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Father in hospital

(6 Posts)
Tinkerbell36 Thu 22-Jun-17 09:14:26

My father has been in hospital for the last 2 weeks - originally with aspiration pneumonia as he has Parkinson's. Since being in hospital they have discovered his oesophagus is completely dilated which is causing the aspiration. He needs a RIG feeding tube into his tummy as unable to eat or drink again. This in it's self is risky for him. When he had the endoscope he aspirated again. He is so unwell - on his 2nd week of 2 types on IV antibiotics. Today he is very confused.
We just want to get him home but at the moment the hospital say it's not possible we have to wait to get the feeding tube in but at the moment he's not well enough. It feels a bit like we're going around in circles. We have a great GP who I've been talking to and we can arrange hospice care at home for him. I've read his care plan done with the Gp and what he wanted was no intervention and to die at home with dignity. At the moment I feel like we're letting him down.

putputput Thu 22-Jun-17 09:35:28

Have you spoken to his current doctors about this? They need to know this is how he felt. Unfortunately a care plan can't tell them what to do but could help influence the decisions.

If your dad can still communicate to any extent he should be being involved in the decisions. The medical staff should be enduring this.

I would also recommend talking to Parkinsons UK about how best to advocate.

Such a hard time for you OP and I hope you're given every support.

putputput Thu 22-Jun-17 09:38:31

I would also contact your local hospice, ask your GP to do a referral if they haven't already. They will have see similar situations many times before.

Tinkerbell36 Thu 22-Jun-17 18:18:01

Thank you. They have now stopped his antibiotics and are tube feeding him until Monday when they will review his progress without antibiotics. If he's holding his own they'll get a more permenant feeding tube if not then home for hospice care. Thank you for your advice - a long weekend ahead ❤

bluediamonds Tue 27-Jun-17 19:06:49


Tinkerbell36 Wed 12-Jul-17 18:56:47

Sorry I've not replied - we finally got him home on Friday. He's so happy to be home and we have carers coming in 3 times a day with support from Macmillan, district nurse, GP and Parkinson's nurse. I'm really struggling with the uncertainty- yesterday he was in bed totally unresponsive - today we sat and watched Murray get knocked out of Wimbledon. I find it so upsetting not knowing how he'll be each day and how long this will last. The Macmillan nurse gave us some pain relieving patches today as he has excruciating back pain - she has been wonderful. Sorry not really sure what I'm asking just finding it hard - no one knows if we have days, weeks - or are they just not telling us? Xxxxx

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