Feeding ideas

[Kevin_1]

Hi Folks

We had the Speech Therapist out earlier in the week to assess the best way for Liz to eat.

Liz has a slowed swallow reflex and is prone to choking on her food. We have been making the food softer and finer gradually over some time. Now a pasta sauce for example, will be liquidised and the pasta chopped up in a food processor.

The carers feed Liz by holding a spoon full up to her mouth and then pushing it in like a bulldozer with a fork.

However Liz is having increasing difficulty opening her mouth to accept the food.

My solution was to get a cake icing syringe and push a couple of cm (1") of food grade clear tubing on the end and to squirt the food between her teeth and her cheek. Thanks for those on the forum who told me this method. It works very well indeed.

The speech therapists take was there is a danger of there being an excess of food squirted in and, with her slowed swallow and inability to cough properly, her air way might get blocked.

The speech therapist recommended that when we need to we move to teaspoon sized silicon covered teaspoons. One to hold the cheek open and the other to put food in.

My thoughts on this: Try it on yourself - every mouthful is an unpleasant experience.

With great care the syringe does work well and is comfortable for the recipient. Yes, squirting in four table spoons full at one, by mistake, could be very serious indeed. I would ask how often you might have done that icing a cake? Like as in never?

The only other thing I can imagine we do is to move to is feeding liquid from a cup. It would be a shame to move to that stage before we have to.

Some last thoughts on the icing syringe. I opted for clear plastic so that I can see how much is going in. It does not need to be sterile as might a PEG as it is going into her mouth.

A large re-usable PEG syringe might do equally well, but I see they have a narrower opening in their throat, not the end, and so the food would have to be fully liquidized and not too thick.

I've gone as far as I can on this now. The comments I got here when I floated the idea have been really helpful - thanks.

More ideas and comments are most welcome.

Warmly

Kevin

[aliciamq]

Like your idea best👍🏼

[Kevin_1 in reply to aliciamq]

Thanks - We just had the manager of our Care Agency around - She said liquidise everything to the consistency that will suck up in a straw... Food is one of Liz's few remaining pleasures. The manager could not get that texture and areas of food with different flavours makes for a harmony on the tongue.

Sighs!

[doglington in reply to Kevin_1]

I know ! In same boat, except that Chris can open mouth. Its amazing what can be pureed though - still taste - but lose the texture.

His mouth is closed but when I touch bottom lip with the spoon his mouth opens like a bird !

sighs back x

[Kevin_1 in reply to doglington]

I should have a small test kit for Liz it should include a piece of chocolate... I reckon even in a coma waiving it under her nose would cause her to grab it and open her mouth.

Thanks for the mouth opening tip.

We are hitting quite a few game changing things right now. Speech fading and enuresis at night with pads not being effective enough (double pads to be tried tonight).

Let's just keep sighing and taking the next step... We've got this far.

xx

[doglington in reply to Kevin_1]

I feel we're in one of those old swashbuckling films when Errol Flyn backs up the spiral staircase, fencing dramatically. We are going to be trapped in the end and there will be no cavalry !!!

These images keep me amused - -

xx

[Kevin_1 in reply to doglington]

I like it!

Chuckles.

[jillannf6 in reply to Kevin_1]

me too

lol jill

xxxxx

[Hidden in reply to jillannf6]

Nice to see u you Jill,been awhile.

[Cuttercat in reply to doglington]

I'll try the bottom lip. Tomorrow we are getting gel for the jaw pain. If it works we may have smooth sailing. I'll take whatever I can!

Cuttercat

[Kevin_1 in reply to Cuttercat]

Hi Cuttercat

What Gel please?

Thanks

K

[gypsywoman1947]

So interesting to read your post Kevin. My husband won't open his mouth properly...on reading your post I now realise the word should be "can't". It hadn't dawned on me . Even feeding cup is a problem.

Also ..the pads !!! He is doubly incontinent and has a catheter . Carers told me the pads should be supplied to me free of charge. I'm getting through about 4 a day. On application I'm told he is not eligible for pads as he has a catheter. !!!!! I feel like dumping my dustbin full if soiled pads on their office doorstep. Who the hell sits and makes these rules up ??!

In the scheme of things it's the least of my worries

Best wishes to you both xx GW.

[Kevin_1 in reply to gypsywoman1947]

Hi GW

Their having a laugh.

Just telephone them. Tell them you are confused and that you can't understand why pads are not for faeces. Thank them for their help and ask someone for advice as you are about to write to the CQC and ask for theirs.

It should not be like this.

Best to you both

Kevin

xx

[gypsywoman1947 in reply to Kevin_1]

Love it ....I will indeed. X

[Yvonneandgeorge]

Oh how I hate PSP . Kevin a clever idea, Jean George opens his mouth, takes ages to eat. So frightened off the next stage. Kevin I admire you, well all you careers out the deserve a medal, our loved ones are being well looked after thanks to you wonderful careers xxxx Yvonne, our holiday barn is amazing, got George settled in no problems, Xxxxx

[Kevin_1 in reply to Yvonneandgeorge]

Thanks for the encouragement.

I learn here and think - I guess it is how communities work.

sometimes its the smallest comment in a post which moves Liz and I through an issue. I have everything to thank for here.

Holiday Barn - You are on holiday?

Wonderful!

Waiving happily to you both

xx

[doglington in reply to Yvonneandgeorge]

Holiday barn sounds great. How do you move George ? Can he bear his weight ?

xxx

[Yvonneandgeorge]

Yes we have taken George to Norfolk for a week, family gathering and loads of help, everything crossed xxxxx

[Kevin_1 in reply to Yvonneandgeorge]

Big grins and wishing you a wonderful time.

If it floods just give BargiePat a call.

xxxxx

[Yvonneandgeorge in reply to Yvonneandgeorge]

With a lot of help his legs are wobbly we use a rota stand car was overloaded xxxx

[doglington in reply to Yvonneandgeorge]

Oh, have a really good break, Yvonne xxxxxx

[Yvonneandgeorge in reply to doglington]

Thank you Jean xxxx

[Tippyleaf]

Hii Kevin

Just a thought, though you have prob tried could you have 3 syringes and divide food into carbs veg meat so that Liz could taste each component of the meal separately . I realise this would be much fussier but maybe a Sunday lunch treat or something.

When weaning children I used to batch cook and freeze in ice cube trays so a tray of spinach, carrots , chicken etc. .then just defrosted an ice cube at a time as needed..

I admire your care and tenacity Kevin and continue to learn much from you

Sending love to you and Liz

Tippy

[allotmentartist]

What a good idea Kevin mick is not at this stage yet but I have squirreled it away for the future .

[NanBabs]

Thank you Kevin,

We are at this stage too and every drink or meal is becoming difficult. We are waiting for an urgent (??) visit from the SALT, so I am now prepared to suggest your syringe ideas.

xx

[Kevin_1 in reply to NanBabs]

I would be very interested in what they say to you.

xx

[Julieandrog]

Hi

My mantra whatever works! We have these straws that the liquid stays in the tube so it is so much easier for them to drink.

In a similiar place, rog from the begining has declined peg feeding, i support him in that, but it makes getting food into them so important but very stressfull, i use the fortified drinks to get the calories in, they do chocolate! Oh and double cream on everything.

Suns shining here

Julie

Ps straws are from amazon sorry cannot remember name🤔

[Kevin_1 in reply to Julieandrog]

Hi Julie

"Whatever works" works for me. My problem is that Liz does not like me feeding her. So I have to get something going which the Care workers are prepared to do. So the Manager saying, "just switch to fluids." was a bit of a downer. The manager went on to say she has most of her food as smoothies and Nutribullets. I so much wanted to say to her that I have yet to find a good gourmet restaurant serving food like that.

Yes, Liz has said she won't have a peg too. As you say it does make things more stressful.

Thanks for the tip on the straws - I will go and have a look now.

Suns shining here too and Liz has friends over for lunch and he afternoon.

Wishing you both a good day.

Best

Kevin

[AnaBri]

Thanks for such a great idea Kevin. Our doctor kept saying we needed to thicken liquids and don't eat rice or anything that could choke my mom. We said goodbye to rice but couldn't figure out how to thicken her liquids because she loves drinking plain water... now we're at a stage that either we make a fast curse on home made baby food and jello or she would have to have a gastronomy extremely. We started by putting applesauce in her tea and juices, so it makes them ticker, she loved that (she can still open her mouth some and is able to use a straw for beverages). On food, I have managed to puree everything from some chicken with steamed vegetables to Chinese food. I do try to puree everything separate, it is much more work, but my mom loves her food so much, and that way she can still enjoy different flavors in a meal.

I make my own apple- pear and peaches sauce. I divided it and freeze everything according to size. I just wish I had more time to experiment... But I know, desease advances too fast. I hope this is just something we'll get used

[doglington in reply to AnaBri]

The hospital supplied a thickener called "resource " to make a thick water and add to juices etc.

I do also blend rice with curry sauce - of course you lose the rice texture. Chris seems happy with everything mixed up as long as its tasty.

He just struggles more and more and it is so sad.

love, Jean x

[AnaBri in reply to doglington]

Thank you so much doglington! I didn't know anything about "resource" but I knew there most be something out there, now I know thanks to you 😉

[Kevin_1 in reply to AnaBri]

Available on prescription in U.K.

[doglington in reply to AnaBri]

Its made by Nestle on prescription.

x

[Kevin_1 in reply to AnaBri]

Hi Anabari

It sounds like you are doing a fantastic job with the food. It is so important isn't it. I overcook the rice... It works.

Yes, I freeze a lot of fresh fruit and then liquidise it with yogurt and orange or pineapple juice to thin it. We're using Kefir a lot more instead of the yogurt. That makes Liz's breakfast drink. She too can manage a straw still, but I am getting an Adult feeding cup as a stand by.

Lot's of good stuff in your post, but I will leave it here as I can see Jean has responded.

Waiving

Kevin

[AnaBri in reply to Kevin_1]

Thanks Kevin, we used to give yogurt to my mom, but we noticed sour things would increase mucous and makes her try to cough. This affects her pharinx, apparently inflammed. Thus making her more uncomfortable. So we took yogurt off her diet. Milk seems OK still. For breakfast she takes a thick fruit smoothie or a bowl of baby cereal, plus a thickened herbal tea (using apple or peach sauce). We also use apple sauce to get her to take her pills, it's easier that way.

[Cuttercat]

Dear Kevin,

Kudos for this post. I'm the queen of pureeing, ask me for some recipes, I'll be happy to share. I have wondered about using the syringe but never thought about the cake icing one. Good idea and I'll follow-through.

Charles has refused the PEG so right now he is eating well. Who knew. Day to day, hour to hour but happy he's feeling better.

Never can plan but still trying to wrap my head around these stages.

BTW he loves canned chicken and dumplings pureed. Provides some protein because, as you know, it seems like sweet things dominate.

Blessings to you both and for what you are doing, what we all are doing. No one else understands.

Cuttercat

[Kevin_1 in reply to Cuttercat]

Dear Queen of Puree

I think you are Queen of a lot more than that! (Chuckles)

( I'm the King of 'quick and not so well done laundry' BTW). I trade under the name. "Its still damp." according to Liz.

It's just what we are struggling with at the moment.

Though I must say I am constantly surprised at the knowledge skill and experience on this forum.

Yes, its that Liz refusing the PEG thing that I am becoming more aware of these days. I will respect her wishes to the last though.

I bet between us all here we could put a superb soft and liquid diet book together.

Big waives and hugs from both of us.

Kevin and Liz

[Cuttercat in reply to Kevin_1]

The book might be fun, someday. My newest idea that works is grits, cooked and then stir in ricotta. Makes the grits slide. Then on top either spaghetti sauce or Indian curry sauce. Works great. Bet in the syringe as well. Pizza on a spoon!

Love,

Cuttercat

[Kevin_1 in reply to Cuttercat]

Ah, 'Grits'

We don't have that word... very descriptive though. Yes, my favourite is Bulgar Wheat.

Those sound good... added to the list

[easterncedar in reply to Kevin_1]

I used to make polenta - so time consuming, but delicious! Then a friend asked me what was the difference between polenta and corn meal mush, and I decided it was mostly the fussy Italian recipe. I now use grits, corn flour (masa harina) and corn meal in various combinations more or less at random, very easy to do, very versatile, all very satisfying.

[easterncedar in reply to Kevin_1]

In the US we use "grits" to describe only coarse ground maize, which we call corn, which are then boiled. When they are well softened and have absorbed all the water (as I said I usually also mix them with less coarse meal or flour to make the whole smoother, or use only finer corn meal), I press the rather pasty substance into in a loaf pan. when it is cool, I slice it, fry the slices in olive oil or butter until they are crispy outside, soft inside, top it with cheddar or mozzerella so the cheese melts. Then I top that with pinto beans and spicy chili and/or hot sauce. I think that is my very favorite meal of all.

Not bad fried with an egg for breakfast or topped with maple syrup, too.

That said, I love fresh tabbouleh with lots of bulghar and mint topped with yoghurt and cucumber and feta. Maybe that's my favorite....

[Kevin_1 in reply to easterncedar]

that tabbouleh sounds to die for - consider it stolen!

Maize / corn doesn't really figure in my cooking. It should it has been found to be very healthy re. bowel cancer because it has ?30% indigestible starch which is good for the large bowel, apparently.

I see Masa Harina is available in the UK supermarkets. Is that what you would use to make your grits? What would you add to it to make the 'pasty substance' you put in the bread tin please. I think I will have a go at that.

It must be good if it is competing for favourite with that tabbouleh!

Thanks

[easterncedar in reply to Kevin_1]

Masa harina is corn flour - very fine. That's what is used to make polenta or tamales or tortillas. Grits are sold as "grits", and are more like fine gravel! Very coarse cornmeal is a substitute for grits. We can buy cornmeal of various degrees of fineness here. You might say grits are at one far end of cornmeal and masa harina (corn flour) is at the other.

I tend to use whatever I have at hand, but rarely all of one extreme or the other, for preference. I like the texture when there is coarseness and smoothness together. You can use masa harina for cornmeal if that's what you have. Just watch for lumps.

Excuse me if I'm telling you what you already know. I have a feeling you are a real cook, Kevin! But here goes:

To make polenta you use flour painstaking sifted through your fingers over a large pot of boiling water grain by grain. (Something like 6 cups of water for a cup of flour, but I'm guessing now. It's been a while.) They say you should go so slowly you can see each particle as it falls from your fingers. Yawn. Then you stir and stir for a year or two until the paste forms and begins to pull from the side of the pot like pate a choux.

There are lots of recipes out there. Polenta is very nice, but I like mush/grits for the everyday type of eating. To compare:

To make mush or prepare grits you boil some salted water, (I use a quart to 6 cups or so of water per a cup or so of corn) then briskly whisk in your cornmeal trying to avoid making lumps. (If it's all grits, you might want more water and a longer boiling time.) Turn to low, stir now and then, let it bubble a bit (carefully, a splat can hurt) and then stir attentively until the water is gone and the grainy paste is smooth and holds a firm peak on your spoon. Then put it in a pan, whatever shape you like. I rinse the loaf pan first so it is wet and releases the mush after it cools.

I hope you like it. You can make it so loose that it never becomes firm enough to cut, (more water, less cooking) and instead spoon it up and prepare it as you like - with ricotta as Cuttercat suggested, whipped warm and smooth with an egg, served like breakfast cereal with milk and sugar and cinnamon, heated as separate spoonsful like gnocchi in a buttered dish in the oven. It's all very versatile and very comforting in cold weather.

I hope you try it and let me know how it goes.

Love, Sarah

[Kevin_1 in reply to easterncedar]

Hi Sarah

Wow, you've go me going now.

I do cook. Clearly you do too!

No, this is very much American cuisine and I am unfamiliar with it. Though I read a few American cooking websites, there is a big crossover.

Thanks for taking all of that trouble.

I can get Grits on Amazon!

Give me a couple of weeks and I will report back.

I do love trying something new.

Love

Kevin

x

[easterncedar in reply to Kevin_1]

By delightful coincidence, I was invited to dinner this evening by a friend recently returned from a hiking trip in northern Italy. She made a fabulous polenta, spread in a shallow baking dish and topped with a sort of fresh vegetable and tomato stew with tiny white beans and baked. Glorious! She sent me home with some for lunch tomorrow. Happy day!

[easterncedar in reply to Cuttercat]

Never tried it with curry. Now I will have to! And see what you started, Cuttercat, below...er, above. Now I have to ask how YOU prepare your grits? I'm only from New England, after all, home of "mush", which admittedly doesn't sound good at all!

[Cuttercat in reply to easterncedar]

I boil them, like you, with a little salt. But when ready I add tablespoons fo ricotta to make them creamy. I love them that way. But this is only the bowl of them, not the polenta we cool and refry.

It adds a dimension for meal planning as we can add anything from bolognaise or curry or maple syrup and on and on.

Let me know what you think.

Cuttercat

[easterncedar in reply to Cuttercat]

I think mmmm!

[abirke]

forgive me for not reading all the replies as they are almost 50, but are ya'll not feeling the need for Peg? I support you in your method....I think this is good. realize too that it is neurological and thus the response may lessen no matter what efforts given. However, You are doing absolutely everything right....Liz so lucky to have you....

Do Well

Andrea