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.
She does not want her daughters to feel they should look after her - that is not why she had...
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...
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...
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...
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...
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...
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.
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...
'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.
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.
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...
Some people found taking an antidepressant helpful.
She has been depressed about the loss of their future as a couple. She takes an antidepressant,...
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.
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...
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...
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.
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.