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End of life or is she getting better??

15 May 2022 06:12

Hi

 

I'm just looking for a little advice, family member went into hospital 5 weeks ago we were told they were at end of life and she seemed to not have long left however she bounced back and wanted to come home so we arranged this and got care in place. She seemed quite stable for a couple of weeks then a week ago deteriorated again, we're at the stage she has a catheter, isn't mobile at all, on syringe driver, very confused, hallucinating. We prepared for her to have hours then midweek she picked up again. Talking more, made peace with dying, eating a little, drinking slightly more, saying goodbye to people. She now believes she's getting better and has said she isn't dying. We're all so confused. Is this a rally or is it lasting too long? She's sleeping for most of the day but coming round and chatting although can be confused and speech is quiet. Eating soup in small quantities but mouth very dry and drinking a reasonable amount.

 

We're all doing what we can as she wants to remain at home but we just don't know what to expect now. Thanks if you can offer any advice in similar situation

End of life or is she getting better??

15 May 2022 08:33 in response to Liona1234

Not sure about the duration of her bounce back, but there is a well known phenomenon that can occur towards the end of life, where the patient barely moves, and it seems they are indeed on the way out, then they rally. It can confuse a lot of people/families, because that patient then rallies for a short time, and in some cases seem healthier than they were before they even went into hospital. It gets everyone's hopes up. That the doctors could/must be wrong. However, the patient then goes downhill again. Medical staff sometimes warn you of this before it happens.

What you're describing happened with my mother in law (wasn't cancer related). She was the picture of health for a wee while opposed to how she was for the weeks prior to her rallying. But yeah, she went back downhill again.

That said, doctors just use educated guesstimates, and it's not an exact science when the person will slip away. It happens when it happens. What I'm trying to say, keep your expectations in check and enjoy what time you have with them because it could change drastically. Who knows!

End of life or is she getting better??

15 May 2022 09:05 in response to ProfBaw

Thanks for your reply, I'm sorry to hear about your mother in law, I have read about rallying and initially that's what I thought but it's been 4 days now and I wasn't expecting it to be so long. She is more confused now but she thinks she's getting better the last couple of days. The not knowing is just so difficult isn't it. Everyone has taken time off work but now we're confused as to whether we should go back and save time off for later or if this is just a natural part of things and could change quickly again. 

End of life or is she getting better??

15 May 2022 10:02 in response to Liona1234

Sorry for being brutally frank but it sounds like she's confused successful pain management and the nicerr side effects of morphine with getting better.

Best wishes

Dave

End of life or is she getting better??

15 May 2022 10:11 in response to davek

No brutally frank is what I'm after to be honest. I don't think she's getting better but it's just so weird how she's gone from making peace that she was dying to now thinking she's better. Although the thinking she's better has coincided with a ramp up in her confusion so maybe just that. You almost prepare yourself that it's imminent and then she bounces back and nobody really knows whats going on 

End of life or is she getting better??

15 May 2022 10:53 in response to Liona1234

There is no set time on the duration of the rally. It can be hours, a day, days, a week, and it's not unknown to even go into weeks. There are a lot of factors. A lot of treatments and painkillers can floor people and when some things are withdrawn, the body can go back into it's natural state, and that includes a more natural state of consciousness. Stuff like very strong painkillers and even chemo can make someone just sleep non stop. Withdraw that and they may regain some energy back. But their prognosis remains the same.

I'm not saying doctors can't be wrong, but it's very, very rare. Like being told you have cancer, and it not being cancer. Does happen, but it's more an anomaly than the norm.

End of life or is she getting better??

15 May 2022 10:55 in response to ProfBaw

Thank you for taking the time to reply I really appreciate it 

End of life or is she getting better??

15 May 2022 14:58 in response to Liona1234

Sorry to be brutally blunt, but it does sound as if her time is very near.  My mother appeared to be getting better about 3 weeks before she died from cancer.......she was talking about 'going home' and how she felt really well, but she was in fact very near to death.  Sorry I couldn't offer you any hope, but I am sure you would rather have the truth than sugar-coating, take care, xx

End of life or is she getting better??

15 May 2022 16:56 in response to Violetgirl

No I appreciate your honesty. I don't think there is any hope but my heads all over the place and finding everything so confusing xx

End of life or is she getting better??

18 May 2022 12:35 in response to Liona1234

We were called to the hospital several times saying he was end of life, and my dad would be back and chatty according to my mum and sister ( I live along way from home so I couldn't necessarily make it in time)

he had been sleeping a lot and this became more and more common as he came closer to the end 

I did finally get to see him the Friday before he died as we were called again for end of life, when I got there he had picked up again so I got to talk to him for the last time, he wanted to talk about past times, when he was a boy, people he knew way back, he ate his dinner ( I fed him) that was the last time he picked up and he died the following Saturday 

I don't want to be all doom and gloom but have the hospital removed all treatment and just keeping any pain under control? 
I hope your family member bounces right back up there, but if that's not the way she's going don't worry she will go very peacefully, I have no fear of death now