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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.

Age at interview: 30
Sex: Male
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Do you think at all about how the future is going to shape up for him?

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. 
It can seem more appealing to plan for the short-term future or to live day to day, focusing on the here and now. Planning for daily life was very important to Dave: ‘If you’ve got Plan A you can change it. If you don’t have a plan, you’re in chaos.’ Several people talked about the importance of planning their holidays or their respite care.
 

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.

Age at interview: 42
Sex: Female
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How far into the future do you, do you look?

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’.

Age at interview: 73
Sex: Male
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How far ahead into the future do you, do you look?

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.

Age at interview: 40
Sex: Male
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How much do you think about and talk together about the future and what might unfold ahead of you?

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.
Focusing on the here and now did not exclude looking further ahead. Chez and her husband were planning to move to a different part of the UK.
 

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.

Age at interview: 42
Sex: Female
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I know at some point that something will happen to my husband I have a positive outlook on life. It’s one of those things. If, if something’s going to happen to him it’s going to happen to him. It doesn’t matter what I say, what I do, at some point something is going to happen. Me sticking with a positive outlook on life is just my way of coping with things. The move hopefully to Wales is a positive outlook for me, because it’s something that my husband wants to do. He didn’t tell me for a long time that he wanted to do that. We’ve had a lot of things happen to us while we’ve been in the [place name] area and some good, some bad, some horrendous. And I think it’s time for a move, it’s time to move on to something different. And I think the time has come now just to do that change. And [name] him having the presence of mind to tell me that the time has come, that he wants to make those decisions and wants to, to move now is the time for me to say, “Right, OK, let’s get up, let’s get it, you know, get ready. Let’s do it”. It’s a long fight to get there It’s something different. It’s somewhere I haven’t been before but I’m there, I’m going to do it. I’ve moved around with him I think, I’m 42 now and this will be my 32nd house that I’ve moved to through both my father and my husband being in the forces. So moving around is nothing for me. It’s, I just place feet wherever I am and just get on with life. I think that’s why it makes it so easy for me to just say, “Yeah, OK, let’s get on, let’s do it, let’s just go”. I wish it was a lot easier to go [laughs] but we’ll get there. And we will do it. And that’s why I’m so positive.
Some of those we spoke to were worried or scared about the future. Nicola’s mum is still fairly independent but Nicola wonders ‘where it will end’ and thinks about how she will help her mum in years to come. Ann thinks about the impact MS might have on her young daughter’s plans to have a family and on her ability to work. Louise found her GP’s advice helpful: ‘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.’ Betty, on the other hand, was very frightened about the future and how she would look after her partner. Mike thought that one of the reasons he focused on the here and now is that he is scared of what might be ahead.
 

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.

Age at interview: 58
Sex: Female
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When you allow yourself to think of the future what do you see?

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.
Other people preferred to put thoughts of the longer term future to the back of their mind, saying they’d rather not think about it.
 

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’.

Age at interview: 75
Sex: Female
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You have both talked about being older now and, and having some anxiety about the future. Do you actively think about and plan for the future in any way?

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.

Age at interview: 49
Sex: Female
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How far ahead into the future do you look?

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.
The future can seem particularly unpredictable when dealing with MS. ‘You just don’t know,’ Eric said; and Betty said very definitely, ‘You can’t plan for the future’. Ray gave this uncertainty a positive slant when he said, ‘We know that the illness is going to progress but without a crystal ball we don’t know how it’s going to progress. So if the next 30 years with it is the same as the last 30 years then we’ll be doing all right. We’ll think we’ve done reasonably well’. 

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.

Age at interview: 62
Sex: Male
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When you think about the future, how do you see it unfolding?

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. 
Others were preparing their living accommodation for the future: Louise and her husband have decided, after putting it off for a few years, to change their bathroom; Mully and her husband have made their moorland house ‘watertight’ and are ready to make any other alterations they need; Morris’s dad is ‘all set up for the worst’ in a flat which has space for live-in carers if he should need them. Kay talked about taking one step at a time, but she was also looking to the future by including space for a mobility scooter, which her husband doesn’t need yet, in the design for landscaping their front garden:
 

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.

Age at interview: 49
Sex: Female
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Looking ahead to the future is obviously quite a sensitive area. Because it’s a bit like talking about somebody, we all know we’re going to die one day but we don’t like to talk about it too much. In the same way as MS is a progressive decline and, you know, statistics are going to say that he will end up in a wheelchair and become more and more dependent. It’s not an easy subject to talk about. But I think the way we deal with it is that it’s always me that initiates those conversations, and I try to deal with it by isolating something specific, so that we’re making a decision about one thing, one step at a time. 

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.
For some people thinking about the future brought thoughts of their own death, or the death of their relative or friend with MS. Some older people worried about how their adult children with MS would manage without them if they should die first; Jean said she hadn’t talked about the future with her son because it was ‘too painful,’ but hoped that other family members would support him after her death. Morris has developed a bond with his dad through caring for him. He worries about how he will cope when ‘the inevitable’ happens and his dad dies.
 

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’.

Age at interview: 55
Sex: Female
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As a parent I sort of stop and think about the future and sort of you know, you obviously think, especially with what’s happened to me, am I still going to be here and if she does need more support in another 20 years how’s she going to get that where's she going to get it, but then you’ve got your family and friends back up for that. So no I do think we’re taking it chunk by chunk sort of year by year in our approach to it. Keeping a really close eye on her and how she’s doing and how she’s managing work. 

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.’

Age at interview: 70
Sex: Female
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We know he’s got MS and we all know what it is different areas where it could lead to but we just carry on because all we can do is to make him happy and the rest of the family supportive. What I do think about is myself getting older and older and older and I know that things could happen and I might not be able to look after him, that I talk to the children about and they, like my daughter will say to me, ‘Mummy, when you pass away or when you get older and cannot carry on everything will be done, you just won’t be the one who is doing it.’ So I’m content, I’m content that my [name] will be fine.
While not everyone had discussed the future some were ‘desperately trying to avoid’ the option of care home. Morris said his dad ‘hates the idea’, John Y is really worried about having to pay for residential care for his wife and Kate says she and her husband ‘obviously’ don’t want to have to move to a care home in their old age (they are in their 70s now, living independently). Betty rejected her friends’ advice to ‘put him in a home,’ but she said her health was getting worse and she didn’t know how long she could cope with looking after her partner.
 

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.

Age at interview: 55
Sex: Male
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I’m worried about my future as I’m getting old, I know I’m going to be on my own also I’m worrying about her as well. if I can’t cope at home she has to go into a home, who is going to pay for that? I’m worried, I hear about people, like old people that they have to go into a care home and they have to pay for it and they end up selling their houses, or whatever property they have, to pay for that, it’s if I have to do that what am I going to help my kids with later on. You see that worries me as well, you see I want to help my children when they get married I want to help out there; if I could help with deposits to buy a house, this is something for them. If we have to sell that to pay for her care in a home there’ll be nothing left for them and what’s going to happen to me as well, what am I going to do? You know am I going, if I’m in care who’s going to help me, who’s going to care for me? That’s the things I may not talk about it but that’s it, things that are with me all the time. I don’t have, I can talk about things like that with you or somebody who is in a similar situation but I just can’t really go and talk to anybody, even the family, friends or a relative I can’t even, I don’t know just, I’m not a very talkative person anyway by nature. That’s the thing that worries you and stress you thinking about it.
Patience, whose husband is already severely disabled, avoided fear of the future by deciding to live each day as it comes and to be optimistic. ‘I am positive about the future,’ she said. ‘We will never lack. We will never be in want’.

(Also see ‘Talking about end of life’).

Last reviewed March 2020.
Last updated July 2018.

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