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Life-changing injuries

Support after acquired disability from carers and helpers

People varied in the level of care they needed when they returned home from hospital or rehabilitation. Some had paid carers while others were cared for by family members such as parents or partners (informal carers). Informal carers could receive Carer’s Allowance. Some people regained independence while others continued to need care and support.
 
Carers helped people with a variety of things, including housekeeping, shopping, cleaning, cooking, doing physiotherapy exercises, driving, general tasks, like lifting and carrying things, and ensuring the person was safe. Some people needed personal care with toileting, washing and dressing. Carers also helped to deal with legal and official processes, e.g. communicating with solicitors and banks on the person’s behalf. Another important part of caring was psychological support. Bill said that his wife “just being there” was important. A few people could become angry or say socially inappropriate things, and informal carers talked about monitoring and managing unreasonable behaviour.
 

Nick Z explains what his helpers do for him, from dressing him to helping him with toileting. He...

Nick Z explains what his helpers do for him, from dressing him to helping him with toileting. He...

Age at interview: 49
Sex: Male
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So I have a helper who helps me get dressed. Well, helps me with my bowel management routine and with my washing and dressing in the morning, and with my hand and leg exercises, and with my going to bed in the evening.
 
Are there any sort of difficulties with having your helpers living in the house?
 
Yes. I mean it’s obviously very intrusive, and you sacrifice quite a lot of privacy, not just of your own, but of your family’s as well. So, you know, I have somebody living in, so there’s somebody around 24 hours a day and as I say I need to, I need help in the morning, so from when I wake up until I’m up and about in my wheelchair, which is usually about two and a half hours, three hours. And my, my family are around for part of that time, so there’s, you know, an extra person involved. And then again at night, and less intrusive during the day. But, you know, if I go out at all, I need, I still need help. So, you know, whether it is pushing round the park – although I wheel myself in my chair, my carer needs to come with me in case I fall over, or, you know, get too tired. And obviously if I’m going out in the car, I need to get wheeled into the car and they need to drive. So yes, it’s exceedingly important that you get on well with your carers. And if you don’t you probably need to change them sooner rather than later.
 
And as for the bowels that’s you can train your bowel, so that it evacuates once a day. So typically that involves the use of a suppository. So you have to insert a suppository into your rectum. So if you can you do that yourself, if you can’t you have to get a carer to do that. And then typically 40 minutes later you can, if you’re lucky your bowel will evacuate spontaneously, so hopefully you will be sitting on a commode or over the loo on a, on a commode chair. Or if not, you’re lying on the bed and you might need digital stimulation and evacuation, which is when your carer has to stick their finger up your rectum to evacuate your faeces. So it’s all pretty unpleasant stuff, but again it’s something that you get used to. So as I say that’s something that everyone with spinal cord injury has to get used to.

 

 
Some people directly employed formal carers using Direct Payments (see ‘Benefits and concessions’). They advertised the position, or contacted care agencies, and interviewed and appointed their carers or helpers. Others had carers organised and funded by their primary care trust or local authority. Some had several formal carers on rotating shifts. One person was made a ward of court and his care was organised by an agency.
 

Rather than getting them just to do things for him, Simon used his carers as a ‘resource’ to help...

Rather than getting them just to do things for him, Simon used his carers as a ‘resource’ to help...

Age at interview: 42
Sex: Male
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Did you have a personal carer, or an assistant at the time?
 
I did at first, yeah. When I first I first got out, I had 12 hour day support and then 12 hour overnight support that was shared with others in the area. Because I kind of knew that independence was achievable, I used them as a resource rather than people that I was going to live with permanently. So I employed young students, working their way through university, who wanted a job for a year. Told them that I was never going to need them always and that they were there to help me get independent not there to do stuff for me. So they were a resource...And I got on great with them. I was 25, they were 20, 18 whatever. So we were fairly, both fairly young. And the relationship worked quite well. But they were not something that I was going to use always. So they were there to pick me up when I fell rather than just doing stuff for me. And I suppose I got rid of them about… probably around the three year’s post injury mark, which I’m glad I did, because I don’t have to rely upon anybody now. 
 
And it is a model that worked out fairly well. It was kind of safety first. I fell on the floor a lot, when I was first learning to get in the car and transfer and they would pick me up. You know, help me cook dinner, do the cleaning, all that kind of stuff and eventually over time, I got all that back. So, and I only now have a cleaner now once a week, so I’m quite, but then again everyone has a cleaner if they’re working a lot, so it’s fairly normal. I can kind of write that one off. I’m quite a stubborn character and I want to do everything myself.
 
So, yeah they were there, they were, they were a good kind of, they were a good transitional phase to go through, rather than discharging home with no care. I have no idea what would have happened then. But I was far less able, far less able those days than I am now. Far less organised. Now I’m quite disciplined about what I need to do and what not to do. So I’m a very different person to seventeen years ago. Both in terms of just generally getting older and also about how I approach life and how I approach my disability. And then working in this kind of field, my life’s become my job and vice versa. 

 

 

Jamie has had the same carer for nine years. He says it is important that carers treat you safely.

Jamie has had the same carer for nine years. He says it is important that carers treat you safely.

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How did you go about finding them?
 
Well initially they actually responded to an advert in the paper and I chose them. I had a guy called [man’s name] I’ve had for nine years. And I’ve had [man’s name] as well for eight years. 
 
And you know for people who are looking for someone to look after them like you have? What would you tell them is important to look for?
 
Make sure that they are safe and that they treat you, treat you safely and, and are responsible, that’s responsible sorry. 
 
That’s okay.
 
Responsible, safe, caring. I wouldn’t really say that. These guys are, in their own little world, caring. Oh yes.

 

 
A problem with agency carers was a lack of consistency in staff. It could be time consuming trying to maintain appropriate levels of care.
 

Dave employs someone he can call on at anytime. He does not use a care agency because he could...

Dave employs someone he can call on at anytime. He does not use a care agency because he could...

Age at interview: 31
Sex: Male
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Do you employ a carer all day?
 
I do. But I don’t need help all day, but there’s just somebody there. And that’s the way I choose to do it rather than having somebody come in to my house from an agency twice a day, when you could have two different people coming in and four different people in a week and ten different people in a month. And I much prefer the consistency and the control that I get by having somebody on call all day.
 
Is that what you found when you tried an agency? Did you get different people coming?
 
Yes, yes, and that’s certainly a frustration with agencies. And different people have varying degrees of familiarity with how you like things done, how things should be done. So, you know, with changing people you’re for ever explaining how things are done and requesting how you would like things done. And a degree of consistency in carers is very important. Well, I certainly find. But at the same time they, an amount of change is good as well. You don’t want somebody the same all the time.
 
So how do you manage that? Do you employ somebody for a while?
 
Yes, I manage it myself. I alternate between two carers over time. And it’ll be on a couple of weekly basis.
 
So you might have one person one week and somebody else another week?
 
Yes.
 
Or different days or…?
 
No, it’ll always be for a period of time longer than a week. So it’ll tend to be a two-week
rotation.
 
So you’d have the same two people coming two weeks, both of them?
 
Yes. So two weeks one person, then another person for two weeks, and then two weeks back to the original person.
 
And from your experience, how have you gone about finding somebody suitable?
 

It certainly can be difficult. There are a couple of websites that connect carers and care users. Otherwise personal recommendations. Yes, so that’s how, how I’ve gone about it. 

Formal carers sometimes lived in the family home. This could be intrusive, but it allowed people to keep their relationships separate. This was important because, as Simon said, having his wife as his carer “put quite a strain” on their relationship.
 

It was important for Nick Z and his wife to keep their relationship as normal as possible, so he...

It was important for Nick Z and his wife to keep their relationship as normal as possible, so he...

Age at interview: 49
Sex: Male
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My wife is my wife. She’s not my carer or my GP. And I think we made a very conscious decision to have it that way. And I think it’s certainly for my relationship, trying to retain as much as you can of the normal relationship. Certainly with my wife I think it’s been very important to do that. So no, I have somebody who’s my GP. And my wife does not get involved with my care, especially not my bowel or my bladder management.
 
And why is that?
 
Because I think… well first of all she doesn’t want to. I mean it’s not very pleasant. And I think it’s… she doesn’t want her relationship to be one whereby I am dependent on her, and she feels responsible for looking after me 24 hours a day, which I think is the way both of us prefer it.

 

It could be hard to get used to partners becoming carers. Rob said, “It’s difficult. She’s my wife and, when I was first injured and I couldn’t really do a lot for myself, it was almost like she’d become my mum” but he would not want “an outside person” caring for him.
 

Rob’s wife knows how much information he needs to know about the route when they are out. Other...

Rob’s wife knows how much information he needs to know about the route when they are out. Other...

Age at interview: 24
Sex: Male
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And it’s not massively complicated, but obviously things are a lot more fluent and easy if I’ve got someone who knows my routine and knows exactly what I need and what to look out for. So like when I’m with Em and I’m walking about like I’ll hold onto her arm. I’ll have my long cane with me and I’ll tap away to feel the gradient and stuff like that, and make sure I’m not walking into lamp posts, but she’ll be like “Oh there’s a kerb coming up, like kerb down, walk across the road, like kerb on the way up”. And she’ll know exactly what obstacles and dangers to like flag up with me and stuff like that. Some people can, can go like and not tell me anything and other people can go massively the other way and just be like every speck of dust on the ground. “Jesus there’s a leaf in front of you” and you know, like that' “I don’t care if there’s a leaf in front of me”. “Oh yeah, there’s a stick coming up” and I’m thinking, Jesus is there a branch across the road or something? And I step on it and it’s like the size of my finger.
 
A twig.
 
Yeah, it’s like this little twig that snaps underneath my feet, and I’m like “You’re warning me about that? Are you crazy?” And yeah, it’s, I don’t know it’s just a learning process for everyone.

 

In general, people had mixed feelings about needing care. On one hand, it enabled them to re-establish their lives after injury and regain independence. But, for some, it felt like they no longer had time on their own. They thought they would always need some level of help and support, and, as Rob said, this “gets quite difficult because you need your own space”.
 

Since his brain injury he's had some seizures. He can't go out on his own in case he has another...

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Since his brain injury he's had some seizures. He can't go out on his own in case he has another...

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Yeah. I had seizures, you know, I’ve got a broken finger that’s because of coming down one day I had a seizure and I kind of had the seizure coming down the stairs and I broke my finger coming downstairs, bumping down stairs, yeah, I’ve had a ruck. And I’ve had about six to eight epileptic fits, seizures. And it’s not nice; it’s going to happen you know. Whether it is just because of alcohol and medication it’s going to happen. I think it’s going to happen for the rest of my life, which I find frustrated, you know, that my life has changed and I’ve got to, you know, struggle with that. So, but, you know, it’s not nice having, you know, having a carer, which is [wife’s name] is caring for me. She’s with me all day, you know, every day. I mean I do, do small things. I can’t go out and do something on my own for the whole day even just in case I have the fit. You know, it’s not nice yeah. 

Life post-injury was also an adjustment for family members who became carers. Learning to care for the injured person was often “one big learning curve”, but some of the people’s partners had a nursing background which helped. As well as caring for the injured people, carers sometimes had to look after others too, including children and elderly parents. Caring could have an emotional and physical impact on carers, some of whom had their own physical and psychological problems. Some felt they lacked support. For instance, a woman whose husband had a brain injury, described herself as “his wife, his maid and his secretary all rolled into one”. She felt there should be more support for carers like her. Other couples described supporting each other throughout the experience of injury and beyond.
For more see 'Relationships with partners'.

Last reviewed October 2015.
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