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Roger & Teresa ' Interview 30

Age at interview: 59
Brief Outline: Roger's wife Teresa was diagnosed with bulbar onset Motor Neurone Disease. She died a year ago, aged 64, less than six months after the diagnosis.
Background: Roger is a mini-bus driver, widowed, with 5 adult children. Ethnic background/nationality' White British.

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About seven or eight months before she was diagnosed, Teresa sprained her wrist and it seemed to take a long time to recover. She also started slurring her speech, and somebody who noticed at a birthday party thought maybe she had drunk too much. At first the slurring came and went, but the family also noticed she was becoming agitated, and persuaded her to see the GP. The GP referred her to a neurologist. They were told the waiting time for an MRI scan was several months and so they paid for a private scan. They were relieved when the scan results ruled out a stroke or brain tumour. Further tests were carried out, and eventually they were told she had the bulbar onset form of Motor Neurone Disease (progressive bulbar palsy). While waiting for the results they decided to go on a special family holiday to Spain while they still could.

At first Roger hoped they might find some treatment to prolong Teresa’s life. She volunteered to take part in research trials, but was not as optimistic as her husband that anything could be done. Her philosophy was that she would make the best of what time she had left, but she was more worried about the effect on the people she would leave behind. She was a strong and independent woman, who tried to keep life as normal as she possibly could.

As her ability to communicate worsened, she decided to give her husband power of attorney, although he found it quite difficult to arrange the legal process. Roger’s trade union helped him find a lawyer. She found the loss of speech frustrating. Roger became her translator, and she used a combination of word lists, a magnetic note board, sign language and Lightwriter to communicate. Sometimes they felt staff tried too hard to keep communicating directly with Teresa, when in fact she preferred to communicate through her husband. They knew this was well meant, because staff wanted to guard against carers intervening inappropriately against the patient’s wishes, but felt staff also needed to be sensitive to individual preferences and recognise she might find it stressful.

Teresa’s condition deteriorated rapidly, and within six months of diagnosis she was having severe swallowing and breathing difficulties. She had to be admitted to hospital for a chest infection and became very weak, but she had decided not to have invasive ventilation. Although many individual staff were excellent, they felt sometimes that their wishes were not respected or communicated effectively between staff, either in hospital or in the community. As a former nurse, Roger felt it was perhaps easier for him than it would be for other carers to act as the point of continuity of care. Teresa died peacefully in hospital, with Roger holding her hand. After 23 years together he misses her presence profoundly.

 

 

Roger’s wife needed frequent chest physiotherapy but no physiotherapists were available in the...

Roger’s wife needed frequent chest physiotherapy but no physiotherapists were available in the...

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No, I’m going to think particularly in the first instance of physiotherapy. I think I’ve already said that in the early days in August of 2005 the hospital who did give Teresa some physiotherapy, chest physiotherapy indicated that they would like to see Teresa having chest physiotherapy in the community two, three, maybe four times a week initially but as a long term objective two or three times a week. 

occupational
When conversations took place with occupational therapy they seemed to be unsure whether a community occupational physiotherapy actually existed. There seemed to be a feeling that if that type of intensive physiotherapy was required to be done in the community then it would be a hospital based physiotherapist who would come out and perform the physiotherapy. Occupational therapists seemed to think that that sort of physiotherapy was outside of their remit. The problem was circumvented partially by the, the hospital physiotherapists, having referred to their seniors, educated me and instructed me on how to perform the necessary procedures and use the suction machines, the portable suction machines and the oxygen and all the rest of it. If there is a problem in the community for physiotherapy then the option of training a family member or carer is one that should be considered, looked at, perhaps at an earlier stage.

A hospital physiotherapist is a very busy person. They spent a lot of time more than one of them, spent a lot of time with Teresa. They were very patient with me and helped me. But some of the techniques are not techniques that are learnt in five minutes. The technique I could have done with a lot more time to practice and perfect under supervision within the hospital, they did not always have the time to do it. One or two physiotherapists came back after, when their duty had finished in their own time to give me time. I think that’s absolutely splendid but it should not be necessary. If we need to train people in families, if we need to train carers, then it needs to be recognised early enough and resources given to it. Or we need to ensure that the coverage for physiotherapy within the community is adequate.
 

 

Roger felt he spent far too long on the phone organising things to do with his wife’s care...

Roger felt he spent far too long on the phone organising things to do with his wife’s care...

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But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central coordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.

They should, I saw my job as taking care of Teresa’s needs, being her representative, being her mouthpiece as well as her partner and everything else. I spent far too long as a medical secretary ringing people who didn’t know what I was talking about. And saying, “Well I’ve just spoken to so and so and they suggested that maybe you can help or suggest somebody that might be able to help.” Too many phone calls, e-mails whatever trying to find who was the right person, who owned the particular problem. Not helped by the fact that while Teresa’s care was under one hospital it was actually being carried out and administered across four others, it didn’t help. Didn’t help at all.

Gosh ok. And all that time that you could have been spending with Teresa?

Yes, yes. She

If there’d been someone else there?

She, she’s sitting here. She needs, she wants something to eat. She probably needs her chest cleared. I need to sort of make sure that, that we’re not getting too low on oxygen because of the time it could maybe take to get a replacement cylinder. And instead of taking care of her immediate needs or watching the time and medication, I’m on the phone talking to people who really don’t really want to be talking to this guy because I don’t what he’s talking about and he’s nothing to do with us. Difficult.
 

 

Roger’s wife lost her speech through MND and found it immensely difficult to communicate with...

Roger’s wife lost her speech through MND and found it immensely difficult to communicate with...

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I think to a certain extent, I mean, you, one could understand that when a professional comes to visit a patient, to assess a patient they will address their remarks correctly to the patient. They do not necessarily know or have seen the condition before and understand how difficult it is for that patient to communicate. And the fact that the patient can’t respond… Teresa and I had developed if you like our own sign language and understanding. And I knew that very easily she could communicate with me that she was distressed, was having difficulties, didn’t want anything take over. And there were occasions when she found it just too difficult and too frustrating to try and communicate with somebody and wanted me to take on the role of that communication on her behalf. But the healthcare professional would on occasions not realising the situation try and stop me from speaking for her and insist that Teresa continued trying to communicate.

Obviously it didn’t take too long before the reality of the situation dawned, we’re dealing with intelligent people. But sometimes those few minutes that it took for the penny to drop did cause Teresa quite a bit of anxiety and stress. This was patently obvious at times when she was connected to heart monitor machines and all the rest of it. And you could actually see the effort that she was trying to make to overcome her difficulties and the frustration that because she couldn’t, that this was causing her. And at that time obviously she needed her energies to be concentrated on breathing, not on communication, when I was there to do it for her.

And to that end I stayed with her. She was admitted twice to hospital, two separate hospitals and in each case I remained at the hospital 24 hours a day for I think in one case it was a week. And the other case it, well it was nearly, nearly two weeks I lived in a hospital chair, because I was the only communication. If it was a simple thing like a cleaner, a carer, a helper anybody like that, just, “Do you want a cup of tea? Do you want a” whatever. When she needed, if she needed something, if she wanted the oxygen increased, if she wanted to go to the toilet, use a bedpan whatever, I was probably the only person with whom she could get that message to. And then I could obviously go off and get whatever help was required.
 

 

Although he represented continuity of care, Roger found communications with him as carer were not...

Although he represented continuity of care, Roger found communications with him as carer were not...

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As far as the communication was concerned certainly, I think it was best at the top and it was best at the bottom. The consultants, doctors, these sort of people - excellent. Clearly they had received training in communication skills and knew to ask if we had questions to ask etc. I felt that ward staff, people like this were very good. They may not have had the training but they just did it instinctively, incidences where they were concerned for my welfare. Now I was there obviously to care for Teresa, so in caring for me they were caring for her too. But hospitals are, are not supposed to feed relatives but many of the nurses made sure that I didn’t fade away in the chair.

But because I’m a relative, I’m not a healthcare professional, some people would ask, awful lot of people would ignore, tolerate is a word, you know. I was put up with. I was swept around, I was, you know, moved to one side. But other people actually recognised that I was actually part of Teresa’s support and treatment care team and treated me as such. And usually the times they found out that I could be the most valuable was at the times when they suddenly found things or something had gone wrong, because I actually represented continuity. I was the one that was there all the time. I’d heard what every doctor had said. I’d heard what every physiotherapist had said and all the other professionals that had interfaced, what their views were. I had seen where the breakdowns in communication had occurred, I had seen where the notes had gone missing for a time or somebody had said something and not put it in the notes, because I was maintaining my own notes. But I doubt very, very few carers, relatives, whatever, would ever go to the trouble of maintaining contemporaneous notes over a period of months.
 

 

Poor communication between health professionals meant that Teresa did not receive the...

Poor communication between health professionals meant that Teresa did not receive the...

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The people that are concerned with these, these matters really do need to look at the community support side of it. Because one of the frustrations that, that I found was we have community people who are not even aware of what the other community services are, whether they exist or whether they don’t exist.

This is probably jumping the gun a little bit but one of the things that was fairly early on was stated for Teresa’s needs was that she needed physiotherapy to help her with her breathing. The hospital did what they could and they said what we needed was help in the community. When we spoke to community health professionals, most of them said, “There is no such thing as a community physiotherapist”. There are community physiotherapists. The community physiotherapy was required urgently. That was in, first requested in August of 2005. They actually arrived at the front door here the week Teresa died in January 2006. That is dreadful.

When conversations took place with occupational therapy they seemed to be unsure whether a community occupational physiotherapy actually existed. There seemed to be a feeling that if that type of intensive physiotherapy was required to be done in the community then it would be a hospital based physiotherapist who would come out and perform the physiotherapy. Occupational therapists seemed to think that that sort of physiotherapy was outside of their remit.

But the communications within the community were bad. As I said we wanted community physiotherapy in August and got it in January a week or so before she died, far too long, far too long. And when the physiotherapist came to this door and got an explosion. She in actual fact had not been, had only just received a communication. It wasn’t her fault. So what had happened in the pipeline and why the pipeline was so long and tortuous I do not know.
 

 

Roger said that the consultant and physiotherapist exchanged notes about Teresa’s treatment on a...

Roger said that the consultant and physiotherapist exchanged notes about Teresa’s treatment on a...

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The, typical breakdown in communications in our experience was actually to do, where we saw it the most starkly was actually to do with oxygen administration that we….The consultant with a physiotherapist examined Teresa and came up with a treatment regime. We actually got a white board put up and the physiotherapist actually wrote what they had agreed on the white board. So if she came back later and wanted to alter it the consultant could see it and the consultant if he wanted to do the same, the physiotherapist could see it. Because the notes weren’t always available. And we had incidences of ward sisters wiping the white board clean because it didn’t fit in with her protocols, but I’d written it down.

Sometimes the treatment regime had to change fairly swiftly. And sometimes changes indicated were not carried out because we had a shift change and it was not communicated. It wasn’t in the notes and, or the notes weren’t read by the, the second shift and it wasn’t picked up on.
 

 

Roger suggested that problems with poor coordination in the community could be solved by having a...

Roger suggested that problems with poor coordination in the community could be solved by having a...

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But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central co-ordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.  

 

Roger was holding Teresa's hand when she died. He experienced her death as a 'terrific whoosh'.

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Roger was holding Teresa's hand when she died. He experienced her death as a 'terrific whoosh'.

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Her, her death itself was probably the least upsetting. She was. She went very peacefully. I was holding her hand at the time and I’m convinced I felt the spirit pass, sort of. But the experience wasn’t what I expected. I would tend to talk and words that we use. You know people “slip away”. It tends to suggest something gentle, slow, almost wave like. It wasn’t. It [clap], it was a very sudden terrific, ‘whoosh’. It’s not at all what I’d expected. And it was. And I was holding her hand and it was. It wasn’t an electrical shock but it was akin to it. It was a jolt.

Gosh

And a movement like that. Now my daughter was standing at the foot of the bed at the time and the way I reacted. I didn’t have to tell it. She knew exactly the way I jumped what had happened and she was on her heels. Yeah.

They, they were, the hospital they were a little bit unsure whether she was asleep or whether she was unconscious or. It was in that, you know the pulse was so weak.

Was she awake beforehand, was she unconscious at all?

Yes I would say so. They were monitoring her pulse but I realised that they, after this they came back and said, “Oh no I can feel her pulse”. I said, “No, you can’t. What you’re feeling is the ventilator”. I knew she’d gone. Yeah.

I wanted to ask you about how the, the way the health services had dealt with her death and the way she, the way she died. Had that been the best way that…

No problems there. They just. Everybody just backed off. I think one of the doctors came in and sort of said, you know, what do we want and what do we need and all the rest of it and, and a little nurse came in. Probably unofficially but you, you can’t live in a hospital chair for a couple of weeks and not build sort of relationships with people. And she just came in to give her sympathies, support and… No I think, I think at that moment in time they need to stop being professionals and be human beings.
 

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