Kevin & Miggy

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Miggy found it tiring pretending to be positive for the sake of people who came to visit her son

Miggy: I think one of the hardest things in it all is how to deal with other people, because Matthew had his twenty-first birthday while he was at home and people came in, and how on earth do you celebrate a birthday? But you have to pretend something for all those people who’ve been kind enough to give presents or their time. So you, as his main carer, as his mother or father or sister, have to go through this charade, “Oh thanks, he’ll love that. Thank you very much. That’s wonderful. Matthew, look what they’ve brought you.” And you are actually play-acting, really, and that, unless you like acting, that becomes so wearing. Absolutely drip, drip, drip, wears you down. 
 

Kevin and Miggy describe a sense of calm once the feeding tube was withdrawn, but felt they had to keep the decision secret – and that was very difficult.

Miggy: There was a very nice sense of—
 
Kevin: Calmness in that, yeah.
 
Miggy:: Well, because of course— Yeah, calmness.
 
Kevin: Yeah.
 
Miggy: Because he no longer had the feeding tube or the machine going around…
 
Kevin: Yeah.
 
Miggy: …it was less medical. We did bring his bed back from the hospital with his Nimbus mattress and set that up in our bedroom again. And I brought some freesias in because they smelt nice and the house was just very lovely and non-medical. It was very pleasant…
It was just a very pleasant, homely, wonderful thing to have him back and to have him back knowing that he would die at the end of it, with the sanction of the court. Nobody had done anything wrong.
 
I was still fearful that somebody would get to know and I would have people outside the bungalow with banners. That was my big worry. So we had to be a little bit underhand, didn’t tell anybody. Quite hard when people came to visit. I remember my brother-in-law came to visit and he’s just a very nice man. This is the man who was the vicar. He’s very nice, but I didn’t want him to know. And you know, “Oh, Matthew’s home.” “Yeah, yeah, yeah.” “Don’t see the…” [laughs]. “Don’t see the feeding thing,” [laughs]. “Oh, no.” “Oh, okay.” [Laughs] And we just had to sort of not tell anybody, which again was so hard because I think I could’ve done with the support of all those people who loved me.

When Miggy’s son was close to death with an infection she wishes nature had been allowed to take its course.

So was any meeting held to discuss how to treat that?
 
Miggy: No, not at all. They never, they never, from the minute we took him home— Well, I say that, because we did have the rehabilitation meeting, didn’t we, at [hospital name]?
 
Kevin: Yeah.
 
Miggy: There was no meeting. There was no talk about what should we do about this. But that, that would’ve have been an ideal opportunity to let him slip away. Let us sit by his bedside in a hospital, hold his hand and say goodbye. And I know, I don’t, I’m pretty sure, at that stage, I was no longer [laughs softly] in Joan of Arc mode [laughs]. I think I’d calmed down a bit [laughs].
 
Kevin: [Laughs]
 
Miggy: So I don’t know what was going on there.
 
Did you have a meeting with the doctors treating him at all while he was in hospital?
 
Kevin: They just come and spoke to us on the ward, and that was it.
 
So, he came and spoke to you. What did he say?
 
Kevin: Just said, well, told us what, basically what they were going to do and everything.
 
Miggy: But there was definitely no, because I vividly remember the time when he’d had the big fit early on in hospital, the one that took everything away, took the famous holding tone away. I vividly remember coming in the following morning and the covers were around his bed and everything was all a bit odd. And I thought, oh, what’s going on here? And one of the, I think it was the Registrar possibly said to me, “He’s very poorly. He’s had a really big fit. What do you want us to do?” And I thought, what’s he asking me here?
 
Kevin: Yeah.
 
Miggy: And I twigged what he was asking me and I said, “Well, I want you to treat him, of course.” You know, at that stage, even though he’d had the fit, I think we still thought we might get somewhere. But there was definitely none of that conversation when he had the bad lung. I didn’t, I definitely didn’t have that conversation with anybody, because I think I would probably have given a different answer, given the opportunity at that time. If I was given rea, if I was really given that opportunity when he was admitted into [hospital name] with the bad lung, I’m sure I would’ve said, “Well, as long as you can sedate him and make sure he’s not in any discomfort, let’s, let’s let nature take its course at this stage.” But the question was never asked. 

Kevin and Miggy wish they’d had regular opportunities to be given more information and to discuss their son’s prognosis.

Miggy: I think we’d have all been better off if he’d have died quite soon of his injuries. I think that would’ve been better all round. I would say the doctors who did the reports, they were okay, weren’t they? They were —
 
Kevin: Yeah, they weren’t – I didn’t think —
 
Miggy: I think sometimes you see – you’re reading these things in a report, and obviously the report – we had, we had doctors doing reports for our compensation claim, then we had doctors doing reports for our court case, and you often get your information from the report. Like, “He isn’t going to get any better and his life expectancy is so-and-so.” And that’s the first time you get that piece of information when you’re writing a report that’s been done for a compensation claim. But I don’t recall having that conversation with a doctor, just sitting around a table.
 
So you’re just faced with it in writing on a piece of paper?
 
Miggy: Yeah.
 
Kevin: Yeah.
 
Miggy: And, and that it’s been done for another purpose. That the reason for that report in the first place is because you’re making a compensation claim, or because you’re applying to the court.
 
Therefore...?
 
Miggy: That it’s almost accidental that you’ve received that piece of information. I—
 
You—
 
Miggy: I think you sho, I think you should have more information, like more of a chance to sit around with people. You know like people have – I know when I had breast cancer a while ago, they said, “Well, we have an interdisciplinary meeting every Wednesday afternoon to discuss the cases, and this is when the decisions will be made.” I’d quite liked to have been in a meeting, an interdisciplinary meeting, along certain stages of Matthew’s care. I realise that’s sort of costly and time-consuming as well. I probably would rather they spent the money on physiotherapy to try and make him better than having me in a meeting room. But I think that something like that would’ve been helpful, to know more from professional people. Not just from nice nurses trying to chivvy you along, but actually some solid information that would help you make better decisions.
 
So, comparing it to the kind of information you were given with breast cancer, where you had consultations, presumably, about—
 
Miggy: Yeah, what they were going to do, what— Yeah, noth, we never had anything like that. We never really had a, we never sort of quite knew where we were going and it was always down to us to decide where we went with it.

The surgeon who operated to save their son’s life expressed doubts about whether he had done the right thing.

Kevin: And Matthew was rushed to, rushed to surgery immediately. And in that period of time, we spent in a little guest room on the side of the ward and then after, I don't know, it seemed like forever, but say maybe two or three hours, the surgeon came out and said, “I've operated on your son. I've saved his life. I don't know whether I've done right or wrong.”
 
Miggy: Hmm.
 
Kevin: - And that was his exact words.
 
And when the surgeon said, “I’ve operated. I’ve saved his life. I don’t know whether I’ve done—”
 
Kevin: Well, to be honest with you, it’s later on in life that you realise the words he said at that time. You don't, you don't understand those words when he, immediately when he said them.
 
Miggy: Yeah.
 
Kevin: You know, we didn’t, we didn’t, you know, we didn’t know then what we were going to learn over the next eight years.
 
Miggy: Exactly.
 
Kevin: You know [laughs softly], if you don’t—
 
Miggy: And we’re, we’re such optimists.
 
Kevin: Yeah.
 
Miggy: We only need a tiny bit of something and the surgeon said that but we thought, yeah, that’s for other people.
 
Kevin: Yeah, yeah.
 
Miggy: Matthew’s big, he’s strong, he…
 
Kevin: Yeah, that’s right, yeah.
 
Miggy: …keeps himself fit, he’s determined. We’re a good family, we’ll get through this. 

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

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.

Miggy experienced her son’s death as ‘peaceful’ but wishes more sedation had been used and think a hospice situation could provide better support.

And the whole experience would’ve been better for the family, had he been more sedated.
 
I personally didn’t mind, as in I’d set up this time, this was going to be my time, but I felt it was very difficult that he was quite noisy and didn’t just fall into a nice little sleep and then die.
 
When you say ‘it was my time’, what do you mean?
 
I felt that quite strong because I felt very – the whole going into the nursing home was my low point. That was the one thing I had vowed would never happen, and it did happen. And I actually felt a failure at that stage. So, to bring him home with the sanction of the court and to be there with him was like almost turning the clock back to something that should have happened at his hospital bedside, you know, in intensive care. Like it was, it was the right way. I wouldn’t have actually wanted that bit any differently.
 
Having said that, if an institution existed where people where, where, you know, a little bit more used to this and, and we could have gone in whenever we wanted, almost a hospice situation, I think that would be good too. Wouldn’t have to be at home. As long as you felt you had access at all time, that, I think that’s possibly even better. 

Kevin felt that there was more love in withdrawing his son’s feeding tube than in letting him be sustained indefinitely in a permanent vegetative state.

I suppose, as far as I was concerned, Matthew was gone already anyway, regardless of stopping the feeding. You know, we had lost him totally, you know. So, as far as I was concerned, Matthew was gone already. This was - just putting an end to something that—Well, you know, just something that— I wouldn’t say not, we didn’t, I didn’t love him anymore or anything like that, but I think the love was what we did. To terminate feeding Matthew, I think there was more love in that than letting him carry on in the state he was, you know, forever more.

Miggy feels it was courageous to take responsibility and decide to ask if the feeding tube could be withdrawn

Miggy: But we had a regime where no antibiotics and just hoping that nature would take its course. But when nature doesn’t take its course, I think it’s quite brave to say, “Well actually, let’s be responsible about this and withdraw nutrition and hydration,” and take the responsibility and take the decision. And I’m, I feel very happy that we took that decision. We had the courage to take that decision and didn’t just let things carry on kind of hoping, fingers crossed, for an infection. But we had the courage to actually make a decision, with the court’s approval, that we should withdraw.