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Multiple Sclerosis: friends & family experiences

John Z

Age at interview: 71
Brief Outline: John, age 71, is a retired divisional fire commander. He is white British, married, with one adult child.
Background: John’s wife experienced symptoms of MS for many years before receiving a diagnosis in 1984. The illness progressed steadily and she has needed full time nursing home care since 2003. She is now bedfast and unable to talk or do anything for herself. John visits her every day.

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John’s wife was a fit and healthy young woman when they married in 1963. From 1973 onwards she was occasionally unwell but with ‘nothing serious and nothing significant.’ In 1974, on one occasion, she found that she could not write her name to sign a cheque. This led to a medical consultation but no conclusive outcome. She appeared to recover fully. Over the next few years, periods of non-specific symptoms continued to recur and in 1976 she experienced impaired speech and mobility which John thought was a stroke. The doctor reassured him that it wasn’t a stroke and that she would get better, which she did. About nine months later the same thing happened again and this time John’s wife was treated with 3 monthly injections. She improved, though ‘certainly wasn’t the person’ she had been. She regained her mobility, but decided to stop driving.

In 1984 the same thing happened again and, in a different medical practice, the doctor said, ‘it was time to put the cards on the table,’ and told John and his wife that she had MS. John thinks that although the ‘medical authorities’ had known about the diagnosis for some time, they had not disclosed it because ‘it would have an adverse effect on life.’ John is not critical of this but, looking back, he doesn’t think they would have lived their lives any differently had they known that she had MS. 

In 1987 they moved again, back to their original medical practice and, this time, also under the care of a consultant. John’s wife continued to deteriorate, whatever treatment was prescribed, and began to experience severe pain in her lower back and buttocks, particularly when sitting down. She needed to have very strong, narcotic painkillers to control this pain and eventually needed to see a pain specialist. But, ultimately, the pain remained.

In 1992 John retired from work and looked after his wife at home, with the help of special equipment and, eventually, visits from district nurses. John advises that equipment such as stair lifts and adapted vehicles are bought earlier than you think you might need them. By the time they had a stair lift installed her ability to go upstairs at all had declined and they only used it for six weeks before adapting a downstairs room for her.

In 2002 John’s own health began to deteriorate and, although he hadn’t considered the possibility that his wife would go into full time residential care (she did go for respite care) he was strongly advised by the doctor, after being particularly unwell one weekend, that he should let her go to live in a nursing home. John’s wife has lived in a nearby nursing home since 2003.

Over the past five years her condition has deteriorated markedly and she is now bedfast, doubly incontinent and without speech. John visits his wife every day to feed her and, although she can’t communicate with him, he is sure that she knows he is there. Occasionally, she will smile at him. John takes some comfort from his observations that she does not seem to be distressed but, nevertheless, he acknowledges that it all ‘takes some coping with.’

John advises other people to think about the timing of major purchases so that you get the most use out of them. Only six weeks after installing a stair-lift they had to move his wife to live downstairs.

John advises other people to think about the timing of major purchases so that you get the most use out of them. Only six weeks after installing a stair-lift they had to move his wife to live downstairs.

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In nineteen ninety two, I retired from my job in the fire service and looked after [wife’s name] at home. By this time, obviously, [wife’s name] couldn’t climb the stairs so we had a room downstairs for her with a special bed and a lift to get her in and out of in and out of bed. But before we reached that stage, and this is a mistake that a lot of people make, before we reached the stage of where she’d got to live downstairs we did, in fact, install a stair-lift and, to be perfectly honest with you, we got six weeks use out of it because we left it too late to install it. It may have been of some use to us previously.

Also at this time, I’d bought a special vehicle, a special wheelchair adapted vehicle so I could take [wife’s name] around in it but, we did get more use out of that, but again, I think we left it too late to take that particular course of action. It would have been better had we taken it several years, years previously to get her around in, in a wheelchair instead of trying to get her in and out of a normal car. I did, in fact, fix a special lift into, into a normal car to get her in and out but it really wasn’t very successful and the wheelchair adapted vehicle was, was much better.

John’s wife had been an athletic young person, but then for a few years she started to seem occasionally unwell. Her sudden inability to sign a cheque prompted a visit to the doctor.

John’s wife had been an athletic young person, but then for a few years she started to seem occasionally unwell. Her sudden inability to sign a cheque prompted a visit to the doctor.

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I married my wife in nineteen sixty three and she always seemed to be perfectly healthy. In fact, she, she was quite an athlete. She was a very good swimmer. She played in a hockey team. She was an extremely good high-jumper and seemed to be in very, very good health indeed. We had two children. My son was born in nineteen, our son was born in nineteen sixty six and our daughter in nineteen sixty nine. Unfortunately, our daughter died in, in the year two thousand so we now just have the one son and, and three, grandsons. 

As I said, [wife’s name] was very healthy and we moved to [place name] in nineteen seventy four because of my career in the fire service. Now, just prior to that, she didn’t seem to be particularly well on occasions but this was only probably from about nineteen seventy three onwards and it was nothing serious and nothing very significant. We settled in, in [place name] in a little market town called, called [place name] and [wife’s name] health did seem to deteriorate. It was very difficult to put our finger on anything in particular but she just didn’t seem particularly well. And then one thing that always sticks in my mind is that, on one occasion, she was signing a cheque and she suddenly said to me, “I can’t sign this cheque.” And I said, “Hang on a minute, you mean you don’t want to.” Because it was something that, [wife’s name] was, paying for and she said, “No.” She said, “I’m sorry. I just can’t write my name. I can’t, I can’t sign it.” 

Well, eventually she did but it looked nothing like her signature at all and, indeed, I had to explain the situation to the bank before they would do the transaction that needed to be done and she didn’t seem to be, again, particularly well so we went to see the doctor. And the doctor gave her a pretty thorough examination but didn’t come up with anything very, very conclusive at all and, after a few weeks, she seemed to be back to herself again and everything was perfectly normal. She was back driving and everything seemed to be, seemed to be okay. But then maybe a couple of years later she, again, seemed to be off colour and not particularly, not particularly well. But, after a few weeks, she recovered and everything seemed to be fine and didn’t even need to see the doctor on, on that occasion.

Doctors had apparently known for years that John’s wife had MS but had not told them. He thinks maybe they were trying to protect them from the news.

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Doctors had apparently known for years that John’s wife had MS but had not told them. He thinks maybe they were trying to protect them from the news.

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In nineteen eighty four, we moved to a little market town in [place name] called [place name], again, to do with, to do with my job and, of course, signed on with a new doctor’s practice and the same thing occurred again. [Wife’s name] was really off colour, went to see the doctor, a lady doctor, and this time the doctor said, “Right. I’m afraid it’s time we put the cards on the table.” Now, previously, the medical authorities had given us a name of something that was wrong with [wife’s name]. I think they called it neurosis, if my memory serves me right, but they certainly didn’t say Multiple Sclerosis or anything like that. So when we saw the doctor at [place name], the doctor said, “Well, it’s time to put the cards on the table. I’m going to tell you what is wrong with you and I think you’re going to get a bit of a shock. You’ve got Multiple Sclerosis and it isn’t getting any better.” 

After the doctor in [place name] told us that my wife had MS she was sent to see a consultant in [place name]. This was within a few days. The consultant was not satisfied with the diagnosis and recommended a lumbar puncture to make sure. This was done and the consultant confirmed that my wife did in fact have MS.

Now, obviously, the medical authorities had been aware, aware of this for quite some time but they hadn’t told us, probably because they thought at the age that we were, it would have an adverse effect on life so that, that was why they didn’t tell us. I’ve got no argument with that at all but when the doctor said, “You’ve got Multiple Sclerosis. It isn’t getting any better.” And the doctor said, “Now, I’m going to tell you now, you’re certainly not going to like it, in a very short time, maybe a couple of years from now, you’re going to find yourself in a wheelchair because that’s the way this illness seems to be going.” 

I think it was withheld because the medical authorities probably thought if they said the word MS we may not have tried to do as much with our lives as, as we could. I think that’s the main reason but there’s [sighs] there’s something here that is, that is very strange. My wife’s father was ill in, in the part of the country where we used to live and one Saturday night my mother-in-law had to send for the doctor. 

Now, I am told that the doctor came and treated my father-in-law. Now I wasn’t there, and this is second hand information to me from my mother-in-law, but the doctor, this is in the early hours of the morning, had a cup of tea afterwards and said, “Oh, it’s your daughter that’s got MS.” So my mother-in-law said, “Well, hang on a minute. How do you know that because my daughter left this practice when she was about twenty four years old and moved to [place name]. How do you know?” The doctor sort of looked a bit sheepish and then said, “Oh, I think I might have slipped up here.” 

Now, it must be that this had been diagnosed before, when [wife’s name] was a very, very young person indeed, and I know there is always some difficulty in medical records being shipped from one county to another and it may be that there were still some records there that the doctor was, was aware of. So it could be that [ name] has had MS for a very, very long time but it didn’t show itself in, in any way shape or form, until round about nineteen seventy four.

John visits his wife every day in the nursing home where she now lives. She needs help to eat, but he thinks this is one of the few pleasures she has and doesn’t want her to have a PEG tube.

John visits his wife every day in the nursing home where she now lives. She needs help to eat, but he thinks this is one of the few pleasures she has and doesn’t want her to have a PEG tube.

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Since then, certainly during the past five years, the situation has deteriorated very badly. [Wife’s name] is now completely bedfast. She can’t be got out of bed at all except to be put into a special chair via a lift and taken to the, to the shower to be kept clean. Other than that, she’s in bed all the time. Her speech has gone. She can’t communicate at all now. She knows that I’m there but she can’t communicate. She can’t feed herself. She has to be fed in every way. She’s also doubly incontinent. So the situation has gone from being a healthy individual to being completely bedfast with everything having to be, having to be done for her.

That must be very hard to watch somebody you’ve lived with all that time, you know, in such a declining state of health.

Well, it is. It is very hard indeed. From what [wife’s name] was when we got married, from what she was when we had the children it really is extremely, extremely hard. It does take some coping with. As I said, I go to see her most days and, in fact, I go to feed her, to give her lunch most days because I’ve got some expertise at doing that. I’ve had the experience to do it. Now the nursing home are very good but, but, nevertheless, she seems to respond to me perhaps even better than what she does to the nursing home staff and I do manage to get some food inside her.

It is difficult and the medical authorities have been wanting to put in a stomach PEG to feed her via a tube but [coughs] I didn’t want them to do that because really the only bit of enjoyment she’s got left is having, you know, some food and something to, something to drink and, fortunately, our GP supported me on that so they haven’t done it.
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