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Eric

Age at interview: 65
Brief Outline: Eric’s wife was diagnosed with MS in 1996, though she first had symptoms thirty years before then. Her illness has progressed quite markedly since 2002 and Eric now looks after her full-time at home, with twice-daily help from paid carers.
Background: Eric, age 65, is a retired driving instructor. He is white British, married, with two children.

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Eric’s wife was diagnosed with MS in 1996, though she had experienced symptoms as long ago as thirty years before that. She had suspected that she might have the beginnings of MS because she knew her aunt had the condition. Eric didn’t know anything about this until his wife went for investigations of an oscillating eye and the diagnosis came as a shock to him. Initially, there was little impact apart from occasional problems with walking. She had hyperbaric oxygen treatment which helped for a long time, but Eric thinks the benefits occur during earlier stages of the illness. His wife has now stopped having hyperbaric oxygen and has symptomatic treatment only; to help with spasms, for example. The illness has progressed over the years so that Eric’s wife gave up working in 2003. Since 2004 she has needed full-time care at home from Eric, assisted by paid carers since 2006.

Eric finds it very difficult to see a person he loves and has been with a long time just slowly deteriorating. He observes that this process is the reverse of the development and growth he sees in their young grandchildren. His wife is now fully reliant on him (sometimes he even has to assist the paid carers if the care company only sends one person) and Eric’s daily life is full of activity from getting up at 6.30 to going to bed at 11pm. They have a lot of equipment to help with movement both in and out of the house. Outside, Eric’s wife uses a manual wheelchair, which can be transported in their adapted car. Inside, she moves around the bungalow using a power chair, and can be helped into and out of chair, bed, toilet and shower using ceiling hoists (a mobile hoist eventually caused problems for Eric’s shoulders).

Eric now thinks of himself, because of the demands of the situation, as more a carer than a husband or partner. The possibilities for expressing physical affection between them, for example, have declined with the progress of the illness, leaving them both with a feeling of deprivation. ‘It affects your whole life,’ Eric says. ‘You don’t think it’s going to, you try and keep going as much as you can but it really does have a big effect on your lifestyle.’

Eric feels that health and social care workers could do more to respond to the person with MS, and the person caring for them, in a more individual way. In particular, he thinks more attention is needed to the ‘intricate details,’ the smaller things that enable people to have as near normal life as possible. To other carers, he advises: ‘Don’t be frightened to ask for help. And be persistent.’
 

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.

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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.
 

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.

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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.
 

Little things that care workers don’t always pay enough attention to could annoy Eric a bit.

Little things that care workers don’t always pay enough attention to could annoy Eric a bit.

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You tend to find that they don’t always leave things as they should do. They may only be minor things, but when you’ve had a long day and you’re a bit tired it can be a bit annoying. And you’ve got to go round and then tidy up with people. And they’ve got to remember that they’re coming into our home and respect that. 90 per cent of the time they do. But sometimes they just, little things they don’t think about, but it can make a big difference to our circumstances.

Any particular examples of that sort of little thing that can…?

Well, it’s things like the, the cream. We always keep it together. It’s always in the same place so we know where it is. They may come in, they’ll put the cream on my wife where it’s needed, but then they’ll either leave it on the bed or leave it on another shelf. So it’s a situation, some of the cream is so thick, if it gets on the bedclothes or clothes you can’t get it out. And that I find frustrating. Just for a little bit of care, just putting it back where it should be. We know then that it’s going to be okay. 

Sometimes one of the creams, they just leave it on the bed and it slips under the pillow. You, you move the pillow and it’s a bit of a mess. So there’s that thing. Things like the hoist, they don’t always put it right. So it then either hits the wall or it gets tangled with, because there, because there’s an emergency pull, or there’s two emergency pulls, they get all tangled together. So if you need to use that in an emergency you can’t, because you’ve got to untwist it. So I mean they’re not big things in themselves, but they tend to mount up and can be a little bit annoying. But generally speaking they’re pretty good.
 

Eric pays for all the twice daily help his wife receives from a local care company.

Eric pays for all the twice daily help his wife receives from a local care company.

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The carers that we get, they are a local company. We started off by s-, having social services. They set the procedures up, made sure it was working okay and then they passed it on to a local company, who come in. We, depending on, again depending on your finances how much you have to pay, we have to pay for all that ourselves. So we don’t get any help at all with that, until we get to a certain level, and then help will come with that. That is, unfortunately as my wife has d-, her situation has deteriorated, every time we get up to sort of the maximum that we have to pay they move the goalposts and they’re asking for more money from you as an individual. So we’re still having to pay fully for what we get.

Do you mind me asking how much that is?

No. We pay £112.50 a week at the present time. Now if we extend that, that works out at the moment £12.50 an hour we have to pay, and we will have to go up to a maximum of £153 before we get any help. The only help we do get, because of health and safety regulations my wife has to have two carers because of the hoisting, the second carer, we don’t have to pay for. That is, they’re provided purely on the grounds that it is the requirement of health and safety. So I think… 

But they come in three quarters of an hour in the morning to get my wife up, showered, dressed and then onto a chair, power chair. And then in the evening it’s just to get her ready at night, give her a quick wash and then from the power chair onto the bed, into her bed clothes and just make sure she’s comfortable. And they’re here for half an hour at night. So we get an hour and a quarter a day. 

Occasionally if I need to go out for an appointment or anything like that, I can request from the company extra help. Like the other month I had to have a dental appointment when my wife wasn’t required to go. Unfortunately our dentist is about 12 miles away, so I had to get somebody to come in and sit with my wife while I went out, had my treatment and came back. So again that is all having to be paid for on top of any cost you have to pay for your dental treatment. They’re quite flexible, providing they’ve got the staff. That’s the biggest problem.
 

Eric thinks it would help considerably if professionals looked at the ‘intricate details’ of what people with MS, and their carers, need so that they can live as normally as possible.

Eric thinks it would help considerably if professionals looked at the ‘intricate details’ of what people with MS, and their carers, need so that they can live as normally as possible.

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I think they’ve got to learn to understand and listen to the individual with MS and the person that is caring for them to what their real needs are. It may only be small things, but those small things can make such a big difference. The bigger things, yes, they can cope with and is quite readily available. But I think they’ve got to look at the more intricate details, if you like, of what the individual with MS needs and the carer looking after that person needs to try and enable them to continue to have as near normal life as possible. Where at the moment, okay, they listen but they, it tends to give you the impression they put that to one side. The big things, yes, they’re quite happy to deal with. The smaller things, they don’t seem to want to consider it’s their duty to try and help with. But I think it would help considerably if it was a little bit more individually considered rather than a specific plan by let’s say the social service. There’s got to be a little bit more flexibility in that.
 

Eric gets up early, goes to bed late and is ‘on the go through the day,’ with only the occasional rest.

Eric gets up early, goes to bed late and is ‘on the go through the day,’ with only the occasional rest.

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Because I tend to find I’m up at half past 6, I don’t get to bed till 11, and I’m on the go through the day completely. Not every day. Okay, sometimes say over a weekend I will take advantage of it being say a Sunday and we’ll probably watch a film on the television, something like that. So I do get a rest like that. 

But you are, you do tend to be doing something all the time. Things like decorating, you can’t do the same, because you can’t just clear a room and get on with it. You have to get people in and do it. So additional costs in that respect. The gardening I still do, but there again my wife will come out in the garden in her power chair and give me orders what to do and what not to do. But I mean I do enjoy being out there and it’s a little bit of an escape even though my wife might be there. But she just enjoys being out in the fresh air as well. 
 

Eric and his wife both feel frustrated that they can’t have a normal physical relationship anymore. They have to approach things differently now.

Eric and his wife both feel frustrated that they can’t have a normal physical relationship anymore. They have to approach things differently now.

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I wondered if you would mind talking about this. If you do, please don’t feel you have to. But I wondered if you could say something about what effect it’s all had on the kind of physically intimate side of your relationship together.

As regards that, it’s virtually non-existent. As my wife has deteriorated it’s been more and more difficult to have any physical relationship. And it’s not so easy to give somebody a cuddle or anything like that quite the same when they’re in a wheelchair. It can be done but it’s not quite the same. So, yes, it’s nothing like it was before. And my wife understands that to a degree, because these are limitations of circumstances.

And how do you feel about it?

I feel deprived. Well, my wife feels deprived as well. Again I feel frustrated in the sense you, you can’t have a normal relationship. A normal couple do things together and, it’s just natural to do these sort of things. Where now you’ve just got to cope with not being able to do it. But you just do as much as you can when you can. But it, this is why I say sort of like the caring part, being a carer is sort of 75 per cent and the husband side is 25 per cent. And, yes, yes, it’s a big, it’s a big chunk of your lifestyle taken out and you’ve got no control over it. Which happens to, with a lot of things, you know, you’ve got no control over that. And yet you could have if things were normal. It’s just you have to approach things totally differently and think of ways in which you can get something out of it. Is that done sufficiently?
 

Eric’s wife has slowly got worse and she is now fully reliant on him, and on paid carers.

Eric’s wife has slowly got worse and she is now fully reliant on him, and on paid carers.

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My wife can now no longer virtually do anything for herself, apart from occasionally at lunchtimes she can manage to feed herself then. But I have to sort of probably put a sandwich or something in to her hand so she can put it to her mouth. So this also makes it difficult if we want to go out for say a meal at any time. I can’t enjoy it by sitting and having my meal. I’ve got to be up and, or turning, giving my wife her food as well as trying to have my own. So it, it does get quite difficult. 

Then at, at home there’s not much time to do anything. By the time we’ve got my wife ready, and she normally has a rest on the bed in the morning, it’s gone 10 o’clock. I then, I get her up about half past 12, 1 o’clock. And if it’s not a nice day she doesn’t want to go out. If it’s a nice day she wants to go out and do things, so I can’t get on with doing things around the house quite so much. Then there’s all the things like the normal household things, washing and ironing, and, things like cleaning. So I have to deal with that at the moment, although we have now applied to the social services to try and get some more care, and at the moment waiting for a decision on that. 

I do find it very, very difficult, especially seeing somebody you love and you’ve been with for a long time just slowly deteriorating. With having looked after my grandchildren, seeing them grow up from babies, developing, learning new tasks and everything. Where with my wife, it’s just the opposite. And it’s now getting to the stage where she’s now fully reliant on me. 
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