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

@mrsfunnyfanny I have a mum being overtreated and overfed post stroke, and work for a stroke team as a SALT.

What about requesting a palliative team review, preferably by a consultant? Shifting their mindset may take some external input. Do pm me if you'd like.

Thank you so much. I’m very grateful.

We have a friend in a similar position - now three months post stroke and she is immobile and doubly incontinent - but can communicate a little, some times better than others.

She has no family and we have made it very clear that whilst we will help where we can, she will not be able to live with us. She is likely to go to a nursing home - can't go home as her DH has dementia. Total nightmare.

Unless you want her living with you, just say no. They'll probably want you to put her home on the market asap to start paying for her care, but my concern would be getting her through the next stages as comfortably as possible.

@MrsFunnyFanny I really feel for you. My Dad is now four days post stroke and has aspiration pneumonia as well. At least I have POA as this was sorted out a few years ago. The hospital are treating him at the moment as he’s able to agree to this but I’ve said absolutely no medical heroics if he deteriorates.

@AgitatedGoose I’m sorry you’re in the same awful situation. It’s now 11 days since my mum’s stroke - and no improvement whatsoever, apart from the fact that they are managing to shovel slightly more mush down her to keep her alive. I don’t count that as success, but at the moment, the hospital do.
They’ve put her in this rehab unit, but I think she’s way beyond any kind of rehab. She can barely stay awake for the vast majority of the time, and when they tried to take her for physio on Friday, she couldn’t even hold her own head up for more than a few seconds. I took my 18 year old son to see her today, and as we left he said “mum, this is horrible. I just want Grandma to die peacefully”.
as soon as the LPA comes through, I will have more voice (I hope)…assuming that she doesn’t die before then. I feel like I’m living in a really bad dream.

May I join you for a cuppa? New addition to the group! My dad (91) was admitted to hospital Tuesday with lung infection on his already diseased lung. He was at home till then being cared for by family, mainly my Mum as she wanted to do the caring. He was in an and e for over a day before having a place on a ward. He is deteriorating fast and unless one of the family members are there at mealtimes he would have stopped eating a couple of days ago.
He really, really wants to go home ( to die).
It’s been week end, no doctors been to see him today.
How can we realistically get him home? Thinking of speaking to district nurse first thing in morning and see about palliative care at home, macmillan style nursing? It will be emergency so don’t know how feasible this is. Anyone have experience? It’s so so sad. We are having to tell him to eat so that he can go home. He is managing a bit of soup and yoghurt or ice cream but he is now so frail and thin.
There are no nurses doing nursing or caring, we are doing it.

@Sunflower101 Sadly the care in NHS hospitals is abysmal. I hope you manage to get something sorted out but have no idea how you’d go about this. It might help to speak to the discharge team at the hospital where your Dad is.

My mum died early this morning, peacefully and with by her side.

I’ve been posting on this thread since the end of November and it has been invaluable during a traumatic time. I’m devastated and utterly exhausted right now.

Wishing all of you the best

So sorry

@Guineapiggiesmalls I’m so sorry for your loss. Take good care of yourself x

@Sunflower101 Sorry to hear about your Dad. It’s such a difficult situation for you. I’d also suggest you speak to the hospital discharge team. You might be surprised - where we are, it seems that they can’t wait to get patients off the wards and if that means sending them home, then so be it. I’m not sure how much help and support you’ll get though - but it sounds as though you’ve been doing everything yourselves anyway.
I hope they will agree with palliative care at home. I’d suggest pushing to make sure you have medications there to make your dad comfortable when he needs them.
I would like to do the same for my mum, but at the moment they’re insisting on this ridiculous feeding regime.
Let us know how you get on.

Thank you for the messages. My dad needed agreed to go to hospital because he needed intravenous antibiotics, the tablets weren’t working. He is now a shell of himself a few days later.
we are now on the case to try and get him home. When my Mum left him last night having tried to entice him to eat something he wanted to go home with her. It’s so sad.
Today, Monday, fresh week so see how it goes.
it feels like the hospital give up on people of a certain age and it’s not right. I’ve been through the experience with both my in laws receiving end of life care in hospital with morphine and driver and it’s not what my dad wants.

@Guineapiggiesmalls so sorry for your loss.

@MrsFunnyFanny I’m so sorry you are having to deal with this. All I will say, as others with more direct experience will be able to offer better advice, is that you don’t have to agree to take your mum into your home. You are fully entitled to say “No” and that you are not able to care for her. They may offer you all sorts of support to aid her being in your home but sadly these promises often fail to materialise in full.

@Guineapiggiesmalls I am so very sorry, please rest as well as you can and eat when you are able, I hope you have support all around you. It is a very confusing and stressful time, and for myself I felt quite guilty about occasional feelings of relief. Don't. Your mum is at peace now and you did so well.

@Guineapiggiesmalls So sorry to hear about the loss of your Mum. I think you did amazingly to manage everything. I hope you have support as it’s also really stressful arranging a funeral and sorting out all the death admin. Take care. x

My relative died in the small hours of this morning; it was always just a question of time and therefore expected, but the numb feeling is very real - the sheer finality of it.

Unfortunately, the hospital let us down again: one of the family went to visit him this afternoon, not knowing he had died because no-one remembered to tell us.

I feel so sad his final days were filled with unnecessary confusion and pain. If he'd not been discharged to his home, with its four flights of stairs, while clearly unable to walk, he wouldn't have broken his hip the next day and laid on the floor for goodness knows how long before his neighbour found him.

Sorry for the rant. I need to write it down.

@DancingFerret So sorry to hear about your Dad and wishing you strength in the difficult and sad period ahead. I’m appalled at the idiot decisions hospitals make and the equally poor level of communication. My Dad is critically ill in hospital and it’s really hard work dealing with the staff.

@DancingFerret I’m so sorry for your loss.

Hi everyone

My mum's been given just in case morphine for pain relief. The district nurses are requesting an ongoing prescription, so I guess this is her moving to the next stage of living/dying.

She's been receiving palliative care for some time and recently has been sleeping a lot more, and when not sleeping just resting quietly.

I truly hope that she can sleep well now and slip away quietly soon.

Please don't say you're sorry to hear this. I'm glad that a vibrant lady who lived life to the full isn't going to be stuck in a palliative state for months or years, and that she can have some dignity at least.

♥️♥️♥️♥️

@GoldenSpraint I hope things go as best they can, as you say dignity is so important. My mum collapsed suddenly last April, I am told it was quick, so she was spared forgetting our names/ongoing issues at least, as you say which could be months or years. Big hug.

Thanks so much @nodramamama xxx

@GoldenSpraint I fully support your wish for your Mum to be allowed to slip away quietly and with dignity.
My Dad is now six days post stroke, cannot open his eyes or do anything independently. It’s heartbreaking. On top of it all and at a time when what he most needs is a hand hold the ward have had a case of Norovirus and are closed to visitors.

((((( @AgitatedGoose )))))

I hope you can see him soon, hold his hand, and that he gets some peace.

♥️

An update on my Dad everyone.
He is due home this evening, he persuaded the consultant that he really wanted to go home. He won’t be on iv antibiotics, he will be back on oral ones. The end, the consultant said could be in a couple of days or at best a month.
My brother has been with him most of the day trying to see the discharge nurse, finally did at about 3 pm.
I’ve been up to his house with Mum to get the bedroom ready again and carers will come in 3 times a day I think. We set up the spare front room of their house as a bedroom. I live 2 hours away.
My dad wants my mum to sleep with him……she says she will try the sofa in his room. They’ve been married nearly 60 years.

Sending much love @Sunflower101 ❤❤