Feel awful but how long

[Gamorasgran]

We were told on Friday to prepare ourselves that df would go over the weekend. Palliative care team suggested no further treatment and not to bother treating the chest infection he picked up. It was awful but he was peaceful drifting out of consciousness so me and dm prepared ourselves.

The annoying bugger perked up overnight (we ummmed and ahhhhhd about going home but did in the end) so the infection was treated. Saturday pretty alert but still very tired, a bit confused and difficult to understand., Sunday a bit less with it but drs saying still worth pursuing anti biotics and talking about going home for palliative care.

Today I was there most of the day and apart from a very short spell he was asleep. When awake he refused to eat, was even more confused etc. I swapped with dm at around 4, came home thinking we're into the back end of stuff now, geared myself up etc.

Dm just sent me a text - the bugger is sat up eating again!

This sounds terrible but I'm struggling to cope with this bouncing back. We know he is going to die and soon. His 'eating' is a spoonful or two of soup, not a 3 course dinner. He is a shell of my daddy and I find it hugely distressing to see him like this and am as ready to let him go as I ever can be.

The idea that he may carry on like this for weeks chills me. My stress levels and that of my dm are through the roof. I need to balance work (who are lovely and supportive but I only have so much holiday/unpaid leave/compassionate leave and I don't want to use it all up now) and I have 2 primary age kids who are also distressed and on half term. Dh is wonderful and supportive but there are limits about what he can do. The hospital is an hour each way so that's a fair whack of driving and I'm eating shit, drinking too much caffeine and not exercising so feeling awful. Very tired but lots of anxiety and bad dreams.

How long is this likely to go on? He's not in pain and I feel awful like I'm wishing his life away but this is so hard.

With my Mum that stage was a week. It was pretty much exactly as you say.

I remember how draining and upsetting it was. Lots of love and strength to you and your Mum. X

. No real words of comfort to say. I think he will sleep more and get less and less perky. Go easy on yourself x

Does he have Alzheimer’s by any chance? My mum is like this, she’s had the disease for over 13 years and has gradually deteriorating for the past year. She’s been bedbound, having swallowing issues, repeated infections, on and off her food, sleeping for days then waking up to eat puréed food and thickened drinks, sleeping again, labourerd breathing, skin is breaking down, we just don’t know how she goes on. The care home staff say that even the smallest amount of food and drink can sustain for a long time.
As awful as it sounds I just hope my mum stops eating soon, it’s just drawing out the long, torturous process.
We’ve has so many crisises we’ve had to just get on with our lives, we visit twice a week and the CH call us to let us know of any developments with her health.
Sending you lots of strength x

I think much of it depends what his life limiting illness is.

My mum had a heart and lung problem - the consultant told me she had somewhere between 6 months and a year. She was hospitalised 3 times and recovered each time back to her normal self after being very poorly. Was able to go out, ate well, mentally absolutely pin sharp. She deteriorated in the last 4 weeks but until a day before she died was eating, out of bed and alert- but in hospital for the last week. It was only in the last 24 hours that she failed physically and stopped eating but was alert mentally and then died peacefully in her sleep.

My aunt - who had pancreatic cancer - was poorly and failing for months, in and out of hospice, stopped eating apart from mouthfuls, was skeletal. She had carers and district nurse 4 times a day and was on large doses of morphine. Several times we were told days and she would perk up and be back at home. Then she deteriorated overnight and I found her unconscious in bed. She lived for another week unconscious- no treatment apart from comfort fluids.Never re-gained consciousness, no food, no medication (she usually had oxygen, insulin and morphine), no oxygen. Very peaceful. Died in her sleep.

It is a very difficult time and hard to predict. Awful to see someone you love suffer.

We were called in to the hospital as they were expecting mum to die in the next few hours. She actually rallied for a bit and lasted another two weeks. Sorry you are going through this.

He's got stomach cancer with lung and liver secondaries - only 2 months from diagnosis to now and it's all been so rapid.

I am also a bit worried that they may try and send him home with a care package because I am not sure how dm will cope. Ideally I'd like to see him transfer to the local hospice as it's closer and gentler but no spaces....

Thanks for all the good wishes too, the understanding is appreciated

They won’t send him hope they will give you a choice of finding a place in a hospice. I was told my husband had up to two weeks left, he went the following day. I wish he’d had just one extra day though.

Depending on where you are in the country, end of life plans will vary. My mum was deemed not worthy of a hospice as she didn’t have complex care needs and was “just” dying. The hospital was keen to get shot of her to die elsewhere as they wanted the bed. It’s ruthless and uncaring and down to costs and resources. Fight your corner and get PALS involved if necessary.

It's very difficult to predict.
My DF was diagnosed with terminal pancreatic cancer and died only 28 days later (a very long and horrible story which I won't tell here). He was originally told he would live 'probably' 12 to 18 months after diagnosis.
He suddenly perked up one day, then the next day ended up in intensive care, and died the day after. It was all very sudden, and totally unexpected given that he had felt so well for that one day. (I'm glad he had it though).
I'm so sorry for you, and know what you are going through is utterly draining.

P.S. If it should happen that he is sent home (and I hope he can have a say in it if he is capable), Macmillan nurses are brilliant.
My DF died in hospital, but DAunt went home as was her wish. They were fabulous.

With my mum it was much as you describe in the last couple of weeks, I was fretting about having started compassionate leave too early etc etc. It was an awful, stressful, guilt infused time.
You can't plan for it and really have to acknowledge that you can have no control over this whatsoever and accept each day as it comes.
My mum lasted a few more days like that, having a spoon or two of chocolate milk the day before she died.
My best advice is to say all the things you want to say now. One day my mum wasn't really "there" any more, she was confused and distressed and died that night.
I wish your DF a very peaceful passing OP.

Very hard for you all op. When you go in next ask to speak to his nurse and be clear that you want hospital or hospice care. Home isn't the right thing for you and your mum. They won't be surprised and they will understand. Dying at home can be really hard on the family.

My dad was 9 days from being admitted to dying from renal failure. They fetched us several times because they thought he was dying but he rallied, he was hardly eating & within a week a DNR had been put in place & the day before he died his liver failed, he was scratching himself raw, was very agitated, my mum arrived to find him in a pool of blood, he was sedated & died the morning after peacefully in his sleep.

It's a horrible time and not knowing when it's going to happen. I understand you wanting to know as I felt the same way, the up and downs are so hard to bear.
I'm sorry that you are going through this.

Gamorahsgran I'm so sorry you're going through this. It's so tough and the practical side of life going on makes things harder. It's so hard to see them in a body that has failed them and you just want them to be released so please don't feel guilty for wanting it to be over. Your DF knows you and your DM are there and that he's loved. Look after yourself. Xx

Sorry for the typo spelling your name OP. From my experience I knew we were at the end when his breathing changed. He was sleeping most of the time but he would take a big breath and then hold it for almost 20 seconds. There's a name for it. 24 hours later he was gone.

They can be up and down for a while, everyone is different. It's so hard because every day is unknown. Drs hate predicting "how long" for that reason. At the end though things can be quite rapid. Hugs

Thanks for responses everyone.

I spoke to the palliative care nurse by myself today (he's had another day basically asleep but comfy and safe). I told her my concerns about going home and impact on my mum.

She was going to see if there was a bed in the local 'cottage' hospital but there aren't any. She was worried he may not survive the transfer in any case so looks like he'll stay where he is which is ok. He's looked after and the staff are wonderful.

We talked about how long and she does think unlikely to make the weekend but obviously no one can say for sure. However everything has happened so rapidly with him she'd be surprised if this is different.

I feel a bit better with a plan and mum and I are in agreement with where we go from here. But it's still shit

Yes, it's shit, and, sadly, probably there isn't anything that can make it any better just now.
It sounds very good that he's in a place where he's well looked after and cared for - that's all you can do for now, so try to remember to take care of yourself too.
I've already said it, but want to say it again:
It's a terrible place to be in, and I'm sorry for you.
Take care, OP.

I totally feel for you OP. It's an incredibly difficult time that most people don't 'get' till they've been through it themselves
I'm glad your DF is comfortable and in caring hands.
Remember to look after yourself.

How are things?
I won't do the 'hope you're ok' business as you're probably not either way.

Thanks for asking. He's still holding on but only just. Sleeping most of the time now.

Hospital have moved him to a side room and may possibly move him to a nursing home next week if he's still here but also may not as he's not really fit to travel.

The care team have been great. We had a good chat yesterday about staying with him all the time (mum feels she should) where we agreed it was ok not to as he'll slip away in his sleep. Interestingly the nurse said a lot of people die when they are alone so not to feel bad about leaving him to be peaceful. That was a weight off mum.

So still on high alert but closer every day. I think we won't get to the nursing home option....

My mother started what in retrospect was her dying process on a Thursday. She bounced back, got out of bed and ate lunch and watched some TV on Saturday so I also went home at about 3pm ( 2 hr journey) . I had to go back on Sunday evening as she had slipped into semi consciousness

From there she was sedated and finally slipped interested a coma over a week. She died the following Saturday at lunchtime. My sister and I and my niece were with her the whole time . She was in a lovely care home and they gave us a visitor's room.so we could sleep in turns .

So.about 9 -10 days for my mum but Iimagine it is different for everyoneMy dad was given 6-8 weeks to live and he was eating and chatting 36 hours before he died.

I think rallying before the end is common and I am.so.please I was there for that bit as it was the last time I actually saw my mum as her and was able to talk to he

I .sorry op, it is really hard. I had a week off but if my mum had not passed on the Satuday or Sunday I would have gone back.to work the following week. I didn't want to but was thinking thinking I would have to

My niece had flown home on the Saturday morning ( she live abroad) as she has already taken 4 days and knew she would need more for the funeral in a couple of weeks.

Just as a quick update, dad died in his sleep overnight. He was very poorly yesterday with breathing etc and got very cold so it was no surprise tbh.

We are as ok as we can be and I have a big feeling of relief that his suffering is over. Dm is similar and whilst I'm sure we'll have bad days, for now we are remembering all his fabness.

Thank you for all your comments, they really did help.