11. Talking about incontinence

Key points

  • Some people find talking about this very hard.
  • Think about what you want to get from a conversation.
  • Healthcare professionals are used to talking about continence problems, but you might need to start the conversation.
lightbulb

Many people are uncomfortable talking about toilet problems and incontinence, even with the people closest to them. Talking about these topics with the person that you are caring for can be hard, and also with friends, family and even nurses or doctors.

But not talking can make incontinence problems worse or stop you getting the help you need. Different people have different approaches to talking about personal topics.

Talking to the person you care for

If you don’t find it easy to talk about incontinence, here are some things to think about:

  • Who would the person you’re caring for be most comfortable talking to? Is it you or would they prefer a different friend or family member or a care professional?
  • What are your goals? For example, do you want the person to use continence products or prompt them to use the toilet more often?
quote

“We never dreamt we’d have these conversations with anybody. You’d never talk about it.”

Wife

“As a family, we’ve always talked about everything.”

Son

  • How do you think the person will respond? Are there any ways you can make it easier for you both? What is the best time and place to talk? What are the best words to use? For example, urine or pee or wee?
  • How can you show that you understand and don’t blame them?
  • Can you come up with solutions together or do you need to ask for support from elsewhere?

Talking to friends/family

Often, it’s helpful to discuss these problems with friends and family.

  • Think about why you are telling them. For example, are you looking for support or do you want to tell them about things they might notice when they visit? You might need to explain why incontinence can happen and that it is not the person’s fault.
  • Think about things that the friend or family member could do to help you if they offer support. For example, how could they make it easier for you to keep visiting them?
  • You might feel guilty talking about incontinence with friends or family, but there might be benefits for the person you’re caring for, for example being able to carry on visiting someone’s home.
  • Talking about this can be hard. Don’t be embarrassed if you get upset talking about it.
quote

“We went to a party of friends. I was on tenterhooks, but they really wanted him there. They didn’t have a clue that I was stressed the whole time.”

Wife

“And it’s OK for someone to get upset, it’s OK to say it’s horrible, it’s OK to say that.”

Continence nurse

Talking to care professionals

Healthcare professionals can be a good source of help, but you might need to raise the topic of incontinence yourself as they often don’t ask about it.

  • Try to speak to the healthcare professional somewhere you are comfortable discussing incontinence. Sometimes, it’s easier to speak by phone rather than face-to-face.
  • Can the person you are caring for be helped to take part in the conversation?
  • In some cases, it might be difficult to have the conversation with the person you are caring for there, particularly if they don’t know that they have incontinence problems.
  • Dementia and continence problems can be complicated and vary a lot. You might find it helpful to write down the problems you are facing so you can work together with the healthcare professional to find answers.
quote

“It was more her [nurse] listening to me and the pair of us trying to work it out.”

Daughter

“I never had anybody advise me on his incontinence. They never even referred to it.”

Wife