I’ll give Jamie O’ a trampoline for christmas if it’ll help him jump on this bandwagon

Right… I need your help! Anyone who’s been within five feet of us knows what a headache it is getting through the day, and you think you’re just getting somewhere and then somebody says: ‘What’s for dinner?’

I know this can be a mild form of irritation in most households, but in this one there’s very limited preparation time, a lot of restrictions, and there’s always the possibility it could cause a fatality through choking. No pressure then!

Firstly, the muscles that Neil uses to chew are now quite weak and and his swallow action is beginning to be a problem. There have been some mild choking incidents. These can be caused by something as simple as water, but just imagine you’ve had some water ‘go down the wrong way’ and you don’t have the ability to cough, it’s pretty scary.

Louise (still from I AM BREATHING)

I know it’s scary to watch. I have to run to his ventilator and whack up the pressure as quickly as possible, get him sitting forward and guess when he’s trying to cough so that I can push down on his lungs to help force more breath out. I’ve been lucky so far that every time it’s happened there’s been someone else around to help me sit his dead-weight forward. You can do it with one person but you have to support his head with your shoulder and make sure you stay away from his windpipe. I’m not trying to be shocking here, I’m just trying to point out why Neil might be a bit nervous of what he tries to swallow. Choking is one of the biggest fears of an MND sufferer.

So I think it’s best to list the restrictions and throw the challenge out there, I need ideas!

  • Nothing difficult to chew
  • Nothing spicy (including black pepper)
  • No vinegar
  • No pastry
  • Nothing with a shell or skin (eg. peas, beans)
  • Nothing with a crumb (although he seems willing to make an exception for cheesecake)
  • No rice (too much chewing effort, not enough weight gain)
  • No salad (see above)
  • Nothing that can become ‘claggy’ in the throat (eg. chocolate!)
  • Fish is difficult to swallow and he’s nervous of the bones
  • Can only eat bread if it’s fluffy white and laden with butter
  • Nothing stringy (eg. celery, pak choi, mozzarella)

I think it best to add that he’s utterly sick of:

  • Cottage pie
  • Lasagne
  • Moussaka
  • Stew
  • Omelettes

And things that have been a winner recently:

  • Corned beef hash
  • Stovies (with skinned sausages)
  • Spaghetti bolognese (having been cooked, then frozen and re-heated, this seems to make the meat easier to chew)
  • Fruit salad with soft, non-stringy fruit

Although he’s bound to get sick of these too!

Ideas please, don’t worry about recipes unless necessary, I can google them.

Love
Louise x

PS. Oscar will eat anything he can pick up with his hands and smear in his hair.


I dread to think what the staff must have thought of me in the local supermarket. I’ve worked in retail and seen the CCTV screen shots of suspicious people pinned up in the corridors of the staff area. As I said before, this place was my escape, but that was largely due to the clothing section and the coffee shop. When it came to the more important business of food shopping, I walked around in slow motion, staring blankly at the shelves. I would pick something up, look at it, then look around me for inspiration, debating in my mind whether I was holding a food that Oscar would eat and that Neil could eat. Then I would calculate whether it would save me any prep time… then most likely I would put it back. I was convinced my behaviour looked like I was working up the guts to stick something in my pocket.

Food was a headache and one that I made more painful for myself by not wanting to resort to ready meals. It was one of the last realisations that I had about Neil’s illness, no matter what I fed him, it was not going to make him any healthier or keep him alive for longer. I should have given in and let him live on tinned pasta and tomato soup a lot earlier. My head was in a place where I had just gone through feeding up a baby. Oscar had been breastfed till he was one and given mainly homemade food. If I had bought ready made baby food I chose the organic, no added sugar, no added ‘nasties’ type. I was slow to realise that Neil just needed to eat, it didn’t matter what was going in to his body as long as he could swallow it and he could gain weight from it.

I did try ready meals, but they all tasted the same, primarily of salt. I wouldn’t give them to Oscar so they didn’t save me much time as I was making him food separately. Neil’s senses were untouched by motor neurone disease, he had the pleasure of taste without having to worry about weight gain, heart disease or diabetes – none of these things were going to kill him. In his physical state, he should have at least had the pleasure of being able to eat whatever he liked. It was yet another cruelty that most of the food he wanted to eat gave him a fear of choking. He even gave up his beloved chocolate. When I first got together with Neil, I had to learn quickly that he wasn’t joking about the top shelf of the fridge being reserved for beer and chocolate.

Again, our fantastic friends and family came to the rescue and started to fill up our freezer with home cooked meals. – Louise (2013)

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Showing 4 reactions


commented 2013-04-11 16:16:06 +0100
Comments on Louise’s original blog post:

Gill
December 22, 2008 at 5:04 pm
At the risk of sounding like a jibbering patriot… what about haggis? Maybe not the normal variety (because (a) it’s disgusting and (b) it can be quite peppery) but veggie haggis, or white pudding, or black pudding, with bashed tatties and neeps?? Unless the oatmeal would be a problem?

Variations on the theme of what seems to have worked so far…

Shepherd’s Pie – well, it’s a bit different from Cottage Pie
Tuna – no bones and could be mashed into crumbless fishcakes
Tagliatelle & tomato and mascarpone sauce
Ratatouille
Chicken Chasseur / Fricasse / Coq au vin
Meatballs – cooked slowly until vv soft and could be mashed up / cut v small
Baked eggs
Macaroni cheese? Bit low on nutritional value (but yummy)
Stewed apples / pears with custard / ice cream
And – soup! in any disguise you can think of.

Most of those can easily be smeared onto hair / face / mummy / any surrounding furniture so might keep Oscar happy too. But sorry, apart from that, I’m drawing a blank! I don’t envy you…

Do you have a pressure cooker? My Mum still swears by hers for cooking lots of different things at once, quickly, and until they’re deliciously soft…

Hope you have a good Christmas – as ever we hope to get down at some point soon; but seeing as I’m off work from now until 12th Jan it might actually be a possibility this time!

G
x

Douglas
December 22, 2008 at 9:30 pm
Guinness,

Lambs liver, mushy peas, sweet potato & parmesan mash with ox-tail gravy

Guinness,

this sounds nice for pudding http://uktv.co.uk/food/recipe/aid/602561

I also hate to suggest this but in my extensive experience of vegetarianism quorn is easier to chew than conventionally grown meat.

Mark
December 23, 2008 at 8:48 pm
Hi Louise,

Neil may already be having this but have you tried Fortisip?

When I was caring for someone with mnd we found that in the Fortisip range there is one with a yoghurt type consistency. It’s not too thin like water and not too claggy either. This is a good food supplement when swallowing becomes difficult.
I’ve put the link below for the manufactures website.
http://www.nutricia-clinical-care.co.uk
We got the fortisip provided free on prescription.
All the best to you all – Mark

Caitlin
December 23, 2008 at 10:45 pm
Ahah, a subject that I am good at!!

As someone who doesn’t eat dairy, has a friend with a wheat allergy,gluten allergy, friend of toddler that doesn’t eat lumps, Dad who is very fussy and Aunty to neice who only eats turkey dinasors I am up for a foodie challenge!

The first ones on the list are basically alot of what I eat every day! Sorry if they are rubbish suggestions but I hope that you can use one or two of them.The ones in the middle are me getting inspirational! The couple at the end are from a chef friend of mine.

In no particular order!

Smoothies. My favourite is one with a glass of soya milk, spoonful of lovely Scottish honey and a banana. I buzz it with my stick blender. Sometimes throw a handful of strawberries or blueberries too.

Porridge (Being a true Scot) I chuck in a handful of wheatgerm, spoonful of honey and handful of raisons. The hot porridge softens the raisons.

Honeyed Carrot soup – I am living on this soup at the moment and make loads then freeze batches of it. http://www.bbcgoodfood.com/recipes/4852/honeyed-carrot-soup. I guess leave out the chilli.

Butternut squash, ½ a red onion, sweet potato soup with a dollop of crème fraiche.

Cheese soufflé -www.bbc.co.uk/food/recipes/database/foolproofcheesesouff_65612.shtml

Hummous and rice cakes (The big puffy ricecakes that melt in the mouth!)

½ a very ripe avocado mashed with mayonnaise.

Sorbet (M & S do a lovely one!)

Maccaroni cheese made with the mini pasta shapes that you can get. Perhaps dice onion and very finely bacon through it.

Tiny pasta shapes with pesto mixed through.

Pasta with spinach and crème fraiche and spinach. I use this recipe http://www.jamieoliver.com/recipes/pasta-and-pizza/tagliatelle-with-spinach-mascarpone-Wondering if you could use fresh pasta and chop it into tiny pieces before cooking with kitchen scissors ? or tiny shaped pasta.

Stuffed Butternut Squash http://www.channel4.com/food/recipes/chefs/hugh-fearnley-whittingstall/stuffed_butternet_squash_p_1.html

Squash type soups with coconut milk in would up the calorie content

(tinned) tuna with pasta in a tomato sauce with pulverised veg

Sweet potato mash, mixed with normal mashed potato to give it a bit more substance (I think I mixed in a spoon of philadelphia to add some calories).

Chicken, poached to make it soft. Perhaps blend this up with some broccoli to make it easier to eat.

Apple sauce with golden syrup in.

Ready made gnocchi in a nice sauce

Rice Pudding

Chocolate mousse

The following are the suggestions of a chef friend of mine who I emailed……

1)For something easy to eat and very nutritious, beef tea is very good. It’s basically beef stock with added vegetables, strained so it’s just a liquid when drinking.

2)How about fish mousses? They’re tasty and easy to eat plus are calorific. I know it’s also fish, but what about poached fish in milk?

3) I sometimes make something called ‘American Pie’, though I don’t know how American it really is. The magic ingredient is supposed to be baked beans but you could definitely leave those out.

It’s basically turkey mince fried with onions and mushrooms together with a bit of garlic, tomato puree and what gives it the flavour – BBQ sauce. Turkey mince is much lighter than beef mince and also quite a bit healthier.

Then you make the topping – a mixture of potato, carrot and swede – boiled until soft, then mashed up to give a really tasty pie topping.

Spoon the meat mixture into the bottom of an oven dish, then top with the multi-mash (is that a word??) and bung in the oven to warm through and crisp up on top. You could also grate some cheese on the top if liked.

Much love to you,Neil and Oscar

Caitlin x

ps sorry this is so long!

Brian, Jane, Kayleigh and Jennie
December 26, 2008 at 9:43 pm
I can second this recommendation, Louise:

“For something easy to eat and very nutritious, beef tea is very good.”

If your Great-Granny, your Poppa or your Great Auntie Marjory were here (I feel them channelling through me as I write), they’d be in your kitchen boiling up a big pot of beef tea. The scottish remedy for what ails ye. Or whatever a cuppa tea won’t cure!

cheers
J

Catherine
February 1, 2009 at 5:57 pm
Hi, I really struggled when I kept being sick on everything but did well with the following.
Bread and butter pudding – you can add what ever fruit you fancy and quite good for calories.
For a change on lasagne use thinly sliced potatoes instead of the pasta, still getting carbohydrate. Like someone else has already put turkey mince is def less harsh than beef mince.
Asda do a tin of skinless and boneless salmon can be mashed up with potato/veg and served with runny egg yolk -alternative to corned beef.
And one that son and dad should both enjoy – sponge and custard can include fruit if you wanting to be healthy!
Trifle.
I know soup features highly in other suggestions but Lentil soup.
Also have you tried mashing/liquidising indiviual components of a meal then they retain their own flavours instead of becoming mush
Also there is a milk shake style drink cant remember the name put freely prescribed on NHS CHoc or vanilla flavours the best.Hope this helps.
followed this page 2013-04-04 18:14:35 +0100
commented 2013-04-03 21:12:57 +0100
The part about the chocolate and beer shelf is Matthew all over. It’s lovely to read about their similarities. Thank you.
@breathingfilm tweeted this page. 2013-04-03 13:17:58 +0100
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