11. In their own words: People with dementia speak about incontinence
CONTINENCE AND DEMENTIA LINK
When Roberta started experiencing incontinence, she wasn’t sure if it was related to her dementia diagnosis. She went online to find out about other people’s experiences.
Roberta lives in N.W. England
“At first I wasn't even aware that you could get incontinence with it…. I think a lot of people would be in denial that they've even got it at this stage because if it's an early stage, you tend to forget that you have, apart from the fact that you've got short-term memory and there's no other obvious problems, so you tend to put that aside and carry on with your life and not that you're in denial, but you kind of don't want it to impact on your life and make it a big issue. So, once you start to develop incontinence, you start to then think, “Well, is this part of it or is it just the medication that I'm taking?” So, that's why I do a lot of research online and look into different stages of what people are going through and it's nice to see what people say and give ideas. So, I think a website like what you're doing is going to be valuable to people, quite honestly. It’s part of life, yeah”
PADS
Lydia monitors herself and has a variety of different types of pads and pants she can use if she needs them.
Lydia lives in N. W. England
“Again, 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. I don’t need to use those thick ones now. I don’t need to use the pants. I’ll use a thin liner. I don’t need to use one at night time,” but if you get a cold or you’re poorly, I think I might just actually just for comfort, you know, pull my knickers, you know, the pants. But I have a whole range. I have a whole little chest of drawers which has selections of, you know, the various things.”
Syed uses disposable pants designed for men that you can tear off
Syed lives in East Midlands
“So, I use the men's pads, the blue ones. And especially after an accident, you can just tear the sides off, so you don't have to drag them all the way down your legs. So, you just tear the sides and then just pull them out straight away, that way rather than dragging your legs with all the soil, then soil the rest of your legs as well. So those are best. And I don't know what they're called now, I can't remember what they are. But I think they're TENA men's pants or something. They're very good for me. I've tried others, but these are the best I like.”
Beth finds pads comfortable and says there’s nothing shameful about using them.
Beth lives in S. E England
“Well, for a start, I mean, it's nothing shameful in wearing them. You know, they're comfortable. As I said, I only wear, I have, what I wear, I used to wear
Olivia tried to apply for prescription incontinence pads but the local service wanted a five day record of what she drank and ate and when she went to the toilet.
Olivia lives in S. E. England
“I got in contact with the incontinence team to see about getting incontinence pads. It's not an easy thing. So, they sent me the letter. I had to write a diary. For somebody who's got dementia, this is ridiculous, a diary of my fluid intake, my urine output, what I've eaten and bowels open. And they needed five days. Somebody with dementia would not be able, well, I couldn't do it. I kept forgetting and I just gave up in the end. It was like, well, I’m just going to buy my own, this is ridiculous. There needs to be more support in helping somebody be able to get funding, the free pads which they're entitled to. I don't know how that could be done in an easier way, that's through incontinence team.”
GOING OUT
Joanna, who has vascular dementia, worries about not being able to make it to a toilet when she is out of the house and this has made her not want to go out. Recently she had to travel for three hours to go to hospital for a check up and she made a lot of preparations.
Joanne lives in South Yorkshire
“I can’t tell my mum or my son. I’m not telling them that because I don’t want them to know that, but then I don’t want to visit anybody because it might happen. So, it’s all these little things if I’d have done… it’s a little thing, but it’s made it a big thing. So, I don’t want to go anywhere unless I know there’s a toilet that is like there. So, if [husband] wants to go shopping, I’ll say, “Well, can’t we just order it online?” because you don’t know when you want to go to the toilet, well, I don’t….It’s like yesterday I were at [large city] for a heart appointment, so I’ve got to get from home and set off at 4.40 yesterday morning to get there for the tests and the appointment. So, what I have to do is miss all my tablets and take diarrhoea tablets, don’t take any water tablets for my heart just so I know that I might get to [large city]. And then I have a little carrier bag with everything in it, trousers, shoes, pants, wet wipes, towels for if anything did happen and I couldn’t get out of the car, you know. So, that’s how bad it is. I have to think so far in front because that’s like a three-hour… it took us three hours yesterday to get there.“
Luke wanted to use the toilet urgently in the shopping centre and had to argue with the key holder to get a key to the disabled toilet. He now carries a RADAR key with a card.
Luke lives in N. W. England
“I’ve had that experience with myself, to be honest with you. I was in a shopping centre, right, I wanted to go the toilet quickly. Anyway, I'm not in a situation where the brain is telling me to go to the toilet now, but I don't really want to go. When I want to go, I know I've got to go, sort of thing, because of everything else. But I was in a situation which is shocking at the [local area] here. I went in to use the toilet, what have ya, and the guy that gives you advice said, “Do you want the disabled, turn to the side there”. I said, “Okay,” so I went over to get it, and a young fellow behind the counter pulled it away. And I said to him, I said, “I want to use the toilet, mate”. “Oh, I don't have to give it to ya”. I said, “You do under the law,” I said, “I'm a disabled person, I need the toilet. And since then, I've got myself on one of these keys they have, I've got a little card that says, “Please help,” whether that will make any difference or not. I’ve got a RADAR key and a card with it.”
Catherine got caught short while waiting for a bus and used café toilet opposite.
Catherine lives in London
“Well, I mean, hopefully, if you can, like me, if you can get to a loo and you can get yourself, it sounds awful, doesn't it, cleaned up and changed, it’s fine and off I went and the rest of the day was, you know? I think, if not, I think it's just, maybe it's just something you have to, not get used to, but you have to find, you have to accept it and try and if you're somewhere where you, as I say, if it had been bad, I would have had to go and get a cab and fix yourself in a cab, which isn't very nice either, because there's nobody at home to come and rescue or something like that. It's not much you can do, really. If it's happened, it's happened, and that's it. You've got to just get on with it, you know?”
I mean, I think that's all, you just have to have stuff with you. I mean, on the other day I was out and this was not, this was, you know, this wasn't a urine thing, this was the other end misbehaving. I'd obviously eaten something, which seems to happen every now and then, and I had been quite normally first thing in the morning. I thought, “Oh, that's good, that's done”. I don't go every day anyway. And fortunately for me, touch wood, the dementia tablets have not given me diarrhoea, because that was my one dread. But the consultant, the gastro consultant said, “Oh, don't worry,” she said, “if that happens, you just take Imodium and that's it, you know”. So, I go around, I carry those around if I do have.
But anyway, the other day I'd been, I thought, “Oh, that's good,” and off I went, I was out. And I met a friend and the bus was all diverted and I met a friend and I was sitting talking. She left and I was sitting on the bench waiting to change buses and so on. And I thought, “Oh my God. I need to go to the loo”. Fortunately, there was a café opposite. You've never seen anybody get across to that café and somehow, in a little square box, which it was, you know, it was just one loo in a box, I had to pull my trousers down and my trainers off so I could take the whole thing, change everything. Because I knew it was happening and this is what I had. I call them tsunamis when it happens, because it's sort of semi-solid but it's, you know? But God forbid, if that café hadn't been there, I would have had to get a taxi home, obviously, you know? That's not very nice when it happens, but I just keep my fingers crossed for those. I mean, any pads wouldn't hold those anyway, sort of thing.
TRAVEL
Jonathan says don’t be afraid to ask for ‘passenger assist’ at the airport to reduce queuing time
Jonathan lives in S. W England
“Well, flying, again, be aware that if you're walking from the aeroplane to the baggage or whatever and there's a toilet along the way, use it. Before you stand in the queue, use it. If you're going through a time where this is an issue, use passenger assist. Don't be shy to use passenger assist to cut down on your queuing time. Make sure that when you can get to the toilet on the aeroplane, use it, because you don't want to be caught with the trolley in between you and the toilet or when the times are busy. Set your alarm clock or your alarm so that you get to the toilet before the plane starts to descend. And you can ask the crew, what time do I need to set my alarm for? Or, can you please alert me before the toilets get busy? Do not be afraid to ask for help. There's no shame”.
Caroline found that the toilets in the coach were too small and not clean and recommends using toilets at the coach stops instead.
Caroline lives in S. W. England
“I think recently I've taken a coach trip to [region] and back and that was difficult because the coach had a toilet, but it's actually very difficult to use the size of cubicle that they give you on a coach and so that was a bit tricky… it was just too small generally. But if you did need to clean yourself in other ways, it would be nigh on impossible with the coach swinging around. It was at the back of the coach. And obviously, you don't want to sit on the seat, especially the state of it. It wasn't very pleasant. So, it would make me really think hard about doing a coach trip again… Or planning it so you could get off at the stops and use a toilet, a proper toilet.“
Lydia travels by train and bus and because the toilets are often closed she carries a Radar key to access the disabled toilets.
Lydia lives in N. W. England
“I’ve noticed when I’m travelling, I can’t get to the loo. And a lot of train stations, you know, because I’ll take trains and buses now, they shut the normal loos, so I’ve got myself one of those keys for the people with less ability, disabled loos. I haven’t used it and I’ve only just got that because I’m hopping off up to [region] next week. And even when I’m travelling, I know I’m secure, I’ll wear a slightly heavier liner, etc., I’ll have a spare tucked in my bra for emergencies. (laughs) But I still don’t want to wet it, do you know what I mean? So, I want to, if I want to go to the loo, I want to go to the loo, so I’ve got a key. It better work. (laughs) So, that’s my only more reasonable adjustment that I’ve made and I’ve tied it to my phone so I’m never be out, you know, I’m never going to lose it.”
MEDICATION
Beth was taking medication for her dementia that was giving her tummy problems so she discussed it with the memory clinic and they took her off the medication.
Beth lives in S. E England
“Well, mainly it was the tablets I was on for my dementia was causing me a problem, but I do have a problem, and there are times where that is more of a problem than the other. It just keeps coming and I have to wear, then I have to wear the very big pads then.
Interviewer: And how did you realise that that was related to the tablets or the medication?
Respondent: Because I was told to come off of it, which I did, and it settled down. And then they discussed to try the patches because it's gentler and I haven't had a problem with those. … I couldn't get through to the GP, I couldn't get anywhere. So, in the end, I rang the memory clinic who has been, you know, I've been under their care as well. And they're the ones who said, ‘You must come off because we need you well and you could get dehydrated,’ because it was happening a lot.”
RELATIONSHIPS
Caroline has found that it can be hard to talk to others about her incontinence because they might not have accepted it yet.
Caroline lives in S. W. England
“Interviewer: For yourself, have you ever talked to people about it?
Respondent: Not really. I think people at the moment don't want to go that far and talk about it. There’s a certain amount of denial on that front.
Interviewer: From other people?
Respondent: Yeah, yeah, yeah, yeah.
Interviewer: Because I was going to say, what sort of stops, you know, we're interested in what stops people from talking about it?
Respondent: I think it's because it's the inevitable unfolding, isn't it? And…it depends how quickly people are coming to terms with what's happening and the change. And what their experience in the past has been, you know, people with a nursing background are not as fazed as people who haven't.
Interviewer: So, it sounds like it's because in sharing it with someone, it's almost as if you're bringing them into the story.
Respondent: Yeah, and they may be at a different stage of acceptance than you are.”
Jonathan and his husband share the same matter of fact approach to incontinence.
Jonathan lives in S. W England
“So, I'm very fortunate in that my husband also comes from the same culture that I do. So, he’s very concrete and solutions focused. Pee in the bed? There's no drama. There's not, “Oh my God, what the hell have you done?” It's okay. This is what happens. Let's scoop this up quickly before there's any leakage. In it goes into the washing machine. By the time I've had a shower, the bed is made. And there's no drama.”
STIGMA
Kenneth says that people in the Western World are not as good at talking about incontinence.
Kenneth lives in South Yorkshire
“The point I’m trying to make is that you are trying to sort of bring into mainstream conversation something that inherently as human beings, unlike any other species, we have had some sort of, you know, “It’s got to be private,” you know, “Don’t say that word.” There must be a million different words for poo, and even now, you know, people will sort of cringe when you say the word ‘xxxx’. It’s just another word for the same thing, you know. And that’s what, somehow, in the Western World, we’ve got to get over, because in other countries, you know, people are… I’ve done a lot of travelling in India and Asian countries, and it’s a much more relaxed, you know, it’s a bodily function …. So I think that’s the hurdle that you’ve got to get over first of all.…somehow you’re going to have to break down those barriers of actually talking about it in the first place.“
Roberta says there is a lot of stigma around incontinence and she remembers her father being worried about people knowing he was wearing a pad.
Roberta lives in N. W. England
“I think there's a lot of stigma around it really, especially for men. It’s like, “Oh no, it's like I'm wearing a nappy”. And my father struggled with it and he was in his 70s and my mum battled and battled with him to be able to wear them when they went out because he was conscious that people would know that he was wearing them. But eventually he did find a product that he felt comfortable with and it really is a lot of trial and error and everybody's different, everybody's different sizes.”