Hi
My dad has a PEG tube which got inserted for some reasons (it's a long story, I wrote about it earlier) - he can eat and drink moderate amounts so we use it just for medicines
I was wondering how carers for advanced stage PSP patients give medicines to the patients - my dad cannot swallow and if I crush them and give them in his food, he hates it alot since they are quite bitter
Thanks
My husband has a PEG but he still manages to swallow pills ( the size of a paracetamol) with yoghurt, whole not crushed. It's strange how he can choke on soft pieces of fruit in yoghurt but has never choked swallowing pills. I can't put them in anything else though. If I do, he does cough.
X
John is the same , he does really like to be able to feel the object and manoeuvre it in his mouth .. We are going to try a diff med for the drool which scares me after other attempts bu will to try . Glycop!!!!!! Something or other
Glycopyrronium Bromide. C had 3mls under his tongue once a day. It did help a bit but since the PEG his drooling has stopped.
X
do,you think it's made a positive difference for colin . And yourself of course .
My worry about the glycopyrronium bromide is that it will have the adverse affects the other meds with Hyoscine has had , so fingers crossed . I believe it's a syrup so maybe I can start with just a drop at first .
With the patch behind his ear , I put it on and within and hour he was in a dreadful starting choking and the IRA were coming over the hill to get us . .this went on for three days and nights ,
I will try it because it's th one and only thing he has ever complained about .. So if it has no adverse effect the smallest improvement will be a bonus .. Is colin still having more sleep time , that's if you can call it sleep .
I think John reminiscies in his day dreams , going back to times when he lived in different house and family so that when he is more aroused he is still there ..
Can anyone else relate to this .
John has started having a nutricia drink at lunchtime but often struggles to suck on the straw for very long .
I didn't think the glyco made any difference as he still had a lot of saliva but when I stopped it he had gallons of saliva. OK, a bit of an exaggeration but he had loads. Colin had hallucinations with the patches and also developed a rash and blisters on the area.
Colin stopped using a straw just before Christmas. He just forgot how to suck. That was what convinced me to talk about the PEG again so I could get enough fluids down him. He was taking so long drinking thickened liquids from a spoon that he was falling asleep before drinking enough.
He sleeps more than he is awake now.
I still give him some drink by spoon to wet his mouth and give him different tastes but then give water through the PEG.
Have a good day.
X
Check out Serrapeptaze for saliva reduction.
I will do , not heared of that one . Will google it now .. So difficult to get the correct balance . Well it's impossible .
Thank you for all that Bev , Sorry to hear he isn't able to communicate . Well I a, sure he is in his own way . Sounds such a lot like John except he can still have some responsive days and can take off a spoon.
He has had the what I call switching off periods for a very long time then will suddenly come back briefly .
His suck is troublesome now but when the dietician visited he was pretty good . They need to stay all day don't they . The nutricia drinks are too thick to suck through a straw but today he managed some thinnish ready break .
The carers arrived this morning before I got up . I like to be before them so that I can rouse him cleanse his yes nose and mouth , I expect colin gets a sore mouth lips . I use Vaseline on those and his nose and eyes. Just a spot to keep the lashes softer .
I have nyastan for his mouth at the moment and he is coming to the last steroid tomorrow .i think they have given him a boost .
You can think John is ok and yesterday I just popped out to the small telcos , it quite near and the carers came . They asked where I was and he told them upstairs so they were worried about me then as well . I had told him where I was going . They told me he spoke quite clearly and even asked for a drink which they are not suppose to give him ..
But I think he had just chosen the wrong words and meant up the shop . They get the wrong idea. This is what I told th CHC lady it's know me t hat really understands him . That's not always straight away of course .
Will let you know how the Glycop goes when it arrives .
Hope you have a good day also . Johns sister will probably visit this afternoon so I better get a move on. Where does that time go .
Yes, where does time go? It's now 11.30 am & I haven't had breakfast again. Had to change bed twice this morning. Decided to keep him in bed as we are on our own today and he sat out for a long time yesterday making his bottom very red but not broken thank goodness. The carer took his convene off to change the bag just as he was about to fill it. Sheet changed as it missed the pad and then after the carer had gone it needed washing again for other reasons. Going to have brunch now then going in the garden to fill the green bin up which will be collected tomorrow.
X
You just couldn't make it up could you .
Not that I want John in bed all the time, but I actually find it much easier for me .
I haven't got to bend and can feed and communicate easier.
The beds in the dining room and open to the kitchen so he can hear me busy sorting things out . It's also more private for him .
I hoisted him out of bed around 11.30 to commode him so then hoisted into his chair .
As I was doing so the d nurse cane to do his INR for warfarin so she was able to check his bottom with turning him in bed .
I had already taken a photo of that when carers here first thing . No I am not kinky , well not today anyway lol.
I thought it would be easier all round .
As they left the carers arrived . Nothing to do by then of course.
My daughter bought me a soup maker for Xmas so I put that on its vegetable soup I added some lentil s. At least we will both eat today ,.
Johns not so good today so far . He is so changeable . We .are sat waiting for a visit from his sister .
I am hoping to get out tomorrow my sitter should be here for the two hours .
Won't be going far by the time you get anywhere it's time to come back , fingers X IF ! I get the chc I will get three hours three times weekly .Didn't manage to get out last week at all so much going on your life's not your own ..
o well my soup is ready ,will try and have that while all quiet on the western front .
Hi Sammy. There maybe a liquid version for your dads medication, which you can feed through the PEG. Good luck. Maddy
Thank you Maddy - I can crush all the meds and mix them in water so that helps 
- Sinemet seems to be tasteless (I tasted a bit on the tip of my tongue) so when he can eat, I mix it in his food
Though having a PEG tube, B still has to swallow his drugs....Not fun and often have to start over as he violently chokes on thickened liquid an pill. I am trying to get liquified drugs.....you might ask your dr about this and then you don't have to crush them.... If they are extended release they have lost that effectiveness when crushed!
AVB
Sorry to hear that - I would suggested to talk to his doctor - half the reason the PEG tube is there to help take medicines easily (the other half may be to help with nutrition) - maybe if he takes the slow-release meds more frequently, it may help? I am pretty sure a good doctor can change the prescription a bit so that all meds goes through the PEG
It would be almost impossible for my dad to take meds in his condition now - I couldn't crush some of them and mix in his food either since they are super bitter
I agree that there should be liquid meds . Have you talked to the pharmacist . My husband had all the meds through the PEG during the last few days of his life. I had previously used it for antibiotics in liquid form
psp peg tube dilema...advice + experiences please?
No to PEG
Explaining to the kids about CBD. . . after one overheard
