I was sat next to Paul the other evening while he ate his dinner. His nose was blocked from hayfever, so he was struggling to breathe with a mouthful, but watching him struggle to dip a piece of celery into his sour cream and onion and then lift it to his mouth was exhausting to watch. Not to mention the chewing. Paul’s jaw is now offset because his facial muscles are not strong enough to hold it in place. His tongue (a muscle) doesn’t move away from his teeth automatically, so he bites it quite often. This weakness also means he can’t move food to the back of his mouth in order to swallow it, so he normally wrestles with one mouthful for a good five minutes. These factors, coupled with his pollen-filled nose, meant the noise he was producing on this particular evening was akin to that of a farm animal that’d been starved for a week!
Now, you need to understand I’ve always had an issue with noisy eating. It grates on my every nerve. It infuriates me in fact. It’s not good for my rage! It’s actually a thing you know; it’s called Misophonia. Anyway, this particular aspect of the MND has tested my patience. It’s also been a challenge for Paul too. He has many, many, many oddities, one of them being a phobia of saliva, spit, and mucusy substances in general. Particularly the drooly, goopy-type stuff that hangs from the jowls of large dopey dogs, or the white, foamy bubbles that can gather at the corners of someone’s mouth when they speak. It makes him gag. Literally wretch.
I looked at him with a mixture of pity and irritation. Mostly irritation. The noise was unreal. He noticed me watching him, and knowing he was winding me up amused him greatly. He laughed suddenly, (he can’t stop this from happening anymore; another symptom), and out sprayed his food in all directions. Dribble was hanging from his chin as I scrambled about for tissues, chuckling at the ridiculousness of the situation.
“Someone is having a fucking laugh with me”, he slurred (his speech is pretty bad now). “He likes talking – oh, let’s just screw that for him. He likes eating – oh, let’s just make that a massive ball-ache for him. He hates saliva – oh let’s just prevent him from swallowing so he spits it out all over the place. Fucking hilarious! I must have been a mean fucker in a past life!”
He likes the word ‘fuck’ as you may have gathered. It was one of the first words he recorded for the voice bank.
“It just looks like such hard work”, I said, now genuinely concerned for him.
“It is”. He answered. Then continued on his quest, determined to finish what he’d started.
But although we laugh, the seriousness of the situation is real. The problem with the excess saliva combined with chewing and swallowing issues, is that choking is a major danger. You know when you eat a cracker, or some bread, or something dry like that and you accidently breathe in a crumb? Well that’s what it’s like for Paul all the time. As his throat muscles and lungs get weaker, it’s becoming increasingly possible that the next morsel he inhales he won’t be able to cough back up again. This in turn could cause an infection such as pneumonia, which we’re under no illusion will probably be the thing that kills him in the end.
So, he has been a very brave boy and had a consultation with the Gastro surgeon to discuss the fitting of a feeding tube, or ‘Peg’ as it’s known. The tube will be connected directly to his stomach, so that food and essential nutrients can be put straight into his body without the risk of choking. It won’t be a pleasant procedure. It will all be done under local anaesthetic and he’ll be in hospital for a week. He’s been putting it off for ages because he loves his food. He’s a greedy git in all fairness, but now it’s a chore for him and he’s started to skip meals which he can’t afford to do as he needs extra calories for energy as his muscles disintegrate. Paul’s solution up to now has been to supplement his diet with as much beer as possible. I’m quite sure he will attempt to connect said feeding tube to a keg of booze at the first opportunity; however I’ll just be glad to get essential nutrients into his body quickly and easily.
He will probably be admitted for the procedure sometime in September, when the holidays are over and there’s not much going on. Until then he will continue to slop and splutter his way through meal times. He will continue to burn himself on the oven and scald himself with the hot water. He will continue to leave a trail of destruction through the house (I can cunningly deduce where he’s been from the dot-to-dot of coffee drips on the carpet and the sticky splatters on the kitchen floor). I kind of lost my patience when an entire King Pot Noodle was dropped on the sofa, so he is now banished to the kitchen for the consumption of all foodstuffs. At least when I’m at home. I know full well that when I’m not around he loads the lift up with snacks, bumbles upstairs, calls the lift to the first floor and pulls his treats out into the comfort of the living room. Clever sod.
I will keep you all posted on the op’. He’s not looking forward to it, but the prospect of an intravenous intake of alcohol appeals to him. Plus, it might numb the pain of his frozen shoulder now that his bones have apparently fused together. FFS. There’s always something. I’m sure he just likes the attention.
Just had a thought… I wonder if I could get one of those tube thingys for Prosecco purposes? I should ask…