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 Over the weekend she was classed as end of life care by out of hours and all interventions withdrawn so it’s now about comfort as she can’t swallow now.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

[Jodi999]

Hi, I'm so sorry your dad has this horrible disease. What you're describing is exactly what happened to my mother in law in Jan 2024. The district nurses would come by and say its better to stop feeding her as no quality of life. Over a year later, she's still here, more fragile than ever before. Constant choking, gurgling sounds, eyes wide open, mouth open. But still eating just enough to get through the days, even though she hardly weighs anything anymore.

She also has DNR in place and has been refused hospital admission when she was sick few weeks ago. Miraculously she kinda recovered. There's no way of telling when her body will give in to the disease but we're well aware it could happen any day. Could also still be months, it's impossible to tell.

[KaffeeundKuchen in reply to Jodi999]

Thank you very much for your reply. Sending hugs and much love x

[Harshacceptance]

my heart goes out to you and your family 🙏 I’m sorry as I don’t have any answers.

My dads neurologist wrote a letter supporting his CHC stating his condition was “devastating” … I can only emphasise with your situation and reading about your situation reaffirms the same questions I’ve had everyday for the past 18 months.

Dad has no quality of life and can do nothing for himself, mum nursed him at home with a team of carers. His risk of aspiration is very high and each time he has a UTI things get worse, we really did think we had lost him two weeks ago after another UTI yet somehow he came back round albeit his speech is literally non existent.

Again my thoughts are with every person and family battling this devastating disease

[KaffeeundKuchen in reply to Harshacceptance]

Sending you a big hug x

[Machoupa]

Dear KaffeeundKuchenAnd all the people who responded to you

Sending love, strength, comfort and a big warm hug

Sheelagh

[KaffeeundKuchen in reply to Machoupa]

Thank you x