A-Z

Louise Y

Age at interview: 61
Brief Outline: Louise’s eldest son was diagnosed with MS while living abroad. He continues to live independently of Louise and her husband, who acknowledge that he wants to be independent but wish they could do more to help him. They worry about his future but try to concentrate on the present.
Background: Louise, age 61, is a retired project manager. She is white British, married with two children.

More about me...

Louise’s son was diagnosed with MS in 2002. He was initially given the diagnosis abroad after experiencing problems with his eyes. He underwent thorough investigations and was told he had MS. Louise heard about this from him on the phone and although worried and shocked by it, reacted by denying to herself the seriousness of the situation. She tried to find out more about MS but felt that she couldn’t really take it all in.

At the same time many things were happening in the family and at work which proved too much for her to manage and she developed anxiety and depression. This all came as a total surprise to Louise, and to her family. She was ill for 18 months, never went back to work and felt that it took her a long time to come to terms with this big change in their lives. Her husband was very upset at the diagnosis and still doesn’t like to think about it too much, or to know too much about it because, as Louise says, ‘Sometimes, the more you know, the scarier it gets.’ His younger brother, too, was very upset at the diagnosis and has reacted by offering to help look after his elder brother in future years if necessary and, in the meantime, running marathons to raise funds for MS research.

When she recovered from her depressive illness Louise became very active in the local MS Society, acting as the Chair for a number of years and reviving the branch activities. Involvement in the MS Society showed Louise that MS can affect all aspects of a person’s life and that no two people have the same experience. Her involvement in the MS Society was, and is, directed at trying, indirectly, to help her son. Louise doesn’t seek support from other carers, though would have valued being able to talk to someone in a similar situation to hers when her son was diagnosed.

Louise continues to feel a tremendous amount of responsibility for her son’s health and guilty that she can’t help him more than she does. She knows that she can’t ‘wave a magic wand’ to remove the illness and recognises that he wants to be independent; but she finds it hard to let go and admits that, when he comes home, they tend to ‘smother him.’ She grieves for the life that he should have had. She also talks about her son’s courage and optimism in not letting MS stop him doing what he wants to do.

Louise and her husband both worry a lot about what the future will hold, though they try to concentrate on the present and on what their son is able to do, rather than what he can’t do. He lives independently at some distance from the family and is still working full-time.
 

Louise’s son was told his diagnosis over the phone in the United States.

Louise’s son was told his diagnosis over the phone in the United States.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Anyway he went to the doctor and because he had to take out, or rather we had to take out loads of insurance, health insurance for him before he went, the doctor did some very thorough examinations and sent him for a scan. The results didn’t come back for a long time and just before he was about to leave before Christmas he said, ‘I’ve been ringing the doctor up to find out what’s happened to the results of the scan and she said she’d ring me back’. And then he said ‘She’s finally rang me back and she says, ‘Oh it’s MS but don’t worry it’s not very severe and you’ll be able to have a daily injection. As soon as you get back to the UK go and get the diagnosis confirmed’.

When my son came back he made an appointment with his GP who referred him to the hospital. He had a, I mean it’s quite difficult for me to talk about it because I wasn’t there, you know, all this happened in the place where he studies which is quite a long way away and it’s just what you hear over the phone and what he tells you and that’s one of the problems when you can’t go with someone to the hospital, be there and so on. 

But he had a lumbar puncture and he got the diagnosis back, then he started to have more symptoms. I remember him describing pins and needles at night and not being able to sleep and various other things. But he’s not a person who will really tell you what his symptoms are. He always says, ‘Oh I’m fine, I’m fine.’ If he says, ‘I had a struggle,’ you know that it really was a struggle. So he makes very light of it and still does.

You talked about the beginning stages and I was thinking about what you were saying about the diagnosis, the way the diagnosis was given in America, over the phone saying, ‘You’ve got MS, but don’t worry.

Yes, appalling.

What sort of support do you think health and social care workers ought to be putting in at that beginning stage?

Well, everybody I’ve spoken to remembers how they get the diagnosis or how their loved one got the diagnosis and it seems people have horror stories and, you know, or some, it’s a relief because they’ve had symptoms for a long time and it’s a relief to get a diagnosis but I think the way we got it was just appalling because we were just sort of left in the dark really. 

And, as I say, because my son lives away from us I don’t know what kind of support he got when he got his diagnosis. I think he did get quite a bit of support but we were just sort of left floundering really. It would have been useful to have somebody come round and just talk to us about it, tell us what to expect and tell us what help was available. But, as I say it was, yes, I think my son got some support but I don’t think we did particularly. But then it’s a question of resources, I suppose. But I do know that it’s tremendously variable, the amount of support people get when they’re first diagnosed.
 

Louise couldn’t take in the news of her son’s diagnosis at first. She felt she was in a kind of denial.

Louise couldn’t take in the news of her son’s diagnosis at first. She felt she was in a kind of denial.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, I remember sitting listening to this phone call and writing on a piece of paper, ‘MS’ and my mind just went blank. I didn’t know a lot about it. I didn’t know how severe it was going to be. The doctor had said it wasn’t anything to worry about, but at the back of my mind I knew it was something a bit more serious than that. I knew there was no cure for it and I knew that once you had it you had it for life. We were kind of just sort of numb, all of us. I remember going out for a walk and meeting some old friends, I must have started telling friends about it, "Oh, it’s MS" you know, like you’ve got measles or something and they said, "Oh terrible news", you know, "We’ve heard" and I was, "Fine. It’s nothing to worry about". And it was a kind of total denial and I did try and find out something about it . I went on the website, the MS Society, and got some information but I still couldn’t take it all in.
 

Louise is optimistic about stem cell research and future treatments for MS. She thinks ‘alternative’ therapies can make you feel better psychologically, but don’t help the medical condition.

Louise is optimistic about stem cell research and future treatments for MS. She thinks ‘alternative’ therapies can make you feel better psychologically, but don’t help the medical condition.

SHOW TEXT VERSION
PRINT TRANSCRIPT
What sort of notice do you take of news reports that talk about new treatments or, typically they would be about treatment wouldn’t they, how do those impact on your consciousness?

Oh, very much so, especially if it’s good news obviously, The recent sort of developments around stem cell research now and the fact that they really feel that in a few years time we’ll be able to reverse the damage to myelin and all those kind of things that you know, it kind of gives you a lift and you think well, you know, so much has been done in the last 15/20 years, you know that you think that eventually it’s like a cure for cancer isn’t it, you know, there’s so many different parts there and you know there’s so many different pieces of the jigsaw but one day that they will find something and it, you know, it will be treatable. And also the research into the causes and stuff Yes, I read all of that and, you know, the genetic component of it, obviously as a parent you kind of think well you know, how strong is that and so on. It’s very important yes.

And what are your views on alternative treatments?

Well, I think with alternative treatments, it’s not just alternative treatments for MS it’s alternative treatments for everything, really, is that I tend to be a little bit sceptical. I mean, I remember when I was ill with depression one of my colleagues who was very sweet and came and gave me a massage, you know, and wanted to know how I felt afterwards and I felt fine and I think that’s how alternative methods, medicine, they make you feel good because they give you attention and so on but I don’t, in my heart of hearts, I don’t believe they do anything actually for the medical condition. They just, perhaps, make you feel able to cope with it on a psychological basis. They make you feel better.

Some of them I think give people false hope, some of the wackier ones using blood transfusions and all this and I think sometimes when they demand money I would say don’t go there because I really have faith in the British medical profession. I think, you know, the neurologists are so, they’re the people who know what they’re talking about, you know, and if they recommend something that’s fine. I mean physiotherapy obviously is different, you know, I mean, my son’s benefited from physio, and I know a lot of people do, but I think alternative things well, you know, be a bit sceptical.
 

Although she thinks having MS is a ‘hard and lonely road,’ Louise tries to focus on the positive things in her son’s life.

Although she thinks having MS is a ‘hard and lonely road,’ Louise tries to focus on the positive things in her son’s life.

SHOW TEXT VERSION
PRINT TRANSCRIPT
But it is a hard road and I think everybody travels it on their own to a lot of extent, it is a lonely road. And I spent a lot of time thinking. But on the other hand, you know, I try and be positive because it’s, he’s got a life and he’s got a good life and he’s enjoying himself and, you know, I keep saying there’s things he can’t do but there’s a hell of a lot of things he can do, can and does and is doing and has a really interesting life. He’s very optimistic about what he’s doing and he gets on with things. He’s not dwelling on his illness all the time so that’s what I try and do, so just get on with life and try not to dwell on it all the time. And you know, don’t let it take over really put it in its place [laughter] if you can.
 

Louise said it’s ‘terribly hard’ to deal with how her son’s life, and their family, has changed because of his MS.

Louise said it’s ‘terribly hard’ to deal with how her son’s life, and their family, has changed because of his MS.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, what I found with everybody really, everybody is affected by it, it’s a long road and who knows where the hardest part will be but I do know from talking to everybody that the beginning is very hard for everybody. That adjustment and the time when you’re trying to come to terms and readjust your outlook on life and, and it’s a grieving process as well, you know, you’re grieving. 

And I think I still am grieving for the life that my son should have had in a way because he’s had to change his life so much. I mean he can’t, he was a very promising artist, he could draw wonderfully which he can’t do anymore and yet he’s finding other ways of expressing himself. But you grieve for that kind of life that he could have had and, you know, he was so popular with girls and, he’s not really had a girlfriend since his diagnosis, he’s lost that confidence, you know. 

And it, it’s that, you kind of, it’s not the life you expected and it’s not the problems you expected and, when I look at other families now when they’re all healthy I think, you know, they might be complaining about one thing and another, I think, ‘You’ve got nothing to worry about.’ I know it’s a cliché but if you’ve got your health you’ve got everything and if you haven’t got your health it takes an awful lot of adjusting. Especially with such a long term thing and you don’t know what’s round the corner, you don’t know how it’s going to affect you next year. Is it going to rapidly progress or is it not, you know, you just don’t know, nobody knows, nobody can reassure you. It is terribly hard to come to terms with it. I don’t think come to terms with it is an expression you could use really, it’s just terribly hard to deal with. 
 

Louise got involved with the local MS Society as a way of trying to help her son, but she then took on a wider role to put the local branch ‘back on its feet’.

Louise got involved with the local MS Society as a way of trying to help her son, but she then took on a wider role to put the local branch ‘back on its feet’.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Once I got better I got involved with the MS Society as a way of trying to help my son but, in fact, he doesn’t live in the area so all the efforts I was putting into the local branch were not really helping him. But I did learn an awful lot about MS and but after a couple of years I found that my symptoms were coming back because I was getting anxious again about the responsibility, really, of people who were looking to me for advice and I didn’t feel I was capable of doing the job as well as I should have been. So, I actually stopped that because it was, you know, getting a bit too much. And I have to recognise now that once you’ve had depression you are prone to it coming back. But, fortunately, I and my family were able to see, you know, that I was getting a bit agitated about things, a bit obsessive. I agreed to stop and that’s what I have to sort of watch out for now. 

Could you say a bit more about the role that you played in the MS Society?

Yes. I was actually Chair of the local branch. What happened was I was ready, I said to myself, ‘Oh, I think I’ll get involved with some voluntary work. I’m ready now.’ And it just coincided with getting a letter from the MS Society saying they were looking for someone to be Chair of the local branch. The branch had really fallen away. The Chair had left and a lot of the officers had left and it was in a really bad sate. 

So I took it on and you know, everybody said, and I do know, that I did a good job by putting it back on its feet , establishing a good committee and making sure we were doing all the things that a local branch should do, getting the finances in a lot better shape because they had no money. That wasn’t just my son running marathons but, you know, the fundraising things as well. 

But like a lot of these things once you become, and this is what I found in my previous job, it was very similar to my previous job, once you become a success you want to do everything really well and to keep that going and things get bigger and bigger and unless other people take on some of that load you end up, you know, really sort of collapsing under the weight a bit. And I think this is what happens with a lot of little, a lot of local branches that you have to have other people who come on that are willing to take on some of the jobs and it’s very difficult to find that. Understandably, you know, people don’t want, it’s not so much the time it’s the responsibility and knowing that you have to do things properly and competently and often people are very reluctant to take that on.

Anyway, so, I mean I did give people plenty of notice that I’d decided to go and although they wanted me to sort of perhaps take on some other role, I felt that that was the one I was interested in doing and I’d given my expertise and, you know, it was time to sort of leave and move onto other things which is what I have done.
Previous Page
Next Page