Is this the end?

[Cumulonimbusincus]

DF has end stage COPD, CHF and Alzheimer’s. The last few years have been a constant to and fro between hospital and care home. Today the care home rang to say he’d been admitted, followed by a doctor from the hospital. The doctor left a voicemail saying “I’ll call back as your father is in hospital and unwell”. Is ‘unwell’ doctor speak for really serious/end of life? I got the feeling from his tone that that’s the case. I’m away on holiday with DH and two small children so I’m trying to decide whether to get them home first or travel to the hospital with them, although obviously I wouldn’t let them see DF.

You need to speak to the doctor. In my experience of a parent who was admitted to hospital in a similar condition, they laid it out explicitly. Consultant said things like "if you have other siblings you need to tell them to come right away" and used phrases like "palliative care" and "all we can do is keep him comfortable". No doubt what they are trying to say.

Does your father have a DNR in place, or has this been discussed with you? Again in my experience they broach this on admission to hospital, especially with a very elderly man with underlying issues.

Much love to you, hope you get through to the hospital and speak to someone. If you can't speak to the doctor, try to get hold of a senior nurse. Doctors are often thin on the ground over the weekend.

Yes it is.

When FiL was in hospital with metastatic cancer, we were rung up at 2am and told he was "poorly".

Of course he's poorly, he's dying of *** cancer! we thought blearily and bemused.

Luckily he hung on for a few more days.
But sometimes medics do misjudge the degree of frankness to use in their communications.

Often getting to talk to the doctor is like getting blood out of a stone, so IF THE DOCTOR RANG YOU I would say the default assumption is "unwell" = "last days".

Thank you. I really hope this is the end. He’s in a terrible state now and it would have been much better if he’d been taken by one of the many infections a couple of years ago. He doesn’t know me, doesn’t know he has grandchildren, is doubly incontinent and permanently frightened. Every time the phone rings I pray it’s someone telling me he’s gone. Thank you for replying.

How are things today @Cumulonimbusincus?

This end bit is really hard. I felt such a mix of emotions when my dad was in hospital and clearly wasn't ever going to get out. He was a shell of himself, lost so much weight, very confused and just not himself at all. You feel relief because it's almost over for both him and you, but you're kind of in this horrible limbo because you don't know how long it will go on for.

My Dad told a doctor off a junior for waffling when he was failing to explain that Mum was dying. He then said very clearly I expected she will probably die within the next 24 hours. This was much clearer and useful.

I really don’t know why they aren’t more clear. I thought they we’re given more training on this now.

I really don’t know why they aren’t more clear.

In my experience the higher level doctors are clear. The consultant surgeon who spoke to me 48 hours before my dad died was super-clear. He hasn't got long, palliative care, get your sibling here today, all we can do is make him comfortable. She was kind and compassionate, but also left no doubt what was going on.

That was a Friday night though and she wasn't around for the weekend. Over the weekend it was junior doctors, FY1 and FY2 staff who were very competent but also very young, inexperienced and overstretched. However much you are taught to speak to relatives in that situation it's really something that you only get comfortable with after years of doing it. It must be hugely intimidating and scary for the newbie medics.

I also found that the nursing staff were great, they are the ones who have seen it all before and I am very grateful to the lovely nurse who took the time to speak to me and sibling and explain how things would probably progress.

Thank you, everyone. This evening it looks as if it’s just another COPD flare up and he’ll be back in the care home soon. He seems virtually indestructible, he’s survived Covid, multiple episodes of pneumonia and two brain haemorrhages, one of which should have been fatal. He’s survived seven years since the major brain haemorrhage and we’ve been grateful for the extra time with him but he has no quality of life now. I didn’t go down this weekend as we live four hours away and I’m waiting to see if I’m needed later in the week because it means organising someone to have DCs or DH taking time off work. I’m an only child and my parents divorced years ago so it’s just me.

I thought this time might be different as he’s pretty much stopped eating over the last couple of months.

The doctors were very clear when GM died, they rang both DM and me to make sure we knew we needed to be there, but her illness was completely different and she was 93. COPD is notoriously difficult to predict, particularly in the later stages.

@Stroopwaffels that’s exactly where I am now. Feeling guilty because I’ll be relieved when he goes but battered with grief every time I think it’s coming.

Thanks for asking @SiouxsieSiouxStiletto 🩷

Would it be worth him having a plan, that means he can stay at the home, rather than go to hospital? It must be very distressing for him and for you. And he sounds like he has little quality of life.

@Toddlerteaplease I’m not sure how much they can do at the home. He has DNACPR but no further ADN so I suppose they have to treat him unless it requires CPR? Do you have experience of that? He finds being moved very confusing and asks how he got there every few minutes.

It’s so frustrating seeing them frail and confused with little quality of life. Don’t feel guilty OP. If you’d asked your dad when he was 20, 40 or 60 whether he’d want to be like this in 2023 he’d have looked at you as if you were bonkers and said, “no”. A gentle and dignified passing is better for all concerned.

@Cumulonimbusincus I don't have personal experience of it, but I'm sure that I've heard if a plan like that. I think my colleagues mum has one. Speak to the GP or the home manager as they will know if it's possible.

MIL spent a good proportion of the summer going backwards and forwards to hospital for IV antibiotics for chest infections. She had no verbal communication following a stroke and got very upset at changes in her routine. She had heart and kidney failure. In the end DH asked if there was any point in this and the next day one of the doctors called back and they had a frank discussion. She was then just given palliative care in the home until she died a few weeks later. Sometimes the medics need to know where you stand and whether you are going to be shouting if they don't fight to the bitter end.

He’s back in the care home. And so it goes on. Thanks @countrygirl99 that makes sense, I’ll have that conversation with them. This isn’t doing anyone any good. Thanks, everyone. It really helps to have space to talk about it.

Hugs OP

I think it's definitely time to have that conversation, as hard as it will be

Dad passed away last night. The grief is here but also relief that he’s not suffering any more. Thank you to everyone who took the time to reply.

Sorry for your loss, it’s not easy to lose a parent, no matter how or when. 💐

Sending my love to you OP. No more pain and suffering for Dad now xx

Sorry for your loss. Best wishes to you and your family 💐