Does anyone have experience of using a drip or other measure to increase fluid uptake ?

[nigelvaughan]

The consultant who originally made the diagnosis of PSP has recently said that my friend is now at the end stage and that UTI’s are a particular risk. Her family and carer are doing all they can to encourage her to drink plenty of fluid but given the constraints of the condition this is only meeting with limited success. My friend does not want a PEG or to extend her life. Whilst I understand and support her view I wonder if there is anything that could be done to increase her liquid intake and so improve the quality of the life she has left ? In particular I wonder if anyone has experience of using a drip for the purpose of increasing fluid uptake in such circumstances ? Thank you for any experience or advice you can pass on.

[timinsuranceman]

I am in extremis too. I like coconut water. It's very easy to consume. Tubes are painful, please avoid them. My best wishes, Tim. If the world knew what we are going through they wouldn't believe it

[nigelvaughan in reply to timinsuranceman]

Thank you Tim, Kelly and Malm1959 for your replies to my question about using a drip to hydrate somebody in late-stage PSP. Fortunately, the carer is using the most of the measures you suggest, such as spoon-feeding thickened liquids, but I shall pass on the ideas about coconut water and speaking further to the palliative care team. If I come across anything completely novel I shall report back to you.

Thanks.

Nigel.

[Kelly55]

Mum isn't at this stage yet and I'm very sorry to hear your friend is. In all the papers I've read it talks about moist /liquid soaked sponges on the lips, saliva spray to moisten mouth or if they are still able to swallow things like jelly which have a water content but are solid.

Other than that it may only be IV which obv has its negatives... The palliative care team should be offering some advice and help with this though!

Our Thoughts are with you all x

[nigelvaughan in reply to Kelly55]

Thank you Tim, Kelly and Malm1959 for your replies to my question about using a drip to hydrate somebody in late-stage PSP. Fortunately, the carer is using the most of the measures you suggest, such as spoon-feeding thickened liquids, but I shall pass on the ideas about coconut water and speaking further to the palliative care team. If I come across anything completely novel I shall report back to you.

Thanks.

Nigel.

[Malm1959]

We give my mom thickened water and smoothies. We often feed the thickened water by spoon to her.

[nigelvaughan in reply to Malm1959]

Thank you Tim, Kelly and Malm1959 for your replies to my question about using a drip to hydrate somebody in late-stage PSP. Fortunately, the carer is using the most of the measures you suggest, such as spoon-feeding thickened liquids, but I shall pass on the ideas about coconut water and speaking further to the palliative care team. If I come across anything completely novel I shall report back to you.

Thanks.

Nigel.

[heinz57]

I am getting to that stage with mum, we keep trying to make her drink but she either spills it even when we hold it as she doesn't seem to be able to suck it in or open her mouth much, we have tried straws but again she can't suck and keeps saying it's blocked which it isn't. i'm at my wits end as to how to make her drink. yesterday she was very quiet & wouldn't tell me what was the matter, i made a guess that she was fed up of living but that we were making her eat & drink & she nodded. heartbreaking

[nigelvaughan in reply to heinz57]

Thank you Heinz57 for your reply.

Just today, after a lengthy and gradually refined Google search I have found something that might just possibly be a way forward with people like your Mum and my friend, who is in late-stage PSP. It is called subcutaneous fluid replacement (hypodermoclysis) and a good introduction to it and its application can be found on the British Geriatric Society's website

bgs.org.uk/index.php/nurses...

There's more on its use elsewhere including at the Nursing Times online nursingtimes.net/nursing-pr... but that seems to be more to do with very end of life care.

It is my suspicion that some of the 'detachment' and unresponsiveness that we see in some of our loved ones is not just due to the PSP but also due to dehydration and its associated effects.

I think the next step, as Kelly55 suggested in her reply, is to approach the palliative care team and see if they can take things forward.

Let's hope.

Nigel

[elizalou1710]

What did was soak 2 cotton buds in cold water and run them over mums lips from right to left , she loved it I would do it 3 times consecutively then wait 10 mins and do it again x she also did have a peg . Good luck my thoughts are with you x

[nigelvaughan]

Thank you elizalou1710 for your reply, which I will pass on to my friend's carer. As my friend has rejected the PEG option I am on the look out for something at a slightly lower level via which substantial amounts of fluid can be administered. It seems that hypodermoclysis may be the answer and just in case you didn't pick up on my reply to someone else yesterday I'll paste a link to it use here bgs.org.uk/index.php/nurses... Thank you for your thoughts. Mine are with you too.

[bevenco]

NigelVaughan, My sister is not in the last stages of PSP but is experiencing great difficulty with swallowing water. We have tried the thickeners, straws, various cups, spoon feeding but I, like you, feel that she is extremely dehydrated as well as other Sufferers with swallowing difficulties. I went to the Website you recommended and feel, like you, this hypodermoclysis could be very helpful. Has it been tried for your friend? Who did you go to for help? We live in America and I am not familiar with palliative care. Any guidance you could give us would be deeply appreciated. Thank You so much for sharing the bgs.org.uk/index.php/nurses...website and best of luck with helping your friend!