So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

This is so interesting- I don’t know why but I don’t even think about there being guidance and case law on this - it just felt like one of those ‘grey areas’ but I will certainly talk to his GP about it. Dad would absolutely not want his prolonging his life, which I expect the large quantity of fortisip he has could be doing.

@DaysofHoney do you have health LPA? What does it say in Section 5 about being able to talk to the doctors about withdrawing treatment? Is he entirely beyond being able to communicate his own wishes, or is there a point in the day where you can talk to him and get yes/no responses?

Even if you don't have health LPA, you can still have a serious talk to the medics about what is and isn't in his best interests and why. IME once they are reassured you're not going to accuse them of polishing the patient off, productive, compassionate conversations can be had.

assets.publishing.service.gov.uk/media/5a74e90aed915d3c7d528e6d/LP1H-Create-and-register-your-lasting-power-of-attorney.pdf

Up until 4 or 5 days ago yes, he was able to make a yes/no indication by pointing to a green tick or Red Cross. Now I can barely rouse him and if I do he can’t stay awake. Yes I do have LPA for his health.

I had a lovely chat with his GP yesterday who feels like she is on our side but we didn’t really discuss withdrawing the PEG. I will follow up with her on it today.

Fun and games with DF today. He had his shunt adjusted on Monday as his doctor thought it wasn’t relieving enough pressure - his recovery has not been as good as had been hoped for. DM texted me this morning g to say he’d been acting confused about where he was/what’s going on and asked me to call neurology department - she’s very hard of hearing and can’t use the phone herself.

Neurology finally came back to me and said confusion is not normally a symptom after a shunt has been adjusted (headaches and nausea are the standards) and that it sounded like an infection might be the issue (see previous catheter issues) so off I go to call the district nurses.

District nurse took the details and said they would triage DF. 2 hours later DM texts to say someone has been trying to call the house phone - I told the district nurses they couldn’t call the house as DM can’t answer the phone and DF is too confused to know what is going on.

Long story short, the District Nurse turned up at the house and checked dad’s catheter. Said all looked fine, despite the fact he’s barely passing urine and just said to keep an eye on him and call 111 if he gets worse.

So here I am, 200 miles away sending DM details of how she can contact 111 via text if DF gets worse overnight. She’s going to try and get him in to GP tomorrow to see if they’ll do a urine test or something to rule out an infection.

deep breaths

@DaysofHoney I’m so sorry to hear about your Dad. It’s really harrowing when things get to this stage.
My Dad suffered a major stroke and was left paralysed down one side, doubly incontinent and unable to swallow or speak. He was fed via a naso gastric tube but when it was obvious he wasn’t going to improve I refused to have a PEG inserted and requested palliative care only. I had POA and knew my Dad wouldn’t have wanted to live like this. Before his stroke he lived alone and was totally independent. It was a tough decision to make and not one I made lightly. My Dad was never really the same after my Mum died and wanted to be with her. My Dad was admitted to a hospice at my request where he received exemplary care and I was able to stay with him 24/7 until he died.

Hi all, I haven’t posted since the last thread.
DM has been in her care home since October - in that time she has had a couple of falls and then a stroke - a clot rather than a bleed. She is now completely bed bound, catheterised and has to be given fluids and food by the carers.
It seems to me that she is simply existing - she had stopped swallowing and chewing solid foods and was pouching her food but is accepting and chewing/seallowing soft foods again.
After her last hospital discharge - about 6 weeks ago her GP phoned me and said she is now on end of life and he has sent the ‘stat’ box (not sure if that’s correct?) to the home.

She looks to be wasting away apart from her tummy which is swollen and her urinary output is low and very dark - but has been like this since discharge from the hospital.

She doesn’t appear to be in any discomfort so I’m hopeful that she isn’t too aware of what’s going on although she is conscious and will say a few words.

This could go on forever couldn’t it? I wish for her sake she could just succumb to an infection and pass away in her sleep. She was always so feisty and opinionated, now she is a frail old woman stuck in a bed.

Sending un mumsnetty hugs to all on this thread

@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.

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.

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.

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.

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.

@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.

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.

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.

@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.

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.

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

How is your mum
@JamieFrasersSassenach ?

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.

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.

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?

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

So sorry. Prioritise yourself now.💐

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