Blessed to have this forum

[Sunnypuri]

Heartfelt gratitude for all the love,support and prayers. This illness leaves no stone unturned to push the caregivers into extreme mental n physical turmoil..HealthUnlocked forum is like an extended family ,assuring us ..We are all Fighting it together..Like a Team ! Thanks again...Moms weak,we are offering her all the love ..

[Kevin_1]

Hi Sunnypuri

Yes, this forum is like a family for me too.

A place I can get advice from people who understand.

Its taken me from ignorance to coping and its always here when I am lost or overwhelmed.

How is you Mum doing now?

Is she comfortable?

Its a brave and hard decision you have both made.

My Liz will not have a PEG either. She is finding it increasingly hard to take even fluid feeds now.

I will light a candle to burn throughout the night for you all.

Sadly, Warmly and with great respect

Kevin

[raincitygirl in reply to Kevin_1]

Hugs to you Kevin...It's getting really hard now, isn't it?

XXXAnne

[Kevin_1 in reply to raincitygirl]

Hi Anne

Yes, I feel the cliff edge approaching... I just have to push it out of my mind and get the best out of everyday.

Kevin

xx

[gypsywoman1947 in reply to Kevin_1]

Kevin Can I ask how long Liz has had swallowing problems ? We have had salt nurse twice now , she says ....no lids on feeder cups, purée food or well mashed. Does not want to give us thickeners but the fluids are worse to give than food. I dread giving a drink now as I have to hold the cup , it's so laborious and a cough and splutter non stop. My husband has opted for no peg. It's so scary. My husband also has frontempural dementia and isn't able to explain how he is affected.

Best wishes to you and Liz GW

[Kevin_1 in reply to gypsywoman1947]

Hi GW

Sorry to hear your husband is struggling like this.

I'm going to give you my take in some pedantic detail if I may. There are some things which don't make sense to me.

Liz has had an increasingly slowed swallow reflex for some three years. Like all PSP symptoms each person varies in the speed of development.

You will also know that the swallow is a reflex involving two different actions. First the epiglottis closes and then the swallow takes the food fluid down. My limited understanding is that the epiglottis is slow to close the airway and so food/fluid gets into the wind pipe. So people choke.

So, as you have experienced fluids cause more choking because the run to the back of the throat and the epiglottis has not closed the airway. Whereas thicker liquid food moves slower and the epiglottis has time to close - No choking - or perhaps less.

So thickener for fluids is quite an early step. I am a little surprised the SALT nurse didn't go down that route. They are generally very good and by feeling the persons throat as they swallow they can tell just how slowed the reflex is. They must have felt it was OK?

So we switched to thickeners and it seemed OK. The choking diminished.

Now the queer part. As Liz got worse she lost the ability to suck. So feeding cups with lids were less good and we switched to open feeding cups and sort of poured the food and thickened fluids in. This last week we have switched back to using lids as she seems to be able to suck more. And she seldom chokes.

Now there are feeding cups which are conical inside and which have a wider spout opening. They are easier to suck on.

The nursing home give Liz thickened fluids. I had a hell of a job getting them to stop over thickenning everything to an almost jelly state. Meanwhile I often give Liz un-thickened fluids, using the feeding cup with spout and going slowly she rarely chokes.

If your husband choke on fluids a lot do go back and tell the SALT Nurse.

I give Liz a lot of fruit drinks when I visit. Innocent is a favourite. Sometimes a blitz a banana in to make it a little thicker.

Now I think I've almost managed a 360 degree turn here.

But Liz seems to have adapted to the issue somewhat.

I do hope it helps a little.

Do come back if you need me to clarify.

Best to you and your man.

Kevin

[gypsywoman1947 in reply to Kevin_1]

Many thanks for the info Kevin, the salt nurse is well aware of the liquid problem , I don't understand the reluctance on thickening. He's in respite next week , I'll see what happens there and their reaction and respond when I get back from my break. Some good tips, much appreciated.

X

[Kevin_1 in reply to gypsywoman1947]

This is the feeding cup - it comes with a normal small hole.

Because its conical inside it doesn't need tipping up as much.

amazon.co.uk/Ornamin-Handle...

This is the lid with a larger hole

amazon.co.uk/Ornamin-spoute...

They are expensive, but they are so good the nursing home bought a pile of them when they saw ours.

They are double walled and keep things cool or hot.

Cheers

Kevin

[gypsywoman1947 in reply to Kevin_1]

Thanks a lot . I really appreciate it x

[Kevin_1 in reply to gypsywoman1947]

I've done an edit to clarify...

[doglington]

Yes. We are an extended family, thinking of you all. I am a sort of "village elder ! "

love from Jean x

[raincitygirl]

Hi Sunny: We are a family - a far-flung, wide-spread, diverse but very close family.

I just love our "village elders" - they are more helpful to us than they would ever know.

Carry on with the love - it's ultimately all you can do.

Hugs! XXX

Anne G.

[Zeberdee]

What you are going through breaks my heart as I know how it ends. Thinking of you and your mum. Hugs to you both. Jxx

[Katiebow]

Dear Sunnypuri, I too am surprised that the SALT didn't recommend thickener as it certainly has helped Ben, he is on the thickest now and I spoon feed drinks to him. He hated the idea of thickened drinks at first but doesn't seem to bother now. His favourite is thickened fresh smooth orange juice for breakfast and thickended elderflower cordial for thirst quenching. On the SALT advise I thicken shop bought smoothies ( I don't have the time or will to make my own) water it down a little, pour into thickener granules to thicken up and then freeze. I usually make up a whole bottle and divide into 5 snack bags that you can seal and freeze. When he fancies one I pop the bag in the microwave for 40seconds turn it into a bowl and mash it to a slush, cold and and refreshing and he rarely chokes on it. Ben never got on well with sucking through straws and beakers, SALT said it was hitting the back of his mouth too quickly and caused choking but I know others are fine with it. Ben has also refused a PEG, very scary but it's what he wants.

Hope that is useful

Love Kate xx