Multiple Sclerosis: friends & family experiences
MS: thoughts about the future
None of us can tell what is going to happen in our future, however carefully we plan it, but when people are living with a long-term, progressive condition the future sometimes has a special kind of unpredictability. Living alongside somebody with a condition that can be physically debilitating sometimes makes even everyday life uncertain. In these circumstances the longer term future can look still more unknown.
People we spoke to sometimes talked positively about the future, for themselves or for their relative or friend who has Multiple Sclerosis (MS). David was looking forward to spending more time with his wife when the last of his children left home. Mully said her husband was ‘always at the forefront of new things’ so she was confident that they would find solutions to any problems they might encounter. Sarah said, ‘We don’t look to the negative future. What’s the point?’
Nick sees his brother leading a ‘pretty full life, despite the disease’ and is relatively hopeful about his future.
Nick sees his brother leading a ‘pretty full life, despite the disease’ and is relatively hopeful about his future.
Yeah, I suppose yeah, obviously the sort of the work and relationship aspects of things are a concern. It’d be great for those two things to improve and then sort of later in life, I’m not really sure. Obviously, things like life expectancy and stuff, stuff come into it I suppose but it’s just hoping hoping he can stay as healthy as possible and lead the life that he wants to lead I suppose. It’s like the physical aspects obviously, affect him but he’s quite an intelligent guy and he’s into his, he’s got a lot of specific interests sort of in the arts and in music and I think the internet always helps in that respect. He’s got a lot of friends on line and he’s got all these interests, so he’s always really busy and getting on with things. So I’m sort of relatively hopeful for the future and I think, as long as he stays positive and he still enjoys life, then I think he leads a pretty full life despite the disease.
So I’m not too concerned in that respect. So it’s only, like I say, if it gets worse and it does affect his mobility, so what would the scenario be if he was to, if his movement wasn’t good enough for him to stay in Scotland, what with the snow up there and would be have to come back and live at home and then how would that affect him. Obviously, he’s still got his friends back here but would that make him depressed or what would he do for a job? So there’s probably longer term worries like that. I suppose it’s just sort of living day to day at the moment and seeing what’s round the corner but also getting on with it and as long as he’s happy and things are fine up there then just see how it goes I suppose.
Chez thinks it is easier to live life day to day rather than looking weeks into the future.
Chez thinks it is easier to live life day to day rather than looking weeks into the future.
I look day to day. I don’t look into the future. The future to me is daily. I find if you look too far ahead you don’t achieve what you want to achieve. So I’ve learnt not to look into the future. I’ve learnt to look daily. It’s just the way I’ve adjusted my mind set. Things have happened in my life where I’ve looked into the future and they’ve changed considerably. So now it’s day to day and if I achieve what I want that day it’s been a, a good achievement. If I visit my husband that’s been a good achievement that day. Rather than sort of looking weeks and weeks and weeks into the future it’s, I just don’t do that now. I used to but I don’t any more. I find it’s a lot easier to deal with things if you look on a day to day basis rather than looking too far in the future, because the future can change and it can change rather dramatically. And it has, many a time [laughs].
All Dave’s plans are based on what his wife is able to do. He always has a back-up plan ‘in case it all goes wrong’.
All Dave’s plans are based on what his wife is able to do. He always has a back-up plan ‘in case it all goes wrong’.
Ah, well it depends what for, make lots of plans but always have plan B,C & D because it may all change, everything you do in the future is conditional. Are we able to move, are we able to walk, are we continent, can we do this, can we do that, if we’re not [swish noise] and therefore you make a plan and you will say stop, you know you want to go to a hotel and it may turn out that we’re not up to scratch for going out, so you just cancel it. Sometimes you have to pay cancellation fees but I mean we’re booking ahead for cruises into two thousa, two years ahead.
One of the main reasons is it gives you hope, it gives you something to strive for and by booking ahead you get what you want and get it cheaper [laughter] so there’s method in the madness you see. But you do plan because if you’ve got plan A you can always change it, if you don’t have a plan you’re in chaos because as a carer you like things fairly rigid and laid out, we’re gonna do this. That’s why I plan all the meals I get all the stuff in so I can do that, as I explained just in case it all goes wrong, but if it goes wrong then you’ve just got to put your hands up and [swish noise]. We are eating some meals now which I was actually preparing when Trish fell down and broke her femur and had to go to hospital. But that’s alright; I finished off the next day and put those in the freezer so we’re now eating some of those meals.
Karl and his partner only make plans for a year or two ahead because they don’t know how MS is going to affect her.
Karl and his partner only make plans for a year or two ahead because they don’t know how MS is going to affect her.
Oh, we do from time to time. But, like I say, MS is such a difficult thing to quantify and to come to terms with that you can’t really make long terms plans. So we tend to just make short term plans, that we know what the next year or two we do this. We try not to think ahead too far because you just don’t know how it’s going to, to affect her. There might be a cure that comes along, there’s research all the time into stem cells, she might get a lot worse, so you can’t really make long term plans like that.
Chez thinks that moving to Wales will be a positive step because it is something her husband really wants to do. She is used to moving around and thinks the time is right for something different.
Chez thinks that moving to Wales will be a positive step because it is something her husband really wants to do. She is used to moving around and thinks the time is right for something different.
Betty is ‘scared stiff’ of the future, as it gets harder to look after her partner and he gets more depressed. She is not confident that she’ll be able to get the help she needs.
Betty is ‘scared stiff’ of the future, as it gets harder to look after her partner and he gets more depressed. She is not confident that she’ll be able to get the help she needs.
Oh, aaarrgghhh, if this hadn’t have happened we wouldn’t even be in this country. [laughter] Basically if this hadn’t have happened we’d be living in France and, but it happened and we are here. I’m scared stiff of the future, I really am. I know you don’t die from MS but it doesn’t help. I am actually very, very frightened especially because of all the problems with Government and care homes and God knows what else. I wouldn’t say I have sleepless nights but I do worry. A lot of people have said oh, you know, put him in a home, walk away and I’m thinking, you know, this is my partner you really don’t do that. Like I say my partner’s not English, he’s German, I mean he’s lived over here for donkey’s years, he sounds more of a Londoner than I do so it’s very difficult, I think there is going to come a time when I’m not going to be able to cope because my health is getting worse especially my back. I don’t know how much help we’d get from Social Services, you don’t get much now anyway and I think for the future you’ll get even less.
And there are so many things, I mean at the moment Social Service doesn’t work a great deal for lots of people and I think because of all the problems then it’s going to be even worse. I don’t know how much longer I can continue looking after him. Like I say, he’s a big guy and I’m getting shorter; I’m sure I’m shrinking. But I’m not going to give up on him. There have been times when I just want to kill him and maybe that’s an option, maybe I’ll just kill him [laughter] I don’t know, I really don’t. I mean sometimes he, he often says, you know, ‘Oh, I just wish I was dead.’ So, maybe you know, euthanasia? I don’t know, I really don’t. It is very frightening. I don’t know what else to say really; no, it’s very frightening, it’s very frightening.
Kate hopes for the best, but she does worry about the future. Her husband doesn’t like to talk about it and she says that ‘like a lot of people we shove it to the back of our minds’.
Kate hopes for the best, but she does worry about the future. Her husband doesn’t like to talk about it and she says that ‘like a lot of people we shove it to the back of our minds’.
Well, how far can you plan in to the future? Obviously neither of us want to go into homes. Bernard’s income is such that he would be, I think, all right. He could get people in, if he had to look after him if I died. I have no income at all because I’m of an age where pensions weren’t, although I had quite a high-flying job for many years as, there were no pensions involved.
I have my own mental plans what I would do if Bernard died first. I would probably sell up and either go to my children or buy a flat somewhere. Because I would have no income I, although Bernard’s been head of a school for a long time I only get a third of his pension and that l-, because when he retired, everybody thinks pensions for teachers are a lot of money, when he retired they were not a lot of money. So we have quite a restricted, so my, a third of his pension wouldn’t be a lot of money. And I think my own, I think my own state pension is two hundred and something pounds a month or something like that. So I don’t think I’d do very well on that.
But I do not intend to become an old lady who has to worry whether she eats or turns the heating on. I shall have to, I shall have to find another way round things. We just have to hope for the be-, you know, just hope and see what happens. I do worry about him, I do, the older we get I do. Bernard doesn’t like to talk about it because I think it, and I can’t talk to, that’s another thing, you see, I can’t talk to him about it because it upsets him. So I, so I suppose like a lot of people we shove it to the back of our minds.
Louise would rather not think about a future in which her husband becomes more disabled.
Louise would rather not think about a future in which her husband becomes more disabled.
Well, I don’t think you can look very far ahead because the whole thing with MS it is such a kind of erratic disease and so, for instance, when we’ve been thinking we’ve been thinking, what are we going to do about living conditions, you know, and bathroom and toilet and all that, actually, probably for about four years and worrying about it and thinking, “Well, we can’t really afford it and we’ll manage without.” And then every summer, when it gets hot, my husband falls over and has spent a few nights on the floor because I can’t lift him up and my son and I have tried to lift him and we can’t and so, or the ambulance has had to come and lift him up.
So we I mean we were talking about planning, yes, sorry and so we’ve thought about it and worried about it and thought, “What can we do?” And then, actually, you know, it was my GP, I went and saw her and she just said, “Well, don’t worry about it and, you know, don’t worry what’s going to happen in two years, three years. Just work out what you need to do now and get on with it and things will work out.” And, in actual fact, that’s what, I came back and said, “Right. Well, that’s what we’re going to do.” So yeah, I don’t think you can, you can’t worry.
If you allow yourself to worry and think things are going to get worse and, you know, Chris will become more disabled and we’ll need carers or, yeah. You know, I’d rather not think about it. I’ve kind of had to, I’m making myself aware in the short term that there are things we need to do quite soon to make things easier for him and obviously, easier for me. But again, I think it’d be too depressing to really think, you know.
I mean sometimes he has problems eating and swallowing, you know, and I, obviously, can cut his food up or whatever but he does sometimes, you know, have problems with that and, you know, he’s said jokingly, “Oh, well, one day I won’t be able to talk or I’ll choke or.” You know, so but anyway, I would rather not worry about it at the moment. I mean when we have crises and things like that happen, then of course, it is very shocking and stressful. I don’t sleep and I’m worried and the crisis kind of calms again and we carry on kind of as normal again for a little bit, you know.
Despite this unpredictability, some people anticipated that the progression of the condition would mean that they would need to have more equipment to help the person with MS. Eric could see that his life was likely to become more ‘restricted’ as his wife’s condition deteriorated.
For Jeff’s wife, MS is progressing slowly. She takes an active approach to exercise for strength and balance, but Jeff thinks there might come a time when they will need a hoist.
For Jeff’s wife, MS is progressing slowly. She takes an active approach to exercise for strength and balance, but Jeff thinks there might come a time when they will need a hoist.
Well, in my wife’s case as a very slow progression I suppose. So one just doesn’t know where one’s going to be in five or ten years’ time. But physios and doctor encourage us, us to make sure my wife has got regular exercises to strengthen leg muscles in particular and help with balance. And so every Monday we go to an exercise group with other MS people and, and this certainly helps the strengthening. And everybody is very very encouraging. And we, we’ve got our own aids fitted of course.
But inevitably, I suppose, but in the future, but this could just happen to somebody in old age anyway when things begin to weaken they would not be able to get out of bed entirely themselves, they’d need some help. At present my wife can pull herself up but she has to go straight in to her, in to her electric wheelchair. But there may be a time in the future when we’ll need a hoist. I’ve seen this with other friends whose sp-, partners and spouses have, have had this and that’s something you, you have to accept I suppose. But beyond that it’s difficult to say really.
Kay and her husband have different approaches to imagining the future, which causes some tension between them. She deals with this by focusing on specific, practical things which will make their life easier.
Kay and her husband have different approaches to imagining the future, which causes some tension between them. She deals with this by focusing on specific, practical things which will make their life easier.
For example, at the moment we need to landscape our front drive, which is a mess. I would like to include in the design for that an area where we would park a mobility scooter, you know, one of the little electric scooters. Not that he needs one right now, but let’s think ahead that the time will come, probably quite soon, when he does want to use a, a mobility scooter to get out and about and we will need somewhere to keep it. So I can talk to him about something very specific like that, which is only necessary because he will become less independent. But it’s not quite so in his face, because we’re talking about something really specific and practical. But it’s taken me a couple of years of living in this place before I’ve felt that he is ready to anticipate that that time will come.
We seem to go through phases where you have a plateau of what’s your normal routine and then you go through a transition phase where you, you prepare for the next chapter. And then the next chapter starts and you have a, a different normal, where you are less able. But ironically those chapters are easier than the transition period and the run-up. So at the moment I say we’re in a transition period, we’re planning ahead, we’re, we’re imagining how we can make life easier for the future. And that feels quite difficult. But once we get there, it, it will go so much more simply and, and seem so much more normal and, and, and everybody will just get on with it. It’s strange, it’s really bizarre actually.
In what way bizarre?
Well, my husband finds it really difficult to hypothesise. He you know, he can’t imagine what it will be like when the children have left home, for example. This, this is just his character. It’s nothing to do with his illness at all. He whereas I find it really easy to imagine the future and, and h-, how I’d feel about it. And, you know, not that I always get it right, but that comes as a very natural thing for me to do.
And so there is a tension between us when it comes to dealing with the future. Because he, he deals very much with what’s in front of his face now. So it, to the outside world it probably looks like I organise his life, I almost make his life happen for him in a sort of controlling type of way. But it’s not that at all actually. It, it’s just me being several steps ahead, so that when his, when the time for change comes it’s a step-by-step thing rather than a dramatic thing. Different skills, different strengths, different personalities, but you work it out somehow.
After her recent experience of breast cancer, Ann thinks about who will support her daughter in the long-term future. At the moment they take things ‘chunk by chunk, year by year’.
After her recent experience of breast cancer, Ann thinks about who will support her daughter in the long-term future. At the moment they take things ‘chunk by chunk, year by year’.
We’ve talked about if her fatigue does get really bad then we might talk about is she going to go on and say to work actually, you know, I have got this illness and I want to drop my hours down, I want to manage my fatigue by cutting my hours down and how would that work, everything like that. I mean people are doing that anyway for other different reasons in their life, to get a better balance so I think we still see that as work life balance in general and that’s how we sort of, that’s how we look forward to that. And who knows what the future is going to bring, you know, having a family’s not guaranteed for anybody is it, so life continually throws up these things and you then have to decide how you’re going to tackle that, manage it, cope with it and get on with it.
Norma was reassured by her children that they would support their brother if she should die: ‘Everything will be done for him’, they said, ‘It just won’t be you doing it.’
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Norma was reassured by her children that they would support their brother if she should die: ‘Everything will be done for him’, they said, ‘It just won’t be you doing it.’
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John’s children are young adults now and he worries about how he will afford to help them financially if he has to pay for his wife’s long term care.
John’s children are young adults now and he worries about how he will afford to help them financially if he has to pay for his wife’s long term care.
(Also see ‘Talking about end of life’).
Last reviewed March 2020.
Last updated July 2018.
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