13. This is not easy

Key points


  • There are often no easy answers to emotional or practical problems.
  • Different people cope in different ways.
  • It’s hard, but try to look after yourself and ask for help if you need it.
lightbulb

The combination of dementia and continence problems can lead to many practical and emotional problems. Some people can find good ways to cope, but others can’t. It’s very common for people coping with dementia and continence problems to feel:

  • Frustrated
  • Disgusted
  • Sad
  • Overwhelmed
  • Guilty
  • Exhausted
  • Worried
  • Angry

These feelings are normal and understandable. It can be really helpful to talk to other carers about continence problems, but you might have very different experiences. Some people feel that managing continence problems change the relationship they have with the person they are caring for. Others feel it is just another part of their relationship. Everyone and every relationship is different.

quote

“The continence it’s just the next step, the next stage of how it’s going to go for me and for him.”

Wife

Looking after yourself

Remember:

  • There are often no easy answers to these problems –don’t feel guilty if you can’t find a solution.
  • It is the dementia causing the problems not the person that you care for.
  • Ask for help when you need it (see section 14). If the situation feels unsafe (either for you or the person you are caring for) explain to a care professional and ask for support. Unfortunately, for some carers, these problems can mean that they are unable to continue to look after the person at home.
quote

“People were saying to me are you sure you’re alright? Yes. Being stubborn, looking after my husband, of course I was alright. But no, I wasn’t alright…. I realised I couldn’t do it anymore…. it’s the incontinence bit that I just could not cope with.”

Wife