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Multiple Sclerosis: friends & family experiences

Getting help with care needs for MS

Multiple Sclerosis (MS) is usually characterised by periods of relapse and remission but for some people (around 15 %) the type of MS that they have is more progressive and debilitating. Some people may need support with everyday activities, for example they may be less mobile, need support with shopping, cooking and other housework tasks. If their condition has relapsed or deteriorated they may need extra support with personal care like washing, dressing, eating and using the toilet. Relatives and friends often provide this support and for some it can have a significant impact on their own health and quality of life. This is particularly so if the person they support needs significant or total care. In these circumstances, local authority social services or NHS primary care services must provide an assessment to help determine what the care needs are and how the family carer can be supported. Some of the services that could be provided may be charged for.

Some people reported that the person they cared for had received good care from care workers at home, though it was sometimes ‘limited.’ Alice thought the paid carers looking after her friend were good at practical care but often neglected emotional and psychological care; she was surprised and pleased one day to find they’d put music on that she thought he’d like. Some people said care workers weren’t always reliable or weren’t allowed to lift.

When the regular care workers were not available and relief staff came in to look after his wife, Eric said they would sometimes do irritating things like leave the hoist in the wrong position, or leave bottles of lotion where they could easily spill and stain sheets or pillows. Mully found that what she called the ‘A team’ of nurses who visited her husband daily for 2 weeks after he came out of hospital were ‘super-efficient.’ The ‘general’ care workers who followed were well-intentioned but untrained and inexperienced.

 

Care workers were so unsure about how to manage her husband’s suprapubic catheter that Mully decided to learn how to look after it herself.

Care workers were so unsure about how to manage her husband’s suprapubic catheter that Mully decided to learn how to look after it herself.

Age at interview: 63
Sex: Female
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Charles had just come back from the two month stay in hospital and he was still very, very ill and very helpless. He’s actually got a lot more strength in himself since then and he can sit up. Could he couldn’t even sit up unsupported when he came home and we had the nursing not the not the community nurses, but the carer, you know, the carers who come in two or three times a day to do things. And they started coming in three times a day and I could actually see some of the younger carers finding it difficult to deal with this suprapubic catheter because they hadn’t done it. It’s not something that happens to everybody, thank goodness, and so they were having problems doing it and I thought, “Well, I’ll have to get to grips with it.” Because it was becoming, we stopped the lunch time visits but then it was becoming really difficult because after you get the, what they call the A team coming in for two weeks after somebody is discharged from hospital. They are very superefficient and they come on the nose. They say they’re coming at six o’clock in the morning and they’re there at six o’clock in the morning. They say they’re coming at nine at night, they come at nine at night. They come, breeze in, you give them a coffee, they do their job and they leave. But then, when you get general carers who follow on and these are the ones you’re paying for, they become, they’re just normal people untrained with a love of people and but they’d, slap happy and I just thought, “I have to get to grips with this.” Because it just didn’t look clean enough after they’d left and I said to Charles, “Well, what do you think?” And he said, “I’m fed up because I get up at six waiting for them and they don’t get here until eleven and then I, they turn up at four to put me to bed.” He said, “I don’t want them.”
 

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.

Age at interview: 65
Sex: Male
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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.
Tony was very satisfied with the daily care from the social services. He thought they sometimes suffered from management problems but had no complaints about the ‘grassroots’ workers. Over the years he needed extra help and had built what he called a ‘support group’ of people who would sit with his wife while he went shopping or played golf, and who would help with jobs in the garden:
 

Tony describes how he has had to work at getting help and support to care for his wife.

Tony describes how he has had to work at getting help and support to care for his wife.

Age at interview: 72
Sex: Male
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I think also as, as a carer you have to build up a support group around you, because you can’t do everything on your own. You have to accept you can’t do everything on your own. And after a time the Social Services were brought in. That was an interesting state, because from the, the Royal Air Force, from the service coming into civilian life, it’s difficult to slot in to where you are. I mean it was, I had to go around this local area to find a doctor for example which had access at those day, in those days. So I was, I just went to the little chemist up the road and said, “Tell me the doctors around here.” And I went round to each of them. There was only one of those five doctors that had wheelchair access. So that was the one we went to. They’ve now moved to a large, much larger organisation which is, has good access. But it, that’s the sort of thing that you sort of come across as you, as you move along.

So this support group, I, first of all I had trouble getting to the NHS. Getting Social Services interested was also a bit of a problem. Because you come into the, into the area and you go to the end of the list. Because of course they have such a large list of people it takes a long time to get, work up, work up the list. Anyway eventually we did. And I was as-, [name]-, my wife was assessed and it was decided that she needed some sort of care.

And that’s developed now so that she has morning care to get her up and to get her dressed and washed and so forth and evening care to get her into bed and showered and so f-, and so on. Because of health and safety rules, I have to be around the whole time as well. Because when she’s moved by a hoist, we have a hoist supplied, that’s good, the Social Services do provide a lot of equipment, but when she’s moved by hoist I have to be there because the carer is not supposed to do it on her own. So that sort of is an effect on me as a carer. I have to be there.

I found that it was getting difficult to do things in the garden. I heard of a chap who was, had become redundant and was going to set up a little gardening thing, so I said, “Come and do me an hour a week.” And so he does. And he still comes and he just helps doing things around the garden, which is part of the support. I wanted to sort of have a fixed time I could go and do shopping for example. So I got in touch with Crossroads. A fine organisation, you’ve probably heard of them. And they again came to assess me. And they provided a, someone who, to come just to provide me with two hours or three hours one day per week so I could guarantee going to have some time to do shopping and any other, any other little things that need to be done.

Being aircrew, I had, I’d been a pilot, and when you reach retirement age there is a, I’d already joined actually, a thing called an Air Experience Flight. You’d have the old grey guys in those days who used to go and fly the little aeroplanes, Chipmunks, Bulldogs, that sort of thing, to fly ATC cadets, CCF cadets, to give them air experience, 20 minutes’ flight. And that was an opportunity I took up down at a place called Colerne in the early days before the early days of the diagnosis. In those days I could leave her and go and do the flying and then come back again. It came to the stage when I realised I couldn’t just, I couldn’t just leave her and go off. And that required a set period of about six or seven hours. And I again approached Crossroads and said, “Look, do you think you could provide someone on a Sunday morning or a Saturday morning?” so I could go and do this, this flying down at Colerne. And they hummed and haahed for a bit and then they came up with a lady, a wonderful lady who said, “Yes” she was able, as a Crossroads employee this is, to come on a Sunday morning. And so I used to leave about 8 o’clock, she’d come in about 8 o’clock, I’d leave at 8 o’clock and be back by 2 o’clock. And she would come and sit with my wife and give her lunch and that sort of thing for that period. That gave me the opportunity of going and doing the morning wave of a flying sort of a session with these cadets.

That’s what I mean by setting up a support group. You have to actually work at it. It’s not easy, you have to actually work at it. So I now have this, I don’t do the flying anymore, so that’s gone, but, but that same lady still comes in on a Thursday at 9 o’clock and stays through to 3 o’clock. She doesn’t now work for Crossroads. She’s decided to go independent, so I employ her independently. So I have to employ her so that I can now go off [laugh] and play golf. So I fix myself a, again a period each week where I can now go off and play golf. That costs money. It costs about £70 every Thursday. It’s not cheap. But it’s what you have to do. You have to do these things to make your life... So I now have a routine during the week with a support group around me who will help my situation.
A few people said their relative had received care of a very poor standard. Anita recalls that, many years ago, her mother received ‘appalling’ and ‘totally unreliable’ care at home:
 

Anita found it upsetting that many years ago people were looking after her mum who were not ‘looking out for her best care’ and whom she ‘couldn’t trust’.

Anita found it upsetting that many years ago people were looking after her mum who were not ‘looking out for her best care’ and whom she ‘couldn’t trust’.

Age at interview: 37
Sex: Female
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I think what happened was there was just a point where I was working full-time, I was working in London, my mum was needing more and more care. I don’t remember the process we went through to get that. I remember it being there. And I remember it progressing. Then I remember it being appalling I can remember things like people were supposed to come in and cook my mum’s sort of dinner and they had to sort of sign a book to say when they had been and I would get there and it would be five o’clock and they’d say that that they’d stayed till six o’clock and they weren’t, they weren’t there. And that happened a lot.

We had people that abused the use of the phone. There was a time when my mum had a smack print on her backside and, there were times when actually she was left up all night because the care didn’t sort of arrive, so this was later on when as I say, that they started picking up more of the role. So you never feel completely relaxed. You never feel completely that it’s all going to work. You feel incredibly guilty, so you might as, you’re sitting there wondering if she’s been put to bed so you may as well just drive round and put her to bed. 

So I think the care was totally unreliable Upsetting actually. I think what was upsetting about it was that you do it for somebody because you really want them to get the best care and you love them and at times that meant walking away when you felt so, you know, you’re about to pick somebody off the floor who’s sobbing, who’s soiled themselves and you’re trying to sort of sort all of that out. And you have to walk away because, you know, you don’t ever want to show that frustration to them. But you have to, you walk away and you might sort of slap a wall or just cry or go out in the garden and shout and then you come back in and you do it. But you do it and you do it because you want to give the best care and that’s what they deserve and it’s your mum and, you know, that’s what you want to, that what she deserves. You know, she brought you into this world and, you know, you, you should be looking after her. And there she was as a result of me really not, not being around as much as I needed to be. She was basically with people that didn’t really want to be doing it, hadn’t really been trained were lying, were not looking out for her best care, were you know, I couldn’t trust. And you’re trusting somebody so vulnerable and so precious to a complete stranger, of, many different strangers coming in all of the time. And that’s, yeah, that’s really, really, really upsetting. 
Sometimes the need for care at home increased over the years. For John Z’s wife it began with visits from the district nurse to give her an injection. As her condition got worse she needed visits to attend to her urinary catheter, to give enemas and, eventually, daily help with washing, dressing and getting out of bed. After eight years John could no longer look after her at home, and she moved to a nearby nursing home. John visits her every day and is very satisfied with the care there. 

Occasionally, there was conflict with care providers. Paul Z had a series of problems which ended with him making a formal complaint about the quality of his wife’s care. He was pleased that his complaint was upheld, but the experience was very stressful and exasperating. Things improved and the paid carers were willing to do more when his wife became eligible for NHS ‘continuing care’ at home:
 

Paul thinks that the bureaucracy of care management does not always treat his wife as an individual.

Paul thinks that the bureaucracy of care management does not always treat his wife as an individual.

Age at interview: 56
Sex: Male
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We’ve had problems with care companies, and they say, ‘Oh, we can’t do this, we can’t do that…’ And my question is, ‘Why?’ Silly little incident was my wife’s arm had dropped down to one side. And we asked could they lift it up when it drops down? We got told, ‘It’s manual handling.’ What??! So, what I actually did, then, was start to raise questions. What we actually ended up doing was putting in a formal complaint because we got frustrated and weren’t getting anywhere.

We went through the formal complaints procedure. It was hard work. But, when we had the independent person to come and look at the complaint, at the end of the interview [and] she said, ‘My God you guys have been through it.’ A fortnight later we got a letter from the local authority saying every single count that we had raised had been upheld. We shouldn’t have to go through that. And by more and more of us getting on board and voicing it… I know there’s a Carers Association. They do a good job. But, they tell us with adaptations etc, everybody’s an individual. No, I’ll change that. What they tell me…with MS everybody's an individual and everything…that people… MS affects people differently, different people in different ways. However, when you get into the bureaucracy-and it’s not the careworker, it’s not the social worker that I…they’re tied by this bureaucracy, meeting targets etc.- what you actually get there is you’re not treated as an individual in that respect. MS affects you individually. Everybody’s different with it. Yet they try and put you into a box. And we argue, we’re not in a box. What’s right for you might be wrong for me. And the same goes with carers.

And so don’t be afraid. I’ve worked through frustration. I‘ve had to get to a point where I got so frustrated it’s come out in like, ‘I’m making a formal complaint.’ I get no satisfaction in saying I want a formal complaint because when I actually got the letter through from the authority saying all had been upheld, I didn’t realise how stressed I was, I just burst into tears and I can still feel myself filling up a little bit there. Because you’ve won, but you shouldn’t have to win. It’s not about winning; it’s about getting what you’re entitled to, what the person that you’re caring for is entitled for. And don’t bottle things, talk to your close members of your family.
People had different approaches to forming relationships with the care workers who came into their home. Tony and Eric both deliberately keep good relations with them. Sarah Z didn’t like the ‘total invasion of privacy’ which came with having care at home for her husband. She distanced herself from the care workers to some extent. Alice tries not to make bonds with them, although she thinks most of them are fantastic, especially at giving physical care which she knows she could not do.
 

Sarah relied on a system of written communication with care workers to keep track of what everybody was doing, but when they were in the house she tried to keep some private space.

Sarah relied on a system of written communication with care workers to keep track of what everybody was doing, but when they were in the house she tried to keep some private space.

Age at interview: 59
Sex: Female
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And I felt increasingly very controlling in as much as the carers who were in and out probably now three or four times a day, medication, wash and dress, come back give lunch, come back do tea, come back go to bed. It was this total invasion of any privacy that I might have, the whole of the downstairs of the house was fair game for them, they had total right to go anywhere they wished to go downstairs. We’d had the downstairs cloakroom changed into a wet room they’d be in and out the kitchen. I found that I had got two places to go, either upstairs or in the garden, they were the only two places and if, as they did, the carers called upstairs I would not answer them because I felt that if I was upstairs that was my right to say, you do what you have to do but it doesn’t have to involve me. 

We had a massive documentation system whereby they would write down in a book, I would write down in the book, we kept in contact, I didn’t isolate myself but everything had to be written down so that we all had a record of what everybody else was thinking and doing. We had medical deliveries come in, we had people popping in and out, we had a key, one of those key safes on the door and the key would go missing, the key would be left on the inside and the next lot of carers couldn’t come in. I felt as though it was just total invasion but quite rightly so because I wasn’t giving up work, I couldn’t give up work it was my sanity saver but also the place where I could go and hide and not be here, which is an awful admission but…
 
 

Alice feels that she has an awkward relationship with her friend’s care workers, who don’t know the history of their relationship.

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Alice feels that she has an awkward relationship with her friend’s care workers, who don’t know the history of their relationship.

Age at interview: 35
Sex: Female
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It’s really awkward. I try not to bond with the carers deliberately because they obviously change. I think they think I’m the boss. I don’t think they particularly like me or like that. They’re all very good at the practical nature of the job. There are some who are particularly good because I think they tend they realise he’s a youngish man and they’ll put on, sometimes I’ll go in and he’s watching, you know, rock music and rap music and I’m thinking, “Yes, because that’s what he would have watched. That’s what he would have watched.”

And I put up photos of him as an able bodied man around the room. There’s also loads of pictures of me around the room, which is weird [laughs]. So we do have an awkward relationship. I don’t try and get to know them as people, which I know I should, but I haven’t got the emotional energy to invest in them. I’m extremely grateful for what they do and most of the time they’re very good. Some of the time, I think they could do more but it’s a hard job and it can be a boring job and scary job and they’re presumably not paid very well to do it.

I think they obviously get very tired and they get, particularly the night carer I think he gets massively tired and he doesn’t see his family much. He does ridiculous shifts every day, and has done for years. I think they think I rock up, I, you know, I arrive, I talk to him, I laugh, I put music on, I’ll readjust his position, put the TV on, do all the nice stuff and go. And they think, “Well, what was that about? What’s she done that’s been useful?”

I don’t think they underst.., because they never knew us as a couple or as or ever heard him say anything about me, they just, I don’t think they get who we are. I think I’m a disruption. I think I am yeah, I get in the way of their day, whereas I hope that I’m the highlight of his day. I don’t know that but I don’t know how they interact with him when I’m not there. I hope they do. I think they’re very fond of him. He’s got a face that’s very lovable, thankfully, you know, wide-eyed, very sweet face and I think the carers do seem to be very fond of him, thankfully. In fact, two of the carers have had a baby together [laughs]. And I said to him, you know, because of him he’s helped to create a life and he’s very chuffed about that.

Having met having met each other through.

Yes.

Through their caring work there?

[laughs]

[laughs]

Better not ask too many questions.

[laughs]

But I’m, you know, I’m, if he’s not in the right position or if he looks uncomfortable, I’m allowed to say something about that. And, hopefully, I do it in a diplomatic way because I know their job is incredibly difficult. God, I know that, of course of course I do but they can’t give him what I can and that’s, you know, we are a team but I can’t bond with them. I have to be, I have to have some distance from them because then I’ll get upset once they, you know, once they move on.
Funding arrangements for care at home varied widely. Alice’s friend received 24 hour care at home, in what she said was almost like an intensive care unit, fully funded by the Primary Care Trust. This was constantly under review, with many interviews to assess his needs. However, Eric had to pay for nearly all his wife’s care at home. 

Others got financial support from the local authority, sometimes under the ‘direct payment’ system where they received money from the authority which they used to pay the care provider directly. Tony had sometimes found this useful. Paul Z had rejected the offer of using this system, because he wanted the lines of responsibility for care provision to remain very clear.
 

Tony was unsure at first about the system of direct payment. But he has found that paying for care services himself, with money supplied by the council, gives him more flexibility.

Tony was unsure at first about the system of direct payment. But he has found that paying for care services himself, with money supplied by the council, gives him more flexibility.

Age at interview: 72
Sex: Male
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A while back you talked about direct payments.

Yes.

Could you talk in a bit more detail about what that is?

Yes, now that’s an interesting one as well. We were approached last, last year by one of the, the ladies from [county council], who are the, who, who, who support the, our arrangements. And they have a, had a target for, I think by March next year of 30 per cent of people being on direct payments. And they came to see me and they, there was a lot of influential talk and so forth. And I said I was not too sure about this and so forth. But eventually, I’d obviously been targeted, so, “This one’s a good, good one...” So eventually I said, “Okay, I’ll give it a go and see how it works.” 

And so we have a bag of money now, which is supplied every month, and we pay the expenses. At first I thought, “This is daft.” And indeed in a funny, in some ways it is daft. Because whereas before, the care, the agency put their invoice through to the county council and the county council then paid the invoice money to the, and I, all we did was receive the service, now of course what happens is the county council gives us money into a bank account, the agency supply an invoice to us and we then supply the money to them. 

So it appears that we have, nobody has moved, done anything different in the county council, exactly the same person working there, exactly the same person working in the care agency. I’ve been introduced in the middle of it. I don’t get paid or anything like that. And they just started using me. Okay, so it is useful in that I can, if I decide to go on holiday in France I can actually get a proper invoice and, and pay the bill, so to speak, and I can get care over there. So it is helpful. Rather than going to the Social Services and saying, “I’m going to France. Can I send you the bill?” and that sort of stuff, I can deal with it directly. 

But it is an interesting manifestation. Particularly since I know that when I go on these four weeks’ respite that I’ve told I, I go on, I have to pay a large proportion of that, you know, I have to pay. But they do pay something towards it, so it’s fair enough. But they, what they do is, they bring a care lady in, one of the carers we know about, to live in whilst I’m away. So I get someone coming in to live in. And they still have to, because of so-, health and safety they still have to provide the other lady daily as they normally would. So then the bill comes in, and I know how much I’m worth. I’m worth over £1000 a week because that’s what they pay for this person who comes in to live with me. So I know how much I’m worth. And if you work that out throughout the, that’s what a carer is worth. And I don’t get Carer’s Allowance [laugh]. Ooh, it rankles, it rankles!

Which isn’t much anyway.

That doesn’t matter. It’s the principle of the thing. It’s the, it’s just the acknowledgement that there is a, you know, there is work being done, if you like. So does that help you with the direct payments?

Yes. Is there, is there a fixed amount of money paid into that bank account which represents an equally fixed amount of outgoings?

Yes.

So there’s no accounting to be done?

No, because the daily ca-, no, what I had to do, I had to set up a separate bank account. So we just use the one bank account for this partic-, 

So it’s quite open and obvious. And then when I had the separate invoice from the French care agency, I just paid it. Obviously I did a, exchange into euros and so forth, but that is then accounted for as well. And there will be, in not very long, the first annual sort of cheque, so to speak. And I have the bills, I have the amount of money paying in, I have the invoices, and it’s just a reconciliation really. I mean it’s no problem to me, but I can see for other people it might be a little bit of a difficulty. But at the moment I’ve had, there was a little bit of a hiccup at the beginning, there was bound to be, which was resolved after a time, and no problem at all. But it’s just a simple transaction.
 

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.

Age at interview: 65
Sex: Male
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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.
 

Norma received funding from the Independent Living Fund to enable someone to come during the day to read to her son or take him out.

Norma received funding from the Independent Living Fund to enable someone to come during the day to read to her son or take him out.

Age at interview: 70
Sex: Female
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Shane deteriorated really fast that he could do absolutely nothing for himself and I started thinking the house is not suitable for him, what am I going to do. I thought I’m going to ring the council and whoever picks up the phone I’m going to explain to them my situation and ask them to direct me to whoever or wherever would be appropriate. 

So I rang the, I rang [council name] and I was put through to social workers, I spoke to them and then I was sent a social worker just to sort out the care he would have needed. But by then I had worked, because I was actually working and looking after him I had, I already known how many hours would be appropriate for him. When she came I told her and they said, ‘Oh, he’s got to go on a waiting list.’ I said, ‘That’s impossible he cannot go on a waiting list because I’m working and I need someone to be with him during the day, feed him because he can do nothing.’ However, he was not placed on a waiting list. I got the care that was appropriate then. 

That was fine, however I thought to myself that he needed extra care Again, I overheard in the supermarket about the Independent Living Fund and I’m thinking God is really on my side. So I thought I am going to approach this lady that I don’t know and just explain my problems to her and that was what I did. With this information I was able to get extra funding to have someone come in during the day to read to him, and if he wanted to go out they would take him out in his wheelchair and put him to bed at night and for that I was grateful. 

However, by 2003 he really, really deteriorated but not to the extent that he could not get out of bed because that was the routine I set for him that he would be up at 9.00 in the morning for his carers to give him personal care, have his breakfast, be fed and whatever.
Even with regular help, caring for a relative with MS at home can be time-consuming and exhausting. In these circumstances, the opportunity to have periodic breaks from caring was important and vital to some people. John X’s wife has had a few days respite at a local hostel. Robin’s wife was having respite time 3 or 4 times a year but this was no longer available. This is vital recuperation time for Robin who finds the physical effort of caring for his wife quite a burden. It is now under threat because of changes to funding. Tony has had a carers’ assessment and is granted four weeks respite each year.
 

Regular respite care has really mattered to Robin because it gives him temporary relief from the task of caring for his wife.

Regular respite care has really mattered to Robin because it gives him temporary relief from the task of caring for his wife.

Age at interview: 72
Sex: Male
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I have to do everything I do all the shopping do all the cooking, do all the laundry if you look in our kitchen you will find that there is no kettle out there because it would be dangerous for my wife to make herself a cup of tea. What we’ve got is a kind of urn, where you push a button on the top and hot water comes out of the spout and you pour that onto a teabag and even in my wife’s state can make herself a cup of tea if she wants to. Not that she does I generally speaking make it but yes I have cleaners in keep the place tidy not often enough unfortunately but... I do all the driving yes I do everything. I’m not complaining but it’s a burden and that’s why I’m so aggravated about respite care because respite care is really, really important. My wife can get away three or four times a year or has been able to get away three or four times a year, give me a break, which means quite literally I lie in bed till 11 ‘o’ clock in the morning sometimes which is wonderful, not worrying about what she’s up to, having to go and make her breakfast and bring it in bed and getting her in the bathroom and all that stuff.
Access to such ‘respite care’ is not always easy, though. Sarah Z became desperate for a break from caring for her husband. She felt that health and social care professionals responsible for her husband’s welfare did not acknowledge her needs as the main carer and she needed to change GP before she could get respite care. Several people expressed concern, even anger, at the MS Society’s decision to stop providing respite care through its own centres. Betty believed that the local authority was spending funds supposed to be ring-fenced for respite care on other things. In Jean’s area the local hospital which provided respite care has closed.
 

Sarah really wanted to spend some time alone in their home but her husband didn’t want to go away. Eventually, she achieved one week respite every three months.

Sarah really wanted to spend some time alone in their home but her husband didn’t want to go away. Eventually, she achieved one week respite every three months.

Age at interview: 59
Sex: Female
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When it got to the stage that not only he wouldn’t go out, he couldn’t go out I became desperate for respite and I think if there is one issue about all of this was that I felt that people’s sympathies, attitudes were all very positive towards my husband, all very caring and helpful; but my needs were not at any stage given any voice at all. When we got to the stage of getting carers in which became a necessity helping my husband as obviously working full time I wasn’t here to help him I would ask GPs, I would ask anyone who would stand still long enough to listen, if there was some way that my husband could spend some time not here. I could go away, I could take my son away but I would actually like some time here with my husband away and that was very, very difficult to achieve. It was achieved quite bad temperedly by my husband who didn’t want to go away. His GP, who was also my GP, was caught between two stools and in fact I moved GPs as a result of it. The stress I felt got heavier and larger. We achieved perhaps one week every three months. I found it really hard.
 

Betty talks about a ‘pot of gold’ that the council has to fund respite for carers. Her carers group put in a bid to administer the money in the hope of ensuring access to respite.

Betty talks about a ‘pot of gold’ that the council has to fund respite for carers. Her carers group put in a bid to administer the money in the hope of ensuring access to respite.

Age at interview: 58
Sex: Female
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What sort of services do you need now?

Right, what do I need now? A cure for MS would be nice! Services? I think there is supposed to be a pot of gold that every council was given to give carers respite. This pot of gold has been sitting in our council and lots of others for about a year. I know nobody in this borough, and we are a large borough, who has actually had any respite yet. The group I belong to we’ve actually put in a bid to run this pot of gold. But it seems to have shrunk a great deal from how much the central Government gave to how much the local council is saying is in the piggy bank. And I think this just goes on and on, more corruption, never mind. 
Sometimes personal factors affected opportunities for respite. Sarah’s husband was ‘bad-tempered’ about it; John K’s wife won’t go into respite care because she doesn’t want to be with other disabled people. John gets a break occasionally by going away on holiday by himself, for which he says people criticise him. Dave won’t look for respite because he says it wouldn’t be fair on his wife if he ‘left her in a home for a week while I went off on my own - it’s not the way we do things.’

Some people were so used to caring themselves that they found it difficult to let go while their relative was in respite care. Norma visited her son daily to feed him and get him ready for bed; Mully and her husband are ‘so closely bound together’ that she ‘starts to pine’ after a few days, so they take less respite than they are entitled to.

For a few people with advanced MS, long-term care in a nursing home or hospital became unavoidable. Both Kay’s brother and John’s wife live in a nursing home and are very well cared for. Patience’s husband went into a nursing home when he got a pressure sore that was difficult to treat at home. She decided to bring him back home when she felt that he wasn’t receiving good care. That led to a complex dispute over the funding of his care:
 

Patience got into a complex dispute over care and funding for her husband when, after nearly two years in a nursing home, she decided to care for him at home.

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Patience got into a complex dispute over care and funding for her husband when, after nearly two years in a nursing home, she decided to care for him at home.

Age at interview: 44
Sex: Female
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Then in 2005 he got a bed sore, which meant he had to stay in bed. I called the professional people in, which is the district nurses, and they said the best thing for him was to go into a nursing home. Well, the first time they treated the pressure sore. It started with him being in bed every six hours, I turned him every six hours and the sore was getting worse and they said to turn him every four hours and then every two hours. I was turning him on my own and then it became every hour, turning on my own. But then, I couldn’t cope so I said to them that I needed more help but the help they gave me had to come from social services, district nurses and the whole professional people package. They said, “Well, he needs to go in a nursing home.” We had a meeting on Monday and by Friday everything was ready. 

I did not want to take him there but because I was tired caring for him, I agreed with the professionals and what happened was I took him to the nursing home. This is in 2005, October and every day I went to visit him because he was wasting away. He had given up. Then in 2006 I had a letter from the nursing home about the health care which they said had moved onto social care. So, I asked who is going to pay for it and they said, well, you need to pay for his care. And I said, “No, I’m not paying for it.” So he had an assessment with social services. At that time, he went in to the nursing home with one sore and, at the time, they moved the package from health care to social care, he had three sores. So I said, “No.” So they did a financial assessment, which is means tested, and they said, well, we have to pay about two hundred and something pounds a week and I said, they must be joking. I will bring my husband home whatever it costs. I’d rather pay somebody that kind of money than paying the nursing home to kill my husband slowly.

So, I had to go back to social services and then nothing was done for six months. Then in 2007 I went to my MP and I explained the situation. He got hold of the local authorities and what they said to him was my husband had got complex issues but it takes a while to sort that out. It took almost a year before I could bring him home, which was in 2007, August. He went in 2005,October, and got back in 2007, August.

At this point, all the professional people wanted me to leave my husband in the nursing home because I said I want my husband home, everybody didn’t want to know. I even got a call from my GP because I was having a lot of issues with the district nurses because, my husband needed help with bowel management. They had to do the bowel management. He had a bedsore. I asked, “Who’s going to dress it?” and I thought they didn’t want to do the bowel management. The district nurses said, “No, it’s best for him to stay in the nursing home.” As he was wasting away, I went to my GP. I said, “Look, this is the situation. Please, I need your help.” He said he would speak to the district nurses and then I got a call the next day asking to come in and see him. He said, “Well.” He agreed what the district nurses said was right, that it was best for my husband, to stay in the nursing home. And I said to him, “Where there is a will there is a way. I’m bringing my husband home no matter what. I don’t care less.” 
(Also see ‘Being a ‘carer’’ and ‘Adaptations, aids and equipment for MS’).

Last reviewed March 2020.
Last updated July 2018.
 

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