7. How can I look after myself if I’m living with incontinence?
Key points
Talking about incontinence
Talking to family and friends about incontinence can feel challenging. It can be easier to talk to some people than others. For example, sharing your worries with someone who has had incontinence, or looked after someone with incontinence, can make it feel more acceptable and normal and build your confidence. It might also be easier to talk to someone of the same gender. You may be able to find a support group of people (online or in person) who share your experiences or have an understanding of the challenges.
“It's all about building confidence in yourself to talk about your issues, and that takes time… and you could practise your talk to your family, your closest family and friends, and then branch that out, that conversation with other people as well. So, maybe that way, you can build up your confidence and talk about your conditions a bit more openly without being too anxious and embarrassed about it”.
Syed lives in East Midlands
There might be times when you need help from others. You may have a few trusted people who can help you. Starting conversations early on in your dementia and talking openly can help. You may have to introduce the idea slowly to others, as they might not feel comfortable: incontinence is a taboo subject for some people.
“It is a very awkward subject to initially start off. It's easier, obviously, I think, to talk to another female than a male.”
Beth lives in S. E. England
Coping with emotions
You may have grown up with values that affect how you deal with emotions or have beliefs that mean you think you shouldn’t have incontinence or shouldn’t tell others about it. Acknowledging this and talking to others about how you feel can help you to better understand your emotions.
“Certainly, people can be embarrassed about asking about toilet facilities and things like that. So, I think it’s about re-educating yourself … about feeling comfortable to ask about those kind of things”.
Christopher lives in S. E. England
Asking for help from strangers can feel particularly daunting. Many companies provide staff with training on how to support people living with dementia. You might be surprised how many people, such as shop workers or train staff, are happy to help and have helped people in similar situations before.
“What I think is so important about the dementia message is, people need to recognise when they’ve got it, own it, deal with it, seek help and take on board any help that’s offered or medication and guidelines etc.”.
Anthony lives in Yorkshire and Humber
“It's all about self-dignity as well, isn't it? You don't like talking to, especially strangers, about your incontinent issues … I feel a bit anxious trying to talk to total strangers. I wouldn't go into a shop and say, ‘I need this help’. I always go out with family, so there's somebody always around to be there with me so I don't have to worry about asking strangers for help”.
Syed lives in East Midlands
Incontinence can be unpredictable, so accepting that there may be times when you are caught short is important. Being prepared in advance for a mishap by having spare clothing and supplies with you and knowing where the local toilets are (see Section 5, Going out), will help you manage the situation and get yourself sorted out as soon as possible. Knowing you can deal with the situation can help you stay calm and feel more in control.
“I think my only advice is know yourself, and I am reasonably confident now. It’s not a straight line. Nothing is a straight line. It’s not a straight line down. Just because you peed your knickers while you’re rushing to the shop and it’s horrendously embarrassing, it doesn’t mean that that’s going to be every day. But if you just take a precaution and then monitor yourself, you’ll find, ‘Oh, I’m not worrying about it. It’s not happening too much’”.
Lydia lives in N. W. England
Although it might be hard to accept what is happening, you can maintain good quality of life with incontinence. Talking to others or seeking professional support with emotions can make it easier to accept it and can help reduce negative emotions.
“I don't think you can go through life thinking: ‘Right, that's it, I can't do anything’. I think you just have to carry on with life, otherwise you start getting mental problems as well, which is not good. You have to accept what's happening and I think that helps as well.”
Catherine lives in London
Things to look out for
Dementia damages parts of the brain, affecting behaviour and memory. It usually gets worse over time and, as it progresses, some people find looking after their personal hygiene becomes more challenging. Problems that some people have are:
- Leakage of pee or poo on underwear or a pad without realising it has happened.
- Difficulty washing and keeping clean.
- Not wanting to wash or change soiled clothes.
- Not recognising the toilet.
- Not recognising the need to go to the toilet.
“I struggle sometimes with personal care, and even though I say be kind to myself and accept these things, it’s difficult to acknowledge to anyone, you know, like my mum or something, that maybe I don’t always wash when I historically would have washed.”
Christopher lives in S. E. England
It is important to remember that it is the dementia that is causing these problems not a person making a conscious decision to act in a certain way.
Talking to people you live with can help you both understand what might happen as your dementia progresses, and how you want to manage any changes that can affect you both.
“I just left a little poo somewhere but I hadn’t been aware of it, and I don’t mind him telling me there’s a little poo...I don’t like people having to clear up something that’s… like poo, I’d rather clean my own poo up, but I don’t mind people knowing about it and so, you know, if [my husband] finds a little poo, I’m very happy to clean it up because why should he have to do that? ”
Anna lives in Yorkshire