Roger - Interview 41

Age at interview: 59

Brief Outline: Roger was married to Teresa, who was diagnosed with bulbar onset MND. 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.

More about me...

About seven or eight months before she was diagnosed, Roger's wife 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 MND (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 a 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 want 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.

When his wife started to slur her speech people thought she'd had too much to drink. He noticed...

The first symptoms that I was aware of and Teresa spoke to me about and perhaps may have confused things a little bit was that she thought she had sprained her wrist. And the sprain seemed to continue for an inordinate period of time and she had some weakening. It became obvious that something was wrong in February of 2005 while she was out at her daughter's birthday. Other people there whispered to her daughter that, 'Has mum had one or two too many?' But in truth she actually hadn't had a drink at all. She was slightly slurring her speech and it came and went. The time between episodes reduced and the duration of the episodes increased. 

As we started to look at what was happening we became aware from people a little bit further out from the immediate family. People who spoke to Teresa on the telephone had noticed that she had been slurry once or twice and thought [chuckle] maybe she's taken a drink during the day and what's wrong with that. So clearly out of loyalty didn't say anything. 'In February we realised something wasn't quite right and the family made, because Teresa was a very strong and very independent person, didn't want to bother people particularly doctors who she held in high regard. 

We made an appointment for her and dragged her kicking and screaming over there. And started to relate to the GP the observations we had made to that point i.e. the sprained wrist, the slurring of speech, that the incidence's of slurring were getting more and more frequent, lasting longer. And minor changes in Teresa's persona. She seemed to be agitated, clearly she was feeling some frustration. She was a very capable communicator. She's an Irish girl, she knew how to talk. It was obviously having some difficulties although perhaps she herself wasn't really too sure exactly what those difficulties were. We were concerned because obviously we looked at what we thought were the likely causes at that time thinking, 'Has she had a minor stroke perhaps?' Or you know horror 'Could there be something neurological, tumour anything of that nature?' And we didn't have to work very hard with the GP before she actually came in line with the thinking and shared our concern and referred her to a neurologist.

His wife volunteered for trials and they researched the scientific evidence behind different...

And obviously Teresa herself knew what our thinking was. I think in some ways she was probably more realistic about her situation, probably than anybody else. There were many things going on in research, new trials. It actually at times there looked as if perhaps a protocol for the treatment if not the cure or the substantial prolonging of survival time with MND appeared to be perhaps just a little round the corner, just over there, not too far away. Perhaps people like me hung on to that perhaps a little bit too much. Sort of thinking that, you know, maybe she's going to beat this.

There seemed to be so many things coming together at the right time. There were new clinical trials on different drugs, March, April and May of 2006. We had her as a candidate on a number of different things including a trial that was being looked at in Finland. 'When we actually contacted the people in Finland to suggest, recommend Teresa for that trial, we obviously as a courtesy contacted her consultant and said, 'This is what we've got in mind and hope he hadn't got any objections'. Only to find that he had already put her forward as a candidate himself so which we thought was absolutely splendid.

How did you find out about the trials?

Basically through the Internet, forums and to a certain extent using resources which were probably more particularly designed for use by health professionals. Following up links on research and development that were reported at the different Motor Neurone Disease Symposiums which go on each year. Looking back through, at the reports and seeing if they led anywhere. Looking at similar resources in the United States and elsewhere in the world. Being aware of some of the alternative medicines and some of the more dubious things that were being reported. And obviously having to be very circumspect that there was a lot of talk at the time about a doctor in China who was doing stem cells, injecting stem cells, costing a vast amount of money. It looked good, it made sense and it was certainly sounded a very attractive option.

And one can understand why people got money together and paid these vast sums to go and have this done. The science wasn't there. But you can understand that if people are desperate enough they will turn to every avenue. And that's what we were doing in our way. That we were looking to see if the research anywhere was moving ahead in any corner of the world. And it was these things that led to enquire about trials both here and overseas. And certainly it may have fostered the view that perhaps we're not very far away. Can we win some time to get to the next stage or perhaps the next drug could be the one that's going to help buy another six months, another three months, another twelve months whatever.

Obviously I am aware that with trials that to be a candidate for a trial often the disease should not have progressed beyond a certain tipping point. And we were concerned to try and maintain Teresa's health at the highest possible level and arrest things as much as possible. Hence looking at these additional treatments. The one that appeared most attractive at that time was supplementing riluzole with minocycline. There were mixed messages on this because the, because the trials in America did not yield the same results as the trials in the UK.

Teresa, herself didn't seem to share the same level of optimism. She seemed to think that, took the attitude, the philosophical attitude, you know these are the cards she'd been dealt. She would play them and make the best of it and actually seemed more concerned about us and how we were going to cope after she had gone. That's something I find very difficult to sort of come to terms with. It shows the strength of the person that she was. Even when her own mortality was the issue she was more concerned about others.
 

They had trouble getting community physiotherapy arranged to help clear Teresa's chest. A...

Ok. I also wanted to ask you about the different services that you've been. You've mentioned the physiotherapy and the speech therapist. Did it feel as if those services were working together and did it feel co-ordinated?

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.

When conversations took place with occupational therapy they seemed to be unsure whether a community physiotherapy [corrected by interviewee] 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 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.

As Teresa became weaker, a PEG was suggested. She developed breathing difficulties and had non...

Unfortunately by this time we're talking approaching Christmas of 2005 and Teresa's condition had deteriorated quite significantly. She was having difficulties, severe difficulties, with swallowing and the hospital were saying to her that she should be having a PEG tube fitted. She wasn't terribly keen on that idea but was allowing the family to persuade her to have it done because we wanted her round for as long as possible. And she said that she would like to get Christmas over and then, OK, she consented that she would have it done. During Christmas she appeared to develop a chest infection which is obviously the thing that we were all most concerned about, the thing which is most dangerous to people with MND particularly ALS or bulbar onset. Shortly after Christmas she was admitted to hospital as a result of the chest infection but with the use of antibiotics and intensive physiotherapy and oxygen she was able to be discharged.

She was discharged less than a week and whether it was another infection or if it was the same infection returning we don't actually know but was then re-admitted again to hospital, not the same hospital as an emergency with breathing difficulties. We did while she was in the hospital this second time in January look at the feasibility of a transfer to the hospital that would do a PEG tube. The reason that we were looking at that was because obviously the primary concern was fighting the chest infection but while Teresa was fighting this chest infection she wasn't taking nutrition. And for somebody who was only seven or eight stone can't afford to lose much and she was clearly losing weight rapidly. With everything going on obviously she probably didn't have much of an appetite.

Eventually the hospital did start to feed her intravenously. Her breathing difficulties got worse and worse. And we went from oxygen to positive pressure ventilation and the use of a, I believe it's called a Nippy Unit, which initially I understood was usually used only at night. But within days she was virtually living in it and still having considerable difficulties in clearing her chest and needed almost constant physiotherapy in order to breathe.

We had at times, at the time when she could communicate effectively I had discussed with her where she herself wanted to draw the line. We did not want to do, embark on any procedure that she, herself, I knew did not wish to consent to. And reinforce that, to, with Teresa, with Teresa had actually given me her power of attorney, an enduring power of attorney so that I could obviously speak for her authoritatively with the healthcare professionals. Her dividing line, the PEG tube was close to it but she had indicated that quite definitely she did not want invasive ventilation. That was, that was her definite line in the sand.

It actually wasn't discussed as an option at the hospital. They were using the positive pressure ventilator and high levels of oxygen. And perhaps they felt that invasive ventilation wouldn't have given any improvement over what they were already doing anyway. I suspect that was the case. And that was the situation when Teresa finally passed away on the 31st of January 2006.

Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard...

She was a verbal communicator. MND therefore for Teresa was a particular cruel disease. We looked for, as, as her speech faded we obviously looked for other methods to assist her. We wrote words on pieces of paper. We had a magnetic board and all sorts of things so she could make words. We made lists of words that she could point to. It was not easy for her. 

Education 50 years ago in Ireland was not what it is today. Ireland today enjoys one of the highest educational standards in the world. It didn't 50 years ago. Teresa came from a large family and the emphasis was - because schoolbooks had to be paid for - was concentrated on the lads in the family. And Teresa herself as a girl would rather be in the fields with her daddy than sitting in a boring schoolroom learning all about dead people. That's the sort of person she was. So she may not have had a benefit of good education but she was very bright, very capable. But communication in writing wasn't. She was a verbal communicator, that was her way. I had tried to help her develop keyboard skills. I'd even tried to use voice recognition programmes. And the English voice recognition programmes seemed to struggle with a very heavy Irish accent. We worked on that for some months but at that time it didn't really seem worthy of the effort. And of course when MND presented itself and her speech began to fail that was no longer an option.

We were provided by MNDA a device called a light writer manufactured by Toby Churchill, a pretty good machine. Teresa didn't have keyboard skills so the speech therapist and I set about taking the machine apart and changing the keyboard over and put it in alphabetical order. A simple thing, but it made a big difference, because a QWERTY keyboard means nothing to anybody that hasn't got keyboard skills. 

We also found that with that machine you could actually pre-programme in frequently required phrases and words which Teresa used quite extensively. I had a piece of paper with various sentences written on with the number against it. When she pressed that key the machine would display the message and speak the message that she wanted. And we carried that machine with us everywhere we went. 

She never felt comfortable enough or confident enough to use it perhaps in a local supermarket. And until very, very late on, up 'til Christmas she was going to supermarkets. She wanted to be out and doing things as much as she was able. By that stage she was having difficulty walking as well but by hanging on and our private little sign language she was able to let me know what she wanted and 'Buy some of this' or 'No, we don't want that'. And 'Hello' to this person and so on and so forth.

He understands why staff want to talk directly with patients, but sometimes his wife found it...

I think in some respects we are perhaps at this time the victim of our own desires to be at all times politically correct. We know that all of us have got things wrong in the past. The wheelchair user used to complain that people used to address the questions to the person pushing the wheelchair rather than the person using the wheelchair, 'Does he take sugar' syndrome. I think we've actually perhaps gone too far the other way. There are times when the healthcare professional is talking to a patient, this is a difficult one I do appreciate that a relative or carer may be trying to intervene. That intervention may not always be appropriate. It could be that they, they've got their agenda or their view or whatever. But they do need to be aware that there are conditions whereby the patient cannot communicate easily and need to, and need to pass that responsibility to somebody else.

Healthcare professional therefore, needs to be aware that that situation could exist. That a carer trying to intervene may not always be acting inappropriately. I think in the situation such as a hospital that is probably more readily avoidable by placing a suitable notice on notes.

There are alerts, there are flags, there are various things that warn of perhaps an allergy to penicillin. There could be a similar system that requires any professional dealing with this patient to read the notes such and such. It could just be instead of a red flag for no penicillin there could be a blue flag which says there is something special about this patient. You need to be aware of whatever. And there'd be a particular place perhaps inside the front cover or back cover where these special notes are recorded. Communication difficulties whatever, appointed agent, representative, whatever could actually be named with the alternatives.

When you've got professionals dealing in isolation it is a little bit more difficult. That's really more down to the individual. There have been occasions where the professional might have been a little strident in dealing with people, say an attitude of when I've tried to intervene taking the attitude, 'I know what I'm doing'. And once or twice I've had to be less than gentle in the way I said, 'I'm sorry you do not know what you're doing. Please listen to me.' But no lasting harm was done.

It was, my concern is only that professionals need to be aware that there can be circumstances where a patient can have difficulty in communicating. And the patient will not always be the first to say or to try communicate or indicate that they have a difficulty in communication. They will instinctively try to communicate and in so doing stress themselves which is what happened more than once.

She died peacefully as he held her hand. He felt the moment of death almost as a jolt. The...

There are particular things that upset me but they tend to be sort of - the scent, you know. I go into the wardrobe or something and there's perhaps a jumper or something at the back and you suddenly catch it. And it's when it catches you unawares' And the flashback-type things, because I'm sorry to say during the course of this there were quite a few little traumas and the times when things didn't go quite right and were very upsetting. 

Her death itself was probably the least upsetting. 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 was a very sudden terrific whoosh. It's not at all what I'd expected. 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 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.

I wanted to ask you about how the way the health services had dealt with her death and the way she died. 

No problems there. They just, everybody just backed off. I think one of the doctors came in and said, what do we want and what do we need, and all the rest of it, and a little nurse came in. Probably unofficially but you can't live in a hospital chair for a couple of weeks and not build relationships with people. And she just came in to, to give her sympathies, support. No I think at that moment in time they need to stop being professionals and be human beings' I think as professionals they're used to death and their attitude was, 'Well, at least she's now out of her suffering.' I think what is likely to affect them more is the effect that the death has on people round about them which included a fair number of the nursing staff because Teresa had been in there some while.

The hospital and community services did not always communicate well. He spent a lot of time...

Difficulties with co-ordination, I think sometimes it was different professionals' inability to identify whose responsibility certain areas were. The GP saying, 'This should be done through the hospital'. The hospital saying 'This should be done through the GP or this should be done through the community or I haven't got this community individual yet'. But there were fortunately people who were prepared to pick up the phone and do things perhaps outside of the protocols. 

I had difficulties in the early days when we had the oxygen concentrator and bottled oxygen here. There were times when we ran out of oxygen and I couldn't get oxygen cylinders. And I thought well I'll make one more call before I ring 999 and say, 'I need oxygen,' and that call once or twice was actually to the GP and the GP would and did always manage from somewhere to get the oxygen. Where it's, some of it's come from I do not know. In fact I've still got two oxygen bottles now and I can't return them from whence they came. One of them is full. Nobody seems to want to claim responsibility for them. But that can be typical in some instances. 

When MNDA brought in the speech therapist, the hospital had attempted to do that but that line of communication, their, the people whom they communicated with didn't communicate on, there was a breakdown. It's not the hospital, within the community services. Their liaison point wasn't liaising with the right point allegedly and MNDA identified that problem and knew how to short-circuit it. When the occupational therapist, sorry when the speech therapist got involved he actually went and poked one or two people in occupational therapy. 

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. 

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. 

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.