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Motor Neurone Disease (MND)

Impact of MND on family carers

A diagnosis of MND inevitably affects the wider family that are caring for their relative, whether they are partners, adult children or parents. As one woman said, “The illness really is our illness, not just Peter's”. 

Many people caring for or being cared for by a partner said the experience had brought them closer together, but occasionally the diagnosis brought tensions to a relationship or caused it to break down. Dealing with changing roles within the partnership and the household could be stressful, and some carers faced difficult decisions about whether to stop work. These topics are explored more fully in sections on 'Relationships and sex with MND' and 'Work and career'. Here we explore the wider impact on carers' lives and feelings.

Several people living with MND said they felt sad or guilty about the effect on family members. They were concerned about them becoming physically very tired but also about the emotional strain and the limits it placed on their social life. Some people were adamant they did not want their adult children to feel responsible for their care. 

 

He worries about the physical and emotional burden on his wife and how she will cope in future.

He worries about the physical and emotional burden on his wife and how she will cope in future.

Age at interview: 60
Sex: Male
Age at diagnosis: 56
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We were saying about my wife and saying how it's very hard, and I'm finding it very hard to think that she'll be on her own for years, 20, 30 years. But the other thing is that it's very hard now. She gets absolutely exhausted. She's my carer day and night. If I wake in the night, she's the person who has to get up and get me a bottle so I can go to the lavatory and this sort of thing. If she wants to go to bed early, she feels guilty about sort of staying. Because I've possibly slept in bed during the morning. Because one of the things about being in a wheelchair is that you get uncomfortable if you're in there eighteen hours a day. So if I have to get up fairly early in the morning, I tend to bed slightly earlier. If I know I'm going to be up late, I tend to go to bed slightly later. She's always up, she's always running around, she's got to feed me, she's got to wash me, dress me. She hardly has any time for herself.

 

She does not want her daughters to feel they should look after her - that is not why she had...

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She does not want her daughters to feel they should look after her - that is not why she had...

Age at interview: 54
Sex: Female
Age at diagnosis: 52
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I certainly wouldn't ever want my children to have to look after me, ever. My mother's 79 and she's quite decrepit, but she still lives independently, and I don't think she'd ever want that. Well, I couldn't look after her obviously anyway. And I wouldn't wish that on my children. I wouldn't want them to have to look after me. Because I don't think I'd be a very good patient for a start. Because I'd get very frustrated, and I'd probably be a very angry person. And it's just not fair. Your children, you don't bring your children up so that they look after you. That's not what life's about. You know, they've got their independence now, and let them get on with their lives and live their lives, and not have to look after their decrepit mother. So that is quite a big problem.

Most carers said they wanted to provide as much of the personal and physical care as they could themselves, but at the same time said it could be very demanding. People described sheer physical hard work, disturbed sleep and exhaustion, often at a time in life when they themselves were not as young or strong as they used to be. 

 

He and his wife did a lot of lifting. It was hard physically, but as parents they just did...

He and his wife did a lot of lifting. It was hard physically, but as parents they just did...

Age at interview: 62
Sex: Male
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And so we continued to have a reasonable quality of life, moving with the aid of the wheelchair, with the hoists, with personal lifting, right through until the time Olivia died. But to do that, my wife and I had to break all the rules. We had to lift her on all occasions. So there was no way that we could use the mechanical lifts to get her in and out of the car, to get her to a hydro pool. We had all the OTs and physios coming out of our ears and none of them could come up with a solution other than my wife and I lifting my daughter. I'm sixty-two, my wife is ten years younger, but in any of those cases I mean, I've got the strength and she hasn't, so I was finding it was quite - I suppose in a sense it was amusing - but also frustrating that we'd have a very able bodied helper coming in to assist, you know, the Social Services helper coming in to assist. But when Olivia needed to be moved from her bed to the wheelchair I had to come and lift her. Because we couldn't, the hoist wouldn't get in. We had one of these mechanical ones as well as the fixed one, and we couldn't actually get it alongside her bed to actually get her from the bed into the wheelchair. So whenever we were doing any lifts at all my wife and I would do it. We became quite proficient at it, but our backs did suffer a little bit, but they've recovered now. And to any parent I would suggest that for quality of life you've got to look at ways that you can do that.

This father said they used two-way radios, so that their daughter could communicate with them at night if she needed to. Another man got up in the middle of the night to raise his wife's legs to make her more comfortable in the last months before she died.

Often carers did things for their relatives they would never normally have done. One man said his grown-up son adapted well to giving his mother personal care which one would not normally expect to give to a parent (see Roger, Interview 45 below). Others found this reversal in roles harder to accept. One woman said her mother “had an immense amount of dignity and suddenly I was playing a physical role… That's quite a tricky line to cross, no matter how close your relationship is.” (See Interview 47 - Bev's story). Some people were also sad to see younger children becoming carers (see Interview 10 - Kim's story), although one mother felt her children's experience of MND was helping them to become kind and caring individuals (see Interview 21 - Sarah's story).

Sometimes people chose to have help with caring, and employed paid carers (see 'Personal care and care support with MND'). Respite care also gave relatives a break from caring, although several said they were too worried about their relative to relax. (See also 'Hospices, respite for MND and thoughts about future care'). 

 

She needed a break but was very unhappy about the quality of care at the hospice. She came home...

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She needed a break but was very unhappy about the quality of care at the hospice. She came home...

Age at interview: 40
Sex: Female
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This week of respite care was offered, and I mean I was very, very, very tired, and tired from living with the emotional sadness - not the stress of the work or anything, just this relentless awfulness of seeing Mum diminish. And my partner and I planned to go away and we decided we'd just go down to Cornwall - we didn't want to go overseas in case we needed to come back. And my sister agreed to come up here so that she would be on hand. About two weeks I think before that week I rang the hospice and said, 'Would they like a handover meeting?' And they said, 'No, they'd be fine.' And I wasn't very happy about that.

I had no information about whether I was supposed to send Mum up with feed and a week's feed, syringes, pink sticks, saliva, fizzy water, tissues - there was nothing. You know, if you go off to do something for a week, or you send your child off to do something for a week, they usually give you a list of what to take. There was absolutely nothing. So we went up there. It was a Monday morning, it's the consultant's round. It's all of a buzz up there. It's the most unsuitable time to be dropping off somebody for respite care. 

I said I was there, I said that I wanted to hand over Mum. I'd like to talk to somebody before I left. I had to leave at 11 o'clock. And so we sat, and time went by, and nothing happened. And at ten to eleven I went and grabbed a nurse, and said, 'Look, I'm leaving, I need to give you some information. Please make sure the right person comes and talks to me.' So somebody came who was obviously just trying to leave whatever it was she was just dealing with, and she knelt down on the floor. She had a scrap of A4 paper, folded in four with notes on the back of it, and she said, 'Tell me what I need to know.' I mean, how bad can it get? 

I left Mum and I felt utterly distraught, and I didn't feel that they'd taken on board anything I had to say. In fact I got a speeding fine on the way down from the hospice' We came home a day early and I went up to the hospice that night, because I could tell that things weren't right. And I spoke to somebody and I said, 'I'm taking my mother home tomorrow, and I want to meet with somebody, whoever needs to discharge her, and I want to talk through what's gone on this week.' 

So I mean that was a really bad experience and Mum went massively downhill from that, and she never recovered from that week at the hospice, and it was a dramatic turn, and it wasn't a turn that should've happened. There were two dramatic things that happened in the year. One, she had a fall, a bad fall, because the neighbours had left the hedge cuttings out on the pavement and she fell and cut her eye and had to have stitches. I have to say A&E were very good at getting her in and out quickly because they could see she couldn't stay around there. And the other thing was the hospice. So I have to say I felt tremendously guilty. I wish we'd never taken that holiday.

Several carers felt they had lost much of their social life and independence. When symptoms were advanced, many carers were unhappy about leaving their relative alone, sometimes even for short periods. Others were able to keep up their own activities and continue to work, and felt this was important. One woman felt sad that as she gradually did more and more things without her husband she realised that was what her future life would be like (see Interview 49 - Una and Bill's story). One man explained that he and his wife use walkie talkies to keep in contact when she is out walking their dog, so she can relax and not worry about him. 

 

He doesn't feel he can ever have time off from being a carer, and his wife relies on him for...

He doesn't feel he can ever have time off from being a carer, and his wife relies on him for...

Age at interview: 73
Sex: Male
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Yes, it's, I don't think I can ever have time away from being a carer, because I'm thinking about it all the time and wondering whether I should - I mean, for instance I have to ring up the doctor for all the medication and everything. Everything that my wife wants has to come through me because I have to use the phone and speak to the people. So all the appointments I have to make. So I'm virtually her secretary in that way, or her lifeline in communication. So that is a very important aspect of what I have to do, what I'm needed to do, to keep things ticking over. So what can I say? I haven't time for leisure in the sense of leisure. And if I was away I would only term it leisure if I could take my wife. And I can't risk going, spending the time away. I'm away already looking after this business, and then going home saying, 'Well, I'm off to play badminton tonight' or whatever it is, 'Squash or whatever it is tonight' or anything, I couldn't do that. I just couldn't, it wouldn't seem right.

Again there are certain aspects of my life that I'm not able to partake of because I don't feel under the circumstances that they'd be right. I don't think they would help my wife's situation. I get very worried when I have a decent meal, because I know my wife can't enjoy that sort of side of life that is normal. And I feel I'm doing something that I shouldn't be doing.

 

Everyone has to find their own way of coping. They both feel it is important to maintain their...

Everyone has to find their own way of coping. They both feel it is important to maintain their...

Age at interview: 64
Sex: Female
Age at diagnosis: 56
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Ann' That's why I really think that, well, for us and, you know, for the way we've, we've treated this, you just have to get on with it in your own way. [Peter' Yes]. There is no right or wrong way. It's what's right for you. And people, you know, might say, 'Well, I wouldn't do it that way.' But you have to do it your way. I think that's what's important.

Ann' And also, well, from my point of view, Peter's very understanding when I want to do things. We always did our own thing prior to his illness, that we, you know, we had our own interests and - or our own careers or - and we, and I, he's not resentful of me doing things that I normally did, even when we, he can't do the same things. So I think that's - but I don't think he is [both laugh]. You know, so he's fine to let me do my thing as well. And I think that's really important. Otherwise you could feel very very resentful. So that's really important.

 

She advises other carers to try not to be obsessed with the condition, and to enjoy each day as...

She advises other carers to try not to be obsessed with the condition, and to enjoy each day as...

Age at interview: 40
Sex: Female
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Yeah I think that it's a really difficult position to find yourself in for many reasons. But I think the hardest for me certainly was that while your parent is still well enough to manage their own healthcare you must let them manage it. That human nature seems to make one in a way - I think entirely naturally - obsess about illness, or not obsess about it, but it becomes the main focus at the point of diagnosis. 

I look back on that now and I think I wish we'd just shut the door on it for as long as we possibly could. And not felt perhaps, I think if other people had been more organised for us, we could've known that actually when we needed it the things we needed were going to be there, rather than feeling we had to grapple with it all along the way. 

I think I would certainly take more risks than I took. With going out, with going to do things, I would take today as being 'Well' and not being 'Ill', as it were. You know, tomorrow is always going to actually, with motor neurone disease, get worse. So push to the limits of what is possible today, without fear, because it's too easy to get bound up in the fear of the impossible and the difficult. And be brave. It's the only thing you can be.

Is there anything that particularly helped you through it all?

Well, I think my partner certainly. I could never, ever have done it without him. The strength of my relationship with Mum, and my own absolutely certain knowledge that I was always going to look after her. I knew that from when my father died when I was a teenager, I always knew she would come and live with us. And one or two people 'I think gave me strength' And playing bridge [laughs], which I just started learning to do when Mum was diagnosed, and I have to say that was a saving grace.

Several people said they began to act like a personal assistant, helping to coordinate professional care, especially if their relative had difficulty speaking. One said he became his wife's 'lifeline in communication'. Often, they saw themselves as a point of continuity between the different services involved. One man said, 

“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.”

This responsibility was not always welcome, but people felt strongly that it was important to do the best they could. Sometimes their role as part of the care team seemed to be recognised and respected, sometimes not. Some carers also said they spent a lot of time trying to find solutions to the different problems facing their relative as symptoms progressed. 

 

He took responsibility for coordinating Di's care himself - it was exhausting, but worth the effort.

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He took responsibility for coordinating Di's care himself - it was exhausting, but worth the effort.

Age at interview: 55
Sex: Male
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We decided we'd take as much of this into our own hands as possible and we would rely upon the medical services as much as we needed, but we would try as far as possible to stay in control of what happened. And in fact our own GP was extremely good. He didn't involve himself more than we required, you know. He wasn't insistent about anything. He said, 'Well, what are your needs?' And we decided, and we got on really. I mean, it was just one more responsibility that actually added to the exhaustion of it from my point of view. But looking back, I certainly wouldn't have done it differently for a quieter life at all. No. Because it did continue to give us control. As I say, I can't praise the District Nurses highly enough. They, there was nothing I would question about what they did.

Inevitably people did not always find it easy to keep positive. Many carers had periods of frustration and anger, and some became depressed, especially in the first few months after diagnosis. In the longer term, there was continuing sadness about the impact of MND on their loved one and anxiety about the future. Some people found taking an antidepressant helpful.

 

Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing...

Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing...

Age at interview: 62
Sex: Female
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So yes how does it affect your, your every day-to-day life?

'I think it's, it's crept up, bit by bit, you know as you add on more and more tasks that you do. Things that Bill could do last month are suddenly, I find I'm doing. I can't quite recall the break from him being able to dress himself and completely wash himself, to that not being possible, to my needing to be in attendance most of the time when he's moving around, especially if he's using the stairlift because there's a transfer at a landing across to another one. I can't quite remember, but I do remember feeling sometimes [name], my daughter and I, we catch ourselves talking as though he isn't here. And I think that's a sort of way of being prepared for him not being here. It's, it's sort of reflects that all of these little steps are mini-bereavements if you like. As you do more and more things, you know, cutting up food, all of the, all of the helping tasks. Being in a, not being able to be on sticks, having to have Zimmers, then having to have wheelchairs. Assessments for yet more wheelchairs and you see the role developing and you feel the conversations are all about the little nuances of, of things. Bill has a Lightwriter now which he's meant to be practising and using. You can pre-programme it with sort of frequently used phrases which might be 'bring me a Fortisip [drink]', or [laughs] 'oh God' or 'bugger off' come to mind you know? [Laughs] but it's all that sort of, little detail, and when people come, when friends come by or we have a meal with friends and then we sort of feel normal again, you know and the conversation isn't all got this undertone of MND and stuff, I think it raises Bill's game. And people say, 'Oh isn't he great?' You know, 'He's himself inside this sort of carcass that's packing up on him.' Which he is, but it also comes at a price because alone together there's the frustration and there's the, you know, all the difficulties and all the emotional stuff too and that's not, that's not easy. Yes.

How do you think, how do you find a way to cope with that?

I think I kind of, I think, I don't think looking back on my life that I've been a very good caring person in terms of I don't mean as a parent but as, say with elderly relatives in my family where I've had that opportunity to be more caring. And now, you know I have to be, I have to step up and do this thing which I never imagined I'd do but I, think you get the resources to deal with what life chucks at you because life can be shit basically, and I think somehow you do cope, well you do. And what did you ask?

How you cope with the emotional side of it?

Oh yes, by really just practically, just doing the job, and, it amazes me really the sort of things you get used to doing that don't offend you or are no difficulty. It's not just because he's somebody you've lived with for thirty something years and, you know, you've had all that love, and all those memories and all those experiences together. It's just that on another level here's a practical task to be done and the doing that, has to be the way you express the love or the other emotional side because really, it's quite a delicate line between, falling down a big hole, by expressing the emotion and then just, you know, [noise] being useless and actually doing the job, you know, and keeping the show on the road a bit, your show and, and Bill's show too.

 

Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

Age at interview: 52
Sex: Female
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Yeah he is. Yeah he's very positive and that, I think that rubs off. It's starting to rub off on me really in that I've sort of. I always thought I was a positive person until I met Marcelin and then I realised I wasn't really. But his positiveness is sort of rubbing off on me and so I suppose that, that sort of helps. It does help a lot. I mean there's times obviously when things get on top of him but on the whole he can always see the positive side of things. And that really helps me, you know, to sort of encourages, to encourage him as well, you know. It's a, you know and to support him in that as well rather than. That's something I think I find quite difficult. I've been some, I've been so used to sort of looking at the black, the dark side of things or looking on the dark, or the, being negative and thinking, 'Oh well things aren't going to work out'. But it's been, I think I, I've, I was still feeling, I was still sort of had negative, negative feelings and thoughts and it wasn't helping Marcelin really. It was, it was. He was sort of trying hard to sort of to pull me up and be positive and really I should have been the other way round, you know because you know as he says I have, sort of I have my health. I have, you know, my daughter and my granddaughter, you know a lot of family. And he unfortunately hasn't got all of these things. So that's been a real eye opener for me.

You know, because as I say I always thought that I was a positive person but I didn't [laugh] it wasn't until I met Marcelin that I realised that I sort of looked on the black side a bit. And it, I realised how unfair it was for me to sort of be looking on the black side when I had so much and then Marcelin was, was trying hard to lift me up out of a, not depression but just got a bit low. And you, sometimes you don't see, you can't see the wood for the trees sometimes [laughs].

It's not always easy to stay positive.

No, no that's right. No because you know, you tend. No that's right because you tend to sort of think, 'Well, what if?', you know, 'What am I going to do when, you know or if he's, no if he's bed bound or something you know and that.' So and it's hard. Yeah it is quite difficult then to remain positive because as you know that it's you that's going to have the responsibility of sort of dealing with things. And yeah wondering, you know, 'What do I do in this situation?', and that.

But I think on the other hand that that because I'd been on my own for so long because I brought my daughter up on my own. And I was always used to sort of dealing with things myself and you know just getting on with it and things. I think that, that's helped now because you know I still, I'm not used to sort of leaning on somebody to help. You know I'm, I've been used to dealing with things myself so I don't feel that I'm hard done by in a sense, you know, not having Marcelin. I mean obviously, he's there for me in other ways but with, you know like changing a light bulb or something [laugh] I've always been used to that so it doesn't, I don't think anything of changing the light bulb now. You know or trying to, having to screw up a little screw on his wheelchair or something. I'm just used to doing that and things that way. Whereas maybe other people might, it might come as a big shock to them thinking, oh well my husband always did that or my partner always did that. You know but never been used to it. So I suppose that helps you know because you don't feel like you're missing out or.

 

The uncertainty of how his wife's condition will progress causes him great anxiety.

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The uncertainty of how his wife's condition will progress causes him great anxiety.

Age at interview: 73
Sex: Male
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It's like a colossal cloud suddenly descends on you, and you have to find your way round, through, or under or over it. And the problems will come out of whatever it offers. It could be anything - well, I don't know, fifty things, really, problems that could crop up. Trying to foresee them is not an easy thing. It's no good, you can't foresee. I mean you think a bit about problems, if you're having to deal with someone that needs attention all the time' And as these things appear you can start to think about them. But in my case I want to put them to the back of my mind sometimes because I don't want to face them. I have to. But it's desperate when someone who you've lived with and loved and known, well, for the length of time that we've been together, to see them fading away. It's terrible. And not to be able to do anything.

It's something that you never imagine' When I was told, I said, 'Well, what is it?' I thought about it, and I thought, 'Well, I don't know anything about it.' You know, they gave me pamphlets and I started to read them. Well, I mean this gave me the biggest shock I could ever have in the presentation of that problem. And it's proved ever since then that it's a shocker, it really is. If it ran along normal rails, or if there were rails that you'd say, 'Well, it works in between this, that and the other' - if I knew, you could get some help and assistance, but it just doesn't seem to.

And that's the terrible thing. That to me is the worst thing of the lot. Not knowing. I've always been a person who can cater with things I know, good or bad, I can cater with that. I can adapt or I can get round or I can get under. Any adversity or anything like that, I'll fight and that's fine. But not knowing is something that's never come across in my life, now I think about it, you know. It's not knowing, and not knowing where to turn.

 

It is sad to have changed from being just a wife to being a carer. She misses him being able to...

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It is sad to have changed from being just a wife to being a carer. She misses him being able to...

Age at interview: 54
Sex: Female
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It's changed tremendously from being just his wife' to being his total carer now, but also best friend. Which is comfortable, but it's not the same. I think we both miss him being able to just hold my hand. He can't do that. He can't cuddle me, but I can cuddle him. And I do that as often as I possibly can. Because I know he wants to, but he can't do that. And I miss that. But that's the difference in the role. And it's one you learn from day-to-day experience' I think it doesn't matter what the disease is, what the illness is of the person you're caring for - becoming a carer is just a progression.


Some people found taking an antidepressant helpful.
 

She has been depressed about the loss of their future as a couple. She takes an antidepressant,...

She has been depressed about the loss of their future as a couple. She takes an antidepressant,...

Age at interview: 54
Sex: Female
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Again I think I've been very fortunate to have a good GP's surgery. I went there and had a chat, and she said, 'Do you understand what you're saying to me is that, the fact that you're really depressed?' I said, 'Oh, well, you know, I'm just getting on with things really.' But she talked me through stuff and put me on a, a mild depressant. And I got six sessions of counseling as well, which was quite informative. A bit scary in the fact that you do tend to understand things that you didn't before, and maybe you didn't want to. [laugh] That was okay. And I sort of got through that really bad time, carried on, and then slumped again. And she upped my, my antidepression tablets, but they're, they're still fairly mild and they are only a crutch as such. They were going to one of the other members of the group was going to take me off them. He, he said I'd been on them for quite long enough. I said, 'Okay, that's fine.' And the other doctor said, 'No.' Explained the situation and, and said, 'Just continue with them, because there's no point in sliding back down again to try and climb back up.' And I think I, I understand my depression a bit more now, that it's really railing against things you can't change. And sometimes it's a loss of what was, not only for him or for me, but for us because that's the hugest thing that's gone. But I've come to accept you can't change things. You can only make things better as is at the moment. So that's what I'm doing.

So the loss is your relationship?

Yes. We had, we still have a very loving relationship, but we had a very active relationship. We were very social, and very physical in all, all aspects, if you see what I mean. That, that is a loss, yes. And it's sad. But if you think about it too much it gets too sad. So there's no point. And you just get on with what you've got. I don't think it helps from a woman's point of view of going through the menopause while all this is happening [laugh]. Just adding that in, I think that added to the depression, that we were dealing with that too.

So it is your whole life.

Totally. There's nothing else. I have my own hobbies that I can do at home, but it's limited to always being tuned in to what he needs. And that's how, how it always will be. Can't help it.

No. How do you feel about the future?

I used to think about it a lot. I don't now. I really go from day to day. Because if you think about the future it's, there's nothing really there. If we can manage to keep on going the way we're going, then that's great. Anything else that gets thrown at us we'll deal with as it happens. And the fact that when he becomes more poorly, which he will do, and I know that, but I can't do anything about it until that happens. So I've learnt not to pre-empt it. And the final solution as such, if you see what I mean, it will happen when it happens. And I, and I can't do anything about it. And I used to, as I say, think about it a lot, because I thought it was going to happen. Now I don't. It isn't the first thing I wake up with every day, which is great. It's much better this way.

One woman described the support she had had from a carers' group and her MND Association visitor, which had helped her deal with negative feelings.

 

The hospice has been fantastic and set up a carers' course. Her MND Association visitor knows how she feels and helps her deal with guilt and negative feelings.

The hospice has been fantastic and set up a carers' course. Her MND Association visitor knows how she feels and helps her deal with guilt and negative feelings.

Age at interview: 62
Sex: Female
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Our local hospice have been fantastic. They know our home situation, they hold the link between so many players and I think, you know, someone in a position to do that is brilliant. They've always been able to help and advise with sort of practical things that can enhance life. And I think when Bill started going there for respite, once a week, he goes to day care once a week, to have, we just thought, 'Oh, you know, that gives us a break from each other.' But it was the medical expertise, the observation of the physio throughout a day not just on a half hour visit that was absolutely astounding in the support it gave. The MND Association has been fantastic, the befriender I have, I mean we actually like each other so apart from her role that has been amazing. The hospice ran a carers course and on that I met two other women whose partners, whose husbands had MND and we've sort of stayed in touch, two of us have stayed in touch and that sort of support was quite good. I think on the course, you know, you get the feeling that everybody's in an ideal relationship, their circumstances are fine, you know, and they're just doing this carers thing on top. And of course life isn't like that and through my befriender I know, you know, you have a, a whole lot of emotional issues to deal with. You know, your relationship may not be at the highest point it's ever been. You may have feelings that make you feel quite humble because you don't like the feelings that you're having. But, we're only people and people do have those feelings and other people have those feelings, and I think that has been helpful too.

Can you tell me a little bit about those feelings?

Well' sometimes, this sounds awful, sometimes you wish it was all over you know? And that's terrible. I don't wish Bill to have MND. I don't wish him to be dead. But, you feel, and, my befriender has said, you know, the sense of relief when actually it finished, and then the guilt that she felt because of the relief that she felt. And you can sort of in all these mini-bereavements I spoke about before as things are gradually deteriorating, sense that feeling at the end, you know, that finally you know there isn't this thing. It's a bit surreal because you can't actually imagine this person not, not being there but, you know, and you don't feel proud of feeling that feeling that I have to rebuild my life.

You're able to look, you're able to look forward now to the end and beyond, you're are able to do that?

Sometimes yes, yes. I think the, some of the time there are just days and we just deal with the day as it comes. It's very difficult to plan anything for example so that's why I say we just deal with days. It may be someone's coming at the weekend but it may be Bill isn't up to it actually and we have to say sorry, and of course they understand all that and that's fine, or longer term plan, like going into respite because I have something that I'm going to do or want to do or something like that. Well, you can sort of plan for that but you always know, nearer the event things may change because the circumstances have changed.
 

Some people felt inspired by the warmth and support from other family members and friends and found the experience had given them rewards and insights they had not expected. One father advised others to involve friends, neighbours and other family members at an early stage (see Interview 46 - Peter and Olivia's story).

 

The generosity and selflessness of friends who helped him care for his wife has made him see the...

The generosity and selflessness of friends who helped him care for his wife has made him see the...

Age at interview: 55
Sex: Male
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What I need to say was that friends. We couldn't have done it without the help of friends. They were amazing utterly, utterly amazing. Fortunately I'm in my fifties, Di was nine years older than me. She was sixty, sixty four. So we had quite a lot of friends who were retired, who could come over. And friends who made time who were working but made time, made lots of time for us. And just people in the local community you know, people offered their help everywhere you know, practical help. Some insisted on, on financial help as well. Some were very generous in all sorts of ways. You know people we hardly knew, people we'd just met in the street and said hello to but we hardly knew just rallied round.

Two people when we were over in the flat and didn't have a washing machine people organised themselves into rotas to do our washing for us. It was just amazing. It changed the way that I thought about people, you know. And Di's big thing was always about community and I began to understand things through her eyes over a matter of time. It just has completely changed the way I see the world. 

You know, we're rushing around all so competitive and sort of all having to meet our own individual economic needs. And then people were just abandoning their own interests and just rallying around all everywhere. It was just amazing.

 

Roger found strength from somewhere. It was wonderful to see his sons involved in caring for...

Roger found strength from somewhere. It was wonderful to see his sons involved in caring for...

Age at interview: 67
Sex: Male
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You know, I'm not a religious man but I think I got strength from somewhere. I really do, it was, I don't know. I mean, if it, if you knew my wife, it wasn't really a problem because she was always cheerful, you know, she never moaned about her illness and, and you know, sort of people say, 'Well why you Luise?' And she would say, 'Well why not me?' You know, 'I've drawn a short straw and that's it really.' 

So I mean I was just focused, I knew what I had to do. You know, we'd get up at certain times, well, obviously the first thing I had to do was take Luise to the toilet. Yeah, I just coped really. Probably about six months after Luise was diagnosed in March of 2005, I had reached retirement age, I retired about a month earlier. But, two weeks after my retirement I broke my Achilles tendon, so I was hobbling around in plaster for seven and a half weeks. So that was an added hazard really. 

And while all this was going on of course I couldn't do the garden. My son who lives nearby in [town] used to come over and do my garden over the weekend. My other son who was living at home was the joker of the family really. He kept his mother amused and even when I had to nip out and get some shopping or something like that and she needed to go to the toilet, he'd take her to the toilet. Lift her up and put her into the wheelchair if she was in bed and, you know, whip her into the wet room. Sort of looked like that and, did the business really. Which was, wonderful to see really because mother and son I mean, it's a difficult situation really doing the hygiene of a, of your mother. But he somehow managed that and, yes so really we had, we had a great team. 

And when I'd busted my leg up, Luise was involved with a local Catholic church, and all the parishioners would come round, knock on our door and we'd say, 'Who's that?' And there would be a shepherd's pie for four people, [Laughs], you know, amazing really and, people used to come round to visit and yeah so [sighs], it was tough but it wasn't all misery and dismal, really.

Guidance for unpaid carers who support someone with MND can be found on the MND Association's website. The MND Association also provide resources for carers, including a guide called Caring and MND: support for you, to help with the challenges of the caring role. These can be downloaded from their information pages on their website, along with resources about symptom management and daily living with MND.

Their information resources for children and young people can also help families communicate about MND, to help younger family members cope with the changes happening around them. This is particularly important where children and young people get involved in supporting the person with MND, and therefore become young carers. There is support available and the MND Association can help with guidance, support grants for young people affected by MND and other assistance. See their web pages for young people and their information pages for wider resources. See their 'Getting help' pages for information about grants and support.

Last reviewed August 2017.
Last updated
August 2017.
 

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