Relatives can be a great support to people with a long-term catheter (see ‘Sources of Support
’). Some of the people we interviewed talked about the informal care they received. Mostly, this came from a spouse, though Gordon’s carer was his retired daughter who lived nearby. She helped him with household chores, such as vacuuming, washing dishes and preparing meals. Badg, paralysed after a spinal cord injury, had his wife as his main carer. She helped him dress and did the cooking, cleaning and what he called ‘normal wifely duties’. Alex, who had multiple sclerosis, had huge support from her husband, particularly when she was dealing with health professionals. He helped with the catheter too when necessary.
Alex’s husband was very supportive when she was in hospital, and also when she returned home. On...
View full profile
Age at interview: 51
SHOW TEXT VERSION
That must be quite difficult to be strong enough when you’re in hospital as a patient to tell the doctors to go and wash their hands, you must be quite strong.
It’s very difficult and one of the things that slightly helped, well not slightly helped, that did help, was my husband was there to support me. That was really important, and my husband throughout the whole thing has been extremely supportive and it really, really helps.
As strong as I can be, sometimes, and as vocal as I can be sometimes, and with my level of knowledge disability wise because I’ve been involved in the disability world for over ten years, it is still hard for me when it comes to me, my own body, other people in authority who are taking care of me, have the control i.e. doctors, nurses, it’s still really hard to stand up for what you want.
So I’d say to people get as much help and support with you as you can and remember it is your body and you need to look after it and sometimes some health professionals are not good at that and are not doing the right hygiene procedures.
How often do you have to have the catheter changed now?
For me I have it changed every five weeks because I find with my body, about the time of five weeks it would start to start blocking. So I found that if I change it every five weeks that’s fine, I don’t get that problem.
Is it changed here at home?
Yes, the continence nurse comes and changes it. My husband also has changed it several times when it has blocked. It’s actually quite easy to do. It’s not painful and it just takes a bit of preparation.
A few women we met cared for a husband with a long-term catheter. They told us what they did. For example, Pat cared for Rob, who had cauda equina syndrome, a serious condition where the nerves at the end of the spinal cord become compressed. Rob was incontinent and had a urethral catheter. Pat was a trained nurse and so took a major role in his care. The GP and the district nurses helped too, but when they found that Pat was a nurse, they expected her to give up her part-time job to care for Rob. She explained what she did each day – her caring role had changed her life. Pat indicated how small adjustments in her role as carer meant that she no longer had to do everything.
Pat helped her husband with washing, dressing and catheter care. She also drove him to...
View full profile
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
Caring for Rob has had a positive as well as a negative impact on Pat's life. She is at home more...
View full profile
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...
View full profile
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.
Narelle also spent a couple of years caring for her husband, David, after his treatment for prostate cancer and then a major stroke. He first had a urethral and later a suprapubic catheter. The district nurse changed the catheter when necessary and a professional carer from the local authority came for a few minutes in the morning and a few minutes at night but otherwise Narelle coped alone. Gradually David needed more nursing so he moved into an excellent residential home. Narelle now visits David every day at the home.
When David was in hospital, Narelle visited him every day and got useful tips from the therapists...
View full profile
SHOW TEXT VERSION
So while David was at home and you were caring for him, were there things that kept you going or were really helpful? Any routines to have or anything like that, for somebody who is going to be maybe new to that role? Anything that you would advise?
Narelle' Oh that really is difficult because I visited him every day for six months when he was in rehab. And I got to learn an awful lot of tips and tricks from the physios, the occupational therapists, the speech therapists. And we just tried to sort of get back to a normal living at home life. If I think of something I’ll say, but at the moment I can’t think of anything that wasn’t hard, lots and lots of tolerance and patience I think is the answer. And some sleep, if they’ll sleep at night.
Did you feel that you were always given all the information you needed?
In terms of the catheter, in terms of caring?
Narelle' Yes. Yes.
Any information you asked for you got the answers, did you?
Narelle' Yes, I mean it was just to try and keep it [the catheter] as hygienic and clean as possible, and empty it [the bladder] regularly. I don’t understand the logistics of how the bladder should or shouldn’t empty and how regularly, and whether having a bag would have been better than having just the tap. But I don’t think it created any more UTI’s than maybe he would have got anyhow.
And were you told in terms of drinking lots of fluid, that kind of thing?
Narelle' Oh yes. Yes, lots of fluids, the odd beer or Guinness I don’t think did any harm.
Rachel’s husband Roger was also in a residential home that gave nursing care. Roger broke his neck in a trishaw accident in India. He had a urethral catheter for a while, and then a suprapubic catheter. Rachel felt that she had to supervise Roger’s care and spent most of her time with him. She didn’t trust the nurses to care for his catheter properly. She often slept in his room to make sure that the nurses turned Roger every two hours and to check the catheter was draining properly. Occasionally she took him out for a social event, which was difficult because she had to take so much equipment with her.
Rachel didn't trust the professional carers. She didn't resent her caring role but she found it...
View full profile
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’.
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
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.
Life as a carer can be tough. Carers don’t have much time to live their own lives and may struggle financially. They can find support from Carers UK, a charity set up to help people who care for family or friends. It gives information and advice about caring as well as practical and emotional support.
Pat is involved with Carers UK. She also attends meetings of a local group for carers and their...
View full profile
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.
People had a few messages for carers, including:
- Imagine what it would be like to have a catheter yourself. Be careful when you are moving urine bags or carrying out other procedures. Be patient.
- Make sure the person with the catheter is involved in all important decisions. Don’t talk about the catheter user when he or she is in the room. So, for example, don’t let others say, “Does he take sugar?”
- Keep a diary daily.
- Don’t accept second best treatment or care for the catheter user.
- Make time for yourself. Keep some outside interests. Live life to the full.
Last reviewed October 2018.