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.
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.
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 June 2015.

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