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

Thanks everyone - I did some shopping today (fruit at last!) and am getting some sleep, enough to keep me going for now.

The biggest stress is thinking Mum's peaceful, then something new happening and the whole phoning the nurses, getting them out, doing new meds starts up again.

Some of the things Mum's been hallucinating about are mindboggling. We'd have laughed together about that in the past. 😥

I’m glad your Mum settled after the medication and hope it continues to work for her. Wishing you and your Mum a peaceful night.

Thanks everyone for checking in with me, I really appreciate it.

Feel weird today, the days seem so long, and it feels like barely any time has passed.

There can only be a few days to go, Mum asks for me, checks I'm there, and sleeps. I moisten her mouth every now and again when she wakes.

It's all very peaceful most of the time.

I'm not sad, I feel proud really that I've taken care of her throughout her dementia, and that I've been able to advocate for her. I honestly don't think I could have done more for her whilst she's been receiving palliative care.

My mum brought me up on her own, and it's been my turn to look after her. I am SO SO glad that she's at home with me.

All I want now is for her to be peaceful, and happy that I'm with her.

Oh @GoldenSpraint i know this feeling well. My mum got names and people so confused at the end, and some of the names she conjured up would have had her howling with laughter if she was well. I wrote some of them down, they sound like Dickens characters, because I feel like when it’s not so raw they’ll bring a real smile to my face.

That's a good idea! I want to remember her being surrounded by churches and asking me where the ground goes and her asserting very strongly that she is the personification of our address!

"I AM 21 Acacia Avenue!" 😆😂

Wishing you continued strength @GoldenSpraint and sending a hand hold across the ether.

Thinking of you @GoldenSpraint

Thank you so much again everyone.

I think my mum is experiencing terminal lucidity as she seems weirdly alert after mainly sleeping for a week.

It's horrific to be honest. She's almost ranting, but the district nurses just say she's chatting (?!?!?!?!) so won't give her anything to calm her and let her sleep. She is so distressed.

I hate that my mum's end is now full of distress instead of calmness.

This brings back bad memories for me too @GoldenSpraint - we had the same experience but with hallucinations and gabbling chatter towards the end which was completely out of character and distressing as it seemed to indicate pain or at least discomfort. We had a conversation with the medics at this point about increasing analgesics which did help a bit but it was a horrible time. Thinking of you - it feels interminable but it will pass and then the better memories come back.

Really sorry to hear that your Mum and you are having such a horrible time and hope she’s more settled soon. My experience of many NHS staff is that they don’t listen to
relatives and insist on continuing with their own agenda. I think it’s likely that your Mum is in pain or having frightening hallucinations.

Poor woman @GoldenSpraint. It does sound like she needs a tranquiliser, sedative or something to ease her. Surely that's the purpose of 'palliative' care?

Thankfully my dear mum seems to have stopped being so agitated and is pretty peaceful - I so hope this lasts!

She says she hasn't had any lunch and is hungry (she hasn't eaten in almost two weeks), and accepts me saying she can't swallow at the moment. Which is true.

This is a good change from her earlier agitation as she just got more and more worked up and nothing would placate her.

The only small issue at the moment is her feeling "thirsty" but I know this is just her dry mouth, and drops of water on her tongue and lip balm are fixing that for now.

We had a lovely conversation earlier where I sat and held her hand. It was so peaceful and what I envisaged we would be doing near the end.

The surgery have spoken to the district nurses and any agitation from now on will be treated with the medication that's here ready.

She usually has a peaceful night, so fingers crossed.

Thanks so much everyone for continuing to look in on me, and say such supportive things. I appreciate it, and long for mum's gentle release soon.

Absolutely - and the medicine for it is here ready to be administered. I too thought the whole point of the medication they leave with you was for it to be used to ease symptoms and make people's last days calm and pain free. Every step of the way I've had to push for medication.

They only wanted to give pain relief when mum was in pain, not to give it so she was never in pain. Just awful! I had to get the surgery to intervene then as well.

Oh I've been at war with the district nurses for about a year now with various matters. I've had to have my mum's surgery intervene on so many occassions just so my mum gets her needs met.

My Dad is now end of life after having a stroke just over two weeks ago. Today I had a long talk with the ward consultant and we both agreed that palliative care is the best way forward. Dad has absolutely no quality of life left and has gone from living independently to needing full nursing care. I’ve asked for a referral to a local hospice as I wouldn’t be able to cope with bringing him back to his home.

It's good that you've had a talk with the consultant and are agreed on a course of action you're happy with.

I'm sure the hospice will provide him with excellent care in his remaining time, and it'll give you the opportunity to spend some time with him away from a hospital environment.

Much love to you. ❤️❤️❤️

@GoldenSpraint Thank you. I’m really hoping that dad will hang on until a bed becomes available at the hospice. It looks like a lovely and peaceful place whereas the ward is very noisy at times. I hope things have been more peaceful for your Mum.

Thinking of you both @AgitatedGoose and @GoldenSpraint

Hope it's OK to join this thread. My mum was diagnosed with metastatic breast cancer about 16 months ago, on "palliative" chemo up until about a month ago. A fortnight ago she lost feeling in both legs (has a previous diagnosis of Ms), went for MRI and had diagnosis of leptomeningeal disease on Tuesday. She's gone downhill rapidly. Waiting for a care package, waiting for MDT morphine, waiting for incontinence products. First DN visit last Monday, she wasn't intending on visiting for a fortnight, but I called and she's coming on Monday.

I was only meant to be visiting for a few days, but have changed my flight home, need to go home, get laptop, see kids and then come back.

My brother lives an hour away but has been fab - though he's a single parent so is juggling carinf for his son with visiting mum.

The consultant has said short prognosis, but don't think mum realises that could mean weeks rather than months.

Hospital bed being delivered tomorrow.

Meanwhile I'm here on my own shitting myself. Haven't spoken to DP in days - I'll just cry down phone to him.

I've never felt so alone

Sending hugs to you @Gcn It's an awful time when things change and you suddenly find yourself trying to work through the end stages of someones life. And a lot of that is about waiting.

Be kind to yourself. ❤

So sorry to hear about your Mum’s deterioration @Gcn. This part of the journey can be one of the most desolate and lonely places especially if you can’t have your family around you or don’t have any family. Try to take each day at a time and allow for periods of self care if you can. Sending hugs.

I hope you're coping @GoldenSpraint and remembering to take care of yourself as well as your Mum. How wonderful of you to give support to others going through awful times too!

@Gcn You poor thing - you've really got your hands full. Nursing my Mum (although our logistics were a lot easier than yours sound!) really brought my brother and I closer - I hope this happens for you too, and that your Mum has an easier time.

@AgitatedGoose Hope that bed becomes available!

Sending love to everyone going through this hard time at the moment.

Thank you.
Its harder because my aunt and cousins obviously want to visit her, but she's refusing to see them. It's down to my brother and I to tell them - which they are finding heartbreaking.

My Dad is now in a hospice but I’m really wondering if this has been the right decision. Yesterday the hospital consultant and I agreed that palliative care was the best way forward. They removed his naso gastric tube and I was told he’d only be offered food or fluids if he asked for it. I asked for a hospice referral as I felt it was the best place for him to slip away with dignity and that his end of life care would be more expertly managed. Dad remains in a semi conscious state and periods where he opens his eyes are very short. The nurse at the hospice said his hospital discharge summary said level
4 foods and thickened fluids. I’m absolutely horrified that they’re going to try feeding him as surely this is just going to prolong his misery and was the last thing I wanted. Obviously I dread the thought of Dad dying but I know he wouldn’t want to live like this and I get the impression he’s given up but his body is fighting on. I also
know hospice care is usually only for a few weeks so what happens after that.

@AgitatedGoose I really hope the team can reassure you. I shouldn't think anyone is going to try to give him anything to eat or drink when he's not alert- those recommendations are most likely only so that they have some guidance if by any chance he does rouse enough to ask for something. Please do tell them your worries.