Dad on palliative care at home

[KaffeeundKuchen]

Hello from the UK. My lovely Dad, 73 came out of hospital last week and is having palliative care at home in a hospital bed. He’s completely bed-bound with a catheter and is asleep nearly all the time. He can’t even pull himself up to sit up in bed or put the duvet cover over his shoulders. We’ve got DNR and the special patient notice to share he won’t be admitted to hospital for any treatment. My mum and I feed him ( level 5 diet and level 3 fluids) but he regularly gags.

He’s gone downhill rapidly in a matter of weeks. Has anyone got any idea of the time frame until the inevitable? The doctors are saying he’s not end of life but this is absolutely no quality of life for him at all. We thought he had a matter of days when he was in hospital with the ‘rattle’ in his throat etc.

Thank you for all your support.

[Marazion]

sorry to read your post. It’s very difficult to tell and everyone is different. Mum has PSP and is no hospital admission etc and no PEG. Her situation sounds similar to where we were last July when she had multiple recurrent chest infections caused by aspiration. The nursing home then took further advice on feeding positioning etc and the chest infections were managed. She was asleep most of the time and not able to speak. She has had steady but considerable weight loss and over last three months lost considerable weight and taking more time to eat less. She was classed as end of life stable at this point as she was ending with meals (basically taking some food) Last week or so she started to take between ten and twenty minutes to swallow each mouthful and at times was unable to open her mouth. Over the weekend she was classed as end of life care by out of hours and all interventions withdrawn so it’s now about comfort as she can’t swallow now. As I said everyone is different but this is where we are with mum. It is so very sad to watch her deteriorate due to this disease.

[KaffeeundKuchen in reply to Marazion]

Thank you very much for taking the time to reply at this sad time for your family. Comfort is all we can ask for. It really is an awful disease. Heaps of hugs, Shirley x

[LuisRodicioRodicio]

Hi KaffeeundKuchen!

I am sending you information and our experiences through the PSPA internal chat.

Hug and courage.

Luis