PSP Association
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Quick update on hellish few days now at day 13!

Hello allSorry I haven't updated until now, life has been crazy !

Dad is still in hospital and quite rightly so, extremely depressed!

Dad is still on laxatives like smarties and eninmas daily!

I however am going to try n get the eninmas stopped today as one bitch of a nurse rammed the eninma up a few days ago causing a tear n bleeding and yes I did complain about her! For the record I wasn't present when she performed this horrific act!

Dad has been bed bound since being in hospital and is being hoisted daily to sit in a chair!

We are still awaiting fast tracking of chc and dad cannot come home until this is in place! Hoping for middle of next week not confident though that dad will be home by then....

I've been told chc is only awarded at end of life? Is this true?

I've also been told dad may only have 6 months.....I pray this is right because my darling dad cannot cope with much more!!

I have a nasty feeling this will go on for years though!

Mum is obviously very stressed as am I but somehow just getting on with it because there is no other choice!

I don't have the energy to explain everything but dad is now eating well and as for pooing I'm not sure how well that's all working, not great I'd say but I've been told if the eninmas stop they could try stronger laxatives.......?

Love to you all

X

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Oh dear, your poo dad. Bowels do seem to stop working properly with PSP and any condition where exercise and diet are limited. My husband can go for 5 days without performing but Lactulose clears it eventually. Enemas daily sounds a bit excessive to me but I'm not a doctor.

CHC is not only for end of life care. My husband was awarded it in October 2013. It can be awarded it quicker if the claimant is said to only has 6 months to live.

I hope your dad is soon made comfortable and is able to come home.

X

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Thx u NannaB

I agree daily eninmas seem excessive

I don't see how they can see 6 months but equally I'm not a doctor

X

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Daily enemas does seem excessive also it will stop normal function restarting. Ask your GP if there is another way.

Best wishes Tim

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Thx Tim

I've asked at the hospital but they seem quite intent on them but as we all know we can refuse medication n have refused eninmas for the past 48 hours!!

As far as I'm concerned they can issue stronger laxatives by mouth

X

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They did 6 days of enemas and suppositories with Mum when she was in but I said no more after that as she was in total agony with them.

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Exactly same here 😢

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I think we will be needing more though after GP comes today to examine toilet issues. 😢

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😢

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John has gone a very long times without going , they still don't give him Enemas .

It's so stressful for the person with constipation and the person who is trying to put it right . Catch 22 . We both get stressed . And what does stress do . Make it blooming worse.

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Hi Satt, glad to hear your dad is still fighting. Sorry, far too tired to reply to you properly, been on the hospital run myself. Keep smiling, don't let the b.......ds get you down!!!

Lots of love

Heady

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Thx you heady

Even a little reply helps

Hope you are ok? X

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