Waffle away, we don’t mind. Not much I can say to you or poopscoop, but huge hugs and I’ve been there and know what it’s like.

Bunnyhop xx

+1 for big hugs and sympathy.

B

All the best. During MIL’s last week, she suddenly picked up on the Saturday, knitting and chatting like nothing was wrong, variuos tranfusions etc, but by Sunday she was unresponsive. It’s then we took the decision to stop treatment. Still took five more days to pass. We were all there 24/7.  She had a brief moment of lucidity mid week when she was able to speak to grandkids etc, but there was nothing their in her eyes, they were just black. 

Thinking of you all. Look after yourself.

We had another phone call to say get there quickly today, thankfully as we were all on the way there anyway. The consultant wanted us all present when she told Dad that there is essentially nothing they can do apart from pain relief. We had a family consultation about options with the consultant but away from dad before the news was broken to him, strangely that was easy to deal with as it somehow felt disconnected from reality and we were able to take decisions without mixing in emotions. Then it was time to break the bad news to him. That was a very hard thing to watch happen, especially as it hit him really hard. He was barely able to speak but understood what was being said enough for it to fully sink in.

That was at 4pm on Saturday and since then he has gone downhill rapidly, further than we thought possible. We’re all still at his bedside at 2 am with him on oxygen and enough pain relief to have hallucinations about cats and other random animals, which while sort of amusing is very painful to watch. Yes still in a massive amount of pain, every breath is a massive struggle but he won’t give in. It’s absolutely horrible to witness and also the exact opposite of what he wanted for his last days and hours. His eyes look haunted, so much that it is scaring me.

If it wasn’t for looking after mum I would have left multiple times by now. Absolutely hate this but have to stay together and with it for the sake of mum and my sister. It’s going to be a long few hours and we all fear he could go on for a few days. This absolutely sucks.

Just to add, thanks for the messages above. They may only be words to strangers on a pokey bicycle forum but they really mean a lot and help massively.

Your role here is to advocate for your dad and to support your mum.  Its tough but you have no real choice – you play the cards you are dealt

Good luck.  Its horrid.

Yes it is.

He’s deliberately hurting himself to keep his heart going despite promising before not to resist the inevitable and it’s really upsetting mum. She has had to walk out numerous times as he has been trying to turn himself over and trigger his bad knee into giving himself a burst of energy and has thrashed out once too. It’s harrowing to watch as he’s normally a gentle giant who likes to hide stuff from us. He’s not his normal self and it’s scary to watch him do this to himself and us.

That sounds unbearably tough! My heart goes out to you all!

He’s trying to stay with the people he loves. He’s also maybe a bit scared of the end. He loves you all and doesn’t want to be without you. Hold him, talk to him, ease him, be there for him.

I have been following this thread from the start and really feel for you. I went through similar a couple of years ago and it is tough. As others have said, don’t forget to look after yourself over the next few hours/days and feel free to continue to vent on here if it helps, there is nearly always going to be someone online to respond.

Well that was extremely tough but it is now over.

Dad passed away at 07.40 this morning.

He became very agitated, confused and angry an hour beforehand. Thankfully my sister and mum didn’t see the full angry stage as they were downstairs when he turned on me thinking I was a doctor. He was ranting and yelling at me about why hadn’t he had any pills, why was he being kept on the bed (he couldn’t move himself at all), why wasn’t he allowed home and where was his family. I had to walk away after realizing that it was no longer my dad in his body, only for a minute or two but enough for him to wear himself out a bit. I managed to get him to recognize me and calm down before they arrived back but he was still very confused and trying to escape for the next 30 mins or so. Once he had calmed down me and my sister went to get breakfast for us all from the now open shops in the main foyer and when we got back mum was completely exhausted so we let her sleep on the spare bed in the room. 20 mins later dad started to become very agitated again so I went looking for a nurse to get him some painkillers and sedatives, before they had got them he then started to have a stroke and it took him very quickly. I just about managed to wake mum up in time to say goodbye and watch him pass, something she was determined to do no matter what. Sadly the last hour has left him with lots of bruises, a few small cuts and a severely bloodshot eye. The sight of him once he had gone is etched in my mind now, raw and very unsettling. It was the exact type of death he feared having, much the same as his mum had feared having multiple strokes and that being the way she left the world.

It was the most excruciating and draining thing I have ever gone through, especially as I was trying desperately to protect mum from the worst. I’m still getting over the last hour with him as it wasn’t my dad that was attacking me but it’s hard to separate the physical from the mental person so close to the event. The nurses were also shocked how quickly it all happened as when they came on duty at 2 am we were all of the opinion that we were in for the long haul of a few days of gradual decline and had started planning things accordingly.

So his suffering is over and we can start to just remember the good times with him. Time is a healer, hopefully and he at least went out with a bang.

**** cancer, it destroys lives and people. It can **** off and once it’s done that it can **** off some more. Sorry for the language but is still a bit raw.

Really really sorry to read this. I have no words that seem appropriate, just so sorry for what you’ve been through.

Manhugs.

I’m so sorry. Remember the good times. 

remember the good times indeed and look after your mental health.  this will effect you into the future.  Its not weak to get some pro support.  I have and its been invaluable

No idea how hard that must have been for you all, thank God he’s in no pain now and it’s all about you and yours healing as I’m sure that’s what he would now want.

Look after yourself mate.

Sorry for your loss. I’m watching my mum decline and while she’s a long way off where you were, I can only see towards that as a future.

Maybe not the time, but maybe it is. I can’t believe that in instances like this we can’t do the kind thing, and instead we treat our relatives worse than our pets.

Im working on it JonV!  doing my ruddy best!

Sorry for your loss and what you have been through.

So sorry.
As above, do not underestimate how this might affect you mentally. Time to look after your mum, but please make sure you have some ‘ME’ time. There will be friends that you need to be with, they will listen and be around for you. Oh and rant or waffle on here, it’s good to do this.

Bunnyhop xx

‘Me’ time is in the future, I’m currently fully occupied with the effort of planning the funeral and keeping my mum going too. Have spent the whole time with her at the family home since coming back from the hospital and tonight is the first few hours I’ve had to myself. Not for long though as it’s back to dealing with the planning tomorrow morning, meeting with the funeral directors first thing and I’ve also got the task of being dad’s Executor to go through too (first time doing that so a steep learning curve!). I will take a bit of time out soon, plenty of offers of friends happy to let me bolt to them for a break and I will take at least one of them up, but it’s going to be pretty full-on for the next 2-3 weeks until the funeral is done. Then I should have some time to pause for a while but I’ve got to remember that I’ve still got to find a new job soon as if I don’t I could end up having to wait until January as the timeframe will push me very close to Christmas.

First priority as regards to me is to deal with the aftermath of experiencing his last few hours. I bore the brunt of it and while I’m glad that I got it and not mum or my sister I do need to work through it properly. A bloody good bike ride would be a start but there just isn’t time for that in the near future, maybe after the funeral so a few weeks away but I should be good to get that far. I’ll have to make do with the odd Zwift ride and short walk for now (my 100 days effort is ruined but will keep at it as much as I can) but I will take any opportunity I can to get some alone time in if they crop up.

Maybe not the time, but maybe it is. I can’t believe that in instances like this we can’t do the kind thing, and instead we treat our relatives worse than our pets.

It’s exactly the time to bring this up. I’m of the same opinion as TJ on this: We do not treat our fellow humans humanely when it comes to the End Of Life stage. I won’t go further than that as it really is more suitable to it’s own thread to discuss the legalities, safeguards and ethical dilemmas but my recent raw experience just only goes to reinforce my view.

Again thanks for everyone’s advice and kind words as it has made a difference.

Consider getting a lawyer to do the estate.  there is no way I could have coped with doing it and although I did end up in a dispute with the lawyer over fees i would do it again in an instant.  My will has explicit instructions to use a lawyer.

I bore the brunt of it and while I’m glad that I got it and not mum or my sister I do need to work through it properly.

A good attitude to have.  However again the professional help I got with my head was invaluable.  I had some from Maggies before Julie died and in the immediate aftermath then a load more 18 months down the line

Its important you take a bit of time for yourself even if its in half hours here and there.  Walk round the block and look up at the horizons.

Be kind to yourself

PM me if you want to – I am more than happy to pay forward some of the support I have had.

So sorry for your loss and how the final few hours were.

1st priority mate is you.  Admin whilst important isnt as important as you.  If your wound like spring youll just make it a bigger task.

I’m watching my mum decline and while she’s a long way off where you were, I can only see towards that as a future.

She’s been transferred to Oxford trauma unit as it’s now critical care. I’ve been away for weekend (did not get done for getting bag out of car!) and travelling down south now, waiting for my son to get here on train as he’s determined he wants to visit, for what we all assume will be last time.
Just venting really, but TJ, you’ve advised before when she pulled through, any other thoughts welcomed.

Just venting really

Vent away, must be awful for all of you.

Very aware that my parents are only a fall away from a swift decline, it seems to be the way our family go, sadly.

Just venting really, but TJ, you’ve advised before when she pulled through, any other thoughts welcomed.

I don’t really remember a previous post on this – sorry

What does she want?  If you can’t ask her now then you need to make your best guess as to what she would want.  This can range from all possible treatment and fight to the end to accept a level of treatment but ward based only ie no ITU / ventilation to comfort measures only with a few steps in between.  Don’t let the medics go against her wishes because they might have mucked up and might now over compensate with futile treatment.

the confusion from painkillers can be temporary.  Was she on tramadol?  Its awful for causing confusion.

YOur role is to advocate for her and support the rest of the family.  Decide what you think she would want and then have a chat with the senior doctor to advocate for her position.  IN Scotland ALL admissions are supposed to go thru a process where this is discussed.  We call it advanced care plan.

Mrs TJ prior to her final diagnosis had a blood clot and ended up in the admissions ward.  advanced care plans were discussed and her decision was ward based care only – but including IVs if warranted.  No to transfer to ITU, DNACPR.  Her choice as it should be. ( but I agreed)

Good luck – this stuff is difficult.  Try to make clear decisions not emotional ones.  Discuss with other members of the family but ( I dunno what others are there) at the end of the day you need to advocate for her.  Its not what you want, its not what the doctors want, its what she would want.

Edit – I sw yor point about “what the end would be like” – again its about what she would want.  Even in palliative care there is a bit or range.  would the person rather risk being sleepy and unaware or risk being in pain.  Proper palliative care ( curse Melanie Phillips for making this harder) can involve painkillers, sedatives and other meds to relieve distress.  Done properly most peoples pain fear and distress can be minimised.

I wanted to reiterate TJ’s advice to seek pro support, in whatever form is appropriate to you

I went through a similar end of life experience, it was a ghastly thing to witness and I was 20. It played on my mind and affected me for a long time, until I finally was able to talk about it nearly 20 years later.

When you are ready, talk about it, how you felt, what you thought. Get it out, don’t carry a burden

Best wishes

waiting for my son to get here on train as he’s determined he wants to visit, for what we all assume will be last time.

As predictions go, pretty close. We saw her on Sunday night, she wasn’t 100% there but knew who was around and we told some stories and he showed her some videos of him singing at his theatre club, and she seemed to enjoy. By now she was on oxygen but she could speak a couple of words when mask was off for short periods.

Yesterday she’d got worse again, when I visited around teatime, by now on stronger meds, positive pressure ventilation, and pretty much asleep except when they had to try and get a glucose drip in which annoyed her. We three (Dad, my sister and I) had agreed at that point to no interventions, ward care only as per TJ above. and also had requested she doesn’t now go for dialysis – she knew it was necessary but it gave her terrible cramp after in her feet and we didn’t need that now. We also decided that we’d do shifts from here, we all said a proper goodbye while she was aware on Sunday, and then again last night. My sister stayed until early hours, then my Dad went in this morning. There was no need for us all to be there all the time just to witness the actual passing, but my Dad had only been there for a short time when she just went peacefully just after midday today.

She was a proper stubborn Geordie lass who made her own choice in the end. I can’t believe she’s gone, but I’m relieved that in the grand scheme it was quite short. It’s been a tough few years but she lived her life through her grandkids; the last couple have been tough with falls, fractures, dialysis and a stroke, and the last six weeks have been pretty rough especially the last two. I just hope by the time I get to that stage we can be more civilised about it.

I’m also glad for my Dad, he’s a stubborn arse too and has carried the burden for them both because of a vow he made 62 years ago, and while of course he’ll miss her he now has a chance to live a little. Although I draw the line at taking him to watch Reading play…..he’s suffered enough.

65 years together, when they met she was 16. That’s a whole life. Love you Mum, thanks for everything.

*sends hugs*

Condolences @theotherjonv.

There was no need for us all to be there all the time just to witness the actual passing, but my Dad had only been there for a short time when she just went peacefully just after midday today.

Peacefully and with a loved one there is the best outcome, hope your dad is coping well.

Condolences. I’ve not had a parent go yet, I’m not sure I’m ready to be the ‘head’ of the family. 3 grandparents have gone though.
Maternal gran I never witnessed, I was about 12 and shielded from it all.
Paternal gran had a stroke and stayed at home for years barely able to communicate. She met her first grand daughter and that was the last time I saw her smile. Following a fall and a stroke the last time was in a ward curled up on a bed looking incredibly frail. My sister and I spoke to her about our lives and shared memories hoping she could still hear us.
Paternal grandad succumbed to dementia and spent his last year in a care home where only 1 person could visit. I had already made peace with his condition so was more of a relief that he was no longer confused.

Take time to look after yourself and your family.

Thanks @reluctantjumper, and others. I was terrified after reading your Dad’s last hours, hers were much more peaceful, although the few days before she was moved to the trauma care unit were in hindsight more like yours.

My Dad’s in beat yourself up mode sadly, as I posted a couple of days ago she was let down by care in the first place and ‘if I’d pushed harder/sooner for another opinion it might have been different’, etc. Not nice, @TJ I’m messaging you privately if you don’t mind.

But, life now goes on. We laughed a bit last night after Dad got home, cried a bit, remembered good things, and started to make a plan. Unfortunately due to the situation above there may be coroner involvement so we’ve been warned they may not release her to the funeral directors immediately. Part of me just wants to get on, part of me feels there are questions that must be answered, if not for her but so someone else in a similar situation gets better outcomes.

if not for her but so someone else in a similar situation gets better outcomes.

this is key.  Most folk that have medical mishaps actually want an apology and to know action has been taken to stop it happening again.

In a way I was lucky ( !!!!) in that for me there is no if but or maybe.  Nothing would have altered the outcome

A good death should be a human right IMO.  We are all going to die at some point.  Why should we die in pain fear and distress.  Its unnecessary.

Jonv – fire away on the PMs.

Jonv – fire away on the PMs.

Having written quite a long, in some places cathartic essay to you, you may regret that shortly.

A good death should be a human right IMO.  We are all going to die at some point.  Why should we die in pain fear and distress.  Its unnecessary.

Totally. Sadly, also something my mum firmly believed too, and yet was until the last day or two when things went peaceful, denied.

Been a hard few days unfortunately.

Dealing with all the funeral stuff and starting to get on with the Executor role too has been a struggle. Some companies have been great about it all, HSBC and Santander were brilliant for example, but others have been a nightmare. Virgin Money and EE being the standout ones so far, VM having no physical presence to go to and their call centre seemingly being inaccessible unless you put in your account number and passcode. EE are just dragging their feet for no reason whatsoever and are another one that won’t let you do anything in a store, all via a ‘dedicated’ online portal that is just awful.

Have managed to get away for two days though to collect my thoughts, one was a day at the Classic Car Show at the NEC but I was too numb to really enjoy that much and hardly spoke to anyone on the stands all day. Did get a ride in a McLaren 720S and a MkII Jaguar which helped but once those were over it was very much just mindless wandering, very unlike me. The day was also soured somewhat by a YouTuber I like saying something in the stage that really upset me and I stewed on it all the way home so not a great end. Also managed a day to see a mate for a chat and a pub lunch, that was good and very much needed. Had a few laughs that day but getting back to the tasks in hand the next morning just brought a lot of stuff back. I’ve also had a bit of a run-in with my uncle who is a complete idiot but that is still ongoing so will wait until that’s resolved before annoying myself typing out the details. It’s pushed mum’s progress back quite substantially so that’s a headache I could well do without right now, she was doing really well but thanks to her health issues one setback is enough to undo all the good in one fell swoop.

On a positive note I did a visit to both hospital wards that looked after dad during his last few weeks to drop off some Thank You sweets and they were both happy to have their efforts appreciated. The least I could do as they were all superb throughout.

@theotherjonv – hope things are moving along your end better than mine and that TJ’s offer has helped you.

We had Dad’s funeral on Wednesday, 22nd November.

It was incredibly tough to get through, partly for saying our final ‘Goodbye’ to him but also personally because I had pretty much taken charge of organising it. It wasn’t a solo effort but I had taken the role of sole contact for everyone as it took the pressure off mum (she’s bipolar so stress really affects her) and so that my sister could still cope with work and her young family. Everything seemed fine until the day before where two issues cropped up with the Order of Service: a nickname he never used appeared on the front cover and a different version of one of the Psalms was used that didn’t match the music we had organised. Neither could be fixed so close to the day but it did upset mum rather a lot. Pretty easily got around, the nickname was Mick and dad went by Mike so we put it down to a misreading of handwriting and the Psalm was spoken instead of sung. Speaking it actually worked out just as well and a few of the mourners said it was a nice touch so that actually worked in our favour! I didn’t have any active role during the day, just making sure to keep everything on track as I’m completely useless at public speaking. Thankfully my sister is great at the visible stuff so she took on a lot of that and a few friends helped out too, all without being asked to. The whole day flowed without any issues, even us leaving the Church for the Crematorium late wasn’t a problem as they was running late and we turned up on perfect time to just go straight in.

What absolutely made the day though was that a few of our family friends made a massive effort to be there and not to support us, they were there primarily for Dad. It meant every part of Dad’s life was represented by someone: his family of all generations, his pre-marriage life, his married life, his life with me and my sister, his work life, his retirement life and his social life. We even had a few of the people who knew him purely from him walking the dog and didn’t know his name, he was ‘Domino’s Dad’. That’s damn good going for an 84 year old.

We’re all just taking a few days to relax now, not worry about anything and just let the stress and shock of the last few weeks drain away. Back to the job of sorting out his affairs next week though and then I’ve got to start finding a new job, perfect time of year for that.

Again thanks to everyone for the help throughout the 4 years this thread has been running, it’s really helped focus things when it’s been needed. Hopefully anyone else going through similar can make use of it, whether that’s some of the advice given or just knowing that they’re not alone at that point in time, regardless of how they feel.

hope things are moving along your end better than mine and that TJ’s offer has helped you.

TBH, not really but for reasons I can’t really go into. One day though 

We were at the funeral directors today sorting out arrangements. I think we made progress, and probably laughed a bit too much for propriety. Fortunately the coordinator is a friend of my sister, and I went to school with the guy whose name is over the door, who dropped in to say he was personally going to direct the funeral for us. So they know what we’re like as a family. 

Few more decisions to make, but getting there with funeral date set for 12/12.

It meant every part of Dad’s life was represented by someone: his family of all generations, his pre-marriage life, his married life, his life with me and my sister, his work life, his retirement life and his social life. We even had a few of the people who knew him purely from him walking the dog and didn’t know his name, he was ‘Domino’s Dad’. That’s damn good going for an 84 year old.

That sounds a life well lived. Try and remember that in the darker times.

The memories of his last few weeks are starting to dull and be overtaken by the good stuff, nowhere near enough yet but it is progressing.

@theotherjonv – my family have a similar outlook on these types of situations. Managed a few laughs most days while arranging things and the Funeral Director said it was refreshing compared to the usual seriousness they encounter. As for the planning, it’ll be a slog for a bit but once the basics are decided the rest will fall in place around it. The best advice I can give is to not overcomplicate it and don’t expect perfection, trust their judgement if you’re unsure.

and probably laughed a bit too much for propriety.

No such thing. Humour is good.  Julie and I made some very sick jokes 🙂

Lost my mum last night to cancer, along with pneumonia she picked up after having chemotherapy at least it was quick within an hour of the hospital ringing she was gone 😢