A-Z

Multiple Sclerosis: friends & family experiences

Adaptations, aids and equipment for MS

People with Multiple Sclerosis (MS) can need a wide range of support with aspects of everyday living such as walking and moving about. In advanced stages of the condition some people need help with getting in and out of bed, getting about outdoors, personal hygiene, eating and drinking. Sometimes people need to modify their living accommodation. A huge array of special equipment is available and relatives and friends we spoke to talked about everything from adapted cutlery to house conversion.

Many people with MS experience problems with walking and with balance. This means that they often need support of some kind to help them move about. Sometimes they just need to hold on to things, or people. Shower seats, grab rails, ramps and steps around the house helped a lot of people at first. As their condition progresses they often use a walking stick; some people go on to need other walking aids like frames, wheeled trolleys, wheelchairs and motorised scooters.

 

MS Specialist Nurse describes the types of equipment that can be helpful around the house and talks about not being afraid of using wheelchairs to conserve energy.

MS Specialist Nurse describes the types of equipment that can be helpful around the house and talks about not being afraid of using wheelchairs to conserve energy.

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Can you say anything about the sort of aids and equipment that people might need to help them and how they get them?

Yes. I mean again generally it’s about responding to changing needs. So what we like to do in the first instance, if somebody’s newly diagnosed, then I will introduce them to our rehab team. They will have physio assessment, OT assessment. Aids and adaptations tend to fall practically with the occupational therapist. So we’re looking at how does somebody get around their home. Would they benefit from a rail outside their door just so they can step out? Would they benefit from an extra rail on the stairs? Looking at how do they shower or bath, you know, is there anything that would promote their safety in those areas? Looking in the kitchen, would sitting preparing a meal be easier than standing preparing a meal? So quite often we’re looking at very small things. We can, we can look at cutlery, you know, that may be a little bit more weighty, so it’s easier to handle and use. General advice on the types of even, you know cups, mugs. So there’s a lot of practical advice and small aids and adaptations. Obviously when you get to physiotherapy you’re looking at sticks, you’re looking at walkers. You know, again a big fan of introducing things like wheelchairs very early on because they conserve energy, you know, they allow somebody to continue to participate with the family. Whereas, you know, going out to look round maybe a theme park or a museum could be absolutely exhausting even for somebody that is still, you know, independently mobile. But using things like wheelchairs for short distances, advising somebody, “Why don’t you look at electric scooters? You know, the kids’ll love it. It’s a bit of fun!” So it’s not saving wheelchairs and scooters on somebody severely disabled, it’s about saying, “Let’s use them sooner rather than later” because, you know, it takes away the fear of having them as part of their life. And, you know, they come and go. If somebody’s poorly, use it. If you’re well, put it back in the cupboard. So I, you know, I’m a big fan of that.

Do people resist that at all in the early stages?

Yes, initially. So we get a lot of, you know, there can be tears, there can be just sheer terror at the thought I’ve mentioned a wheelchair. But once you’ve gone past that stage and it’s about I suppose a bit of cognitive behavioural therapy, it’s about giving different scenarios. And once somebody’s mindset has changed it can open up a whole new world to them. And that’s fabulous to see and for them to come and share that with you. That can be actually quite remarkable, and yet they were absolutely terrified in the beginning. So that is something that can make a massive difference very early on.
John X’s wife is fairly typical of somebody who has been living independently with MS for many years, using a variety of aids to help with daily life. Dave’s wife has more advanced MS and needs more equipment. Anthony’s wife is just beginning to need help to get around the house.
 

Dave got useful advice from a Disability Resources Centre and some equipment supplied by occupational therapy services. They have bought additional items themselves.

Dave got useful advice from a Disability Resources Centre and some equipment supplied by occupational therapy services. They have bought additional items themselves.

Age at interview: 73
Sex: Male
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Can you tell me a bit about the sorts of the range of equipment and aids and adaptations that you’ve had over the years and that you have now?

Ah yes, we’ve tended to self fund to be honest because going through, but we had some also some very useful advice from the [name] Disability Resource Centre, the OTs there, we went up and talked to those and they suggested certain things but we had for instance the bath lift, chair lift, electric gets you in and out, to be honest I use it as well, because as you get on, you know, because I can get down but I can’t get up. We got that, they were very good they did actually fit grab rails; we’ve got more grab rails than we’ve got wall space in the bathroom things like that. But we’ve bought extra things for ourselves, they’ve supplied a Zimmer frame but we’ve got walking rollators some with seats and I bought, we bought the wheelchair because we didn’t like their wheelchair and I bought a motor that goes on it so it helps me push it as well. She’s got a very nice, being Tricia it’s got to be painted gold, the frame, you see. But it is a very nice Dutch wheelchair. But if you’re going to do it, you might as well do it big, you know! That’s it. We’ve got a hoist at the moment which is, unfortunately, not very useful because it doesn’t fit in the bedroom. Yes, so, if she falls down in the lounge we’re alright but if she falls down in the bedroom guess who’s got to strain his back? In fact, what I did I bought, I bought a slide sheet to pull her out here or pull her out from the bathroom to be honest because we always fall down in tight little places so I’ve got these slide sheets which I put on and pull her out. Then maybe we can get the hoist and get her up, wheel her round and put her in the chair again because at the moment we don’t have the ability to get back up if we’re down. 

She’s got a whole host of walking sticks which are not much use to her at the moment but and in fact a grand one, black apple wood with crystals in. It was almost like, ‘By the power of Greystone’ [laughter], that was good for cruises you could totter along with it you see, it was good for poking little boys with it as well [laughter]. But no, a lot of things we’ve found out and we’ve funded ourselves, to be honest. You can get some things but, no I won’t be un-PC but you have to be very special to get a lot of help.
 

John’s wife has a range of aids to mobility, all provided by the Social Services Department of the Local Authority.

John’s wife has a range of aids to mobility, all provided by the Social Services Department of the Local Authority.

Age at interview: 63
Sex: Male
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And in terms of support for physical activity what adaptations or equipment have you required between you over the years?

Well we’ve got Social Services provided us, provided my wife with a attachment for the bath to go up, to raise her up and down so that she can get in and out of it. There are additional rails all around the house and in the garden to help her walk in and out. She is provided with a walking stick. She is provided with one of those wheelers, whatever they’re called. Rollavators or something they’re called. And with a wheelchair which she doesn’t want to use. That was all provided by Social Services. 
 

A man from the local council gave Anthony and his wife useful information about equipment that could be installed in the house and garden to help her move around more easily and safely.

A man from the local council gave Anthony and his wife useful information about equipment that could be installed in the house and garden to help her move around more easily and safely.

Age at interview: 43
Sex: Male
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Have you had any other contact with other health and social care professionals over the years in addition to the GP and the consultant?

Yes, only very recently actually, we had a chap round from the council to demonstrate various gadgets, a chair, a seat for the for the bath, he was talking to us about getting some handles put up, which we’re going to have done now. Going to have a handle outside the backdoor because there’s quite a lip. It’s a modern PVC door, not like doors used to be, where, you know, there was nothing, no lip to lift your leg over and my wife has problems doing that now because when, you know, stepping out on to the patio. 

So there’s going to be a grab handle outside. There’s going to be another one in the in the shower. So she can grab hold of that if she feels her balance going, which has happened, and she has ended up on the bathroom floor on several occasions. And they’re also putting a handle up so we can get from where the back door is up onto our patio, which is a slightly higher level, only about four or five inches higher but my wife has trouble both lifting her left leg up onto that slightly higher level. 

And also the fact that there’s nothing around to hold onto while she does it. I mentioned before how she moves around the house, moving from one piece of furniture to the next or to the wall and she can’t do that outside. So to avoid ending up using the wheelie bin, as something to hold onto, which she really shouldn’t do because it has wheels, [laughs] it moves they’re going to put a railing up outside as well. And this chap from the council showed us, or made us aware of, a few other extra bits and he was very good as well because the way he presented things was, “I’m only showing you this now. At least there, you’re aware of it. It’s in the back of your mind should you ever need it in future.” Because he ended up only leaving a couple of bits, the rest, my wife decided that she didn’t really need, at least not at this stage. So he was good. 
As some peoples’ mobility got worse they needed to install a stair-lift in their house, or move to single-level accommodation. Smaller items of equipment were often supplied free of charge- Jeff’s wife got a grant from the county wheelchair service for a wheelchair. The occupational therapist provided grab rails free of charge and they were fitted by the charity Age UK. Most people had to pay for major pieces like stair lifts or other adaptations to the house themselves. The Social Services department told Robin where he could get a good second-hand stair lift which he thought was just as good as a new one.
 

Paul wanted a particular type of stair-lift but the Local Authority wouldn’t fund it.

Paul wanted a particular type of stair-lift but the Local Authority wouldn’t fund it.

Age at interview: 56
Sex: Male
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In terms of adaptations to houses and things like that one of the things that I’ve found frustrating is you go to your local authority you get, ‘You can’t have this.’ We wanted a particular type of stair-lift, because we’d sussed it out, we’d looked up we’d looked round and we’d been talking about it, and for our house, there was only one particular type we could find. When we had the people came to do the assessment, they offered us all sorts of things because they wouldn’t support the type of stair-lift that we felt was best for our needs. It turned out they did actually agree with us but it wasn’t a company that they’d got the tender with, wouldn’t supply, so we couldn’t have it because it wasn’t in the ‘rules’. Beggar the rules. Try and change them.
 

John advises other people to think about the timing of major purchases so that you get the most use out of them. Only six weeks after installing a stair-lift they had to move his wife to live downstairs.

John advises other people to think about the timing of major purchases so that you get the most use out of them. Only six weeks after installing a stair-lift they had to move his wife to live downstairs.

Age at interview: 71
Sex: Male
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In nineteen ninety two, I retired from my job in the fire service and looked after [wife’s name] at home. By this time, obviously, [wife’s name] couldn’t climb the stairs so we had a room downstairs for her with a special bed and a lift to get her in and out of in and out of bed. But before we reached that stage, and this is a mistake that a lot of people make, before we reached the stage of where she’d got to live downstairs we did, in fact, install a stair-lift and, to be perfectly honest with you, we got six weeks use out of it because we left it too late to install it. It may have been of some use to us previously.

Also at this time, I’d bought a special vehicle, a special wheelchair adapted vehicle so I could take [wife’s name] around in it but, we did get more use out of that, but again, I think we left it too late to take that particular course of action. It would have been better had we taken it several years, years previously to get her around in, in a wheelchair instead of trying to get her in and out of a normal car. I did, in fact, fix a special lift into, into a normal car to get her in and out but it really wasn’t very successful and the wheelchair adapted vehicle was, was much better.
 

Sarah wasn’t keen on having a stair-lift in the house at first. She talks about how the whole family has to adapt to having mobility aids and other equipment.

Sarah wasn’t keen on having a stair-lift in the house at first. She talks about how the whole family has to adapt to having mobility aids and other equipment.

Age at interview: 17
Sex: Female
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Sarah: It’s like she got a stair lift. How long ago now? It wasn’t, it was a few months ago wasn’t it? 

Ray: Oh, it’s not long ago...

Sarah: And it’s one of them things where all these different mobility aids, walking sticks, wheelchairs, scooter, whatever level it be on, even things like getting a wet room and rails and things it, you’ve got to, well not just, not just mum but the whole family have got to adapt and you’ve got ...

Ray: Yeah.

Sarah: ... you’ve got to like, like I wasn’t big on having the stair lift was I? I said, “Oh it looks like an old person’s home”. But it, but I’ve never been like that with it, but I think as I’ve got older I’ve become more aware that each one of these items that you install is because mum can’t do something anymore, and as good as she was before but as soon as you see how much energy she’s got because she doesn’t have to go up the stairs, but she’ll still go up, walk up the stairs and come back down and, you know, after having MS for 31 years and having a kid and, you know, changing from a relapse and remit to secondary progressive you’d think it’s not bad going really. But it’s like everyone has to adapt mentally to the way that things are in the house, the way that, I remember when mum first got a scooter, I’m sure I remember that day when we went to that shop and she was trying that scooter so, I thought it was brilliant, awesome.

Ray: You were the age and then...

Sarah: I was six or seven wasn’t I?

Ray: Yeah, but that was a toy.

Sarah: Yeah.

Ray: It was a great machine. But, but over the years even the handrails around the house that, that we’ve put up, they’re all disguised so that, they’re not, shall we say disguised, they’re made to fit in with the property so it doesn’t look as though it’s someone that needs it. The handrails all around the stairs and everything like that, like they’re nice and wide and in fact I think that they’re an aid for able-bodied people as well sometimes, you know, it’s just so with all the handrails, bit by bit we’ve added some to the house each, every twelve months or so. 
It is beneficial to keep as active as possible when you have MS, as physical activity contributes to overall health and maintains bone strength. When people could no longer walk, even with a walking aid, using a wheelchair was a practical solution to problems of getting around. But it was also seen, by some, as a symbol of decline. Mully said that her husband’s mother, ‘assured us he’d be in a wheelchair by 40;’ so they were delighted that he didn’t need to use one until he was in his fifties. Jean told us that her son expected that, ‘he might need one in the future, but he wasn’t going to sit and wait in one until he needed it.’ When Kay Y went to a conference about secondary progressive MS, she was surprised that, unlike her brother, many people she saw there weren’t in wheelchairs. 

Some people with MS were resistant to using a wheelchair, or even a walking stick, at first, but gradually they got used to the idea as they found some benefits from using it, such as being able to get out and about more and to feel less exhausted. An electric wheelchair was very useful for relatives when travelling outdoors. When Paul Z got a pressure cushion for his wife’s wheelchair, it helped to prevent the sores she had been getting.
 

Anthony’s wife felt that she would be stigmatised if people saw her using mobility aids and has only used them regularly when she felt it was absolutely necessary.

Anthony’s wife felt that she would be stigmatised if people saw her using mobility aids and has only used them regularly when she felt it was absolutely necessary.

Age at interview: 43
Sex: Male
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When she first started to walk with a stick she put that off for a while because of the stigma. She felt, you know, that’s what old people use to walk around. You know, if she needed to walk with a stick, that was terrible to her. Now, three years down the line, there’s no way on earth she could manage without one and, more often than not, when we go out she has to link arms with me on one side and walk with a stick on the other side. But at the time, it was a major, major thing for her.

And has the sense of stigma gone or has that stayed?

It’s reduced a little bit. She’s gone about it in her own way in that she was issued with a NHS standard metal walking stick. That lasted about ten minutes. She now has a whole range of sticks in different colours to go with whatever outfit she’s wearing at the time. It’s her way of handling it and stamping her individuality on it I suppose but the stigma is definitely still there. 

The stage we’re on now is that because she can’t walk very far I’ve been pointing out to her that mobility trolleys, scooters are available at some places and she’s says, “Oh no, no, I’m not going to use one of those. I don’t want to be seen on one of those,” sort of thing, you know, and had a bit of breakthrough a few weeks ago because I managed to get her to try one out and it was a hoot. It was really funny because she went from, “Oh, really not sure about this. No, I don’t want to do this.” To when she was actually in it she was away and she was saying, “Come on. You’ve got to keep with me now.” 

But I know she wouldn’t have got in that if we weren’t somewhere quiet, which we were, and I’ve only managed to get her in it again once since and I’m not sure if she would ever take to using one on a regular basis until unless it was absolutely necessary. I can’t see her, for example, going to the shops on one. I can’t see that, you know. She would drive or I would drive her. She has problems using the clutch on the car now but at least she can still drive so, you know, the next car might have to be an automatic but, hey, she can still drive. That’s the main thing. That’s her life blood, getting around. Provided she can park close to where she needs to be at the other end, which is why the disabled spaces come in vital because if she has to park halfway, away from, half way down the car park by the time she’s walked to where she needs to be, you know, she’s tired. So provided she can drive around and park close to where she wants to be, then for the moment, things are okay. But no, certainly there was a stigma for her with the use of a stick and there is now with the use of a mobility scooter.
 

Ray’s wife was ‘really reluctant,’ to use a wheelchair or scooter. Now she finds that she is less fatigued when she uses an electric scooter.

Ray’s wife was ‘really reluctant,’ to use a wheelchair or scooter. Now she finds that she is less fatigued when she uses an electric scooter.

Age at interview: 17
Sex: Female
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Ray: Eventually she started to get quite a lot worse over the years and then you come along...

Sarah: [chuckles]

Ray: [chuckles] and your mum went back to work part-time but again the fatigue and everything kicked back in and she really struggled. So I suggested that maybe we ought to take the next step and get a wheelchair and stuff like that to go, when we go out and about shopping and things like that, which again your mum was really reluctant to do. And just by chance one day we were actually going to do some shopping up at, up at one of the local supermarkets and by, there was a motobility, mobility shop with scooters and walking stick and all this sort of thing so I said to your mum, I said, “Let’s just go in and have a look...”

Sarah: {laughs]

Ray: “... and see what we think”. So we went into this shop and spoke to the lady, said what we was thinking and there was a scooter there, a little green scooter and so the, it was like a shopping precinct so the lady said, “Just get on the scooter,” she said, “go round the shop and see what you think”. So your mum did and that was it, “I’m having that" she said. She realised the benefits of using... these aids are there to help you and to, and to help combat your fatigue. And stuff like that. So by using an, an electric scooter that give your mum more time to be able to do other things, you know, or more energy and stuff like that.
Betty felt that people in wheelchairs were discriminated against. Bernard and Robin talked about people ‘blaming you for being in the way,’ or ‘walking right through you.’ On the other hand, Robin, Paul Y and Ian also pointed out that some people, and organisations, were really helpful. Paul Z was pleased that when his young grandchild drew a picture of the family, he included his wife in a wheelchair as though it were normal.

A major piece of equipment for some people was a wheelchair-adapted vehicle to transport their relative and wheelchair. Sometimes there was financial help for this through the Motability scheme, but some people bought their own vehicles because it gave them more choice. Getting the right vehicle could be a matter of trial and error. Tony and Eric both found that the first car they got didn’t allow the person in the wheelchair to see out of the windows properly. They researched the next purchase carefully and tried several vehicles before buying. It was important to get a vehicle with good suspension so that the person in the wheelchair could ride comfortably.
 

Tony had to change their wheelchair adapted vehicle because his wife couldn’t see out of the window from her wheelchair.

Tony had to change their wheelchair adapted vehicle because his wife couldn’t see out of the window from her wheelchair.

Age at interview: 72
Sex: Male
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So that’s another area that you know, you have to work out, so to speak. So I think caring over the, a longer period is a matter of working things out, thinking about it. Not just sort of letting somebody else think about these things for you, but for developing them yourself. We have a disabled adapted vehicle. We had one which I got second hand. It was called a Kangoo. They’re good for a lot of people. It was no good for us, because with my wife in the chair in the back the window was just too low and she was just looking out to whizzing road. So that’s another little thing I picked up. So we got rid of that and we, but we tried other cars before we bought one. And, so it was important that she was able to see out the side. Little details but, my goodness, they do make a difference.
 

Eric describes the process of getting the right sort of vehicle so that he can take his wife out in her wheelchair.

Eric describes the process of getting the right sort of vehicle so that he can take his wife out in her wheelchair.

Age at interview: 65
Sex: Male
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Equipment? Oh, we’ve got a wheelchair-adapted vehicle which, the wheelchair goes in the rear of the vehicle so we can get around and it is certainly a lot easier than trying to do it any other way. But if we do go on a long journey, we also have a personal hoist fitted in the front of the car where we can actually hoist my wife from the wheelchair into the passenger seat. It’s a little bit easier than trying to talk to somebody that’s quite a distance behind you and concentrate on driving at the same time. So it’s much more pleasant to have her in the front of the car. But for short journeys around and going say to the local shops or something like that, she just goes in the manual wheelchair in the back of the vehicle.

Oh, I see. So the wheelchair-adapted vehicle is, it takes a wheelchair with a person in it in the back?

That’s correct, yes. Sorry, if I didn’t clarify. Yes, it’s, the suspension at the back drops down and there’s a ramp and then the wheelchair is clamped in and then there’s a special seatbelt for that. And it also allows us to have the car as a, still a four-seated saloon. So we can take grandchildren or son and daughter with us if we need to. But that was something that has made life considerably easier. Which, but unfortunately they’re not the cheapest things to purchase. 

And you’ve got to get the right one. Because we did have one, we had a Chrysler, a very nice vehicle, but being American based it was, the suspension was a bit wallowing. Where the one we’ve got now is a Renault and it’s got air suspension at the back, so it’s a much more comfortable ride for my wife. But that is only available on the larger vehicles. Because we did try one of the smaller vehicles you can get, but my wife wasn’t happy with that. It made her feel ill. And apart from that, instead of being able to look out the windows comfortably she was looking down at the road. So that really made her feel poorly. So we decided to go for the bigger one. So that works very well.

Can you talk a bit about the process of decision making about that? So, from what was happening to make you think, “Do you know what? I think it would be good if we got a vehicle like this” and then started looking into it and so on. Can you remember when, what was going on then?

Yes, we originally had a Motability vehicle, which was okay in the sense that [wife’s name] could stand at the time and she could turn and sit in the seat, no problem at all. When she deteriorated a bit from then, we had one of the revolving seats so that my wife could stand from the wheelchair, sit on the seat, and then I could lift her legs in and turn the front seat so she sat at the side of me then. But then it was a situation, she just couldn’t stand. So that wasn’t a practical option. 

And how did we find about it? We found a, local gentleman that did adaptations for vehicles. So, originally we had a personal hoist put in the front of the vehicle so we could then hoist [wife’s name] into the passenger seat. And then it got to the stage where because of the deterioration in my wife it wasn’t safe to continue, and it was getting harder for me to constantly hoist my wife into the car. 

We had seen people with wheelchairs going into the back of a vehicle, so I did a bit of research on the Internet. And what was the first one? Oh, the first one was a Motability vehicle and we had that through them and they, they provided this demonstration, again locally. And then they came to the house to see if it was suitable for my wife to go in and if she could cope with it. 

That made the decision, yes, that would be so much easier for my wife to go in and also for me to be able to take her out more often. Then unfortunately the vehicle that we then wanted, Motability wanted such a large deposit for it we felt that financially it would be better if we bought our own vehicle. So we have actually purchased our own vehicle, so that at least we’ve got something there that is ours. All right, we’ve got to pay, maintain it type of thing, but we, you know, sort of can keep it as long as we want and change it if necessary that much quicker. 

But it was something that, when we did that, at the time my wife was going down to the oxygen and people there started to see what we were doing. We were coming out of the back of the vehicle and making life so much easier. Then they were interested, so we were able to help them and pass the word on from there. 

But we’ve since found out, since we first had one like that you can get other adaptations whereby you can get a vehicle with a side lift and the person in the wheelchair can sit at the side of the actual driver in a wheelchair. So again like all mechanical things are being developed all the time and, you know, making life that little bit easier to cope with the difficulties of looking after somebody with MS. 

But it’s something that you’ve got to research quite deeply to be sure that you get the right one. Because, as I say, we did have a problem with one vehicle. And they’re not cheap things to say, well, you can just suddenly replace. So, yes, you’ve got, to do the job right you’ve got to research it quite well. And of course fortunately with having the Internet these days you can take advantage of that and do a lot of research on there. It’s a bit better than driving round and, you know, going to places that are not local. Because surprisingly here, we haven’t got a local supplier for these vehicles. We’ve got to travel at least 30, 40 miles to the nearest one. But they are good. They will, if you are interested in a specific vehicle, they’ll bring it for you to try at home. It is just finding out about these things.
Eventually, some people needed to make major alterations to their living accommodation, or to move house. Jeff, Kate, Karl, Patience and Mully and their partners had all moved to live in a bungalow or a ground floor flat. Louise and her husband didn’t want to move from the house where they had lived as a family for a long time, in a place that they liked and was convenient for them. They are planning to make changes to the house so that he can live on one floor.

Several people had made changes to their bathroom, usually converting it to a shower or wet room. Paul Z and John Y did all this work themselves. Paul got financial help from his trade union. John, a self-employed builder, had to pay for the work himself.
 

John adapted an upstairs bathroom, but then decided to build a downstairs extension for his wife to have her own bedroom and walk-in shower. He resented having to spend his own savings on this work.

John adapted an upstairs bathroom, but then decided to build a downstairs extension for his wife to have her own bedroom and walk-in shower. He resented having to spend his own savings on this work.

Age at interview: 55
Sex: Male
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In the end it was becoming so difficult to move her around the house especially the toilet, you have to lift her off the chair, when she was downstairs, put her on the toilet downstairs there was a tiny toilet. I had to take time, I couldn’t just do it straight away she has to be relaxed certain things like that and then help her off the toilet, clean her, pull her pants up, wash her sometimes. During that time about six or seven years ago I adapted the bathroom upstairs so she can climb or come near the shower, got rid of the bath and put a shower tray, a low shower tray so she can step over it. It became a little bit easier just for a short while, afterwards it was becoming very difficult to lift her from the wheelchair into the shower cubicle so we decided to extend the house downstairs to have her own bedroom and her own walk in shower and I didn’t get any help from the government or the local council because I was earning, I was working I was earning more than £17,000 a year and that doesn’t entitle my wife. And I resented that because I said why do I have to pay for it, I’m not asking for the help my wife is asking for help, we worked all our lives we’ve never been out of work, we pay our taxes and things like that so I resented having to pay but I had to do it in the end, I had to do it. So with the few savings I had I decided to start building the extension because I’m a builder myself. It took me about three years to finish, not even completely finish because I haven’t got a floor yet.
 

Paul couldn’t get financial help from the local authority to adapt his bathroom. He was not amused, later, when people from the authority came to look at the work he had done so they could install something similar for other people.

Paul couldn’t get financial help from the local authority to adapt his bathroom. He was not amused, later, when people from the authority came to look at the work he had done so they could install something similar for other people.

Age at interview: 56
Sex: Male
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Adaptations that we’ve done…we changed the bathroom. Again when we looked at…it was a standard family bathroom and my wife at that time needed to use a shower chair and so, obviously, the bathroom needed to be adapted. We asked at that time about adaptations and, nothing they could do. We put… we wanted a Closimat toilet, to make things are easier for her. And the council at that.., no funding available. As I mentioned earlier the… we’re part of a trade union. They gave us an interest free grant. We, or I, actually did the adaptations to the bathroom myself. Once we’d concluded it, during one of these visits while I was at work one of the people who came in to check my wife said, ‘Can we use the toilet?’ Went upstairs, came down and says ,‘Wow, what have you done up there?’ So, my wife explained that we’d done it. And we… my wife and I just sort of laughed about it when she told me. Anyway, two or three weeks later my wife said, ‘Oh, they’ve been round again.’ And I just sort of dismissed it as a routine visit and she says, ‘No, they’ve been round again to look at the bathroom.’ I said, ‘What do you mean they’ve been round again to look at the bathroom?’ She says, ‘Again. This is about the fourth or fifth time they’ve been round.’ I says, ‘Why, what’s wrong with it? Because, automatically, it made me suspicious, you know. She says, ‘Oh, no. There’s nothing wrong with it. They’re bringing people round, other people, to look at it, to see, to show them what adaptations they could do to their home.’ So, I rang up and said, ‘These visits you’re doing to our house?’ ‘Oh, we’re bringing other people in, cos we’re showing them what can be done and we’re putting them in for other people.’ I says, ‘You’re putting what we’ve done in our house in for other people?’ They said, ‘Yes.’ I said, ‘Well, can I have my money back for what I’ve done?’ Of course I got a, ‘No.’ So, I then asked for £60 consultancy fees every time they came in. I didn’t get it. They stopped coming.
Like John Y some people had to make extensive alterations to their houses. Robin was about to adapt two downstairs rooms, at a cost of about £25000, so his wife could live on one level. Tony had built a first-floor extension. Morris had converted a former pub into several apartments for his dad and some family members to live in:
 

Morris bought the pub he used to run at auction and converted it into flats. His dad lives in one of the flats, next door to Morris’s house.

Morris bought the pub he used to run at auction and converted it into flats. His dad lives in one of the flats, next door to Morris’s house.

Age at interview: 35
Sex: Male
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I mean, we’ve tried our utmost best to make his life more comfortable. He used to live in a council downstairs flat and he asked them to move him because of his wheelchair, it’s just not viable for him to live in that kind of accommodation. because obviously he got weaker and he couldn’t walk on his sticks, he was having to wheel his chair to the bathroom, the corridor was too small so he asked and asked and they didn’t want to move him and so we ended up buying a derelict pub and convert the, the downstairs of it to match his needs, with wet rooms to make it easier

Does he effectively live on his own?

Yes.

With one of your brothers in a separate dwelling upstairs?

So how, my dad he lives on his own so he’s got his whole house but it’s connected to three more properties which are apartments, two bedroom, there’s two, two bedroom apartments and a one bedroom apartment attached to my dad’s two bedroom apartment. And my house is a four bedroom house next door so I live next door to my dad in effect. Converted the cottage which used to be attached to the pub into a four bedroom house, so it’s quite, quite a nice complex you call it, quite a nice set up and it’s easier because before I used to have to walk or drive in winter if you imagine going to work, come home you have your tea and you’re sat down with your family, you put your kids to bed and you’re now with your partner watching well maybe Eastenders or a film and then it’s right we’re going to bed and it’s like yes you’re going to have to go to bed by yourself because I need to get my clothes on or my coat on and go and put my dad to bed, I might be another 20/30 minutes. 

And you know by the time you get back your partners sleeping and it’s a bit, you know, I don’t know what the words are to explain or describe it because sometimes it’s nice to actually go upstairs and have a chat before you go to sleep or, you know, so it does yes. now it’s just next door so even though it’s still, I wouldn’t say inconvenient or anything but it’s, it can be annoying sometimes but it’s easier because I can go round in my pyjamas, you know, so it’s easier, it’s become easier for me personally as in that kind of sense to be able to just go next door to put him to bed. Whereas my younger brother or my sister to put him to bed he has to do what I had to do, he has to get in his car and come so he does, he does feel that a lot to cope with kind of.

That housing complex sounds like an enterprising venture, can you talk a bit about how you made all that happen?

Yes I can due to good fortune and a bit of good luck I’ve basically worked since I was 17/18 I’ve had a bit of luck of being on a few game shows where I’ve won some substantial amounts of money and then I ended up being a landlord of a pub which was across the road from my dad’s council flat and I ended up working there for 18 months and business wasn’t the best and if you imagine, you know, working all day in a pub and then having to put your dad to bed and stuff like that, it’s quite tough but business wasn’t the best and then the smoking ban came in and people were drinking more at home. 

But what I wanted, my vision was to try and provide a place for all the community to come and socialise, you know, and I’d experience of pubs in the past my dad used to work in a pub and yes so I ended up running this pub and then as business declined I had this vision of this could actually be a decent, decent space, you know, and at the time I didn’t have the vision of how a flat for a disabled person would look like but I had the vision of this being a decent accommodation. 

So the pub closed down and they put it for sale and I ended up going to London to an auction, I’d never been to an auction before and I went to London and stayed a night in a hotel. I went to this auction in the morning and they had all this paperwork, all these boxes with papers in and I knew I had to look for a lot number and I think the number that they had, the lot number for the pub was 128 and I remember being there and watching a few auctions before mine and how people were bidding for properties. 

And I can remember two bedroom flats in London and they were going for like £200,000, I was thinking oh [laughter] let’s get back home! But what was funny was that I don’t think people in London was interested in properties in Yorkshire and most of the stuff that I’d seen prior was in London and down south. Anyway the pub came up to start bidding my brother, I had my brother on the phone because I, you know Google auctions and stuff and you have a look and you try and research what do you do, and these two people were bidding for the pub and it started off at £130,000 odd and bidding and bidding and then going once, going twice and he says ‘Start bidding, start bidding’ and I’m like ‘Are you sure?’ ‘Yes start bidding’ and so I start bidding for this property anyway we got it for quite a reasonable figure. 
Becoming completely immobile could be a trigger for the person with MS to move into a care home. People often wanted to resist this for as long as possible. Alice’s friend, who lives alone, has 24 hour paid-for care at home. Eric continues to look after his wife at home with the help of paid carers, a wide range of equipment and some extensive alterations to their bungalow. He had several ceiling hoists installed in to their home to lift his wife around the house:
 

Over the years, Eric and his wife have had various aids and equipment in their home to make life easier. They have also converted their bathroom into a wet room.

Over the years, Eric and his wife have had various aids and equipment in their home to make life easier. They have also converted their bathroom into a wet room.

Age at interview: 65
Sex: Male
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You do seem, just looking around as you’ve welcomed me in to your home today, you do seem to have quite a bit of equipment around. I wondered if you could talk about all the things that you’ve got that are designed to help you with looking after your wife?

Well, my wife, if we go out, tends to use a manual wheelchair. We do, she does also have a power chair, which she uses around the bungalow. So I’m not sort of constantly having to do that. We’ve also had installed a ceiling hoist, both in the lounge and in the bedroom and bathroom. Which is the only way, because my wife needs to be transferred all the time. So that saves me lifting. We did originally have a mobile hoist, but that obviously started to affect my shoulders and arms because it’s quite difficult on your own to handle those.

So we invested in the ceiling hoist and that makes life considerably easier. We have that. Because of the fact that [wife’s name] also has got a bedsore or has had a bedsore, she’s now on a, a special hospital bed with the, what do you call it? the compressed air mattress. And she goes on there regularly in the morning just to make sure that she’s not, [cough] excuse me, she’s not in one place all the time, to alleviate the possibility of those sores coming back. She does like to change from chair to bed just to have a bit of variety, especially if it’s a bad day and we can’t go out. Although she does enjoy watching television.

Can you carry on with the equipment list?

The equipment list, yes. What else do we have? I’m trying to think what else we have. How, do you want the small things or the..?

Yes, everything.

Everything? Well, for things like meals we’ve got a tray that goes over my wife’s chair. That’s on castors so she can have that, she doesn’t have to sit at a table, which is sometimes difficult. That can also be converted so that it’s a bookstand, although my wife does find it difficult to turn the page now. Where at one time she could read quite readily. The telephone, we can put on to loudspeaker so that at least she can still talk to people if she needs to.

We’ve had the, oh, we’ve had the bathroom converted. We now have a shower room, I beg your pardon, a wet room with a shower so that my wife can be dealt with by two carers easily and gets a shower every day. Where before, when she was having a bath, it wasn’t every day and she felt, she wasn’t feeling secure in it. Where now she can feel in the, sit in a chair that is secure and she feels so much happier on that. Originally we did have grab handles on the wall in the shower when my wife could stand, so at least she was safe then. The chair that she uses for the shower also acts as a seat over the toilet, so she can go on the, and we can, we can get her on to that easily and then put her over the toilet without any problems.

What else have we got? Oh, while, while [wife’s name] was still able to eat she had special knives and forks with larger handles so that she could grip them easier, but unfortunately now because her condition has deteriorated she can’t even hold those. The she if her condition is okay in the morning she can sometimes hold a spoon to have her breakfast. But if there’s any strength required to grip it she can’t do it. It just falls out of her hand. So I have to help her with that. Other things we’ve got? What else have we got? We’ve got a bed, hoist, chair, that’s it, that’s it.
(Also see ‘Getting help with care needs’).

Last reviewed March 2020.
Last updated July 2018.

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