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.

I'm so sorry Op.

Sorry for your loss. Your original post brought back memories of our own parents in similar situations. It's so hard to know how long a person can live under the circumstances and we've been through the stages of being called to the hospital when they thought parent was dying to the parent perking up again - over 3 months. As awful as it is to say now, I'm glad for you that your dad went peacefully in his sleep and that he didn't have to endure any more suffering. Take care over the coming days, take time to organise things and take help where it's offered.

I’m so sorry OP. I went through similar 6 weeks ago. It is very hard.

Sending you love and strength, OP. So sorry for your loss.

the relief, the guilt from feeling relieved and emotions that are up and down are all normal. It's going to be a hard few weeks so remember to take care of yourself as well as others. Hugs

Gamorasgran much love to you and your family

I feel you! My mum died of PC nearly 5 years ago and this stage was horrendous! Dad called me at work on the Monday and it was the following Tuesday when she actually died. A lot of sleeping, some moments of lucidity, fancying some pineapple then accusing me of not giving her her supplement drinks right near the end (as organs where shutting g down and she no longer needed any nutrients etc). Long, humid June days where we all sat with her in rotation, just holding her hand and watching and waiting. I whispered a few times that it was ok to let go. She died on the night I went home and we had a Marie Curie nurse sat with her to give my dad some respite. She called them.in and she was with my dad, my brother and her brother when she died. It's so very hard, sending you huge hugs and strength

Sorry, just read your update, OP. So sorry for your loss but no more pain x

I read your opening post and was going to reply "too long, and not long enough". It's a horrible time.
Having seen your update I just want to recognise your loss and say to look after yourself and your loved ones during this time.

Thank you everyone. People have been very kind and today as been oddly ok (well all except dh who for some reason has got really arsey after being amazing up til now. Ah well.)

Hi,
I hope you've been told that you can use the 'tell us once' website once you have DF's death certificate. It is very helpful.
It's also useful to get several copies of the death certificate so you can send them to banks, insurance companies etc. (Sorry, I know that's probably raw for you.)
You've been in a whirlwind and I'm sorry you have.

If DH is too much of an arse, tell him.
You need support right now - even if that's in the form of people leaving you alone to process it in your own time, or whatever else you need. Cuddles are good!
Let the tears come if they need to. (I remember fearing that I may not be able to stop once they'd started.)

I hope you've been able to get some rest.
I can't remember if you said you are working or not, but it might be worth considering getting some time off due to stress if you are - see your GP if so.
Most of all, don't forget yourself in all of this. And that means you need to take care of you, above and beyond all else.
You've been through a terrible time, and you need some time to think things through and 'get your head on straight' iyswim.
Sorry for the long post, but I just want you to know I recognise what a difficult time you're going through.
, , or whatever else you need or want right now.

I'm very sorry for your loss op

Sorry for yiur loss OP. God bless

Hi all, I feel exactly the same. My Mum has been in hospital now for about 2 months. She was admitted as she had 3 falls in a week. The last one her blood pressure was so low. They then found she had sepsis and liver or kidney issues. She got over sepsis even though at one point the doctors were not that hopeful.
My Mum is 93 and up until recently was living on her own with no help at all.
She then got sepsis again and then pneumonia, to add to the mix MRSA. They tried the usual antibiotics etc and fluids but that didnt work. I got called on really early one morning not knowing what to expect. They basically gave her pain killers to keep her comfortable.
I stayed all day but she was comfortable. She was then put on end of life pathway ( nobody at first told me what that meant)
Now apparently shes has plateaued and is not on the end of life thing.
I am an only child so all visiting is down to me. I dont begrudge it of course as she is my Mum but its draining and exhausting.
I was too visiting every day but trying to work and work through a house move made it impossible.
I feel the guilt thing when I dont visit. Now its so hard to see my Mum like she is, cannot really talk, doesnt eat/drink. Her eyes roll up in her head. I try to talk to her but its so hard. She tries to talk to me but the words dont come out.

Like you I feel how long is this going to go on for, I know nobody knows but I dont want my last memories of my dear Mum to be these. I am so confused right know, I dont really have anyone to talk to about it. My wife is great but I dont want to burden her as shes been through similar with her parents.
Ideally im looking for some sort of support group, is there such a thing? Depends where you live I assume.
Sorry for the long post, I just need to get it off my chest!

Oh Marty, just saw your post and you have my total sympathy.

I genuinely found this stage you are at worse than after he passed. It is so so draining, uncertain and cruel.

How is your palliative care team? Ours was a life saver to be honest -they were warm and supportive and honest. They didn't judge me and let me say the horrid things I was feeling (like I wanted him to get on with it...). They let me and my mum know it was ok.

We didn't stay with him 24/7, we went home at night and the nurses supported us with that decision. In fact one said that sometimes humans need to be alone to die and in fact giving him space wasn't a bad thing (this may have been total bs but my god it helped!)

Are they talking about moving her to a hospice or anything? Is there somewhere nearer to you which may make logistics easier?