What does your caring role involve? When you say you have to help him [your husband] with the catheter, what do you have to do exactly?

I have to remove the night bag every morning and clean it and help with daily catheter care. And then check the night bag and flip flow and drainage for the night. Because his balance isn’t good, he cannot get in and out of the bath alone, that’s quite a procedure. There are two levels of bath seats, one across the top, like a step going down and I can actually manage him considering he’s a big person. He sits in the bath like you or I do, thanks to these, and this was all shown to me in hospital because, although you’re trained, there are all sorts of nifty things to help you.

When I first took him out from hospital, because he was in for so long and they wanted us to go out in case we got hospitalised, he was very unsure. The first thing you need is a blue badge because you’ve got to open the doors much wider and he was on what was known as a banana boar to get him from the car seat to the wheelchair. Whereas now he gets out puts his feet down and it’s a bit precarious pulling himself up on the car door but we do go out a lot, so that was difficult.

So my caring role back here, I help with daily living. I do washing each day; whether it’s in the bath or in the bed, help him dress. And his feet are splinted and he can’t feel his feet at all so that all has to be done by me.

So I could never leave him overnight. I can leave him in the day for long periods now whereas at first it was a couple of hours and not going upstairs whereas I trust him now. And they do provide you with a banister each side so he’s more self-sufficient. But he can’t drive. So wherever we go for physio or hydro or anything, you know, I have to take him.

Other than the catheter being changed once in three months, I don’t see a district nurse. We see a GP now once a month but that’s to address all the drugs and things.

Are you involved in the catheter care, changing bags and things like that?

Changing bags yes, but he will now put on his own leg bag. I wash him in the morning, wash the area and make sure everything’s fine and take the night bag away and empty it and clean it. And then his leg bag and all that, he puts on later on himself and I encourage that but he doesn’t do all the washing. But I think he probably could do now more, but who knows, as it’s worked as it is we leave it and you then know if there’s any problem.

How often do you have a new bag?

Every six days.

So that’s for night and day?

Yes, religiously. And the flip flow is changed as well. I mean obviously if there’s a problem you change it more often but I wash it, both ends in hot water.

As you wash it out?

Well with hot water both top and bottom, but that’s the way I’ve done it because it’s always worked, keeping it bug-fre.

And then would you just hang it in the bathroom ready?

it’s on a stand. That is another thing when you come out from hospital, you beg and borrow because it’s like a coat hanger and I thought well if you haven’t sort of asked for one, what on earth would you hang it on? Sometimes when you’re away this isn’t very convenient, you’ve nothing to hang it on. And when he first came home it was easy. He had a

How has being almost a full time carer impacted on your life?

Dramatically, but in one way for the best. I’m here more of the time so I’m more useful to members of the family who need childcare. They bring, we’ve had one granddaughter here since she was really small and Rob has taken part in that as well, so some things are enriched.

On the negative side I can no longer get up and go somewhere in a matter of moments. However, Rob is an exam candidate for the would be doctors at the big teaching hospital, it’s a bit of give back time and we enjoy doing that. And sometimes we have to be there really early because of exams starting and you just plan ahead. If you have to be up really early, you can’t just nip off but we do manage.

But the other thing, when you’re over sixty, they don’t think, Oh gosh here’s somebody giving up a caree, they presume you will do this. So while I was only doing part time nursing, I don’t really manage to do that now, because you’re needed.

I don’t choose to leave him. If I’m child-minding grandchildren somewhere else, I’m on the phone or I take him with me. So your life is curtailed but you get, like anything, you live within your capabilities, so I’m happy enough.

I suppose that changed the dynamic of the relationship a little bit?

It does, yes, but I still like to think of him as my husband. I suppose in the beginning you do everything, I noticed this when we went out for dinner, you know, I paid. And I said to Rob I don’t really want to go on doing this. You’ve got your credit card, so he does all that now which I think is good for him as well because he isn’t disabled from the waist up. And people do still talk to people in wheelchairs, How is he and I say, Well ask hi, you know.

But that’s common to lots of things and he is a very intelligent person so, you know, yes it changes your life because all these things are such a shock. At least I had six months to get used to it whereas I guess a lesser disease and you come home quicker, that must be dreadful.

If you ever felt that you had to go and do something, go out for the day, would you be able to get anybody to come to look after Rob, to keep an eye, a bit of respite care?

I think you can and I’m looking into that because we met a man who was a carer to his daughter, who lost his wife a while back. He lives locally, and he said I ought to look into these carers respite. He said it doesn’t actually necessarily mean going away, which I wouldn’t do without Rob.

But say I didn’t belong to a gym and Rob said actually I’d like my wife to [join], that would count as my respite. And I thought that’s quite nice, that. To answer your question, if I were out for all day, sometimes I do go to the hospital and other places, then I ask a member of the family just to ring up. A lot are local. I haven’t ever involved anybody else and obviously if Rob weren’t well I wouldn’t be going.

My role as a carer is looking after my husband and monitoring how the official paid carers look after him.I can’t trust anybody with his care unless I’m supervising it. And they have a special name for that which is very convenient, which is over-involved relative syndrome.

Really?

Oh yes.

Who gave you that term?

It was a doctor at the hospital that I went to. We [my husband and I] want a life. But with a catheter it is extremely difficult. You’re always thinking, you always have to take a pot, gloves, medical things, the whole lot. And you’ve got hampers [of food] and stuff. You know you just want to have a life.

What about the effect of all this on the wider family relationships? Has all that had a huge impact on wider family relationships too?

Well we don’t really have any, it’s just us, and we’re hugely co-dependant. It [the catheter] has made a huge difference to our relationship.

So the catheter’s been a key problem

Yeah

That’s affected the relationship?

Mm. But you see I don’t mind much, I just get along with it. If you really love someone that’s what you do, you don’t mind. But it is physically very wearing. Every time or any single time you go out to a social event, twice a year probably, except to hospitals to get your catheter changed, is, you’re always worrying. Worry, worry, worry all the time. And I’m not a worrier, I’m really easy going. I don’t mind flipping a flop and putting them, getting the urine out and everything because it’s important and many people do not realise how important it is.

Has your role as a carer changed a lot over time or has it been much the same over the years?

I would say that it’s worn me down and I’ve become more stressed.

Is there anything else you want to say as your role as a carer?

My house is falling down. I can’t pay any of my bills. My phone’s been cut off. They’ve taken away my travel pass so I can’t visit my husband; you know I don’t have that sort of money anymore.

Tell me about your involvement with Carers UK.

My daughters joined me because they realised I might need help when I came home. But it’s the local one I’m more involved with. I support the UK one and read their literature but the local one is very good.

They run a carers cafe once a month, the last Saturday in the month ours is because its different areas like all around this. And it’s very well run. We can’t with our family commitments always get there but it’s for carers too. You can have your nails done, you can have your hair done, Rob can have a bit of physio or chiropody. We do go regularly to our own chiropodist but it’s nice to have cups of tea, people to talk to.

So you both go to these meetings?

We both go, yes, and I think they do have days out and they do courses. So when I was really restricted going out I did do microwave cookery course and it was fun.

Locally is that?

Locally yes, there’s a big centre where the carers, the local carers meet and there’s various rooms. And a lovely lady, she’s now retired but I’m sure they’ve got someone else, and I got up to wash up and she said No, no, this is your morning off, you don’t do any of it. I thought wow.

Oh that’s lovely.

Yes it was fun, great fun.

A lot of the people who work, are they volunteers?

Their services are given free on the Saturday’s. I don’t know how it works in the week because they seem to have different groups. I imagine they’re paid. But they’re very caring, lovely, smiley people.