In which I confess to feelings of guilt and resentment…

Blog post written 6^th February 2015 

It’s hard to believe that a year has passed since the PEG was fitted.  I read over my February 2014 posts the other day and reflected on those dismal days: 

“One Man and His PEG”, “Twist and Shout”, “Leaky PEG”.  

Well, one year later and Roch is still eating, although now we feed his meals to him. He can still eat a lunch and a dinner although in smaller portions and the food has to be cut into bite-size pieces. More and more I find myself becoming preoccupied with his nutritional intake.  I’m very conscious that he won’t always be able to eat so I want to make sure he gets the food he likes, the meals he enjoys.  He can’t stand up anymore so we haven’t weighed him lately. It’s hard to tell if he’s lost weight, just looking at him. The last time the nutritionist came to visit she told me that she thought he should be having 30ml calogen (concentrated protein) bolus fed 3 times a day. I felt guilty as he only ever has one calogen feed a day. It makes him feel full and he wants to eat real food for as long as he can.

He starts off the day with a fortisip for breakfast.  We usually get some lunch into him – sausages, tomatoes, white pudding and egg or spicy noodles with a fried egg on top – these are the current favourites.  Recently he’s even had a buttered crumpet for a snack in the afternoon. Then, later, it’s the calogen feed – but not too late in the afternoon or it takes away his appetite for dinner. He usually has a good dinner, although the portion is smaller. So it’s about gauging how much he’s had – has he eaten enough, should we be giving him another fortisip? More calogen?  He says swallowing isn’t a problem but to my eyes it looks like he has to put more effort into it.

Sometimes it seems that my whole day revolves around feeding him and I feel bad because I can feel myself resenting it. I think of my parents, and how my mother spent so much time in the kitchen, preparing meals. How, when we were on holiday, so much of her time seemed to me to be wasted on food preparation. Why couldn’t we just have had a picnic? Thrown some snacks in a bag and headed off into the sunshine? Instead, we sat together in hot stuffy kitchens in various beauty spots around Ireland, eating chops and gravy with mashed potatoes in the middle of the day, or dragging our heels with my father in the local butcher’s shop, while he chose the best cut. It was the way they wanted to do things, I guess, two hearty meals a day. She probably wasn’t unhappy in the kitchen – I hope – and my father did his share too, but I hated the thought of being stuck in the kitchen when there were so many other things to do. Even as a child I viewed it as a waste of their time. I vowed that when I was grown up, I would do things differently. 

So on the days when I am tied to the kitchen cooking sausages at lunchtime, through my frustration the irony is not lost on me. And of course, it’s the usual Carer’s package of conflict and guilt. Because I know that when the day comes when Roch can no longer eat a sausage, I will look back on these days, and weep for their loss.