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Motor Neurone Disease (MND)

Personal care and care support for MND

Changing levels of mobility and independence meant many people we talked to needed help with personal care, including washing, dressing, and using the toilet. The very personal nature of these tasks made this a sensitive area. People of course wanted to preserve their dignity as far as possible, whilst at the same time accepting practical help. Sometimes it was only when a specific problem or event occurred that people realised a point had been reached when changes needed to be made.

 

He once got stranded in the bath after he let the water out. Now he has a shower seat.

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Age at interview: 80
Sex: Male
Age at diagnosis: 80
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I have got, they have brought me the shower seat there, which I can dip in and come up. I've been told, once I did and - no, I tried to improvise my own actually. I filled the bath. I went in happily - at that time I was a bit better - happily, and had a good bath. And then I let the water out. Then I was trying to get out of the bath. I couldn't, I couldn't raise myself. I was so stupid that, in the water would have been better, I would have been bounced up [laughs]. And I was struggling for half an hour. My wife was upstairs. She couldn't hear me at all. And I was struggling. My hand, and they were all, my both the hands were slippery because of the wetness, and as the bathtub is so shiny. Oh, I was exhausted. It took a long time.

You got out by yourself in the end?

I got out. And I was so, I couldn't, I just slept on the floor even. But I rested. The only - then I learnt myself - the only thing to do, which can help you is a rest. It doesn't matter, and not panic. If I have fallen down, stay there, recover, get your strength, and then do. This I understood, and I applied. But I, it, it is there, and then I apply.

A first step for many people was to make changes to their bathroom and install equipment, especially hand rails, toilet risers, bath/shower seats and hoists. (See also 'Aids, equipment and adaptations'). Some decided to move their bathroom downstairs to make it more accessible, and some chose to have a wet room installed so they could shower easily. Grants may be available to support these adaptations, but sometimes people felt this took too long to arrange and paid for it themselves. (See also 'Finances and benefits'). 

 

They put in a downstairs bathroom with bath and hoist. Olivia's symptoms were progressing rapidly...

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Age at interview: 62
Sex: Male
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And so we had to get a bathroom installed downstairs fairly rapidly, because although we have downstairs cloakroom we didn't have a bath, and Olivia did like her bath, and quite clearly another decision had to be made about whether it was a shower or a bath, and again with hindsight we made the right decision very quickly. We were told it would take three months to get approval for the planning permission for the bath to be put in and funding from the Social Services and all of that sort of thing, and we said, 'That's simply not acceptable.' So we got one fitted within a week. We actually got it made. We created another room downstairs from a cloakroom area, knocked walls down, put new walls up, put the plumbing in, put a bath in, and were able to cope with that for the next two to three weeks by lifting and assisting Olivia in and out of the bath. But it became quite clear that that was not possible any longer. And so we got a mobile hoist system, through the OT support from the local Social Services, and we from then on hoisted Olivia in and out of that bath until her death at the end of December that year.

With hindsight, as I say, we should have made that decision earlier. We should have decided to put more permanent facilities in very quickly, and the advice that we would give in those circumstances is to ignore all the planning and if people want to come chasing you afterwards they can, but you've got to get stuff there that will make her life or - well, in this particular form of the disease and it's predominantly, in fact almost exclusively, young females, you have to make everything possible to ease the situation of the patient at the time, in our case our daughter. So that's the big lesson.

 
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They built a bathroom extension, with a large wet room and a hoist loaned by the MND Association,...

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Age at interview: 67
Sex: Male
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We had an extension built. There was an existing room there, a single brick construction that we had gutted, really, and made into a wet room so that we could wheel Luise in on commodes and slide her over the toilet. We had a shower facility and she could wheel her - well, drive her wheelchair into the wet room, which was quite large, and place herself just above the basin and I could wash her hair. The care was twenty-four seven, which we did all ourselves.

I have one son who was living at home, who was sort of working three days a week in London'then because his Mum was getting worse he came home to live at home and he was a great help, especially in the latter months of her life where I was having to use hoists to transport Luise from bedroom to wet room to the kitchen or the lounge. 

And of course when we moved into the extension - which was April, it was five months before Luise died - everything became a lot easier for manoeuvring. We had a ceiling hoist, a standing hoist which was a wonderful piece of equipment, which was loaned to us [by the MND Association].

People's views differed on how far to adapt their bathrooms. Some wanted a complete conversion to make everything as convenient as possible. Others wanted to keep the bathroom looking relatively normal, both for their own sakes and other family members. Bathroom equipment was sometimes seen as an intrusion and a reminder of disability. One woman said it 'freaked me for days' when the occupational therapist suggested changing the bathroom. Another said, 

'The bathroom was hard because I had two teenage children in the house who bring friends round, and I didn't want a bathroom that was so clinically disabled. So the toilet was raised on a plinth rather than having the toilet top and arms -more cosmetic, really. Just trying to make it a family bathroom and not just my bathroom.' 

The husband of another woman regretted having the bathroom completely revamped because the bath was uncomfortable and his wife only got a couple of months' use out of it. Occasionally people found the equipment provided was not very well suited to their needs. 

 

Some of the bathroom equipment provided was no use. He thinks staff need to adapt their advice...

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Age at interview: 73
Sex: Male
Age at diagnosis: 68
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I mean they gave me a - it's, they gave me a round stool that you put in the bath and sit on. Now how the hell do you sit in it, put your bum on a round thing in the middle of the bath? Because you can't get in the bath for a start. That's the first thing you've got to get over, yeah. Get in it. And then again if I drop the soap, where does it go? Always goes the same way, downwards. You don't get, you don't get a lump of soap that comes upwards or floats, yeah, yeah.

And you said some of the equipment you've just got sitting in the shed?

Oh, yeah, yeah, we've got a lot of stuff. A toilet lifter, it's just an extension of the toilet, which is no good at all. Because you can, you utilise yourself as to what you can do with what you've got, rather than trying to change your ways to their sort of ideas. You know, it doesn't work like that. It works like how people can manage their lives with what they've got, rather than trying to change their ways. Yeah, you can't change, you can't change your ways to somebody else's thinking.

Several people talked about having to "swallow your pride" in accepting personal care. One man commented, “It's very undignified, but you swallow your dignity and you get on with it. If you're going to be dignified, you're not going to get very far.” Being helped with going to the toilet was especially hard to accept, so many people recommended a Clos-o-Mat toilet which has a washing and drying function.

 

He has a Clos-o-Mat toilet at home which gives him independence. They are now available in some...

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Age at interview: 60
Sex: Male
Age at diagnosis: 56
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The only slight drawbacks - at home I have something called a Clos-o-Mat, which is like a Swiss lavatory which has a pressure button. It also has arm buttons, but I can't use my arms. It has a foot pressure button, I can press on that. And it's a lavatory that enables me to wash myself, so it gives me a certain amount of independence. And they didn't have one of those at the hospice, which I thought was surprising. But they are a cancer hospice, not a motor neurone disease hospice, though they take people with motor neurone disease. And so perhaps it wasn't as surprising. But these things are coming in now. The Japanese toilets are quite fashionable these days. They do all sorts of wonderful other things, like play music, and avoid the embarrassment of sound, but they do wash you as well. We first experienced those when my son lived in Japan. And you can actually find Clos-o-Mats now in some disabled toilets. I noticed that the [local music and arts centre] has wonderful disabled toilets. Some of these new buildings really do. Wide doors, which is good, room to turn the wheelchair round, so you don't have to back out, which is the usual thing. They're normally too small. But they also have Clos-o-Mats, and they also have hoists in some of them. So people who really needed to get on to a toilet could if they - I think you have to take your own sling. But no, some wonderful ones Anyway, the Clos-o-Mat is useful.

 
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Public disabled toilets are often cluttered and badly designed. Using a hoist is uncomfortable if...

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Age at interview: 58
Sex: Male
Age at diagnosis: 56
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I suppose one of the biggest problems that I encountered, really, in terms of living a sort of normal life was things like when you're travelling, discovering that disabled loo's aren't really disabled loo's, for example. I say travelling, or going to pubs or whatever. But you go to somewhere and you discover that in a pub, for example, the disabled toilet might actually also be used as a storeroom. So it will be cluttered up with ladders and buckets and things of that sort. Or a disabled public loo, for example, might be set up for people just by having perhaps a grab rail or something like that, but nothing more - perhaps no facility for manoeuvring a wheelchair properly. Things of that sort.

On the topic of disabled toileting and showering facilities, it's perhaps worth saying that one of the most useful things that I had in our own installation was a toilet which actually does the sort of washing and drying for you. Because when you have to be hoisted - particularly if you've got breathing problems - when you have to be hoisted on to a toilet, the extra complications of having somebody wiping you and cleaning you up afterwards while you're suspended in a hoist or when you're sort of perched on a commode or whatever, perhaps rather uncomfortably, that's an extra complication you don't really need. The downside is that they are very expensive. So if you can afford them, fine. But if you can't, well, you know, see if you can get someone else to pay for it.

As these men suggest, people face additional problems going to the toilet when they are away from home. MND does not normally affect people's ability to control their bladder or bowel function, but loss of mobility can make it hard to get to the toilet quickly enough. One woman explained how during a hospital stay staff failed to respond to her request to use the toilet.

 

When she was admitted to hospital the nursing staff did not listen to her when she said she...

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Age at interview: 74
Sex: Female
Age at diagnosis: 72
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Maryse' I went to hospital to admitted, to undergo'

To undergo'

Daughter' A test.

Maryse' So I and my friend went by ambulance, went to the nurses' station. And I said, 'I need to go to the toilet.' 'Oh we can't do that now, we're doing the take over.' So I retreated and went up ten minutes later. The same reply. I said 'Well, you should know I'm going to wet myself.' I said 'I'm not incontinent but I do suffer a little bit of urgency.' So then they joined me in the bathroom. Put me on the hoist and I said to them, I could speak a bit better than now. And I said, 'Take my trousers off and I'll be okay'. 'Oh no, you won't.' So they put me over the loo, sat in the hoist and then dragged me backward forward, behind to get my trousers down. You can imagine the result. So after that, they took me up to what was going to be my bed. I had a change of clothes that I brought in.

One couple explained that when they were travelling they made sure they had plenty of toilet stops before it became urgent. Like many others, they stressed the importance of improvising their own solutions. Another woman had decided to have a permanent catheter, which she felt had given her more freedom as well as dignity. 

 

A plan to have a paid carer fell through. They manage together and find their own solutions....

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Age at interview: 64
Sex: Female
Age at diagnosis: 56
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Ann' And then we were into the summer holidays, and that was fine because I was at home. And then I said, 'Well, look, in September you're going to have to have a carer in. Because I can't go to work, you know, not knowing that you're all right.' Well, Peter didn't, didn't want anybody. 'I'll manage, I'll manage.' And as one of the OTs had pointed out, even if it was just somebody to help him to get dressed in the morning, so that he didn't have to struggle with that, and then he'd got more energy for whatever else he wanted to do. So we, we managed to find somebody, and the day before she was due to start she, she fell over or she hurt her back and that was the end of that. So there was absolutely nothing we could do. We were thrown in at the deep end, or Peter was. And he's, hasn't needed anybody.

Peter' No.

Ann' So I help, now I'm at home, I mean I can help him if he's up and about, or he can still dress himself. And he can do it all, it just takes a long time.

Peter' Yeah.

Ann' But he is able to do it. So, and he doesn't give up, you see. So I mean that's the thing, you've got to be really quite tenacious about it all. And who else have we had? Oh, we did have a urologist, didn't we? Because at one time Peter was having problems getting to the toilet, and it was particularly when we were on journeys and things. And but we've now decided that we didn't really need that. If we'd just looked, as I said, out of the box slightly, there are ways and means. And if on a journey you just stop every hour and a half, and you just get out and you go to the toilet whether you feel the need or not, then you've covered that base. I mean, still in the house sometimes it's a problem, because he can't get quickly enough to the toilet. But it's few and far between. It does happen, it is distressing, but it's not a large percentage of the time. So I mean, and, and you can get quite low about that, can't you? But then we can move on.

Peter' Yeah.

Ann' So that's the main thing, that we can move on [laughs]. So I think actually if, all in all that if we've asked for help, we've been given help. And unfortunately there isn't a lot of help that's going to change the situation, that's the thing. And in the end it's like anything, it's down to - the illness really is our illness, it's not just Peter's. Oooh! And we have to cope with it in our own way. And I suppose in some ways we cope with it by trying to ignore it, [Peter' mmm] by just doing what we can in the best way we can.
 
 

Having a catheter has given her greater freedom to go out. She no longer has to worry about...

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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Something that's been, made quite a big difference to me and my freedom has been having a catheter put in, actually. Again we did that for the flight, for the long flight. Lifting me into a small airline toilet is not that easy [laughs]. And my husband and I have done it once before, and it does cut down on your enjoyment of Business Class if you constantly have to worry how many glasses of champagne you can have before you need the loo. So we, we thought we'd wipe that out. And I had a fantastic hospice nurse in Auckland, who I'd built up a really good rapport with, and, and she really, I'd always thought that catheters were a big deal and that you couldn't really have a catheter long term. And she said, 'Oh, no, no, they're not. You've got to be careful of infection and you need to drink more, but it's not, it's really not a big deal. And if you don't like it, you know, you can, you can have it removed.' 

So having built up that trust with her, I had one fitted, and it, and it's been great, because what it now means is that I can go out with anybody for the day. I'm not restricted to only going out for two hours before I need the loo again and, 'Is there a disabled loo? And is there someone strong enough or even that I'd want to help me to the loo?' That's, all of that kerfuffle has gone. And it, and it's great. There are some downsides. It's, it's tubes, it's plumbing. It, you are sitting in your chair, really, for the day then. You're not being picked up for, two or three times a day. And, and I think that does in turn, can affect your, your bowels and make you more constipated. But that's, all of those things are small fry and easily surmountable compared to having to be pulled up and, and the indignity of people pulling your trousers down and'

Yeah'

'being able to do it.

'again, it's, it's sort of possibly slightly counter-intuitive, isn't it? That it, it actually makes you more dignified.

Yes, it does. And it, and, and now my father-in-law can help me and just, you know, fills a bottle for me from my catheter bag by just lifting up my trouser leg. And somehow, when it's in a bag like that, it doesn't, it doesn't seem personal. And it doesn't really - yes, it's, it's something that's, you know, it doesn't really mean like that you're, that he's helping me with toileting. It doesn't feel like that.

No, it's sort of removed, isn't it?

Yeah, it is, it is.

Yeah.

So in actual fact it's given me more freedom. And it means that I never think about how much I'm drinking. I can just drink away, have as many cups of coffee as I like without thinking, 'Oh, yeah, but if I have a cup of coffee now, then I'll need the loo in an hour. And, and my husband's got to go out.' All of that worry has gone. And that worry of, 'Oh, I need the loo. Oh, gosh, but, but I've only just asked for this and, oh, and she's in a really bad mood or he's in a really bad mood. Oh, God, I've got to ask them to' 'Or they're really tired and - don't, don't have any of that now. So that's given me a freedom actually. And, and you've got to manage it, but it, you know, it, it can work.

Individuals living with MND and their families faced difficult choices about who would provide personal care. Some people were adamant that they did not want paid carers coming in, because they would find this intrusive. Several family members said they wanted to do as much as possible for as long as possible, but recognised they might have to accept help at some stage. 

 

She wants to care for her husband herself as long as she can. He does not want carers' working...

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Age at interview: 54
Sex: Female
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Have you considered getting any paid care in?

People ask me that a lot. My friends have said to me, 'You, you know, you can, you could have people in.' And my answer is always the same, 'Why should I pay somebody to give Barry a shower when I'm sat in the next room?' It seems so silly. And he would hate it. And I would too, because I, I would want to be in there doing it. The other thing is that his mother had care towards the end of her life. And they would come in at a certain time in the morning to get her up and put her to bed at night. And that scares him. He said, 'I don't want to have to get up at 8 o'clock in the morning and go to bed at 9 o'clock at night.' It's too regimented for him. And I agree with that. And I'm there. I don't want to go anywhere, really I don't. It's going to prove harder when he totally loses load-bearing his own weight. Because I don't know how we're going to cope then. I know it's going to be a case of hoists and all sorts of things. And that we both find a bit daunting. So I'm not quite sure what's going to happen with that. But, and maybe at that point we'd have to think of having paid care. But that's because I wouldn't be coping on my own. It would need two of us. But while I can still do it, then that's what's going to happen. It works. We do cope. We do very well. We're very fortunate that we lived together for two years on a mobile home, a motorhome going round Europe. You get to know each other so well that if it wasn't going to work [laugh] we'd have found out then. But, no, we get on great.

Some decided to limit paid help to tasks such as cleaning or shopping, freeing up time for family members to provide intimate care. A few women thought it was hard for male partners to take on tasks such as hair-washing and dressing, although it could also be an opportunity for greater closeness.

 

Her husband was upset when she considered having outside help with washing and dressing. Now he...

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Age at interview: 66
Sex: Female
Age at diagnosis: 65
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Has, has it affected your relationship with your husband?

It's made us closer. It's funny, isn't it? Because the doctor said did I need any more help? And I said, 'Well, I'm struggling getting dressed.' Well, having a shower and washing my hair was worst. I was just, it just wiped me out after I'd managed to do it. And she said, 'Well, we can get the Social Services. They can come and help you.' And the lady came from Social Services, and she wanted my husband here. And he got very upset. He said, 'What's wrong with me? Why didn't you tell me?' He said, 'I'll wash your hair and shower you.' And it was quite funny, because when you get old you don't really look at each other any more in that way. And I thought, 'Oh, gosh, he's not seen me naked for years. I don't know whether I'll like that.' But anyway he said, 'Well, give me a try before you start getting other people in.' I said, 'Oh, all right then.' So he's doing very well [laughs]. He's learnt how to put shampoo and conditioner on. Because they don't know about these things, do they? And so yes, we're a lot closer I suppose, because I've let him in. Because I was so independent, and you do get independent, don't you? And also this is the first time we've lived just the two of us. Because it wasn't long ago the youngest one was at home, and my mother. And so the last couple of years it's just been us and the dog, and now it's just us. So it's the first time we've been just the two of us [laughs]. Yeah.

But it's actually quite nice, in a way.

It is. And it's funny because I mean boys do their own things, don't they? But four girls at home, they want to talk to you all the time. And girls are different. Boys, if you give them food and the telly, they're fine, aren't they? And then clean clothes. Girls are, 'She's taken my jumper.' 'She's done this.' And so we never finished a conversation. We used to have to go out to talk [laughs]. And I think he just switched off. So - all these women around. And then when we were on our own, I'd say something and I'd wait for an answer, and he'd say, 'Are you talking to me?' I'd say, 'There's nobody else here except the dog.' 'Oh.' And I said, 'You're going to have to listen to me, because if I speak, I'm speaking to you.' [laughs] So that took a bit of adjusting, anyway [laughs].

One man said the bathroom was where he and his wife were at their closest' “I'm in the bath and she's sat on the loo seat and we do our heart-to-hearts in there when we discuss things.” 

However, accepting personal care from anyone, however close, was often hard. Some people were uncomfortable with the idea of their relatives (especially their partners) becoming their carers. (See also 'Relationships and sex'). One man said the last thing he wanted was for his children to feel responsible for looking after him when they already had busy lives and their own children to look after. Some people actively preferred having professional carers and felt it helped them preserve normality in their personal relationships. 

 
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Having strangers washing and dressing you is difficult, but she felt it was better for her...

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Age at interview: 39
Sex: Female
Age at diagnosis: 38
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My biggest tip I think is, 'You've got to concentrate on what you really want to do and then you leave everything else to every one. You leave everything else to everyone else to do. My biggest thing that I had to do was swallow my pride and accept that I could no longer wash and dress myself. And rather than expecting my husband or family to do it I accepted the homecare to come in. And when you've been an independent person and complete strangers are coming into your home, seeing you naked and washing you and dressing you it's quite difficult. But to my mind it was more important for me to have that and preserve some of my normality in my marriage and my normality with my family so that they weren't having to do all of that. So that was a conscious decision. 

Some things are hard to accept. But you've got to decide at the end of the day what is important to you and what you really want to do and what you think you can allow other people to do for you. So that's the only tip I've got really. I just keep going and finding, when you do find you can't do something try another way and try another way to do it and to, you know, just keep going.

 

Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her....

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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From your perspective, what was it like, you know, having other people come in to do care instead of your husband?

Fantastic. Because I could ask them to do whatever I liked, and I didn't feel guilty about it. I didn't feel guilty that he's got to do it all day. So I remember the time when we first got the carer in to help me in the mornings with showering and dressing, and it was fantastic. It was such a huge relief. Because we were finding that my husband would be helping me dress and shower and, and he wouldn't be dressed and showered himself till 11 in the morning. And then that would bother him, and I'd feel guilty about that. And that's, and that's just the start of your day, you know. You've got all sorts of other challenges to come. As soon as we had my lady to come in in the mornings, [husband] was totally freed up. And I would come out in the morning, dressed, ready - ching - and we could have breakfast together and start the day, you know, afresh. And then the challenges that we faced were manageable through the day. You didn't start the day with the biggest task. So that was nothing but positive, having care.

So it hasn't bothered you having somebody else doing the personal stuff?

No. I've, I quickly adapted to it, I think because by the time I took that on, we took that help on, I was really, [husband] and I were really at each other and were really ready to kill each other, you know [laughs]. So I was just glad for someone else to help and take that tension out, so that my husband wasn't my carer. And so it was nothing but a relief. The same, I remember the same feeling when I first used a wheelchair. 

We used to live in a house about 800 metres from the beach and it was a nice ten-minute walk. And we used to like to walk down and sit on the beach or go for a coffee at the cafe or whatever. And when my, when my walking became difficult, we couldn't do that any more. And I used to - you know, we could drive down - but I used to miss being able to walk down. So as soon as we got a wheelchair, 'Great, we can walk down again, and we can walk along the promenade.' And it allowed me and freed me up to do things that I hadn't been able to do. So I think because we'd left it relatively late, till things were getting frustrating, then actually it didn't become, it wasn't a big deal, whereas I know other people struggle with going into a wheelchair. But it, it gave me freedom in some ways. So, yeah, it's interesting.

That's interesting, it is interesting. And I guess, I mean in a way sort of having your husband do all the personal care actually becomes quite unromantic in a way.

Yes, yeah. And it wasn't that he was, wasn't good at caring for me. He was very good. But I didn't want him doing everything. And I'd feel guilty for that. And, you know, I'd, I'd ask him to keep the shower on while he was washing me, because otherwise I'd get cold. 'No, it was a waste of water.' Well, as soon as you get a carer in you can have it how you like, you know. So you don't get any backchat, [laughs] which when you've got people close to you is harder. And I'm finding that now as well where I've got a lot of support from our family here - phenomenal. I, I don't want to ask them to clean my bathroom or tidy my lounge or, or, you know, clean the kitchen. I don't, I don't feel comfortable asking people who are giving up their time. And I - but yet I'm quite happy to ask things of people that I'm paying, or that that is exactly what they're there for. It, it makes me, I feel like I'm much more independent, and that they really are an extension of my arms and I can tell them exactly how I want, want it. Whereas if I ask my, my relatives to clean the, the bathroom, and they don’t do it how I want it, then I would struggle with that.
 
Yeah, yeah.
 
And that would frustrate me as much as it not being done. So, yeah, it’s actually, I’ve actually found it good. What I haven’t found good with care is where the people change all the time. I find that really really hard. And that one challenge has been probably the biggest challenge for me, moving back to the UK and setting up with new carers is, I’ve set up through an agency to start with and I didn’t have a key worker. And I think I, I think I counted that in the first two months of being here I’d met twenty carers. And that is really dull, telling people how you want things all the time. And, “Not like that or like that” and, yeah, really quite tiring. When I, when I have carers in, I just want to babble on. And so that the fact that I’m being washed and dressed becomes irrelevant. You don’t even really think about that, to the point where you think, “Did I, did they put any deodorant on me? I can’t really remember”, because you were gassing on about something. And, and, but when it’s a changeover of people all the time, I find that hard.
 

For people who did not have a partner or other adult family member living with them, professional paid carers could be essential.

 

Organising care was hard at first but now she has a great team of dedicated people. With their...

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Age at interview: 41
Sex: Female
Age at diagnosis: 34
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My mum and brothers built a wall around me and made me feel safe and protected even though they were struggling emotionally. I admire their strength and devotion to me and love them very much. I also have great friends who will do anything to help me. Unfortunately, none of them were able to care for me full time which I understand of course.

I was appointed a social worker and an occupational therapist to attend to my care needs and adaptations to my home. However, this didn't happen automatically but as I was finding daily living increasingly difficult I blundered around trying to get help. Because I'm Jewish I contacted a local Jewish family centre and they gave me a Social Worker. She only worked part-time and had very little experience dealing with care packages or agencies. When she left the organisation I was without a Social Worker for about one year. I was eventually appointed one from my local council who is fantastic and sorted out the mess that was my care package. I really think Social Workers should be appointed on diagnosis because this was a cause of enormous stress and worry to me for several years.

My first Social Worker arranged for care from an agency for a few hours every day which eventually increased as I became more disabled. Because I had a baby, whom I dropped a couple of times (poor mite!) I was given more care hours but my Social Worker was always reluctant to ask the council because of her inexperience. I became an employer to the carers which I wasn't prepared for at all. They walked all over me but now I have learnt how to choose carers and have a wonderful team helping us. I was given full custody of my children after my divorce and have carers working here all the time doing day and night shifts. I was also given 15 hours care per week for the children by the children's division of Social Services which is an enormous help. I'm so grateful for the support I have from Social Services because I know that people living in other countries are not as fortunate and really struggle financially. I also have to give credit to my carers, who are not particularly well paid by most agencies, but care for us with such kindness. There are some amazing people around and the benefit of having MND is that I have met some of them.

I had someone from the DSS come here and help me apply for benefits. At the moment I receive Severe Disability Allowance, Disability Living Allowance and Income Support. I also receive help to pay the interest on my mortgage and thankfully am able to manage quite well on this income.

My Occupational Therapist had the difficult task of convincing a fairly able woman who was in denial to make significant adaptations to her home which I strongly resisted. I didn't want to stop using the stairs or climbing into the bath whilst I could. But when the care agency carried out a risk assessment and threatened to pull my care I had no choice. The council kindly gave me a grant to provide a walk in shower, through floor lift from lounge to bedroom and an outdoor lift. I also appreciate this support very much because I'm able to live very comfortably in my own home.

Many people talked about the difficulties of getting a satisfactory care package organised, whether they were arranging it themselves using the Direct Payment system, or through social services or the NHS. A particular problem was lack of continuity. Having lots of different people coming in meant it was hard to build up a trusting relationship, and it was frustrating having to explain each time what was needed. 

 

It was hard having personal care from different carers she didn't know, and tiring explaining...

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Age at interview: 45
Sex: Female
Age at diagnosis: 37
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What about having carers in? How is that?

That's hard. Originally I only had carers in once a day - one, one day for housework, and then I, eventually I got housework and two evening meals, so that the children weren't always cooking, as food was becoming a problem. And when I fell and broke my hand last year, I upped the care every morning for showers and what have you, and then went back to my normal. And then earlier this year I was struggling to have a shower because [daughter] isn't always around in the morning. So I upped the care.

And I'm fine now, because I've got a carer that I get on with and I've got -, and it's not that I don't get on with them, but I, when I was having a succession of different ones I was saying that, making the excuse that I wasn't going anywhere so I don't need to get dressed. Because having personal care, it's not very nice when you don't know the person. And it's hard when somebody has to shower you and help you get dry and then dressed, and you've never met them before. It's easier to say, 'I can manage', and then wait until somebody's in at lunchtime and maybe get dressed then.

So now you've got continuity?

Now I've got the continuous care, so nothing's.

And how long has this carer been with you?

Three months now. And we've just hit it off. Like I just, I feel as I've known her all my life, and nothing's a bother to her.

It's just luck really, isn't it, who you end up with?

It is. But when you have to have help it's not easy, really when you have three or four different carers a week in. And not only that, it's quite tiring when you've got that many that you've got to start and show them where the hoover is, show them how the shower works. And I have to have a set of crockery left on the bench. And if I don't, didn't tell a new carer, they would automatically put them away. And then I would go and maybe want a bowl of cereal or something and couldn't get a bowl out the cupboard and so, I go hungry.

The MND Association website provides the following information sheets, 10B: Direct payments and personalisation and 10C: Disabled facilities grants.

Sometimes arrangements fell through at short notice. Those who chose to use the Direct Payment system to employ their own carers could sometimes get a reliable team in place, but it took a lot of organisation and paperwork. The suitability and training of staff employed was also an issue. People recognised that the work is often poorly paid, but felt agencies needed to do more to ensure care staff would cope with the demands of the job. Also many social care staff are not trained in lifting or allowed to help lift, so family members still had to do some of the heavy work. 

 

Getting care staff organised with Direct Payments was hard work. They needed more care hours, but...

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Age at interview: 55
Sex: Male
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So we opted for the direct payment system to try and employ somebody ourselves. Unfortunately what you have to do under the system is you actually have to set yourself effectively as a small business and do the PAYE and everything for the people you employ, the carers that you, you employ, an anti-fraud measure that the government has introduced. But it does make a hell of a lot more difficult. We were, there's a partner organisation in the County which will do it for you for a fee so we opted for that because there was no way that I was going to sit down' I was going to say at the end of the day. There wasn't an end of day you know and, and start working out PAYE and learning how to do that. So we opted for that. But we still had to do a lot of accounting, keeping hours, keeping records of, of annual, of leave that was entitled and all this sort of thing. So it was, it was actually quite a burden to do that. But we felt that because social services would use an agency and we'd, we would probably get a load of different staff in variable calibre, calibres we'd try to find somebody ourselves and that was very difficult. It was very difficult to find anyone really and certainly it was very difficult to find somebody who we could trust. 

But we did eventually find someone both long after it was really needed and I was really absolutely in the ground by then, just day and night you know sort of struggling on. I felt dizzy a lot of the time. My head was buzzing from lack of sleep. I was getting about five hours of sleep a night. And also during the day and looking after Di and knowing that she was going to die you know. And so it was, it was a labour but it was a labour of love, with no positive end in sight. 

After a while we couldn't cope with the hours that we, we had the maximum number of hours available to a carer, available to us through the direct payment. So social services set in and said okay well we can get you some agency staff as well [coughs] And we thought okay and that was a real nightmare.

We they started to put the staff in place round about the end of November early December time and we got the carers, the agency carers in. Some of them quite frankly I wouldn't leave alone with my wife. They were dreadful. I mean they were probably perfectly competent with somebody with a less serious, a less demanding disease, with somebody in a less vulnerable position. But I really really wouldn't have allowed some of them alone with her. 

So we just had to struggle on. We went back to social services and we got an agreement with them, through the agency, that they would restrict the staff they said to two people that we felt were reasonably competent. One was actually excellent, the other was, was quite competent I felt. There were difficulties there that I felt but of course being agency staff they weren't allowed to lift. And the flat, the tiny flat we were in over the other way we couldn't get a hoist in, it was too small. So I had to continue to be available to do all the lifting, day and night. So I, I got more sleep but I couldn't, get you know enough. 

And then came Christmas and for eleven consecutive nights when we were promised agency staff, they didn't turn up, at the last minute. There was nobody or we got a, or we sometimes got a telephone call saying the person had called up. But sometimes just nobody turned up. And I was I was just staggering around really, just trying to cope. But in the end in the end we found two carers who we employed directly who were good and two agency carers who were trusted. But as I say even up to there were problems with of getting the hoist in here as well. They made it a problem with the bathroom. They hadn’t put in the electrics properly so they couldn’t be a hoist put up. And Di was really in her last stages by then and really didn’t want the disruption of the builders and so just decided that we would just carry on as we were at this point for the best.
 
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Organising paid care for her mother was very stressful. They saw a string of different carers,...

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Age at interview: 40
Sex: Female
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The paid care is a minefield, it's absolutely horrendous to venture into that world, and I think one ought to get help with that, and help is just not there. I was given a list of phone numbers by the district nurses, and that was it. In fact my partner rang all the places, there were only two I think, or maybe three, that actually covered this area. They tend to work in very close proximity to their base because traffic in the city is so bad that they can't get easily from A to B and therefore they try and concentrate in one area, and there was nothing between them. I mean in the end you just stuck a pin in and said, 'Oh well, that'll be the one.' But for me the key issue was I did not want to have six different people. I wanted an agency that promised me two regular people and three as a cover, and one other as a cover. And I went with the one that said they could do that, so we had a trial run. We had an agency in and we had two weeks until Mum had a week of respite care in a hospice, and I thought well we'll try those two weeks, and see how it goes. 

So the first girl that turns up is 18 years old, wearing heavy scent, culturally very different, but English. And communication was another one of the things that I had underlined. I think that if somebody has some severe speech problems and difficulty in making themselves understood, and being understood is key, then actually you need somebody who will hook into the sound, or some of the sounds, and be able to associate that with words, and make a pretty good guess at what it is that person is asking for. And no matter how good somebody's English is, if English isn't their first language they're really going to struggle. So this young girl was in fact team leader for the group of people that we had, which seemed somewhat surprising. But she proved to be very good. And then we had a bit of a rough ride. The woman they really wanted to put in here didn't do the kind of hours that we needed, and we had one girl who didn't fasten a hot water bottle properly and it leaked all over the bed, and thank goodness it didn't burn Mum. They all wore such heavy scent, which is extraordinary to me. People who are caring for people who are sick or elderly, you know, not only might those people have breathing difficulties and therefore scent is not the thing to wear, but also you don't really want the smell of your care worker in your house for another three hours after they've left. They're not supposed to become an integral part of your daily living. And this girl, I spoke to her team leader and I just said would she be able to say to her when she comes to feed this back to her, and this girl turned up the following morning, waited until I was off the phone when she'd finished her job, and absolutely let rip at me and said, 'How dare I mention anything to her manager, you know, what was I thinking of, you know she couldn't possibly have not tightened the lid on the hot water bottle'. And I just felt severely under attack and I was appalled that anybody that we were employing could actually be so rude. 

We had another girl who just used to take phone calls while she was putting Mum to bed. At one time she just left Mum uncovered on the bed while she sat and chatted to her friend. She used to just sit in the kitchen afterwards, no notion of time. She'd read the newspaper or what have you - she obviously quite liked being here. You couldn't trust them actually, either, to do the things that they were meant to do. Despite them having a list of everything, they would never review the list, which meant if things had changed it was just a question of memory. They didn't tend to communicate with each other, and at one point no-one turned up. Their on-call service out of hours is run in a completely different city, and you can guarantee the message doesn't get through. So it was very stressful having them involved.
 
And I also felt Mum needed to be treated as a 73 year old woman, not as somebody in their twenties. You don’t wear tops with your breasts coming out over the top, especially when you’re bending down over elderly patients, things like that - they’re just inappropriate, unsuitable. But we did stick with that particular agency after she came back from the hospice, again because I just thought it was better the devil you know, and we managed to get two people consistently, one of whom had a son who had a PEG, and she was a woman in her late forties, very mature, very on the ball, and very nice. And so we were lucky.
 
And I put that entirely down to actually just speaking to this agency consistently and saying, “This is what we want. Either you provide it, or we don’t use you.” And I think that’s the only way. Most of them of course are not used to working in homes where there are other people present, that’s quite an unusual set up for them, so they really struggle to know how to manage with a family. And I feel desperately sorry for people who have these people coming in who are on their own, because their ability to report back on the misdemeanours is not going to be as good as mine is, and they happen all the time. The level, the standard is quite shocking, really. So they’re a mixed blessing. Tricky.
 
 
 

 
The MND Association website provides a range of helpful information resources, including their main guide ‘Living with motor neurone disease’ and resources for carers, such as their guide ‘Caring and MND: support for you’. They also offer a variety of information sheets on specific subjects, including symptom management and daily living needs.

Last reviewed August 2017.
Last updated August 2017.

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