Dick & Di ' Interview 31
More about me...
Di first noticed stiffening in her fingers and fasciculations (muscle twitching) about 3 years ago (2003). A friend who was a speech therapist told her it could be MND. After their GP referred them to a neurologist, it took about six months to get all the tests done, which confirmed that it was MND. Dick felt angry at Di’s diagnosis, but together they decided they did not want to spend the rest of her time trying to fight it. The first thing they did was go on a wonderful holiday to Venice.
They chose not to find out more than the basic information they needed at each stage. Dick describes his reaction as ‘graduated denial’ – hoping each plateau would last, and dealing with each change in her symptoms only when it happened. They tried to keep doing as many normal things as they could, such as trips out, going to the theatre, and eating in restaurants. They became increasingly close during that year, and he was determined that he would care for her himself at home as long as possible. His employers were supportive in enabling him to work from home.
First Di lost the use of her arms, and then speech and swallowing became difficult. Finally she found it harder to walk or stand. As a trained shiatsu practitioner Dick was able to lift her himself. Social Services helped them to make their home wheelchair accessible and to adapt the bathroom, although the new bathroom was not entirely successful.
He started to find it too exhausting to manage all the care by himself. They decided to organise home carers, but managing the direct payments system and finding someone was difficult. They soon found they needed more help and Social Services organised agency staff to come in. However, they felt the quality of care was variable, and it was stressful dealing with a succession of different people, or days when no-one turned up at all.
Losing speech was one of the hardest things for Di. She used a letter board to communicate for some time, which was a very useful way of enabling her to still communicate. As Di’s symptoms deteriorated, she decided it was time soon for her to die, and they said their goodbyes to each other one night. Di made her own decision to stop eating, and their GP and district nurses gave them great support during this time. She had a living will in place but in the end it was not needed. Three weeks after stopping eating Di died quietly at home. Dick has had bereavement counselling from the hospice which Di used to attend, which has been helpful in coming to terms with her death.
Dick and Di investigated, but decided against, using complementary therapies; they continued to hope for a cure despite knowing Di's MND was terminal.
Dick and Di investigated, but decided against, using complementary therapies; they continued to hope for a cure despite knowing Di's MND was terminal.
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 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 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.
In the early stages of her MND Dick's wife could not stand unaided and had several falls; as she became more disabled Dick had to lift and move her and turn her in bed.
In the early stages of her MND Dick's wife could not stand unaided and had several falls; as she became more disabled Dick had to lift and move her and turn her in bed.
So we spent some time over at the flat over there. And at that time Di started to, Di's paralysis started to, to really bite. There was the time when she could no longer stand alone. She always needed somebody with her. She was standing just here at one time in the early stages and suddenly just fell and hurt her arm and head and bruised herself. And she had several bad falls at that time. She’d been having falls occasionally and before that, before even we realised that something was seriously wrong.
We had a new dog and he kept pulling her over and we thought he was just a very boisterous dog you know. But in fact it was I think now it was just the first stages of the illness. So I was needed more and more. Very fortunately because of my training as a shiatsu practitioner I knew how to lift. And so I started a kind of long routine of lifting her and moving her and moving her from the bed to the chair, the chair to the commode, the commode to the toilet, moving her around and all that sort of thing. But at first it was manageable. It was okay.
And as the muscle wasting continued, she couldn’t get comfortable wherever she came into contact with the physical world it was painful and uncomfortable for her. She needed turning at night regularly because she couldn’t turn herself. And so I would have to be available all through the night to get up several times to turn her and take her to the toilet.
And yeah, there were all sorts of skills, like turning her, and finding out how to make her comfortable in bed as well, was, was an, you know, we tried all sorts of things. We tried using pillows this way and that way and we got some good tips from the hospice as well which sometimes worked, sometimes didn’t. Obviously it depends on different people. So, but we adapted and found ways of doing it and we were able to, I was able to show the carers how to do that. And largely they were able to reproduce that and, although it, the pillow arrangement got more and more complicated. It got to be quite a science in the end, how to keep her...
Dick and Di were determined to keep their lives as normal as possible; Dick took Di for trips out in her wheelchair, including to the theatre, cinema and restaurants.
Dick and Di were determined to keep their lives as normal as possible; Dick took Di for trips out in her wheelchair, including to the theatre, cinema and restaurants.
And I think important that we continued and we had days out. And Di was always fairly adventurous and so we’d think of ways of taking that in the wheelchair. We’d get her in the car and some friends…I don’t drive a car…so I’d started learning as soon as she got ill but friends said, “Don’t worry. It's another stress, we’ve got a car. You know, we will help you out.” Lots of friends offered use of a car. And we used to take Di out and we used to have the most wonderful days out. And we went up to one…the autumn of in 2004…we went up to Hertford Lock near Huntington to the river. And there was a boat offering pleasure cruises there and we thought we wondered if we could get the wheelchair… there’s only a little plank. We wondered if we could get the wheelchair in and we asked the chap and he said, “I’m game for anything”. So we kind of levered the wheelchair up and out and over and everything and she was laughing and everything. And we managed to get to jam her in somehow into the boat. We nearly tipped her out on a couple of occasions. But we managed to jam her into the boat and we went for cruise up the river and you know how lovely it is on the river, you know, it so peaceful and lovely and, and she loved that.
And we continued to go to the theatre and to the cinema. And we, we were determined that we would have as ordinary a life as possible. And despite Di’s problems with eating we still went out to restaurants, you know and she would readily choke and there was difficulties.
And we thought well okay but there was some embarrassment you know there. But we kind of said…thought to ourselves well okay, it is embarrassing or can be, but let’s do it. It’s what we’ve always done and we still enjoyed doing it you know. So we did go out and we did go to restaurants and we did go to the cinema, you know.
Dick was amazed at how people in the local community rallied round to support him and Di. The experience has changed the way he sees the world.
Dick was amazed at how people in the local community rallied round to support him and Di. The experience has changed the way he sees the world.
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, Di was nine years older than me. She was 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, to do our washing for us. It was just, 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.
Dick praised the district nurses who were friendly, very good at providing the medical supplies and not caught up in bureaucracy.
Dick praised the district nurses who were friendly, very good at providing the medical supplies and not caught up in bureaucracy.
And above all, there were the District Nurses. They were absolute amazing. They were lovely. They came in, and they were friendly and chatty and they became part of the household, you know. So they, they were sort of part of the whole medicalised, they didn’t feel like part of the medicalisation of the process, they just felt like friends coming in, once we got to know them. And they were cheerful and very, very helpful. Always ready to provide us with whatever supplies, you know, medical supplies, we needed. Nappy pads, which Di had, you know, bedpans, everything that we needed. And they were so immediately responsive to that and they, they were just great. They were, they, there was no kind of hint of bureaucracy about them which we got even at the hospice. You know, because the, the number of kind of rules now in terms of what can and can’t be done and we came up against this everywhere.
Dick employed care workers for his wife through the Direct Payment System. He initially struggled to find suitable care workers.
Dick employed care workers for his wife through the Direct Payment System. He initially struggled to find suitable care workers.
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.
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.
Dick and Di had their home modified so it was suitable for wheelchair use. However, with all the upheaval it caused, Dick believes it hadn't really been worth it.
Dick and Di had their home modified so it was suitable for wheelchair use. However, with all the upheaval it caused, Dick believes it hadn't really been worth it.
So social services contacted us and we find out that we could get a grant to modify the home for wheelchair use. So for three months we had this part of the house remodelled. A bigger bathroom put in, a special bath that Di could use when, when she began too paralysed to actually use an ordinary bath, Closomat toilet.
But we had then to move out for three months while that was happening. Very fortunately there’s, there’s a just across the road here, there’s some alms houses attached to the church. And there was a bed-sit going spare. So we, they allowed us to rent that for the period while were out of the house. So I could pop back in as necessary and it was quite convenient. But to be honest with you if I had to made the decision again I wouldn’t have, I wouldn’t have bothered because in fact by the time the work was finished, in the time Di actually got back into the house, she only got a couple of months of use out of it. The bath was uncomfortable. It didn’t really do the job and an ordinary toilet would’ve functioned with a, you know, a chair with a commode, a mobile commode which we used.
So it was a degree of disruption in our lives that you know we could have perhaps done without. But we didn’t know that at the time. We made the best decision that we could and we had a lot a very good help from social services. And the occupational therapist was particularly helpful. And they were errors made and things didn’t go according to plan. But that happens with any kind of building work you know.
Dick was keen not to medicalise his relationship with his wife. They were both committed to make the last year with each other as wonderful as they could.
Dick was keen not to medicalise his relationship with his wife. They were both committed to make the last year with each other as wonderful as they could.
So eventually Di had the tests and they the diagnosis was motor neurone disease. And the observation was that it was actually progressing quite rapidly. So, I got very angry at that point. I don’t have any religious belief but I got angry nonetheless you know. And I … I didn’t really know how to handle it at first.
And, but I decided and Di was quite happy with this that I wouldn’t look up a lot of details about it you know. I mean I knew basic information. I got the basic information about what to expect. Because I didn’t I didn’t want to pathologies my wife. I wanted our relationship to continue as a relationship. I wanted to have a relationship with my wife not with a patient you know. I didn’t want medicalise the whole situation and fortunately she felt exactly the same way. So I deliberately made a choice of just getting myself the basic information I needed to find out what we needed to do.
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, 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, 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.
Carers need to be aware that everybody has their limitations. When using professional care workers, things may not always go according to plan. A sense of humour and friends to talk to can help a lot.
Carers need to be aware that everybody has their limitations. When using professional care workers, things may not always go according to plan. A sense of humour and friends to talk to can help a lot.
And my last question is that, is there anything, any advice or messages you’d give to other carers?
Right.
Just from your own experiences of what’s helped you.
Get help. Get lots of help. Don’t be afraid to ask. But also be aware of, if, if you involve friends, be aware of other people’s limitations as well. Don’t push people beyond their bounds. Keep an open dialogue with people who want to help. You know, and, you know, if they look as if they’re, they’re reaching the end of their tether, you know, just say, “OK, well, take a step back and we’ll see”. You know, don’t push them too far.
Keep control of the situation as you, as much as you possibly can. Make your demands to social services very clear. Tell them exactly what you want. As we did. You know, we actually said, “We do not want these carers. They, they are not right for, for Di’s needs”.
Make use of the social worker. Find out what’s available to you. If you go down the direct payments route, where you employ your own carers, be aware that this can be a very, long, drawn out business and can actually involve you in, in lots of kind of bureaucratic difficulties. Finding the carers, interviewing them, organising the payments, everything. Get a friend in to do that for you, if you can.
And certainly make, if there’s a local hospice, make use of the local hospice. Certainly our experience with, of our local hospice was excellent. It wasn’t home but it was, when, when things just got too much they were, they stepped in and they were wonderful.
Be aware that agents, be aware that any care, I talked to the social services and our experience, they tell us, was not atypical. Be aware that plans keep falling apart. When you think you’ve got something organised, it may not happen. Things may change. Difficulties may arise. Carers may not turn up. May not be available. Have back up plans if you can. Try and keep a sense of humour, if that’s possible.
Dick and Di planned a formal, ritual goodbye, so they would not have any last minute awkwardness with a long drawn out goodbye.
Dick and Di planned a formal, ritual goodbye, so they would not have any last minute awkwardness with a long drawn out goodbye.
And so Di and I decided to, 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, we had a one evening when she was lying in the bed and I 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 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, might’ve engendered.
Dick felt it was important to talk to the hospice counsellor about the memories of his wife that surrounded him at their home and his sense of loss; he felt Di was both present and absent.
Dick felt it was important to talk to the hospice counsellor about the memories of his wife that surrounded him at their home and his sense of loss; he felt Di was both present and absent.
I think what was difficult was 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 have been surprised, you know she was still very present to me in my mind and my imagination. But of 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.
Dick keeps a photograph of his wife in the front room and finds talking to her is a way of dealing with his loss.
Dick keeps a photograph of his wife in the front room and finds talking to her is a way of dealing with his loss.
And it’s a long, long process, I mean it’s 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 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, 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.