Informal care: caring for a relative with a long-term catheter
- Age at interview:
- Alex is a disability consultant. She is married. Ethnic background/nationality: White British.
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
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.
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?
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’.
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.
- 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.