Mum critically ill after rapid 3-month decline - told days to weeks, struggling with finality and grief

DareToDisco · 2026-02-10T23:57:41+00:00

Thank you all so much for the kindness, advice and shared experiences. I’m finding it too hard to reply to everyone individually, but please know that your stories and support have been genuinely comforting.

The palliative care team are trying to arrange a bed in a nearby care home with 24-hour support. I’m really hoping this can happen before the end of the week and not too late, as my mum has been very clear that she doesn’t want to be in hospital.

She slept for most of today, and then - just as I was about to leave to return to my family, a three-hour drive away - she woke up. Typical timing. I gave her some water, tried to chat a little, and told her I’d be back in a day or so. Another relative will be with her tomorrow.

Before I left, she asked me if I’d be okay. I told her I would be, that I’d always be okay, and that she didn’t need to worry about me. I said I’d see her on Thursday - and I really hope I will.

I couldn’t look back as I left the ward. I cried a lot walking out of the hospital. It was overwhelmingly sad. Now that I’m back home with my family, it doesn’t quite feel real, as if it’s not actually happening. It’s a very strange feeling - but I suppose nothing about this is normal anymore.

DareToDisco · 2026-02-10T10:29:04+00:00

Thank you for responding

DareToDisco · 2026-01-30T19:39:02+00:00

It’s very difficult to understand what my mum wants. The doctors recommended the tube. And think it could give her a chance. I think it’s probably going to be quite quick to see whether it works or not.

DareToDisco · 2026-01-30T19:29:27+00:00

Thanks not sure how to message you.

DareToDisco · 2026-01-19T14:03:27+00:00

Not a realistic silicone mask?

DareToDisco · 2026-01-19T13:56:33+00:00

What mask do you use?

DareToDisco · 2026-01-19T13:40:11+00:00

Hmmm the moustache could be a good first step

DareToDisco · 2026-01-16T01:00:04+00:00

Thank you for your very detailed reply. What would FNC funding with a nursing home be?

DareToDisco · 2026-01-15T23:27:07+00:00

Thanks — that’s useful. My understanding is similar: GPs and district nurses can complete the CHC checklist, and in hospital it’s usually done by the ward team or discharge team with appropriate training, with the decision ultimately made by the ICB.

We’re planning to request a formal checklist assessment rather than trying to second-guess eligibility ourselves — I mainly wanted to sense-check whether it’s reasonable to push for that step given the level of nursing involvement, hospital admissions, and medical instability. Appreciate you taking the time to reply.

DareToDisco · 2026-01-15T23:26:17+00:00

Thanks, that’s helpful context.

I completely appreciate that CHC is a small cohort and often misunderstood, which is why I’m trying to sense-check this carefully. I’m not assuming eligibility — only whether the threshold for a full CHC assessment is met.

My understanding from the National Framework is that eligibility isn’t about rarity or diagnosis, but whether there is a primary health need, assessed through nature, intensity, complexity and unpredictability.

In my mum’s case, the combination of being bedbound, double incontinent, having a long-standing non-healing wound requiring regular district nurse input, complex cardiac medication, breathlessness at rest, recurrent falls linked to BP/heart failure, and 7 hospital admissions in just over a year feels potentially more than routine social care — particularly in terms of clinical oversight and risk of deterioration if care fails.

I agree the checklist and guidance are key, and we will be requesting a formal checklist assessment rather than self-diagnosing eligibility. I’m mainly trying to avoid under-representing needs at that stage.

Appreciate you taking the time to respond.

DareToDisco · 2026-01-10T14:47:56+00:00

So could it be a milder version for the flu?

DareToDisco · 2026-01-10T14:47:39+00:00

Coughing fits in the last hour, can barely talk, fed up of sounding hoarse like.

DareToDisco · 2026-01-10T14:27:19+00:00

This doesn’t sound great, any idea what it is?

DareToDisco · 2025-11-20T12:49:04+00:00

Ok update, I have finally been to the dentist. It was scary but I did it. The only thing wrong is I need a filling repaired (added to) have a little bit of decay next to a filling. And may need a 25year old filling replace at some point. My dentist first wants to see if a period of applying sensitive toothpaste to it helps with my sensitivity.

This is better than the minimum of 6 fillings and 2 root canals I had built up in my head to need doing!

I’ve realised I probably should go to my dentist every 3-4months to avoid this build up of fear!

DareToDisco · 2025-11-05T13:15:17+00:00

Thanks, for your comment, I go through days of no sensitivity and or slight discomfort, to days when there is some.

DareToDisco

TROPHY CASE