Where do these time predictions come from?

[Olivia199]

Hello,

My nan was sadly diagnosed with extensive small cell carcinoma back in late October. She has one round of chemo which she didn't tolerate and then caught an infection and therefore wasn't fit enough for further treatment.

She had a spell in the hospice to get on top of that and then came home with oxygen at her request having been told there was little else they could offer and she'd likely have 2-3 months.

It's obvious that she's declined dramatically over the past month. She's not really getting out of her bed downstairs anymore and has 24/7 live in carer.

We've had a few times we thought it was the end. She'd sleep so deeply and couldn't be woken. Then the next day she perks right up again and is eating and drinking.

On Thursday last week a doctor came out and said they anticipated days from here. She's got a syringe driver and it's already quite a high dose due to uncontrolled pain/nausea. The district nurse then repeated the sentiment to us on Friday.

She's still having cups of tea, soup and breakfast etc.

I just don't understand why they believe it's days as such. I know it sounds awful but the rollercoaster that it's been is just so much. She doesn't seem any worse than she was a couple of weeks back.

Is it that she's already so far down the line? Or could it be the difficulty in managing pain? She's definitely not with it as much anymore. She's never had any sort of cognitive change but is now hallucinating and talking of everything that doesn't make too much sense. She's having lucid spells though.

I've now been signed off work to be with her, we've always had such a close relationship and I promised her I'd be there, especially at the end.

I guess it just doesn't feel right? She's eating and drinking - something I thought would stop long before the end. She's awake a lot now whereas even just last week she was asleep for a majority of the day and night. She's talking more even if it makes little sense to those around her. She's even got a bit of her humour back for the most part.

I'll be there anyway and enjoy every second I've got with her, however long that is, but surely this can't be the actual end?

A person often rallies, and even seems to be improving, near to them dying. I guess the predictions given of how long someone has left is just down to experience and expectations. I’m sure your Nan will love having you close to her and spending time with her. I can’t imagine how difficult it must feel for you, so sorry you are going through this. I hope you have some support for yourself in this difficult time
www.agingcare.com/articles/when-loved-ones-rally-before-death-185452.htm

I recommend reading "With the end in mind" by Dr Katherine Mannix. It explains all this really well.

Sorry pushed send too soon... I'm really sorry you are going through this. Big hugs

Many terminal patients I’ve worked with have rallied a bit towards the end, or very suddenly died after seeming ‘ok’.

There’s one man I’ll never forget, he got up that morning and walked himself to the shower, completely dumbfounding us all as he’d been in bed for weeks. He then ate 2 bowls of breakfast and a cup of tea, got himself tucked up in bed and died half an hour later. Truly unbelievable.

I really hope the following days are peaceful for you and your nan and she’s very comfortable

I’m so sorry- it is very very tough.

Once the syringe driver is in, it is usually not going to be long. That’s the usual paths - the meds needed for effective pain management via syringe will eventually lead to her having less awake time and then slipping away.

It’s horribly hard for you, but not for your nan, and that’s the important thing.

Take care of yourself as you take care of her.

Thank you, I really do appreciate that. I think the rollercoaster of up and down has truly hit me this time. I find myself not really being able to believe or process it because it was only 8 days ago that I called all the family in believing it was time. Then she woke up and we had a lovely little party...!! It's so wonderful to be able to spend this time with her, even if at times it's been quite hard to see. She's a truly amazing woman.

Thank you so much. I'll have a look to download that book now. I think just having a little understanding will help.
I'm a healthcare professional who's worked most of her qualified life in A&E. This is so very very different to what we see and I feel like I'm very very out of my depth!

Oh gosh that's definitely one for the books! Thank you, I guess when we went into this I imagined we'd have the very "typical" decline of food and fluid stopping, more and more sleep etc and we'd get a bit of warning perhaps. And we may well still get that. I think it's just such a new experience and I'm finding it hard to know whats happening!

Thank you for your reply. I think that's what I'd expected. She had the syringe driver fitted on the 11th January so we all sort of prepared ourselves then and what you described very much happened. She got more and more drowsy and was sleeping most of the time. Only to wake up more and more in the past week or so.
Since that, it's been increased around 5 times and had midazolam added in with the Levo for sickness and Oxy for pain. If anything she seems to be sleeping less with that. I really do hope she's comfortable. She certainly seems it now it's been increased again but it's so hard to see her uncomfortable.
She's not so agitated as much anymore. Gets a bit stressed trying to find out when the dog was last fed (we've never had a dog, nor has anyone we know really!) But calms down with reassurance that it's all taken care of and seems mostly restless and frustrated that she can't do what she used to. It's just so difficult to know. I don't think I'd want to know the exact time, but now it's been aired that it may be very very soon, I feel that constant on edge feeling. Bag packed and middle of the night childcare sorted while also hoping we get another day tomorrow. Really appreciate your kind reply.

@Olivia199 I'm so sorry you and your family are facing this.

My mum was given 36 hours to live. Around 12 hours after I'd last seen her. When I saw her she was her usual self, albeit in hospital. But we were having a laugh and joke. She wouldn't wear her hearing aids (the sound of the machines beeping annoyed her) or her teeth (she had lost a lot of weight so they irritated her) and, as I am also hard of hearing, I couldn't lip read her and she couldn't hear me. We were laughing about how my daughter was having to translate between the two of us.

But, the medics were right, she died 24 hours after we were told. She died peacefully and with her family around her. I couldn't ask for anything else for that wonderful woman.

I hope, when her time comes, your Nan is as lucky.

I am so sorry to hear of your mum's passing, my thoughts are with you.
It sounds like you had a very special time at the end and I'm glad her family were able to be around her.
Thank you so much - I think one fear is that I wouldn't make it. She had a moment of fear and I promised her I would be there. I promised I would hold her hand throughout. I live 20 minutes away and have a DD who's just turned 1. I've got the plan in place for if the carer calls me but it'll take my mum 20 minutes to arrive and then me 20 minutes to get there. I want to be with her and I'm scared that by not recognising this as "it", I won't do enough.
I'd stay with her as long as it takes and I'm so lucky to have support to do that in terms of care for my daughter but equally need to make sure I'm there at the right time.

Every time she's been sick in the last 10 years I've moved in with her and we've dealt with it together. I guess one of my struggles is that with my DD that's just not possible this time. Which is definitely causing a tailspin about whether I'm able to arrive in time.

I hope I can give her what your mum had. She absolutely deserves that. Thank you so much for sharing your story and once again, I'm so very sorry.

Even if you don't get there, don't beat yourself up about it. She will know how much you love her.
I spent the last 5 days with my dad, snoozing by his bed. I kept being told that today was the day, and it wasn't. I eventually went to lie down & have a brief sleep & he went then. I know I was with him as much as I could be.
By contrast I was told my mum could go on for several days. I popped out for some shopping as there didn't seem to be any change. Half an hour after I got back she went. There's no predicting these things accurately.

I'm so sorry for the loss of both your mum and dad. I really do appreciate it. Hopefully whether I'm there or not, it's peaceful and calm for her and in the meantime I'll just spend every moment I can with her.

Thank you all so much.