James

Age at interview: 41

Brief Outline: James has been a carer for 20 years and likes his job. He helps Hayley with every aspect of her daily care, including catheter care. Hayley's catheter has made life easier for them both. In particular it has made travelling much less stressful.

Background: James is a full time carer. He cares for Hayley, who has spinal muscular atrophy. He is single. Ethnic background/nationality: White English/Irish.

More about me...

James has been a carer for 20 years. He is a self-employed carer and looks after Hayley who has spinal muscular atrophy. Every day he helps Hayley to wash, pass urine via her urethra (which she likes to do once each day), empty her bowels, get dressed, and up into a wheelchair. During the day he helps Hayley with her surapubic catheter and if necessary helps with the flip flow valve. He helps to keep it clean, changes the valve each week and makes sure the district nurse changes the catheter monthly. James also makes sure that Hayley gets the medicines she needs. He also prepares meals and takes Hayley out most days in the car.  

 

Before Hayley had her catheter, life was much more difficult for her and for James. When Hayley wanted to pass urine James had to help her onto a bed with a hoist, help her to undress, roll her onto a bedpan, and then dress her again and help her out of bed. That could take an hour. Thus having the catheter has made life easier for them both. In particular it has made travelling much less stressful. 

 

James had found the district nurses helpful, but he finds that many other health professionals cannot understand why he, a man, is a carer. They do not always listen to his point of view. James likes his work as a carer, though he finds it hard not being able to make plans in advance because Hayley’s condition may change suddenly. 

 

James, Hayley's carer, said that her catheter was 'a godsend'. Hayley can now drink normally....

 Really and truly since then it’s [catheter] been a God send because she [Hayley] can drink a decent amount of fluid. I mean she has to drink a decent amount of fluid, but it really works out brilliantly.

 

You know, there are some problems with it, I mean it’s not exactly all plain sailing. But without it, I just couldn’t imagine doing, life without it anymore. It really is fantastic….

 

You said a little bit how the catheter has impacted your lives. You said it’s made it improve?

 

Oh it really has. I mean the thing is we can, if we can go out for a day without having to be back for the toilet because there’s no public toilet where there’s a hoist, a bed and everything else. That just wasn’t possible. And if we, oh, occasionally when we did, especially when we were in Scotland and we were coming down to London, I’d drive down from Scotland to London and the first thing I’d have to do was get the bed set up, get the hoist out, hoist Hayley up onto the bed so she could go to the loo. And quite often after that she wouldn’t get up again. She’d stay on the bed and that’s, this is actually, because she’s had it now for six, seven years. Seven years? Yeah.

 

I thought she said six.

 

I think it’s, no it’s seven.

 

Oh is it? Okay.

 

Oh I don’t know. Yeah it’s seven years this year, yeah.

 

Right.

 

Okay yeah. And quite often she’d end up on the, sitting on the bed for the evening because getting up again was just too tiring. So it really does have an impact on what you can do for the evening.

 

So it’s really improved the quality of your…

 

Oh, yeah it really has. It really has. And we can go anywhere now, no problem at all. You don’t even think about it. I mean even if we forget to take a bottle, you can always grab a lemonade bottle or something like that. So it’s, you know, it just makes so much sense. 

A district nurse recommended Hayley take antibiotics for 3 days after every catheter change. She...

The medical centre are very good. I just phone the secretary and say “I’m bringing down some samples, can you do a path form for me?” And if I get it down there for twenty past twelve, that’s great. It goes off for testing. And they’ll do the path form and it’ll be waiting for me. If that secretary’s not on, I have to then phone up, ask for somebody to come and do it and now they’re pretty good…..

 

But you could be doing that every week because there’s always something showing with the catheter in there because you’ve got a foreign body in your bladder. And they’ll say, “Oh mixed contaminants, nothing specific,” and you know we’re thinking, “Hang on, something is going on.” And then a district nurse said to us, “Oh,” she said, “Well each time you have a catheter changed, just do a three days course of trimeth”, trimethoprim…

 

So we done that and then when we was sent, ah that was it she also gave us some dipsticks, and so we could test the urine ourselves for things like that. And then stuff would go off for testing, come back and it would be responsive to various antibiotics. And the district nurse really made a bit of a mistake because she [Hayley, who he cares for] was taking so much trimeth, she became trimeth resistant. 

 

And so now Hayley’s really careful over antibiotics. She doesn’t take them at the drop of a hat; she only takes them when she needs them. 

 

James, Hayley's carer, describes how he changes her catheter valve every week. It's easy and now...

How often do you change the valve? 

 

Pretty much once a week. I think it’s meant to be once every five days, which is why we won’t, I won’t change the catheter because it’s so easy to just let it pass. So that’s why we’ve let the district, DNs [district nurses] come in and do it. 

 

And can you describe what happens when you change the valve? Do you have to have sterile gloves and that sort of thing or not? 

 

No, not really because it’s all out, it’s all open so I just, basically I just pinch the end of the catheter, I open up the new valve. My hands are washed but sort of like it’s not gloves and everything else. Just open it up, make sure the valve’s flipped open and take the old one off. And pop the new one straight on. 

 

Make sure there’s a little bit of urine comes through and then when that’s finished, shut it off, dry it and chuck the other one in the bin. Wash my hands and job done. It’s sort of like, I mean it’s quite weird talking about it because it’s just sort of like a natural thing to do. 

 

James explains what he does for Hayley every day. He says some hospital nurses can't understand...

What does caring for Hayley involve on a day to day basis?

 

Basically, right, start in the morning. Get up, pretty much first thing Hayley does is have a pee. So I take the bottle to the bed, open the catheter valve, she has a pee, clean up, turn off. Coffee, then she has a wash.

 

Which you have to help with?

 

I wash her; yeah I wash her and dress her. Put the sling on, then she’ll do a bowel movement with the aid of a Peristeen. So basically it’s similar to colonic irrigation.

 

A bit like an enema?

 

Yes, it is. But you pump the water in and then just let it wash out basically. So yes, we do that and then get her dressed. Hoisted into the wheelchair, then this probably takes about three, it can take about three or four hours. But you see before the Peristeen, a bowel movement was taking three hours on its own.

 

Is that every day?

 

Yes, so then when she’s up, we’ll have breakfast and tablets, supplements as well. And then we’re at lunchtime. So it’s pretty much lunchtime by the time we’ve eaten breakfast. And then she’s pretty independent for the afternoon. We have dinner, pee probably three or four times throughout the day and then bed, teeth, you know, undressing, hoisting onto the bed and support, putting all the supports in and hopefully get a good night’s sleep……

 

So from the point of view of the catheter, what’s your role?

 

Just daily maintenance really, cleaning it, changing the valve, washing it. And we put a dressing around it because sometimes the site gets quite mucky, so we just put a dressing around there just to stop it from getting onto clothes more than anything.

 

What’s been your experience of working with health professionals such as the district nurses? Has that been good or bad or varied?

 

It’s quite varied. It depends. Actually the district nurses, they’ve been pretty good. Hospital nurses, a lot of them don’t like, can’t understand the fact I’m a carer. And they can’t understand the fact why I insist on helping Hayley in hospital until they see the care that she needs.

 

Why can’t they understand that you’re the carer?

 

Well a lot of people can’t understand why men are carers. And you get that, a lot of professionals as well. I’ve actually had salesmen sitting there saying, “Well don’t you think it’s really weird men being carers?” And I’m just thinking, “Hello?” You know, and I just think you just, just don’t have a clue.

 

That’s really important.

 

Yes it is, I mean really and truly people’s attitudes stink on the whole. Yeah, they really do.

 

They [men] are often the best carers.

 

Well I mean I don’t know, that’s the thing, I do think so because you know you just don’t think about it, you just do it.

 

Why do you think people think that men shouldn’t be carers?

 

I don’t know because I think traditionally they see it more of a woman’s role being the carer and nurturing one in a relationship.