Living with a urinary catheter
Informal care: caring for a relative with a long-term catheter
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 occasions he changed the catheter if it got blocked.
Alex's husband was very supportive when she was in hospital, and also when she returned home. On occasions he changed the catheter if it got blocked.
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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.
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. Before David left hospital Narelle was taught about catheter care.
When David was in hospital, Narelle visited him every day and got useful tips from the therapists. Before David left hospital Narelle was taught about catheter care.
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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?
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?
Yes.
In terms of the catheter, in terms of caring?
Yes. Yes.
Any information you asked for you got the answers, did you?
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?
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.
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.
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.
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