Food, terrible Food

Nick’s hobby used to be going out to lunch. It’s still a prospect that can light up his eyes, like a dog hearing “Walkies!”

When he was living in the north-east and still getting around on buses, he would go out for lunch at least twice a week and then text me to tell me where he’d been. Café Rouge in Durham. An Italian restaurant on the outskirts of town but just a bus ride away. A new café that had opened on the High street. The local pub, just a few minutes’ walk away, if he wasn’t feeling particularly adventurous.

What did you have? I would ask, like the mum in the Royle family.

And he would describe what he had eaten and, “My goodness!” I would say, “Where on earth do you put it?”

When I visited with the car we’d always go out for lunch somewhere that he couldn’t so easily get to on the bus and we found some great places – and some not so great. The school dinner style Sunday lunch with packet mashed potato was definitely a low point, though Nick had second helpings of jam roly-poly and custard.

As a vegan there was one memorable meal of spinach and chips (actually, delicious) as the only things on the menu I could eat, while Nick gaily tucked in to a three course French banquet. I was driving, but around half an hour in, when Nick’s on-the-shell seafood starter arrived and I realized how long this was going to take, I ordered a large glass of red wine to see me through, reckoning I’d be in a far worse state without it.

But gradually the going out to lunch stopped and when I asked on the phone, where did you go today, increasingly the answer was that he hadn’t felt like it, he’d decided to stay home and chill out. What had he had for lunch? Oh, a sandwich from the supermarket, or sometimes a microwaved ready meal.

Now he is here and living close by, it has still taken a while to register that Nick is having trouble eating. At first I thought it was the cutlery, so we made sure he had knives and forks - and increasingly, just spoons - with sturdy handles.

Then I thought it was certain foods like spaghetti that were giving him so much trouble. I mean, eating spaghetti is an art at the best of times. Then of course it was the fact that he had broken his collarbone and had his right arm in a sling so he found it difficult to use a spoon left-handed and needed some help.

But really it’s none of these things. It’s the actual act. The physical process of eating.

Like a weak baby struggling to feed, it takes so much energy for him to lift the spoon to his mouth, get the food in, chew and swallow, that he burns more calories than he can ingest. Having food in his mouth makes him cough and gag, sometimes spluttering for air, and he can’t sit still, constantly rocking himself away from the table, arms flailing.

It’s such a laborious process that he’s exhausted half way through and gives up.

“I’ve had enough.”

But he has to eat. He really needs the calories.

When you have HD it takes so much energy just to sit in a chair that if you don’t eat enough you can lose an awful amount of weight very easily and be much more susceptible to illness. But the whole process becomes so tiring and traumatic that it's easy for people to start avoiding food altogether - ravenously hungry but afraid to eat. What if they choke? Just too much like hard work. I have started to see this happening with Nick.  

So, like the mother of an anorexic child, I have to sit with him and soothe and coax so that he will accept another spoonful, and another until the plate is finished.

Yesterday I went to visit after a rare evening out. I knew he’d been to the pub with his occasional carer for a late lunch in the afternoon and had evening carers coming in who would make sure he had something to eat then.  I’d left out a plate of easily-assimilated finger foods for him, bite sized pieces of quiche and sausage rolls, things he really likes.  But when I called in next day, around 2 in the afternoon, the plate was still there, food intact under its cling film, untouched. 
What did you have for tea last night? I asked. He couldn’t remember. I scanned his fridge, work tops and shelves. Looked in the bin. The only thing that had changed in twelve hours since we’d last seen him was the emptied box of wine. He had just…forgotten. 
"Weren't you hungry?"
He shifted uncomfortably. Worse than forgetting, I realised - he hadn’t felt like it. Eating was becoming just too much trouble.

Why hadn’t the carers picked up on this or helped? I looked at their notes. They had offered to get him an evening meal but he had declined and said he’d get himself something later. They had believed him.

Now, I am not a person who ever forgets to eat unless really in extremis, but I realise that there are other weird souls who do. Nevertheless, this was a real shock.

The thing is, Nick really needs not to forget, and not to feel as if eating is a scary exhausting experience best avoided. So we have to make it a social occasion (despite the fact that it’s an alarming experience to dine with him, with all the coughing and crumbs and knocked-over glasses and spoons ricocheting across the floor) and be as calm and matter of fact and jolly as possible.

It’s a bit like having a toddler all over again: carefully choosing foods that will be manageable, enjoyable, nourishing, neither too bland or too spicy, that will not go down the wrong way. Because he’s got to eat. He’s got to keep wanting to go out to lunch and somehow – whatever it takes – when it comes to eating at home, we’ve got to start a new routine for a sociable, fine dining experience chez lui.

I’m not going to let him give up and not bother. If I have to sit with him every single night just to make sure he eats, then so be it. But it would be good to have company, too, so that he doesn't feel so isolated. So that I don't feel so isolated, for that matter.
Anyone up for a new, extreme-sport supper club experience? You know where to come.