury, there’s no definitive diagnosis, all they’ll say is, “It was big, it was severe, but the brain does strange things. The first six months really count, the first year really counts,” and things drag on. And people lose – well, you lose the opportunity to be able to sit down with the right kind of people to try and discuss it properly. And in the hospitals they’re always too busy. And in the end what I did last year, so a year down the line, I paid for a private consultant to sit and review the scans and just spend the proper hour to sit down and do that. Whereas I, I once had a five minute glance, and never got to talk to the consultant that did – led the surgery, it was always one of his people. And they were – they just said, “The surgery’s not really what you need to worry about, you’ve just got to look at what you’ve got and see how that evolves.” Which isn’t helpful. It’s kind of practical and I get it, but I suppose because they never really know what will happen at the end of the day, they shy away from telling you, or get – even getting into proper conversations.

Why do you think they shy away? 

I don’t know. Maybe because they don’t know, maybe because they don’t have the time. They just seem to. So you end up relying more on the ward or – we were in medical critical care at [Hospital] for most of the time. 

But we then spent time looking at that, looking at the size of the, the dark mass that represents the gaps in his brain effectively, how that was positioned. And I had a list of questions which I gave her which were about “what would you, what would you say the prognosis is, what we – no one can explain to us why he was doing better and then decayed, why might that be?” And then “what sort of whacky treatments are there out there that we might be able to tap into that no one ever mentions but could – might be there?” 

And she was very good, she went through all of the questions, basically said the most we could hope for, looking at what she’d seen, would be to get to a yes or no answer, which would be a good leap forward from today. But that’s likely to be it. So that would imply severely, severely disabled and dependent at the very best. So that was quite crushing. That was kind of diminishing the hope moment. 

Phil talks about accepting the reality of his partner’s condition. He thinks he could not face what it happening without hope.

To get to – to try and get to a point where he is able to get to “yes” or “no” I suppose. Keep him as comfortable and in as less pain as possible. And try and – yeah, try and get to some sort of communication, it’s about as basic as that really. He’s –it’s clear to me that he isn’t going to be coming home. And he needs two people twenty-four hours a day. This house is not suitable for him. If money was no object then I probably – well, if money really was no object then I would get a tailored care home set up for the few of us that are all together and are friends. But the hopes I had of having him home are no longer there, because it’s just not going to happen, unless some – barring some kind of miracle. So it’s about improving his quality of life and hoping to get to some form of communication. 

There’d been a BBC documentary which we watched, Panorama, which was very helpful to give you an idea. But it was just – it’s about removing any opportunity to have the denial or really understanding what it is that you’re facing really. All of a sudden you’ll see loads of people in that same boat that are either in a vegetative state or minimally aware, or doing better than that but still severely disabled. And it’s about a new – waking up to a new and very painful reality I think. And that seems to be how the grieving has been. Whether it’s for – the grieving for fear of loss or the grieving for a new reality, and, and a different sort of loss. It’s the fact that you’ve lost your partner. You’ve lost a whole comfort blanket that you live within that comes from long term relationships and that sort of thing. And I suppose a certain element of – it is, it’s the wiping out of bits of hope I suppose, and accepting how bad things really are.

Even though I know that the chances of him recovering meaningfully are next to none, there is always some sort of hope that maybe he can. And that’s part of what drives you every day. Otherwise- if you didn’t have any hope, I don’t think you could do it. Because on the days that I feel – I don’t feel hope, I want to run away, but I could never leave him there. [Pause] [Laughs] But that, that is how – that’s the only way to cope, is to hope. 

‘A hideous limbo’ is how Phil describes his situation, and he feels that he has been unable to fully grieve for his partner since the brain haemorrhage.

But – so going – so I had thought that that would have led to me having the next level of my – stage of my grief, but it hasn’t come yet. It tends to come when I’m on my own usually. And it’s been near, but there have been enough things going on I think that have stopped it coming through. And I can't predict it, I can't bring it on. And something stops me doing it with other people, strangely, I don’t really know why. So the, the first was – the first time I did it was the night that the haemorrhage happened. And then the next part was the day that we went to look at [London Specialist Centre] before he went, because then you’re getting a clear glimpse of what life’s really like. Because in hospital you don’t see it really. 

And then… the – I thought I’d been – there’s been another one and I’m trying to think what caused it. …I’ll see if that comes back to me, I can't think what the third thing was. And this is like the proper sobbing, uncontrollably grieving. I’ve – there’s definitely been three. And I thought I would sob when I got to [UK care home], because that was the next thing and knowing that that would likely be long term. But I actually locked my keys in my boot as I was loading his meds in. So the ambulance left with [name] to [UK care home], I was stuck there for a couple of hours and that – all of that just kind of meant that by the time I got there they’d set his room up lovely and unpacked everything. I was so grateful I didn’t have that emotion. So it’s actually quite a long time since I’ve had a real sob. But I can feel – I’ve had quite bad cries but it’s not the same. And I don’t know now what the trigger will be that will cause the next thing. 

But the hardest thing about this is that you – you’re grieving for someone that you’ve lost but you’ve kind of still got them, you sort of hope that you’re going to get a bit more of them but you don’t know what, when, how or if , and so you’re kind of just fucked really [laughs], you’re in a hideous limbo. Which is emotionally exhausting and stressful, but you want to be part of it, you want to help and love and support and try and make their day as least bad as it can be. And you, you’re just sort of stuck in that now. We worked hard and saved hard, so very luckily I was able to stop work when I tried to go back but couldn’t, it was too – it felt too irrelevant to what life was – what life meant. So I’ve kind of put that on a pause so I can go in every day.

Talking to other families ‘in the same boat’ has been invaluable to Phil. He feels under a great deal of emotional stress (and has now got a puppy which cheers him up, but adds its own challenges!).

I spend a lot of time shutting everything out. I’m emotionally exhausted from the stress of dealing with [partner] and helping him. Not deal – well, it is dealing with it because there’s a lot to deal with as well, and trying to help him. And it’s sad every single day. And then I’ve just added a heap of stress with madam [the puppy]. But in a few weeks she’ll get more settled and house trained and everything. So that’ll be a bit less stressful. 

But that – for me that’s how it seems to have manifested itself. And I think everyone that I’ve – the sessions that – where we just sat outside at [London Specialist Centre] – because the gardens are gorgeous, we had a wonderful summer, so every day we just sat outside, and we just chatted. And we’d laugh and cry and flip flop about stupid things and serious things. But it was all just… oh, what’s the word I’m looking for – it just happened as it needed to happen. There was nothing forced about it.

It wasn’t ten o’clock on a Tuesday and you were sitting—

Exactly. And so that was, that was great. And it sort of gave you all that emotional support. And the level of understanding that they have versus anyone that cares for you but isn’t going through it is completely different. There’s real empathy there. So everyone else tries to be helpful and loving and supportive, but it’s not the same, because they’re just not on the – organic, that’s the word I was looking for. It’s just not the same. 

I made some very good friends. One at [Hospital] initially and some others at [Specialist Centre] and very happily their loved ones have moved to [the care home] as well. So our family is back together. We’re in slightly different parts but we’re there now for each other, even if it means going to have a coffee in their loved one’s room rather than having a nice plenary area that we can all move to – which [Specialist Centre] had in spades but [the care home] doesn’t really. It needs a carer’s annex really, but it doesn’t have that space sadly.

And do you find you’re able to talk completely openly with the other family members?

Yeah. It’s been the therapy that therapists couldn’t give me. And I think they feel the same. I’ve had some counselling. I had some that work provided early on. And it – actually it just pissed me off, I didn’t like being told to sit down at ten o’clock on a Wednesday morning and reveal my feelings, that didn’t work. So I stopped after a few. And then I got some more through the GP that was – the process began in February but finally in June, July time the counselling was available. And he was very good actually. But actually what it turned into, or what I found helpful was not to sit and cry – because I – it’s just not – I don’t know why it’s not my way but it’s not. But actually just to sit and talk through the worries and problems that I’ve got, so it was a different sort of counselling. And he was very good. And he taught me something about mindfulness.

Phil argued for his partner to go into critical care because he feels Lewis gets very little attention if left on a ward.

So the grieving – oh, this crush – this news was [laughs] – so ironically just early into the New Year [my partner] got a UTI and his blood pressure plummeted as well. So they rushed him into [Hospital] and he was touch and go for a couple of days as to whether he would live, and we were back on the ward that we’d started on, so I thought we’d come full circle. But this meeting was whilst he was there. And that, that was the first – that was his first serious illness really. And when we got there – and I think the reason his blood pressure dropped actually was because of a new drug that we were trialing him on. Because Baclofen makes him so sleepy, we were trying him on Tizanidine. But that actually doesn’t seem to be working very well for him. And one of the side effects of it is it’s causing his blood pressure to drop. And I think we were probably lucky that it had dropped when they tested it, because he would have died within twenty-four hours apparently. It manifested itself into very aggressive chest sepsis or pneumonia. 

When we got to [Hospital] they put him on a couple of antibiotics and said – we had to have the whole DNR conversation, which I agreed he doesn’t have a quality of life, so why would you really resuscitate him. Much as I hadn’t really wanted to go down that path. But that’s what they suggested and I couldn’t really argue with it. And then it was a case of, do we put him on a ward or take him into critical care but treat him medically but not organ resuscitationally. And I just – I said I couldn’t bear the thought of him going onto a ward where he’d get scant attention. We had a – we were in a ward for the last few weeks at [Hospital] where you’ve got eight bed in two rooms with one nurse and it’s just crap. And so I said if – could we please go for the critical care option and they did it. And so once again they were fabulous in there and that saved him. And within a couple of days they’d identified the culture that they needed to give him the right antibiotic. 

He wouldn’t have wanted to be like this, at all. But you… what we don’t know or haven't known is what this is yet. And for the – for a long time you believe that there can be a recovery, to have some sort of quality of life. And I think that if – so I had thought that, yes, he probably would be wheelchair bound and might be quite dependent, but I had thought that maybe he would be in a position where he could help me help him. And we could have a nice enough life together that perhaps he might be happy with that. And then the whole – when we were back in hospital this time – which is the first time I suppose to test that question really… I accepted that there’s no point – if his body is giving up let it give up. I accepted that that should happen, so that’s the DNR thing. But I wasn’t ready to accept him being left in a corner to die. But now we’ve gone through that once then I probably would find that less hard next time.

Is that how it felt, it would have been leaving him in a corner to die?

There was a real risk of that, yeah, that there would be neglect. Because his needs are complicated, because of his pain, and he’s in – and he can't talk, he can't ask for help or anything like that. So he’d be stuck and effectively the risk of him being neglected would be acute. Because if you’ve got seven other people who are screaming out you look after them. 

I think having fought through the illness that he’s just had to realise that this is all he’s got at the end of it changes my perspective should something like that happen again. Which is another hideous thing. Another reason that I thought I might have grieved again. But I think if he did get really ill then I probably would look to see if he could just go quietly. And I talked to his – luckily he and I and his mum were always on the same page about no one would ever want to be like this. They say that if you are like this then your perspective changes, so you can't guarantee that he wouldn’t want to have a, an existence where he could have pleasure from my daily visits, daily visits from other people and the dog and all those things. But if something serious happened to him health wise again we might look to see if he would be able to go quietly instead of fighting so hard to help him live, and that’s horrible. 
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