Hi, I need help! S will NOT drink anything. It's always been a struggle, to get fluids down him, but now I feel I am getting to crisis point. Because he now has all his pills crushed, there isn't the regular sips of water, I doubt if he drinks a cup of fluid a day. For the past few years, I have been telling any professional, that we come across, that he isn't taking enough liquid. They have a chat with him, he nods in agreement, then totally ignores everyone !
We are starting to get problems now, constipation, skin very dry, his urine is very strong, therefore he starting to get sore. Who knows what is going on behind the scenes.
I can't keep on nagging him, well I can and do!!! But that's no life for either of us. He does struggle a bit with swallowing, but I don't think it's enough to be the cause. I have got a straw, a nosey cup. The hospice have just given me some thickener, but I don't think that will work. I keep different drinks, lined up beside him, all day, but bar pouring it down his throat, I don't know what else to do. At this rate, he will have to have a peg fitted, just so we can get fluids into to him.
His actual swallowing seems to be OK, I haven't had to change his diet, but I don't think he knows what to do, when eating or drinking, food or drink goes into his mouth and just says there. Once I tell him what to do, he can chew and swallow fine. I give him loads of food with liquids, just to get some Into him, fruit, veg, milk on porridge, ice cream and custard etc. Every main meal will have sauce or gravy.
Please, what else can I do???????????
Lots of love
Heady
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Heady
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C almost stopped drinking some time ago as I think he was scared of choking. Have you tried the thickener? We use Thick and Easy which goes in the cup after the drink and it's easy to vary the consistency. Now C drinks a lot. Rubicon mango juice doesn't need thickening for C and he has a lot of that. Nescafé cappucino doesn't need much thickening either and it doesn't affect him badly like freshly made milky drinks do. I thicken all other drinks and he is used to it now. Tea isn't particularly appetising but he always wants it as his first drink of the day before breakfast. If I had just left drink by the side of C, he would not have touched it as he wouldn't have thought about it. I had to hand it to him and have a drink myself at the same time. Now I have to hold the cup and he drinks through a straw.
Have you thought of calling in the speech therapist? Has he ever had a swallowing X-ray? That would show what was happening when he swallows.
A PEG is usually a last resort but if he isn't drinking it will probably be suggested.
i hope you soon get things sorted as not enough fluid causes all sorts of problems as you have already discovered.
Did u see my comment about using NUTILUS instead of thick and easy Bev . It is so much better . U only have to use very little as well . It does collect at the bottom of the mug either , John has found it so much easier .
It that the one you put in first? He has tried a couple of others but I can't remember what they were called. C didn't like them. One left an after taste and the other he said tasted powdery. It's all a matter of taste I suppose. I'll look Nutilus up and see if I recognise it.
jOhn is much the same . He can swall albeit slowly , he has had the S A L T yes and also the dietician . Sod's law he is always at his best when anyone like that comes .
Like nan b we have been using the thick and easy but the dietician has recently changes it to NUTILUS . It's so much better ...
Maybe you could ask your GP if he can prescribe it tell him your concern ..
Or ask Distruct nurse might be quicker thatpn waiting for swallow
I had the Devils own job to be able to give John a drink this morning and take his tablets .
Can you make tastier drinks to make it more appetising ..
Colin takes all his medication with yoghurt. He has no problem swallowing whole tablets but chokes on banana if a tiny amount misses the blades. It doesn't make sense to me.
Same as John I sometime give the meds with yoghurt or a mousse .
His swallow is better than mine really , I am not good at all . I think it's because they can feel the solid tablet when john is switched on he can eat a chip , I make them soft and cut in half .
He will even swallow a tablet without a drink , I know u shouldn't but he finds it easier sometimes it's gone bug the time he can open his mouth ..
It seems to be the slowness the message not getting through and controlling the mouth musckes . Does colin keep smacking his lips . Licking his lips . It's clearing his mouth of any fluid especially while eating it gets the juices going .
hiheady I'm not being funny about this mate but just slip a glass of beer
on hes table mate see how it goes accasionally ]]]He must have fluid of some kind it must be worrying for you mate its worth a try mate\y peter jones q.l.d.australia pspbloke
HIEASTERN CEDAR hows the camping trip going up in the mountains good i hope not \to cold for you i hope how is mr c holding up ok thats great mate good on mr c sitting here in my shorts with ceiling fan going its qujtei nice for 10==30 pm mate so stoke up your fire and snuggle aroun d it see yer cedars
We are grand, Mr. Jones, thanks. Unusually warm the past few days, so the wood fire wasn't necessary, but we had one anyway. Not shorts weather here, but pleasant. Friends came by tonight to help us with our turkey leftovers. Lots of wine and laughs. Time for me to sleep it all off. Goodnight! Love, ec
hi eastern cedar and mr c hows it going ok I hope mates
personaly do not think that you can beat an open fire with wood of course and just sitting around with a beer or two or three or wine that's an optional extra matey just watching the different colours come out of the logs and everybody is getting red legs from sitting in front of it and everybody is getting tired from beating their gums with their yarns and tales oh I do miss my jayco caravan and just nipping off here and there even \went to TASMANIA just drove down to Melbourne and drove it onto the ferry boat and then left it to the ferry blokes to chock it up and chain it and retired to our cabins for the night we embarked about 5 or 6 pm and disembarked around breakfast time the next day that i remember we had a great time there i went down a copper mine some old boy was our guide it was pitch black except for the torches on our helmets i said to him for gods sake dont peg out otherwise we will be down here for years trying to find our way out that went down like a lead balloon mate we went to cadburys chocolate factory and a lavender farm we even went on a ghost hunting tour in port arthur at 11--30at night\ it was pouring down with rain and
we had all crowded in to listen to this story teller\telling us what went on in there and there were three young girls in front of me so I let them have it I had some short peices of string which i started to pull along their necks coz it was black as the ace of spades and only the bloke who was telling the story had a torch with him just for effect well you should have heard these girls scream mate it made me nervous then others started screaming as well so I thought its timed for me to do ghost thing and move from where i was standing and I listened to these young girls of how a hand had come across the back of their necks it was frightening but we done lots of other things there we had a month there and a month on the great ocean road where I went for a joy ride on this thing just a bit bigger than a mosquito but that's it for tonight
matey sorry I got a bit carried away peter jones queensland Australia psp bloke
that was a penal colony mate where you had some very harsh sentences for stealing a .loaf of bread you had a free ride on the sailing ships coming out to Australia from England and what a life you had !!!!!!!!!! misery utter misery
I love that story, Mr. Jones. We laughed and laughed. Those poor girls! They are still telling the tale I bet, and have an unshakable belief in ghosts, thanks to you! You are a caution. What's this about a joyride on a mosquito? A month on the Great Ocean Road sounds like a great adventure, no matter what you were riding. I've never been down a mine, although my great grandfather was a coal miner in Pennsylvania, having come from Wales. I am not sure how good I'd be with it, being not comfortable with close spaces.
We have a little Jayco pop-up camper, but sadly got very little use of it before camping became so difficult. Maybe next year I will suggest we try it again someplace close enough to home that we could get back easily if it didn't work out. I hate to throw in the towel.
Thanks for writing, Mr. J. I hope this reply doesn't get lost like my last two. Mr. C really does like to hear from you!
I use Nutilis Clear in most of Keith's drinks, his GP prescribes it for us.
It's so much better than other thickeners and it's easy to get the right consistency. Keith won't have it in his cup of tea though (it is a bit yucky!) so he uses one of those straws with a valve in, I have to hold the straw and cup in place though and watch him like a hawk as he still tries to drink it like he used to drink his beer and ultimately starts coughing and choking!
I tend to give him smoothies made with fresh fruit which he can manage quite easily, I still have to watch him though!
I darent leave a drink by his bed because I know he would forget and try to gulp it back!
Hope you manage to sort this quickly, we have got the Parkinson's nurse coming to see him shortly and drinking is on my to do list! It's such a worry isn't it, PSP just keeps relentlessly giving more problems😒
My daughter still hasn't had her baby yet and I couldn't sleep last night worrying about her. I took her to hospital yesterday but had to set off home at 4pm because the fourth sitter who was supposed to be coming at 5pm couldn't make it! It makes life so difficult because it's impossible to leave him with someone who isn't used to the care he needs!
She has split up with her partner so he's unable to be with her (very long story!)
So I'm feeling really fed up again today for a change, I'll be so relieved when baby has arrived safely, then I can cuddle him all the time, babies always make me feel better!
I am thinking warm a nd cuddly thoughts for you and your daughter...and your new little one who does bring joy! B held my sons new baby a few days ago(under vigilant watch, of course) and he was soooo happy! I;m sorry about the split...it's always a long story . At least there are more advantages for the one parent families than when I was growing up!!!
Swallowing.....so wierd that it is going away....I just realised , I better get a rubber sheet.....He can still use toilet but as is the course of PSP incontinence will be soon to follow.
We are wonderful and strong and knowledge filled mates to our PSP loved ones...God bless us!!!
Just noticed your rubber sheet comment and thought I'd mention I got one from Argos that is like a terry towelling finish but waterproof. It costs about 10 quid and doesn't rustle like the plastic horrible ones, mum doesn't even know it's on her bed !
Patricia . I feel like you , unable to leave John with anyon it it hi isn't familiar of the variations in John .
They can come in one hour and he more alert, responsive , more in control of his mind and body .
The next time they arrive he will be completely different . Unable to respond , slow ridged frozen . Open his mouth eyes or support his body .
It's unpredictable . Difficult for me even and I am with him all the time .
A new carer came the other night. .now John had Been like this for most of the day , she came in it 11 pm .. Far too late ! , chirpy and asking if he had a had a good day . Swinging the hoist across the room over my head .
I suggested she slow down . She said am I going too quick .
Yes , ,,, I asked if she knew what was wrong with John. I told her he had Parkinsons and asked if she knew anything about it ,
O yes , her granny and uncle died with it , I quickly told her you don't die with it you live with it and u should know they need more time to respond and not to think everyone is the same ,
I have to be vigilant with him if I Relax ,. Skip corners it comes back and bites you on the bum ,
Heady maybe you need to call the community nurse, what about Easterncedar says with small pieces of ice, I have to keep telling George to drink, how this bloody PSP to much to take in. Good luck heady sending you a hug Yvonne xxxxxxx.
Pat I hope that it is not long for your daughter to have the baby, horrible you can't be there, feeling for you xxxxxx. Sending you a big hug xxxxxx
We have had this prob but now Des is quite hooked on ice lollies.I buy a few from the local farm shop which are "old fashioned mobile icecream van" types but also the whole orange ones and Rowntrees make a tasty one,this has worked for a few weeks now and I thought Sorbes will be my next resort.I am sure they enjoy watching us struggle trying to think of things for them but then Des has not got a lot to enjoy so be it.Good luck Px
Sounds like everything I would do. B will only drink when reminded and usually spits it across the room so what to do, what to do! It may be time for the PeG. I wish I had more supportive words for you...all I know is I am sort of going through the same thing! I'm sorry
Dear Heady, I feel so sorry for you in this situation, unfortunately I can't add to what has already been said. Hope you get through this soon, sending you lots of love. Nanny xxx
I know this may sound redundant but you will need to gather all the patience you can.
What will come your way will be harder and i hate to be brutally honest but it sounds like tough times will be ahead and you will need to be patient, supportive and much more all in one.
From my observations with dad prompting him helped him and his body react to the instructions given. Eventually this method may not work at some point. As for liquids maybe if you wet a sponge he may be able to extract fluids that way.
We use to use an oral sponge. Give him smaller portions of food through out the day.
I would get desperate when my dad didn't eat. Food is so important to us not only for survival but its a way we show love. When our loved ones don't eat we get scared.
It sounds like you are doing a great job. This is a horrible disease in so many levels. Its as if the body of the patient has turned against itself. All we can do is treat the ever changing symptoms. There is no right or wrong as long as we treat with patience, love and dignity.
Hi Heady, sorry you have both found yourselves in this horrible position.I'm afraid I can't offer any advice as Ben still drinks plenty although often coughs and splutters. ( often spraying anyone opposite him) the advice being offered is very informative and will be filed away for when the time comes. Hope that you get some way of getting fluid down very soon without resorting to the PEG. K xx
Heady, we had this a while ago shortly after C first became urinary incontinent. I was panicking about dehydration because this was towards the end of summer 2014 when it was very hot here. Then I read that lack of urine is a sign of dehydration and there was no lack, so stopped panicking. Eventually he admitted that he was refusing drinks because he was embarrassed about the incontinence. At that time he could still swallow normally so was being plied with water, and nagged by me about water consumption. he has been having swallowing problems since early this year so his range of drinks is now limited, we can't get thickeners here so he drinks fresh fruit juices and ayran, the Turkish yogurt drink that I have mentioned before. However, it may be S is also thinkng he can limit the incontinence by not drinking, which was what I really wanted to post.
Hey heady. I'm having same problems with mum, she's stopped drinking and although has been on thickened drinks for over a year (and hates it) she's been more reluctant lately. How about jelly and ice cream? Liquid content! Also mango juice, guava juice, papaya juice and pineapple all thicker juices so easier to drink and my mum loves sweet stuff so drinks ignore readily. Personally I think papaya taste like feet but the salt keeps saying papaya and pineapple help with secretions... I also buy different fruit flavoured teas and ready made smoothies (I know fresh is better but come on!) that plus nagging means I can get an extra cup or two in her a day ... But peg looking more inevitable ..... xx
So sorry to hear about this - please have him checked for constipation or impacted stool - that can lead to pain, discomfort and delirium in addition to putting him off food
Thank you all for your support. The thickener I was give to try has at least got a couple of drinks down him. Been to see his consultant, total waste of time. Every problem I raised, it was "see someone else". Is there nobody in our wonderful NHS that will take any responsibility for their patients??? waiting for S's speech therapist to ring now!
Not had a good weekend, went to a party, (you know normal stuff!!!!!). Nearly didn't go, it was hard trying to get us both ready. Then there, couldn't leave S, felt such a spare part, don't want to put myself through that again! It was only close family, but I couldnt cope!
Then to cap it all, my daughters partner's mother, was found dead on Sunday, had been there for several hours! She was 79, but everyone thought , fit as a fiddle!!! Just goes to show, we NEVER know what around that corner!
Oh well, promised myself I would do some spring cleaning today, at this rate, it will be lunch time, before I know it! Ollie had his lamp shade off this morning! Not sure if he has discovered missing parts yet, seems to be far more interested in the bone he is chewing!!!
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