DM in hospice and I'm crumbling

[SoySaucePls]

DM has had a 2.8 year battle with stage 4 cancer. Now 80.

My DB and I have been lucky enough to have a carer but our lives have been on hold for nearly 3 years. We are both shattered and exhausted from the continual trips in and out of hospital, getting her meds, calling for help, taking over this and that and for caring for all her other co-morbities and she has a lot.

I went to see her today, as I did yesterday and the day before and the day before and she's obviously very much in pain. She cant have conventional pain relief so they're using a 2nd/3rd line of drug choice and it doesn't seem to be working.

Already after 2.8 years of shit this feels like the final horror tragedy to finish me off. The whole experience so gruelling.

I look at end of life care and how she is a fragment of her former self and I just wish it would end now.

I don't wish for her to go but I am so very sad, exhausted, burnt out and beyond everything I don't know what to think anymore.

Tomorrow I am taking a break from hospice as taking my DS to hospital appointment. But in all of that there will be not time to myself to be alone, to process. To take a breath. I had a nice friend go into counselling mode when I told her what was happening. She told me try and find a moment for a "nice cup of tea". WTF?

I feel guilty for all the time i'm not there and she is alone, trying to cope with the pain. Yet I hate visiting and I hate my time there. It's very upsetting.

No one has brushed her teeth since she got there 7 days ago so I helped her do that today and fed her her lunch.

It's such a sad experience to see your DM in such a weakened and painful state.

I hope they have legalised assisted dying when I reach my end as I would not want to go through this or put my kids through this.

She's been so stoical through it all. I want this to be over. Now. I feel like I can't take even one more day. I will miss her immensely. She was my best friend. But this is torture.

Sorry I haven’t read all the comments. Have NC so I cannot be identified.Just home from work! As a palliative care nurse working in an EOLC environment I cannot understand why your darling Mum is not getting the most basic care in a hospice! Mouth care ,hygiene and pain relief is the least that anyone would expect!
Please be assertive and question everything with the manager/ nurse on duty.
I really understand that you are feeling sad and vulnerable but you are your Mum’s advocate. Sending love ❤️

I understand about the pain relief . I have had the same reaction to opiate type drugs my whole life. It is so difficult to accommodate pain in these cases as you really don't want her to be violently sick on top of everything else. But it seems that as hospice care , surely some alternative is available? It must so frustrating as you can only deal with the info you are given .
You are doing everything you possibly can OP. So many of us do understand as we have been there. It is hard to see someone you love suffer and be unable to help . 💔

I'm so sorry for your Mum, and for you. Is there really nothing they can do? When my DF was in hospital earlier this year and they discovered he was riddled with cancer they gave him something via a syringe driver and he was out of it for the rest of the week until he died. I have no idea what they gave him, I was just happy that he had a peaceful end.

I hope the hospice can do something better for your Mum.

@SoySaucePls like pp I am also horrified that your DM is in a hospice and not receiving basic care, that should be standard practice for them. I have name changed as I work in this field but a patch wouldn't be used for unstable pain where I work. If it's bony pain that's usually not opiate responsive so she maybe could benefit from paracoxib injection BD to help ease the pain alongside the alfentnyl in the driver.Is mum able to eat and drink at all? If not, mouthcare should be done at least hourly. If mums swallow is still
Intact but she is fatigued, ice creams/ice lollies to suck, jelly and yoghurt are all good things to try as no effort required. Please ask to speak urgently to the nurse in charge or ward manager tomorrow, lay out your concerns around the nursing care.

I have worked for charities all my working life and always say to my team that if you want donations to hospice, you have to earn them by providing first class, excellent care otherwise families may as well leave it all to cats protection!
In other words showcase how fantastic we are, how we go above and beyond to
Provide a personalised service for our families, and above all else treat each patient with the dignity and respect you would like your own family member to receive.
Thinking of you OP. ❤️

You are not alone OP, it's sadly not that unusual to think, "this is no life for you, if you were a dog we would have called the vet round". To know they are dying and it's just painful and boring and to want them not to wake up tomorrow.
You can't help that your Mum is ill and you didn't cause it, all you can do is what you are doing, having her back, doing what you can for her.

Hiding in the loo for a weep is always a classic.

DM still in excruciating pain. They’ve removed the driver.

Fentanyl patches are at 75mcg.

Fentanyl lozenges are 400mcg every two hours but she never gets anywhere near that amount every day.

The consultant says this is a very high level. Although she’s not taking anywhere near the daily quota for the lozenges.

No further plans to change anything.

I pushed the doctor hard yesterday and said what is modern medicine for if you can’t get her out of pain.

Platitudes of we don’t want to do more harm than good.

That it’s only been one week and that’s not long enough to assess her???

Lorazepam helped over night to relax her a bit and she slept a bit more.

I’m wired from again watching her out of her mind in pain unable to talk or communicate due to the mind numbing effect.

Shes exhausted and she’s fading fast. Looks so sad, so down, so depressed. I think she is wondering internally why this is happening to her. She’s been a good and very kind person. Catholic. Always magnanimous, never reared up at anyone.

What a horrific way to go.

Have wondered about bringing her home as then at least she’d be at home in pain instead.

The district nurse was more proactive than this and offered Alfentanil driver. We sent her to hospice as we thought she’d get the best care there.

I’ve gone numb myself. Seeing my mum in pain day after day is leaving me traumatised. I can’t sleep.

I am so so so sorry, this is awful and nothing at all is going to make it better. I am so sorry.

I have a small weird suggestion about helping you to sleep etc. When we did at home hospice for my dear parent, I had the same issue and it was like being traumatised all over again every day. I read somewhere that you could sort of give your brain a break by playing Tetris or a similar game for a while every evening. It'll demand enough concentration from your brain so you can't think about what's going on so actively, and it might make it easier for you to sleep. FWIW I kept playing Tetris every evening during my dad's hospice care.

I know it sounds funny and trivial, but I feel like it could be a small help at a very difficult time.

I am so incredibly sorry you are going through this, and as I have no experience personally I wouldn't like to offer advice incase I'm wrong.

However, I just wanted to say how beautifully you write about your mum - it's very clear just how much you love her xx

I’m so sorry. It’s the toughest thing to watch. I’ve lost 5 family members to cancer and it’s unfathomable watching that much pain.
But I really would expect them to do more. My dad couldn’t have morphine either but there is an alternative - a synthetic morphine I think and that along with sedation seemed to take away his pain and speed things up (at least that was my interpretation). I think these things are at a doctor’s discretion. Perhaps they want to keep her conscious to give you that time with her.
no words will help but sending you the strength to get through this.

DM came home on Monday. She'd given up by then and started to deteriorate rapidly due to the immense pain she'd experienced. Finally they put the driver back in on Sunday. Then she asked to go home that evening and as she was fading fast they did a fast track exit so she was back at home on Monday by 5pm.

She died this morning at 8am.

The district nurses were far more generous with pain relief and upped the syringe driver on Tuesday. They happily gave top up injections. Why is it that they had so much more compassion to relieve pain than the doctors at the hospice?

I hope assisted dying becomes legal soon because her last 2 weeks on this planet were shocking. No one should have been put through that.

Once she was home she hardly conscious though. I wish she had come home earlier. I think she knew she was home though as the frown left her face, finally.

She is at peace now. Thank you again for all your messages. I am in pieces and don't know what to do with myself. I loved my Mum so very very much. I'm never going to see her again or get a text or chat to her. Can't stop crying.

I know you won't feel like it now @SoySaucePls but you did amazing things for your dear mum. Advocating for a loved one against the medics is relentless and draining but you did it tirelessly. I am so sorry for your loss.

I am so sorry to read this, try and take comfort that she is now pain free and no longer suffering, and nor are you.
I can tell how much you loved her.

I’ve just read your whole thread and I am so sorry for your loss and what you have been through.

Try and take some solace from the fact she came home and the frown left your lovely Mum’s face.
Take good care of yourself x

My Dad died in January from cancer, and spent his last 2 months in a hospice and then a nursing home. I'm still putting myself back together, we had to fight every step of the way for care/medication. It was truly horrifying and the respite that we thought care would bring never arrived, if anything it made me even more on edge. I don't think anyone who hasn't gone through it recently would understand the care sector isn't honestly that caring anymore.

Be kind to yourself - it takes a long time to decompress and process it all, and find some level of normality again. I'm so very sorry for your loss

I'm so so sorry @SoySaucePls for the loss of your lovely DM. 💔

My dad died 5 years ago from a Co

Sorry, app keeps glitching for me today....

... from a complicated condition. It was relatively sudden in the end. He spent 3 weeks in excruciating pain, only finally getting relief in the last 48 hours when they properly moved to palliative care.

I'm still so traumatised by those weeks, I don't think I've actually grieved for him.

Like you, I wondered how it was possible in our medical world today - and he was ostensibly receiving the best consultant-led care (Ireland). I had seen my DGM die the year before, peacefully from old age (just shy of 100), a completely different experience.

I'm really sorry for what you & your DM experienced. You did everything you could for her, and she was peaceful at the end.

Thinking of you tonight. 💐

I know what you mean. My mum has stage 4 cancer. I don't want her to die. But she isn't mum anymore.

I want an end to this limbo and her suffering. But I feel horrible for feeling that way.

Watch the film A Monster Calls. Strange suggestion but when you do, you'll get what I mean. It made me feel better for having these feelings.

Sorry I just saw she passed today. Sorry for your loss. Thinking of you x

So sorry for your loss. From your posts it seems you brought your mum great peace by bringing her home and allowing her to pass more peacefully.

You may not be able to speak to or see her anymore but she will always be a part of you so will always be with you!

Sorry for your loss. And what @Ratfinkstinkypink says

I am so sorry for your loss, and the sadness that witnessing her pain is causing.
I went through something similar with my DM who was, like yours, very stoic. Time will eventually ease those memories, and you will eventually be able to smile when you think of her. Meantime, you and your DB need to look after yourselves. 💐

@SoySaucePls I'm so sorry that you mum died, and that it was so distressing for you all. But now she's not suffering.

I lost my dad to dementia a few years back and after he died I kept re-living the final visit and his much diminished and suffering state. It was heartbreaking. But what I can say is that after a while (in my case 2-3 years) memories of him before the illness took hold, became my main memories of him and the first thing I think about when I remember him. I now picture his ruddy, wine drunken face, laughing heartily after a fabulous family dinner, playing the piano with his grandchildren, fumbling uselessly at DIY, moaning at my mum, pretending he didn't like the cats, the secretly stroking them and talking sweet nothings to them. All the lovely, ordinary parts of him started to come back.

Please do get some support from cruse , or wherever you can, to work through it. Write a beautiful eulogy for her.

And I can recommend the book 'levels of life' by Julian Barnes. It's a slim volume, and a beautiful story of his experience of losing his adored wife. It really is a wonderful book which explores grief and normalises things like still having conversations with your lost person (which many of us do).

Sending unmunsnetty hugs to you

Deepest condolences on your loss.
We also found hospice care was a long way from what we anticipated, for different reasons, when my DF spent his final days in one.

Oh @SoySaucePls I am so sorry about the loss of your darling mum. You and your brother did her proud so try and take some comfort from that.

My mum died from cancer 13 years ago now and the last few weeks of her life, much as I loved her, I just wanted her to go, to put her and us out of the torture, because it is torture.

Make sure you get some support for you, be kind to yourself and just roll with it. Sending you big hugs x

Thank you so much for your lovely supportive posts. Reading your words helps so much.

Thank you for saying I tried my best and that the frown left her face, that meant a lot. And that my DB and I did our best. We really did try so hard for so long. And to acknowledge the shock of how this happened, that it was really shocking to watch it all happen and have no control over any of it. The feeling of helplessness has been so awful. It's hard to feel at peace because of that.

I'm really sorry to know that others loved ones have been through this uncontrollable pain or a bad experience in hospice. It's not what you expect at all.

I've taken to heart that some happier memories may come in the future and I'll remember the good times more than this. I so hope so.

I managed to go to the shops today. I didn't want to but we had nothing for dinner. It felt like going out the first day with my DD in her buggy. I felt very alone and afraid. I've had anxiety over the years and I could always ring DM at any time of the day or night - but she's not there now. I tried very hard and managed to get there and back without crying.

It all feels so alone. So quiet and so empty. I can't understand why life can sometimes be so painful. Nothing ever prepares you for this kind of thing, does it?

Thank you again. I'm so grateful for the kindness of strangers taking some time to write and help.

I'm going to order the book now by Julian Barnes.