What I wish you all knew…continence care can be tricky

Continence care has been one of the most difficult challenges to navigate, not because of its sensitivity so much, but because it is yet another aspect of health and wellbeing that our health and care sectors do not consider from a dementia perspective.

Mum was becoming decidedly upset because, contrary to what many like to believe—even within our health and care sectors—people with dementia aren’t just away in their own wee world.

When you’re so deeply entrenched in caring, constantly just managing to keep up, it’s hard to see or think clearly about ideas or solutions for your problems that might be glaringly obvious to others.

This is true not just for continence-related factors; it is so often the case for many aspects of caring for a loved one with dementia. You are so involved, so deeply consumed keeping up with the hourly reality and keeping yourself afloat, that you do not and cannot see anything very clearly.

At first I didn’t believe that Mum was actually ‘incontinent’ because she was, and still usually is, aware that she needs the toilet and able to control her bladder and bowel movements.

It wasn’t relevant for us to be measuring how much she was drinking, how much urine she was passing, as the NHS assessment form required, because that wasn’t the issue.

I’ve since heard that there’s something called ‘functional incontinence’, which is when someone can’t get to the toilet quickly enough because of a physical or mental impairment.

Mum wasn’t having accidents because she didn’t know she needed; she was having accidents because she was confused and didn’t remember where the toilet was, or what her commode was, or what she was supposed to do with either of them. It was because even if she got there, she’d often forget to pull her pants down, or why she was there in the first place.

Thankfully, padded pants were one thing Mum didn’t oppose. I think that, at least overnight, there was a comfort for her in not having to get up and try to work out what she was supposed to do. Because she is so often aware of her confusion, I think something inside her was happy to surrender to making her life easier and more comfortable.

We did get granted a regular supply of pads through the NHS, but I found a very good-quality brand of padded pants online, and they really do work better and are much more reliable. They keep Mum clean and contained, and they save me an immense amount of stress.

Even now though, even with these amazing pants, we still have challenges. Dementia is always at work—always keeping you on your toes, always throwing in a wee surprise you’re not ready for. Mum might remove soiled pants during the night and leave them somewhere. She might stand in soiled pants as you’re taking them off. If you don’t get there quickly enough, her hands can be the colour of sick after she’s attempted to clean herself and continued on her way, rubbing her hands together as is her constant.

Often we just have to get into the shower and clean Mum, clean the zimmer, and clean everything she’s been in contact with in the minutes before I arrived—or throw it out.

She might remove dry pants and then have an accident somewhere. Sometimes, when she’s had a very, very long sleep and therefore quite a number of wees, the pants will have leaked. She might then get up, but sit back down on her pillow or duvet cover, and so everything gets wet.

I use an incontinence bed sheet in her bed, with the intention that that’s all I need to change, and it does help a lot, but it isn’t failsafe either.

Thank you for reading my story.