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His employers encouraged him to work at home whenever he wanted, to be with his wife. They offered him counselling if he needed it.
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So a whole series of domestic chores started to build up you know. We decided right from - well, it wasn't even a decision that she was going to stay at home. I mean that was mutually agreed. It was hardly even discussed, you know. I mean, there was no way I would want her to be institutionalised if I could possibly help it. So I went to my place of work and they were remarkably helpful. They were extremely helpful. And they gave me a laptop and said, “Well, just work at home. Just do what you can at home and, you know, look after your wife”, which was great. So that's what we began doing.
And people at work were very supportive. I just can't tell you how good they were. My colleagues - no, my managers as well as my colleagues - they just made space for me. They just made the space that I needed and they just left me to it. And they did have a work counsellor but I had all I needed from the counsellor we were seeing in the hospice, so I never used her. |
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They knew it might be MND before it was confirmed, so they had time to plan how to deal with it. Di's reaction was calm and practical.
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It took quite awhile to get an actual diagnosis done. We, we went to see the specialist at the hospital. I think in late September. It was a very quick appointment. And then we couldn't get any tests done until the following March. Apparently there's only one person in this area who does the tests. And she herself was ill. That, that was our understanding. So it was, wasn't until March until we got the tests done. So Di had to wait until that time although … although we were just holding a little area of hope in the back of our minds we, from everything we'd read and understood we were fairly convinced ourselves that it was motor neurone disease. And in fact we the, the specialist that we went to see had sort of confirmed that. He hadn't said straight out but obviously he wanted to get the tests first before he committed himself. But you know he did say to us, “And I think you should be thinking about, strongly about the possibly of MND”. That was as much as he was prepared to say. So really we were fairly sure at that time.
It was a really strange sort of six months, you know, because, you know, we were convinced and at the same time we were hoping, you know, and, and it was, we were planning what, what on earth were we going to do and how long might it take you know and the… what we'd read suggesting anything between eighteen months and ten years possibly. So what was going to happen, how would we deal with it.
And I got in touch with a physician who I knew that I used I to work with because I used to work in a complementary health clinic, who specialised in life threatening diseases. And he came back to us and made some suggestions.
But I think it was very clear … both to Di and to myself that we didn't really want to go down that route. We didn't really want to anxiously fight the whole thing you know. You know, MND the, the outcome was pretty certain whatever you did. And, I mean, I guess we both held out for the possibility of some unusual cure or, or prolongation of the disease. But we both realised that, you know, that it was terminal.
And I began to … I always knew my wife was quite exceptional in some ways and in an extraordinarily practical view of life but I didn't realise quite how extraordinary until this actually occurred. And, and she said, “Okay well let's just work out the best way for me to die”. |
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Getting care staff organised with Direct Payments was hard work. They needed more care hours, but staff sometimes didn't turn up and couldn't lift Di.
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So we opted for the direct payment system to try and employ somebody ourselves. Unfortunately what you have to do under the system is you actually have to set yourself effectively as a small business and do the PAYE and everything for the people you employ, the carers that you, you employ, an anti-fraud measure that the government has introduced. But it does make a hell of a lot more difficult. We were, there's a partner organisation in the County which will do it for you for a fee so we opted for that because there was no way that I was going to sit down… I was going to say at the end of the day. There wasn't an end of day you know and, and start working out PAYE and learning how to do that. So we opted for that. But we still had to do a lot of accounting, keeping hours, keeping records of, of annual, of leave that was entitled and all this sort of thing. So it was, it was actually quite a burden to do that. But we felt that because social services would use an agency and we'd, we would probably get a load of different staff in variable calibre, calibres we'd try to find somebody ourselves and that was very difficult. It was very difficult to find anyone really and certainly it was very difficult to find somebody who we could trust.
But we did eventually find someone both long after it was really needed and I was really absolutely in the ground by then, just day and night you know sort of struggling on. I felt dizzy a lot of the time. My head was buzzing from lack of sleep. I was getting about five hours of sleep a night. And also during the day and looking after Di and knowing that she was going to die you know. And so it was, it was a labour but it was a labour of love, with no positive end in sight.
After a while we couldn't cope with the hours that we, we had the maximum number of hours available to a carer, available to us through the direct payment. So social services set in and said okay well we can get you some agency staff as well [coughs] And we thought okay and that was a real nightmare.
We they started to put the staff in place round about the end of November early December time and we got the carers, the agency carers in. Some of them quite frankly I wouldn't leave alone with my wife. They were dreadful. I mean they were probably perfectly competent with somebody with a less serious, a less demanding disease, with somebody in a less vulnerable position. But I really really wouldn't have allowed some of them alone with her.
So we just had to struggle on. We went back to social services and we got an agreement with them, through the agency, that they would restrict the staff they said to two people that we felt were reasonably competent. One was actually excellent, the other was, was quite competent I felt. There were difficulties there that I felt but of course being agency staff they weren't allowed to lift. And the flat, the tiny flat we were in over the other way we couldn't get a hoist in, it was too small. So I had to continue to be available to do all the lifting, day and night. So I, I got more sleep but I couldn't, get you know enough.
And then came Christmas and for eleven consecutive nights when we were promised agency staff, they didn't turn up, at the last minute. There was nobody or we got a, or we sometimes got a telephone call saying the person had called up. But sometimes just nobody turned up. And I was I was just staggering around really, just trying to cope. But in the end in the end we found two carers who we employed directly who were good and two agency carers who were trusted. But as I say even up to there were problems with of getting the hoist in here as well. They made it a problem with the bathroom. They hadn't put in the electrics properly so they couldn't be a hoist put up. And Di was really in her last stages by then and really didn't want the disruption of the builders and so just decided that we would just carry on as we were at this point for the best. |
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He took responsibility for coordinating Di's care himself - it was exhausting, but worth the effort.
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We decided we'd take as much of this into our own hands as possible and we would rely upon the medical services as much as we needed, but we would try as far as possible to stay in control of what happened. And in fact our own GP was extremely good. He didn't involve himself more than we required, you know. He wasn't insistent about anything. He said, “Well, what are your needs?” And we decided, and we got on really. I mean, it was just one more responsibility that actually added to the exhaustion of it from my point of view. But looking back, I certainly wouldn't have done it differently for a quieter life at all. No. Because it did continue to give us control. As I say, I can't praise the District Nurses highly enough. They, there was nothing I would question about what they did. |
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The generosity and selflessness of friends who helped him care for his wife has made him see the world differently.
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What I need to say was that friends. We couldn't have done it without the help of friends. They were amazing utterly, utterly amazing. Fortunately I'm in my fifties, Di was nine years older than me. She was sixty, sixty four. So we had quite a lot of friends who were retired, who could come over. And friends who made time who were working but made time, made lots of time for us. And just people in the local community you know, people offered their help everywhere you know, practical help. Some insisted on, on financial help as well. Some were very generous in all sorts of ways. You know people we hardly knew, people we'd just met in the street and said hello to but we hardly knew just rallied round.
Two people when we were over in the flat and didn't have a washing machine people organised themselves into rotas to do our washing for us. It was just amazing. It changed the way that I thought about people, you know. And Di's big thing was always about community and I began to understand things through her eyes over a matter of time. It just has completely changed the way I see the world.
You know, we're rushing around all so competitive and sort of all having to meet our own individual economic needs. And then people were just abandoning their own interests and just rallying around all everywhere. It was just amazing. |
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Di used a letter-frame and signals such as teeth-clicks to communicate. She had been a lecturer so losing her speech was a devastating blow.
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As her voice got weaker and it became more and more difficult for her to speak until eventually she couldn't really speak at all, and just make little tricks and things. We developed a code where she could say yes and no and a few simple things just by clicking her teeth but she couldn't speak. So we communicated through a letter frame and that's what it looks like. It's just a series of letters around a piece of cardboard that's all it is, groups of letters at different points around the around the perimeter and then some coloured flashes here, yellow, black, green and so on. So to indicate to spell out a word Di would… say she wanted a letter A, she would look up here first of all to the letter A and because the A is black you know within that group of letters. She would then look down to the black flash. So two eye movements could uniquely identify a, a letter and she would the spell out what she needed or whatever she wanted to communicate. It was a long and laborious business but we actually got very good at it after awhile. And and we actually found that when we were out we could actually communicate with our friends because we knew where the letters were and she could actually to some extent, communicate just with her eye movements.
And the loss of her speech was a great, was perhaps one of the greatest loses to her because she was a communicator. She was a lecturer. She communication was her, you know, her big thing. It was really important to her. So when she got to the stage where she couldn't speak at all and communication… her eye movements although she could still make them and most of the time she was lying down and it was actually very difficult to interpret them even with the use of the frame. |
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Di's emotions became volatile a year before physical symptoms emerged and it caused some difficulties between them, so they saw a counsellor.
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And we'd also been to see another counsellor, in fact we started to see this counsellor before Di even got ill. And so for a kind of couple's counselling, because I think although the first physical symptoms emerged with Di's hands, the disease affects your emotional state as well and you get very powerful emotions, become very emotionally vulnerable. And that had actually happened for a, over a year before that first physical symptoms had emerged. And although there's no way of telling, I personally feel that that's the first sign of the disease. And Di became emotionally very volatile in that time and distressed and that, this - so we were, it was like a rubber band. We would suddenly be very close and warm with another, and suddenly the slightest domestic disagreement would blow up into a huge row and she would threatened to leave me and all sorts of things. And I had no idea of what was going on. It was all very strange. And she was under a lot of pressure at work and at that time I just thought it was just you know just stress, strain because it was so unlike her. She was very solid in many ways usually. We'd just work things out. This was this was different. |
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Di decided she had had enough so she stopped eating. They said a lovers' goodbye to each other. She wanted to be conscious, and she died peacefully at home.
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Communication became exceedingly difficult and she decided enough was enough. So at that point she decided to stop eating.
And from that point then obviously it was just a matter of time, a short time, and so we reconciled ourselves to that. And because we'd always felt that what we wanted to do was to help Di die well. We'd both agreed. We decided that best thing to do was to, to make sure that she could die at peace without a lot of attachments, clingings. So I talked to her children, her son and daughter, and we both agreed that we wouldn't, we would allow her to leave us. That we wouldn't make a point of you know sort of our feelings about holding on to her. We talked to Di and, you know, we were all grief stricken of course. And we agreed that was okay, we would show that. But we would try not to cling on to her.
And so Di and I decided to say goodbye you know, almost in a formal ritual way. So that there would be no sort of last minute you know sort of longings and clingings on between us. So we had a one evening when she was lying in the bed and was sat down beside her. She was sitting up and I just talked a bit about how we first met. And then we said goodbye. And I gave her a last kiss, a last lover's kiss, I kissed her again afterwards but that was the last time. And that was the most, of all the difficult moments that was the most difficult, but I am so, so glad we did it, so, so glad we did it. It was, it just was moving and just very meaningful you know, it rounded off our relationship. And so we were able to then continue and look after her until her death without any kind of, that awkwardness that emotional difficulty, you know, with that a long drawn out goodbye might've engendered.
And Di was remarkably brave. As I said she was quite extraordinary. There was no point at which there any 'why me's?' or 'it's not fair's', nothing of that. She had a way of facing difficult situations, turning them over in head and making them all right with herself. And I saw this all the time. And it made life so much easier for me of course I don't know what it would've been like if she'd been distressed and clingy and angry. She wasn't, she wasn't at all. And like she said it was it was a wonderful experience. It was I, I'm afraid of being misunderstood by saying that. But you know I had some bereavement counselling from the local hospice who were extremely good all the way through.
So from the time when she stopped eating to the time when she died was about three weeks. And on her last day we were short of provisions, her daughter was here with me and we were short of provisions and I thought well I said, “Well I'll need to nip out to the town for half an hour and get some”. And she said, “No, no don't leave the house, don't leave me”, which is not something she would've normally have said. So I think she realised that her death was very close. And after a little while she just started gazing into the middle distance quietly and for the first time it seemed to me that she actually relaxed because she was in so much discomfort, you know.
She was just skin and bone really by that time for not having eaten. So the discomfort was continuing. She didn't want drugs. She didn't want drugs at all even painkillers because they made her woozy and clouded her mind. And she had always wanted a conscious death. And also any communication that she needed to make was hampered, you know, with the letter frame. She would find it very difficult if she was woozy like that.
She just drifted and for about a couple of hours she just stared in to the middle distance and I sat with her. And her daughter came to her. Her daughter came through at a certain point and sat with her as well. Her breathing became quite deep and relaxed actually and at a certain point there was a last breath. And then she swallowed and it was just reflex, she swallowed about five or six times the next minute. But the life was gone out of her and I'm at lost for words really at that point. We kept her body at home for twenty four hours as she'd wished, dressed her. We'd all organised it. |
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After Di's death he felt she was both present and absent. It has changed his beliefs about death. Friends and his stepson were supportive, and the hospice provided counselling.
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Well, again, you know, friends rallied round, you know, afterwards and that was good. I had one particular friend who rang up every night and he came over quite regularly as well. We went out together occasionally. He just allowed me to talk endlessly about what was going on.
And I got very, became - after Di's death I became very close to her son, [son's name]. In a funny sort of way, I mean our relationship had always been mediated through Di and because she was nine years older than me, he's only - I mean he's not my age but he's not young enough to be my son in a way. He's my stepson but he's quite, he's quite an old stepson. And we, so we got very close and that was very, very helpful and we were able to talk a lot about, about Di and about her life and about our relationship with her, which was very good. It was very helpful to me.
I think what was difficult in the first early stages was a simultaneous sense of presence and absence. I mean, she was present in everything in the house, you know, because you know our lives, our relationship kind of entered into all, everything had a memory attached to it. And had she walked in the door at that point I wouldn't been surprised, you know. She was still very present to me in my mind and my imagination. But off course she was also very absent. And the sense of her presence often brought up a sense of absence and it became very, I was very confused.
So it was really important for me to talk about those things. And the hospice continued the bereavement counselling once a week for me and for I think twelve sessions after, after she died. And the counsellor was very good and that was very useful. She gave lots of useful feedback. She was, she, she took both, she, she had a very nice balance between taking a therapeutic approach where we were talking about my feelings, how I how I was reacting to the circumstances. And practically, sort of practical counselling is what you… This is what is available to you as well can I do this, she was actually also offering to help as well and that was very supportive as well. And because it was also the hospice where Di had, had been every week and I'd been to take her and visit her there, there was a sense of continuity about it which was good.
And it's put me in touch with family and Di had Di had a lot of family over in America and Canada. Her mother herself was Canadian. And I got really close to them and that's been very supportive for me. And it's a long, long process. I mean, its six months now since Di died and really, I mean, that's really only a very short time. So I'm still living with her in my head and it's like I'm still, she's still present in the house. That, that disturbs me, I'm not quite sure what to make of that. I think, I think it pulled a plank out of my belief system as well when she died. Somewhere deep down there's some foundation which I'd kind of built a belief system, because I had no belief in life after death at all. And yet for me somewhere she's still around, in a kind of space that goes beyond what's true and what's false, you know. It doesn't matter, you know it's like another universe in my brain that's just opened up where she exists. And I have a photograph of her in the front room and I come in and always talk to her when I come in during the day. Yeah and that's, that's okay, that's fine. That's a way of dealing with it. That's a way of dealing with it you know and while I'm talking to her she's real and she's present and when I'm not she's not, she's not. You know, it's strange.
But having, having friends around was important and also having solitude was important. I ride a motorcycle and that's, that's been quite a useful thing for me because I can go out on my own. And if I want to I can rant on inside my helmet and nobody knows [laughs]. I can get angry or upset. Get angry at the world for taking her away or I can talk to her in my helmet and nobody knows [laughs]. I'm out there and on my own and that's nice. |
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Caring for his wife made them closer than ever before, and they put aside trivia and disagreements. It was important to continue to have a sex life.
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We got very close. A friend actually asked Di, she said to her in the last few weeks, “It must have been a terrible year”. And Di said, “No it wasn't, it was actually a wonderful year.” The comment she made, she said, “In the last year I've actually learned to accept love fully for the first time and it's just been really wonderful.” And it was the same for me, it was, it was painful - very. It was difficult. It was exhausting, utterly, utterly exhausting. I've used the word exhaustion in my life before but I never really knew the meaning of it until then.
So I think it was very important that we really talked openly and freely about how we felt in those last eighteen months. And I think the very process, the very fact of Di's dying as well focussed our minds. So that many of the - a lot of the trivial stuff that had always kind of dogged our relationship was put aside. And we found it easy to do that. And we made a commitment, really, not openly but there was I think there was a commitment on both of us to just making that last year a wonderful year, you know. And to, we had some disagreements, we had just some disagreements. But we really wanted to, we just wanted to continue to be husband and wife together and to live our lives as best we could as we always had done as far as was possible, despite all the kind of hospital beds and commodes and everything that had invaded our house, you know. And we did that on all levels. I mean we decided that as long as possible we would continue to have a sex life. And I understand from the counsellor that lots of people kind of abandon that and you know. But it was difficult simply because it, you know, sort of Di's increasing paralysis. But it was meaningful. |
