Managing Continence: What Helped Me as a Carer

Kirsty Stephenson
Oct 9
5 min read

Continence means being able to control when you go to the toilet. Anyone can experience continence difficulties at different points in life, but it is particularly common when someone is living with dementia. Changes in the brain can affect how signals are received and processed, making it harder to recognise the urge to go, find the toilet in time, or communicate the need for help. It can be upsetting and sometimes embarrassing for both the person and their carer, but there are many practical ways to manage it and stay confident at home and when out and about.

This story was shared anonymously and with good humour by a Good Company member to help others facing similar challenges

My husband is living with dementia and we never had a chat about what our red lines were when it came to caring for each other.

I know Meatloaf will do anything for love, but he didn’t say what he wouldn’t do. My husband and I never had that conversation, partly because we had no idea what was ahead of us. I wish now we had talked about what we were willing to do, or have done for us. If the shoe was on the other foot, I don’t know how happy I would feel with my husband helping me when I wet myself or helping me wash. We were never the couple who went to the toilet in front of each other.

So if you are reading this and you still can, I would recommend a stiff drink and a conversation covering worst-case scenarios. It’s something I wish we had done.

When my husband started to have incontinence issues, I didn’t want anyone to know that this proud, accomplished man had wet himself, so we went out less and less and our world shrank. In hindsight, we became much more isolated, and because I didn’t have anyone to talk to, I became more frustrated with him. I wanted to understand why this was happening, so I went on a training course to learn more about what it was like for him living with dementia.

I learnt that as the cells in his brain were dying, messages took much longer (and sometimes didn’t get through at all). His bladder might send a message to say, “I need a wee,” but by the time the message arrived, it was too late. When I understood this, I realised that I needed to prompt him to go to the toilet to help prevent accidents.

I learnt a lot along the way which I want to share with you. I am no medical expert and this is by no means medical advice. These are simply things I wish I had known.

1. Infections

When my husband was more confused than usual, going to the toilet more often or wetting himself, I learnt to always check for an infection. Getting a GP appointment was sometimes tricky, so I bought home testing kits. They’re not medical grade and doctors always did their own tests, but if they came up positive I knew to act fast and push for antibiotics, as an untreated infection can lead to delirium which can be very frightening.

2. Medication and exercises

One thing I had no idea about was that medication might help. We were also told about pelvic floor exercises. He didn’t understand them, but they turned out to be useful for me, as there have been a couple of occasions when I sneezed and it didn’t end well.

3. Hydration

We walked a tightrope between him not drinking enough and getting dehydrated (which can lead to a UTI) and being desperate for the toilet too often. We focused on steady sips throughout the day instead of saving up and drinking all at once. I downloaded a free “Drink Water” app to remind us both to keep hydrated. My husband is a Yorkshire man and loves his tea, but I switched to decaf after lunch, which reduced the evening rush.

4. Getting support

We were referred to the Bladder and Bowel service by our GP, but I later learnt I could have referred us directly. You can do this by typing “bladder and bowel NHS service + your town or county” into NHS.uk. They ask you to log what goes in and what comes out over three days. This was not as easy as it sounds, so I just ticked instead of writing exact amounts.

5. Finding the right products

I never thought I’d know so much about adult pull-up pants. Most local authorities provide free products, and the reason they ask for measurements is to help determine the right size and absorbency. When it came to wearing pads, my husband did end up looking a bit like an extra from the Rocky Horror Show. We were sent a pair of tights the size of cycling shorts with pads, but the pad wouldn’t stay in place. I remembered when I had my period and how the pad used to stick to my knickers (that bit was missing). We ended up buying pull-ups. The NHS recommended TENA, and they felt more like real pants, which gave me confidence when we were out and about that he wouldn’t leak.

6. Getting out and about

I always worried about where the nearest toilet was. There’s a brilliant organisation called the Bladder & Bowel Community who created the Just Can’t Wait Card. If we were out and my husband needed the toilet, I could show the card to a shop assistant who would kindly let us use their facilities. I also kept a Radar key on my key ring – it costs about five pounds and opens all disabled toilets. Another great resource is The Great British Public Toilet Map, which gave me peace of mind when planning trips.

7. Keeping life normal

I was determined to keep us doing what we enjoyed – visiting the National Trust, going to the cinema, and going for walks. This was possible but needed more planning. I had a “go bag” packed with spare pull-ups, wipes, nappy bags, a bottle of water, a spare pair of trousers, and our Just Can’t Wait Card.

8. Getting help at home

In the end, I arranged for a personal assistant to help him each morning with washing, dressing, and medication. I realised I was waking up every day with a sense of dread, knowing I’d need to summon all my diplomacy to coax him into the shower. By outsourcing that support, I could wake up more calmly, take a bit of time for myself (or catch up on sleep after a rough night), and enjoy breakfast together.

I hope this helps. My biggest advice is to seek support, because you are not alone and many people are going through the same thing. Be kind to yourself.

If you are caring for someone and worried about continence, speak to your GP or community nurse for advice and support.

Travel well, my friends.