[N.B. This post is about caring for someone with a PEG. For a perspective on living with motor neurone disease and a feeding tube, please click here.]
Three weeks ago, Mum finally had her PEG fitted.
Right from the start of this journey, we knew she needed the PEG. By the time we received her diagnosis, her swallowing was starting to deteriorate. It could take her up to an hour to eat food.
It was such a gradual decline that we didn’t really notice until a few weeks before she went into hospital. She had learnt that leaning forwards or looking down would make it easier to swallow, so that’s what she did. She naturally adapted until it had progressed to a point that we couldn’t miss it.
I suppose I should explain what the PEG is first. PEG stands for Percutaneous Endoscopic Gastrostomy, and it is essentially a feeding tube which goes directly to her stomach, meaning she can take her medication and receive essential nutrients without the struggle of swallowing, and of course the choking risk.
We have had to fight for this. When you first get told something as huge as ‘you/your loved one has MND and they need this operation as soon as possible’ you go into desperate overdrive. You’re hit with so much information, and it is so hard to sift through it all. We latched onto this need for a feeding tube and were locked into a battle to get it done as soon as possible.
It has been hanging over us a little, and it is a relief that it’s now been done. Nobody feels that relief more than my Mum.
‘So,’ I hear you ask. ‘Why is this blog called Fear is Psychological?’
Last weekend, when I knew I had to face Mum and her PEG for the first time, I was scared.
I didn’t know what to expect. I did a little research, as I usually do, but I just didn’t want to look at it. The idea that the tube would be directly into her stomach was a little much for me to get my head around – and Mum told me that she felt the same, before it was fitted.
I felt sick at the idea that I would have to learn how to use the PEG. I wanted to run away and pretend it wasn’t happening – but we can’t hide from this. Every obstacle must be faced, and we must take a deep breath and tackle it, because there’s no coming through the other side if we don’t.
It was all psychological, though. That fear, the apprehension – it was all in my head.
The PEG is actually very easy to use. If, like me, you’re happiest with order and routine, then you won’t struggle. There’s a neat order.
Mum is still eating food, so she just used the PEG for medication. The order is simple. Crush the tablet, add water, stir. Clean the tube with sterile water, syringe in the tablet solution, and clean it again. Done.
TOP TIP: ALWAYS MAKE SURE THE CLAMP IS CLOSED
If I had allowed myself to run away and ignore the feeding tube, then I would have been at a disadvantage. Although Mum is using the PEG herself, we have to prepare for the day when she can no longer do that.
Allowing fear to overcome me would have hindered my ability to care for her, and support my sister. It would have meant that we could never be alone together, because I wouldn’t be equipped with the necessary skills to feed her and give her all the medication she needs.
It’s natural to be scared. This tiny tube – it is so much thinner than I’d expected – is going directly into her stomach. She’s still sore from her operation, and I didn’t want to hurt her. I didn’t want to make a mistake. I put so much pressure on myself to get it right, but when I took that deep breath and did it, it was ok.
Fear is psychological, and to care for someone you have to move past that fear and face the practicalities. You’ll probably find it isn’t as terrifying as you thought it might be.
* * *
This is my perspective, as a carer and, more important, as a daughter. It’s very different for my mum. It’s her PEG, and her diagnosis. I cannot accurately convey what she is going through.
But she can.
You can read her blog about the PEG here.