Pat

Age at interview: 69

Brief Outline:

In 2008 Pat's husband, Rob, was diagnosed with cauda equina syndrome and thrombocytopenia. He was very ill and needed a urethral catheter. Pat helped to care for Rob while he was in hospital and she has cared for him since he returned home

Background:

Pat is a registered nurse (RGN), but is not working at the moment because she is a full time carer. She is married and has six grown up children. Ethnic background/Nationality: White British.

More about me...

In 2008 Pat’s husband, Rob, collapsed in a great deal of pain. He went to hospital, where he was diagnosed with cauda equina syndrome. This was caused by an E Coli infection, septimcaemia, and epidural abscesses. He also had thrombocytopenia. Rob was very ill and needed a urethral catheter. While he was in hospital Pat stayed by his bedside all day and she helped with his nursing care. When Rob returned home Pat was not given enough information about what to expect or what might happen when the catheter was removed. 

 

After Rob returned home he tried to manage without a catheter for 24 hours but found he was incontinent, so the district nurse inserted another catheter, much to Rob’s relief, and as advised by his GP. Since then Pat has helped Rob to live as full a life as possible. She helps to manage his catheter, organises the supply of urine bags, and makes sure that he has a good supply of all his medicines. Rob has gradually got much better. Although he has very little feeling from the waist down, and he finds it hard to balance, he can walk with the aid of two sticks. He gets out and about and travels on holiday with Pat. Pat drives Rob everywhere but one day Rob may be able to drive a specially adapted car. 

 

Pat’s life changed a great deal when Rob became ill. She had to give up her part time nursing job to care for him. However, she says that in some ways their lives have been enriched and they have more time for each other and for the grandchildren. She enjoys monthly meetings with a local group that supports carers and their families. 

 

Pat said travelling with a catheter was not a problem for Rob. They managed the journey by staying near the airport the night before.

How is travelling with the catheter?

 

Well I wasn’t sure what I did with the catheter because it’s only a three hour flight so I asked the pharmacist and he said, “Oh I’d be interested to know, I’d leave it on open drainage”, which I did. I went back and told the pharmacist because there are other people. I don’t know how you’d be on a much longer journey but I don’t intend to do that, but he [my husband] was fine.

 

Good.

 

And then there were always toilets immediately you come off anyway, but no I’ve had no, we’ve had no problem at all.

 

Good.

 

But you do your journey, not just because of the catheter, but because of the wheelchair and bags and I’m on my own, I do it in stages. I stay the night before near the airport and this sort of thing. Heathrow is too big and there are too many people for you to get too much help whereas when we get the other end it’s second to none, it’s a smaller airport. I don’t have to do a thing, they do it all.

 

You’re met by somebody with a wheelchair?

 

We take our own and they bring it to the aircraft as we come down in the lift. They have a disabled little sort of cabin that they lower you down. Although Rob can walk down the steps, they prefer you not to and they lower you and then they give you your own wheelchair and help you through and get your luggage. So we’ve learnt, it is a big thing.

One thing you can’t do with so much luggage and a wheelchair is go on a transfer bus, that’s too, I can’t do that. So I stay very near where there’s a covered way, it’s six minutes’ walk, and I can manage that if somebody helps me with the luggage. 

Pat felt her husband's urethral catheter had 'aged' them and changed their lives but said that it didn't matter. The main thing was that he was still alive.

What were your first thoughts when you realised that your husband was going to have to have a permanent catheter?

 

I thought it aged us somewhat and changed our lives but, because he’d been so near death, this was a small price to pay to be honest with you. This, as I’ve said earlier, would be a different thing if you were a young man coming home from Afghanistan and all that. That’s a different ball game, but I think in old age we manage. And he’s still here so that’s the main thing to me.

Pat helped her husband with washing, dressing and catheter care. She also drove him to physiotherapy or hydrotherapy.

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 board” 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-free”.

 

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 cot side so he was safe at night, that’s gone now. And then of course when you read the literature it said at the bottom, not on prescription, so I rang them and within two days, two of these nifty stands came which are plastic, but they’re brilliant. They’re self-standing on the floor and they’re perfect for anywhere you go.

Caring for Rob has had a positive as well as a negative impact on Pat's life. She is at home more so can help with childcare too, but can't go to work.

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 career”, 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 him”, 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.

Pat said she would enquire about 'respite care' so that she could leave the house for a while if she wanted to pursue an activity without her husband.

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.

Pat is involved with Carers UK. She also attends meetings of a local group for carers and their partners. Pat can have her hair done and Rob can have physiotherapy or chiropody.

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.