Hi folks
Liz is having greater difficulty opening her mouth to take soft food.
She has decided not to have a peg and yet she is otherwise fairly strong.
Currently we hold a spoon to the edge of her mouth and use a fort to push the food in. It works, but it is messy.
I am thinking of trying an icing syringe.
Has anybody tried this?
(I'm also going to have a chat with the O.T.)
Thanks
Kevin
Hi Kevin. The spoon and fork is also my present method. I think while liz's mouth is opening the syringe seems a reasonable idea. The problem I have is that Drew has occasions when he can't get his front teeth apart, especially when he is taking pills. I will need to look into liquid medication instead. Good luck with the syringe.
Margaret
Does she have pureed food and can she swallow alright ?
Chris has occasional jaw clamping but its not a problem so far. The syringe sounds good. Let us know .
Its a continuing nightmare, isn't it ?
love from Jean xx
An admiral nurse said to me once if you put something cold against bottom lip , like cold spoon it apparently triggers a response to open mouth. It might not help when jaw is clamped closed with muscle contraction but thought I'd mention it . The syringe sounds like a good idea to try. I use a syringe for liquid meds.
Back in October hubby decided he would not have a peg and we use the spoon and fork method. Hadn't thought of the icing syringe definitely worth a try. Good thinking 'Batman'. Jx
Good idea Kevin, george is still managing to eat puréed food, takes longer. Hope Liz gets on well with it, keep us up to date on your progress. Big hug to you both Yvonne xxxxx
Kevin I would never have thought of that but it is worth a try? A metal one might be better than a plastic one? Just in case she clamps her mouth closed? Mind you then there are teeth to think of? Might be better to lose a tooth than end up swallowing broken plastic though?
When Garry was in hospital a nurse used a syringe to get some liquid into Garry. It did work for a while but his swallow was failing so not a total success.
I just want to cry for all of you going through this. It is so very sad and you are all so good doing your utmost to keep your loved ones alive and as well as possible. God bless you Kevin and everyone else.
Marie x
I like the idea. Would you be trying to pry the syringe into the mouth, or squirt the content into between gum and cheek? If trying to place in between teeth, the danger of her biting down and snapping it is a possibility. squirting a bit might be doable if her swallow reflex is activated.....Also having a suction machine was a godsend for us!
Goodluck
((HUGS)) to you and Liz
AVB
I second that about the suction machine.Don had one in the hospital and in the rehab the last few weeks of his life and it was a Godsend.I wish I had known to get one sooner
Hi AVB
The plastic is of the tough kind.
We aren't quite there yet. So this is a standby for the day she can't opne her mouth enough. Some days she can open it more than others.
One of the carers dropped by this afternoon and gave us a 60ml syringe of the kind used in peg feeding. Its perfect. I plan to get food grade tubing and screw a couple of inches on for each feed. She can bite down all she wants and I will throw the tube out after each meal.
Down the side of the cheek sounds safe for the swallow and choking don't you think. Thanks for lagging that.
Ah, thanks for reminding me of suction machines... the time will come.
Hugs to you
From us both.
Keep us posted on the syringe, Kevin, Ben is starting to clamp his mouth on the spoon and I worry how I will manage to feed him in the future. He has said no to a PEG.
Love to you both
Kate xxx
Chris has started keeping his mouth open when I feed him. I worry that he will remember to swallow. So far he closes over the spoon but it seems as if he can't recall how to work anything all the time. Everything is such a worry.
love, Jean xx
Things here seem to be moving at hurricane speed and keep catching me on the hop. Bens voice has all but disappeared although he keeps trying to make me understand him. Things are definitely getting trickier and I hope I can keep up with the swift changes. Thinking of you both Jean Xxx
Hi Jean
Everyday is different! Yes?
Today the carer struggled to get food in and, as always she did not quite finish before she had to go.
Liz picked up the spoon got a huge heap of food on it and opened wide before shoving it in.
She then sat there grinning!
The look on the carers face with her jaw dropped was unbelievable.
I'm afraid I laughed and laughed.... PSP!
Love
K
xx
Brilliant !! Exactly like Chris. It just takes your breath. Also reinforces they are still in there creating havoc !!!
Jean xx
Think my hubby forgets how to suck when straw in mouth for drinking. Just another hurdle. Jx
I had recourse to a turkey baster at one point, so I think your icing syringe might work!
Hi
So many of us at exactly the same stage, overnight about a week ago Rog's speech and ability to chew effectively went, he has declined a peg also and I fully support him in that decision.
Would the speech and language people be of any help?
For drinks I use those straws that have a little valve in so the liquid stays in the tube, Amazon have them.
Keep smiling and syringing !
Julie
The straw in a cup seamed to work. My mom drinks coffee and juice with a straw. For some reason she is not interested in drinking water as much. Hospice gave us a large syringe and we are using that for water.
Hugs, Julie.
Hi kevin
Think the chat with OT might get you some ideas but from the sound of it you could give them a few helpful ones yourself. But i do agree that metal might be safer than plastic because when a mouth clamps it would take more than you or me to open it again.
Good luck with your idea. I hope it works for Liz.
Marie
Hi Marie
Reading this thread it has become clearer to me that squirting the food into the cheek might be better because of choking.
I have also found that 60ml PEG syringes can be bought online. I'll do a brief post below on that so everyone might see it.
Yes, OT is a good idea, but I need her to pick the phone up!
Warmly
Kevin
Hi folk
Thanks - This thread has been of enormous help.
One of the carers dropped by and gave us a PEG syringe - 60ml
medicina.co.uk/products/ent...
Google Enteral syringe to find suppliers.
It is possible to get re-usable ones.
When we get there I will push a 50mm / 2" of food grade soft hosing on the end for each meal. Tough clear tubing - she can bite down on it all she wants.
Listening to folk it would seem that squiring the food in between the cheek and gums would be safest given swallow issues.
Ahem, I have a very nice icing syringe for sale. Chuckles... Last time I tried one I ended up haveng to scrape it off my face and ceiling... Icing cakes has never been a frte of mine.
Thanks for all of the helpful suggestions.
And hugs to us all who struggle on... 'taint easy.
Love
Liz and Kevin
',',', ,',',,',',',',',',',' ;).............................................................................@
^ Ceiling splat................. ^smile............. ^food not in mouth...................... ^ floor splat
((HUGS))
AVB
Tried to make a cartoon of process of food intake by our loved ones.....I'm just still tryin to laugh folks.....I've edited it several times . I can't get the pictures to line up with the words....so you'll have to dig down to get my jist....maybe my jist just aint gettable.....hahahaha
AVB
Thanks for your posts Kevin and good luck with syringe and tubing when it is needed. Please let us know how you and Liz get on. Lots of love Nannyxx
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