swallowing

[Flowersinyouhair]

my mum is now having to be given fluids using a syringe 😭 drinking from a cup she can’t keep the fluid in her mouth it just runs out like she has no control. Food wise she’s still managing to eat. She has asked my sister what is happening to her, my heart breaks for her. Anyone have the same thing?

[Sun-flowerwearer]

I am sorry to hear the sad progression of your mums illness has got to this stage. I hope you have support around you. I’ve heard people use syringes so they can put the syringe further into the mouth to administer some liquid. I hope you have support from hospice or district nurses to offer advice and comfort. My thoughts are with you.

[David750]

I am so sorry your Mum has reached this stage. Failure to retain fluids with the lips in the course of swallowing is a failure in muscular control. This was the case with my wife (PSP) latterly. It began intermittently but became more regular. Please consult your Speech & Language Therapist as there are exercises like Iquoro that may be able to help.

[Milocorn1]

So sorry that you’re having to use a syringe for fluids, I totally feel your heartache as any new progression stage is just so devastating. I make my Mum fresh smoothies and because they’re slightly thicker than her usual drinks i’m able to use a long teaspoon to feed them to her. Sorry, I’m not really answering your question as such as Mum can still use a Kapitex Drink Rite Cup which has a restricted fluid flow per tilt (as long as someone holds and tilts the cup for her) but just thought I’d share regarding the smoothie in case it was something to consider as another option of a different method of fluid intake. I hope there’s some good support for you and your Mum from your local SALT nurse too. Sending you all lots of love xx

[Flowersinyouhair]

Thankyou for the replies. Mum is in a residential care home where my sister works. They managed to get 2000ml of fluids in her yesterday by using a syringe. Salts team have said there is nothing more they can do for her other than recommended a peg tube something she has always declined. Will look into that exercise. I suppose all we can do now is be with her and comfort her xx

[45purple]

sorry to hear about your mum. My husband had to be fitted with a peg tube last week. He was taken back into hospital with aspirated pneumonia 5th time since October. This is the only way we can get fluids into him. He can still have tastes of food but no oral fluid. Ask your Speech & Language Therapist about thickener for fluids. Good luck xx

[Flowersinyouhair in reply to 45purple]

She already has thickner, she had a swallowing test not long before Xmas and they could see she was aspirating every time she drank or had food. They have said she should be nill by mouth and peg fed but mum has had it all explained to her and doesn’t want one, I don’t actually think she’d survive the op and she has no quality of life really. She hasn’t had pneumonia yet miraculously and no hospital visits needed for chest infections. We know we are getting to the end you just hope the end is further away.

[45purple in reply to Flowersinyouhair]

It’s just so hard. We asked Karol how he felt about the peg at Christmas and he didn’t know. However last week he said yes as it’s the only way to get him home as he was on a fluid drip and they won’t do that at home. At the end of the day if able they have to make this choice themselves. Sending hugs from Bonnie Scotland 💜

[wear1947 in reply to Flowersinyouhair]

How sorry I am for your mother and all the family members. I have an older sister in a nursing home and I attended the last sessions with her speech therapist. I realize that no matter how hard we try to stop the disease, PSP is progressive. We will soon get into peg feeding. You have to prepare for the duel and give it a lot of love. Hugs!💗💗

[kafunzi123]

I am very sorry that you are at that critical stage. I see many refer to Speech and Language Therapists but in our case the guys were not impressive. We have had 4 up to now and I am wondering whether I should get a fifth. It looks to me just like a routine! I wish you and all of us patience and resilience!

[Kelmisty]

My Mum has made the same decision about peg feeding but all I can do is respect her feelings. Her own words about it are don’t keep me alive with intervention if it doesn’t make me better, as it’s hell now and it’s only going to get worse.

Doesn’t make it any easier for us though does it!

[Flowersinyouhair in reply to Kelmisty]

it’s the one thing my mum has always very bluntly said no to. One of my sisters thinks she should have it so mum got the rest of us to do power of attorneys and respect forms with it on for her not to have it. I’m slightly worried now she’s got to this point and is scared she will change her mind only because she hates hospitals and I don’t think it’s fair for her to go through all of that after all these years of struggling when it may not help at all. They know what they want and I completely understand your mums view xx

[Kelmisty in reply to Flowersinyouhair]

All you can do is go with her wishes - she made her decision and I’m certain if you could speak to her again about it she would say the same thing, my Mum has been asked many times and says the same thing every time even though she’s now struggling to swallow and chokes occasionally xx

[Flowersinyouhair in reply to Kelmisty]

Exactly, multiple drs and consultants have spoke to her about it and more recently it’s been asked a lot and she always says no.

[Kelmisty in reply to Flowersinyouhair]

Then you know you are doing what your Mum wants xxx

[Dance1955]

yes this happened to my husband does she cough too you will probably need some thickener and thicken her drinks hopefully you can get some help with this through you health care professional there are different levels of thickener you can get a Speach therapist to help you with this hugs to you it’s a journey isn’t it x