So bloody exhausted waiting for someone to die 4

@Radionowhere I'm sorry for your loss, I’m glad DMIL was at peace 💐

DMIL died. At home as she wanted. It was dreadful but peaceful in the end thank goodness. We're all exhausted. I feel sadness but mostly relief that the stress and worry of trying to care for her is passed. Worried about how DH will cope, his whole life has revolved around her for the last three years, and really since his DF died a couple of years before that.
Thank you for this thread, it really helped at times when I was very stressed and had no one to speak to IRL.

Thanks everybody- taking time now to process, grieve, and try to enjoy the moments where I feel relieved. The finality of it is hitting hard, despite expecting it, and hoping for it, I still can’t believe he’s gone.

to you @DaysofHoney I hope you are doing ok.

Take care of yourself, and so glad that your Dad's passing was peaceful.

@DaysofHoney I’m so sorry to hear about your beloved Dad but he’s at peace now and free from illness and pain. Take care of yourself in the next stage of the journey,

So sorry @DaysofHoney. be kind to yourself and do whatever you need to to get through this sad time.

@DaysofHoney I'm so very sorry your lovely Dad is gone. I'm relieved for you both that he went peacefully though. Be kind to yourself and rest.

So sorry. Prioritise yourself now.💐

He has passed, so peacefully. My beautiful, wonderful dad. Sending love and thoughts to everyone going through this.

just popping back in to vent a bit… I’m shattered.

dad seems to have stabilised on the syringe driver and while his breathing is more rapid now, it’s been consistent for 24 hours, and he’s fully unconscious

all feeds have been stopped, thank goodness

surely he can’t hold on much longer?

I’m really surprised at this @Radionowhere , I guess I do associate a syringe driver with actual end of life. Who maintains the driver? Can you have a blunt conversation with them? ‘We are all completely exhausted and haven’t a clue what’s happening, do you have a feeling for how long we all need the strength to keep going?’ Start telling people how knackered you all are.

Been a while since I posted, things had levelled out into a more or less manageable pattern of caring, mixed with mild panic that we might have to live like this for years. Anyway, DMIL now on a syringe driver for congestive heart failure. Diuretics no longer effective. 24/7 care at home, by family. We were warned she might go very quickly....she has not. She's still eating and drinking, good appetite although not the same capacity. This could go on for a while couldn't it? Without 24/7 live in help she's going to a hospice, that won't happen as she'll refuse and her wishes are to be respected at all times no matter the emotional, physical and financial cost to everyone else 🙄
So, anyone have any experience of syringe drivers, diuretic resistance and congestive heart failure? How long might this last? Starting to think it might be months...we can't keep this up for months.

How is your mum
@JamieFrasersSassenach ?

Really feel for you @DaysofHoney .

DM stopped eating and taking her meds in mid December (several years ago), and didn't pass away until the 26th January. I know you probably don't want to hear that, but despite being 90 with a weak heart, she was very stubborn.

She was at home and the whole family popped in to see her all the time, carers were here three times a day, she knew she was loved and cared for, but we didn't sit around her bed waiting for her to die.

It was a long process but the end was so peaceful - my DB and I happened to be sitting together by her bed and she just quietly stopped breathing. In the end a beautiful death, but I remember the stress of the weeks beforehand.

I wish the same for your Dad. x

Yep, quite noisy for a time/gaspy, then nothing for a good 30s, then starts normally again. This is becoming more frequent though and nurse said it indicates continued shutting down. I’m truly ok, he has suffered with a devastating cancer for more than a year now and it’s time for us all to let go… I hope he will soon too.

@DaysofHoney Thinking of you at this harrowing time. It sounds like your Dad has cheyne stokes breathing if it’s become erratic. This can be a sign that the end is near although this didn’t happen with my Dad. It’s just incredibly hard.

Thanks, the night was rough but he’s been given the syringe driver now and is much more settled. Just sleeping - occasional cough and breathing quite erratic but he’s comfortable I think. I keep thinking he might take a last breath but then he comes back, he’s definitely still holding on.

Checking in to see how you are @DaysofHoney. Like @Lidlisthebusiness says, don’t feel you have to be there every minute. I remember when my BF’s mum had terminal cancer, the MacMillan Nurse staying at their house told my friend that once her mum had slipped into a deep sleep she was effectively already gone and that no one would think badly of her if she chose not to be there at the very end. That gave my friend a lot of comfort and the reassurance that it was ok to step away.

@DaysofHoney I hope the transition is kind and peaceful for your Dad. It's an awful time for you, you said harrowing in one of your posts, and I totally agree. I sat with my Mum as much as I could, but in the end I had left her side just 15 minutes before I got the call to say she'd gone. My Dad was with her, but he has dementia and so he didn't realise until a nurse told him. If you can't be there, know that so many people hold on until they're alone, I'd like to think Mum did that for me, and you Dad may well do it for you.

Thank you @CaveMum i appreciate it. I can’t bring myself to leave him, so I’m staying here and staying by his side. He’s coughing so much I have called the nurses again, he doesn’t seem at all comfortable despite being asleep - lots of groaning and very noisy. I think I’ve called them three times today and feel like it’s time to ramp up the just in case meds now.

Didn’t want you to feel like you were posting into the void @DaysofHoney so just wanted to say “I’m here.” I can’t give any advice I’m afraid as I’ve not reached the final stages but if you need a metaphorical shoulder to cling to or someone to bring virtual 🫖 I’m your woman.

So the first of the meds has been given today. The ani agitation one, just a single dose, not on the syringe driver. Seems much less agitated but secretions now more evident and the breathing is bubblier. His carer called me earlier to let me know he was coughing more as a result and so the twilight team are coming back to assess again tonight.

I’m staying very close but find it overwhelming to keep vigil, especially in his small house with the two carers there too.

I know all the signs are there that he will pass soon, but he’s a stubborn goat and I can see this going for days and days - poor old goat.

It’s absolutely devastating when they are just being kept alive, isn’t it? And just goes against what most people would wish for as they approach the end.

I finally had some input from dad’s GP and hospice team (who come to the home and work in the community). They have been brilliant.

We now have the anticipatory meds in the cupboard for as and when they are needed, and they agreed that his fortisip feeds should be halved, as more could have been prolonging life.

I almost don’t want to know how much longer this could go on for. I’d presume that as he’ll be on only 600cals per day, he’ll just continue to shut down.

Can anyone say from experience how long this might take? His breathing is catching today too, and I feel like I can hear fluid in his throat. I called the district nurse but she said not to worry until I hear his breath ‘bubbling’. I don’t know what I’m imagining in terms of his decline anymore, but I think he’s getting worse every day - It’s so harrowing.

@JamieFrasersSassenach I'm sorry your Mum is going through this. It sounds very similar to my Mum, she had a massive stroke last July, but regained her speech and eating ability. She began to refuse food and most fluid in March this year. The carers started to notice her urine output and colour in April, she was admitted to hospital on the 10th. She declined quite rapidly, and was put on a syringe driver on the 16th. She passed away on the 18th. She had sepsis in the end.
For her, I would say it was fairly quick and though I'd not wish it on anyone, I hope for your Mum it is swift and peaceful like mine.