Anyone awake for a hand hold?

[Milicentbystander72]

My DM is in the final few weeks of her life. She has extensive advanced stomach cancer. It was only diagnosed as cancer just under 3 weeks ago. Up until then she had felt tired for a short spell, had a urine infection, discomfort in her side and low iron. She was sent to the hospital by her GP and stayed in from 21 July until she was discharged only on Saturday evening,

The situation with C19 we were unable to visit her in hospital and even her own GP is waiting for communication on the exact details of her diagnosis. She has been discharged with palliative care only. There is no hospice provision where are so me and my sister are trying to care for her.

Her decline has been brutally swift. She can no longer do anything at all. Tonight she took another turn for the worse and we had to get out of hours district nurses to come and give her a catheter.

I'm now sitting with her on my own. She keeps crying that we will make a mistake and think she's dead when she's not. She keeps waking up shouting that she's not dead. So far tonight she's not slept peacefully for any length of time. She's on oral morphine. Up until tonight she's been peaceful.

I feel so alone and frankly traumatised. She terrified and keeps letting me know it. I haven't slept or eaten for the last 24 hours. I nearly dropped her trying to help her in the toilet earlier (which is now she now has a catheter). I'm very on edge.

I'm not sure what I want from this thread but I guess just wanted a bit of company. I honestly feel this is so horrific.

Aw so sorry for your struggle, it must be so very frightening and distressing for you all. I am sending the biggest hug and both my hands to hold.
I work in social care and I know from past experience than you can get help from Marie Curie or Macmillan nurses who will come out and sit with your mum, just to give you a chance of some shut eye. Even if you can’t actually sleep sometimes the company of experienced carer is so comforting.
You are all in my thoughts x

She keeps shouting out that we're going to bury her alive.
Fucking hell.

Do you think the oral morphine could be causing some bad dreams? I mean, she's not in a happy place obviously but this is horrific.

Morphine can send you... ‘wappy’ In my personal experience.

I’m so sorry, here with 🌸🌸🌸🌸

Thank you yes, Marie Curie is trying to be accessed for us at the moment but I'm unsure what we may get. We're in rural Wales and provision is spread out and patchy for lots of things.
This has all been so swift and she's only been home a few days we feel like we are running to catch up with ourselves and as soon as we ask for some care the situation changes.

You could try phoning your District Nurse again and let them know how distressed she is. They might come out again?

I’m still here. What you’ve been through already is awful. How brave you are to sit with your mum now. This must be so traumatic but you’re there. You’re doing something wonderful just by being there and facing this incredibly sad and terrifying event. I wish I could help you.

I’m just wondering- does your mum normally listen to the radio at night? Would she get any comfort from that? (Obviously only good if it’s something she would normally have on. Don’t make the situation worse by playing a dreadful station she hates!)

Morphine can play tricks on you, it sounds like it is exacerbating her fears, all you can do is reassure her that you are there and she is safe. Still here holding your hand x

Giving you a hand hold, that sounds so hard. I’ve heard morphine can make your thoughts very muddled.

Calming her down using music, scents or gentle rhythmical talking (like an audible book or mindfulness thing on YouTube) might help. Or talking to her about good times like family holidays, Christmas, something to pull her mind away from these terrifying thoughts.

Sending you a massive hug 🤗

@whatsthepointinwasps

You could try phoning your District Nurse again and let them know how distressed she is. They might come out again?

Good idea. It would be great to get some more help and as this is all so sudden you probably aren’t sure what’s available. I have no idea myself but I’m just thinking as the nurse came out once then maybe they would help again?

Couldn't read your last post and run. I can't believe your strength right now. Sending hugs x

Hello, another hand hold here. I will be thinking of you.

@PurpleFrames

Couldn't read your last post and run. I can't believe your strength right now. Sending hugs x

Yes you’re so strong. What an amazing daughter you are.

She not a listener of music, radio etc really. She used to watch tv a bit in the evenings and read books.

I have an iPad on currently with low volume. It's not helping her, more me. I keep clock watching waiting for a hint of daylight. Somehow that makes it a bit better.

I will discuss the terrors and oral morphine with district nurse or palliative care nurse later on in the daylight if I can. Sods law, her GP came to visit her only this afternoon. I said she was doing fine with the morphine tablets. Things change quickly. If indeed they are causing her distress. Who knows?

Handhold and hug from me.

The out of hours district nurse that came earlier is covering virtually the whole county. I doubt she'd make it back. I don't think she can help with the morphine.
We have a palliative care nurse but she's only available during day hours.

It's like a massive jigsaw puzzle. Everyone is lovely and caring but sometimes it's hard to fit all the care together.

Are you managing to get any rest or will you be able to rest at all tomorrow?

So sorry to read your post, you are in my thoughts. To have someone who loves you so much and be with you at the end is what we all hope for. You are giving that to your mother. Be kind to yourself. Talk to a doctor about your fears.

Hey @Milicentbystander72. I'll hold your hand too. I'm awake as I'm a carer for an aged Parent too. I've just dealt with a toilet accident and linen change. I sat with the other aged Parent through the nights with their terminal cancer, you have my sincere compassion and sympathy.

Is Mum under palliative care team? I found them very helpful and understanding when I rang them. Is Mums agitation could be due to the UTI or pain do you know? The UTI is worth treatment to calm her down. From what I experienced with Dad's cancer, the next stage in pain relief is a syringe pump for pain relief which left him truly calm and deeply asleep.

I am so sorry you are experiencing this. It is very difficult to watch them suffer. Try to have something to eat and drink when you can, I truly understand how difficult it is. I had to provide the care alone, the tiredness is almost unbearable, but remember that not taking care of yourself won't cure Mum.

Sometimes morphine kicks a panic-type reaction in, and she is rousing more. Sounds like this is happening. She may need to have her dose increased a little bit. It will make her sleepier.

Greybudgie blimey. That's awful. How stressful for you. Well done for keeping going. Hand hold back to you.

We do have a palliative care team (well, a nurse I think). We only met her yesterday. There is the possibility of a morphine driver. It's strange though as they ask DM if she's in pain and she says no so they haven't mentioned it again, The oral morphine seems to control the pain but tonight especially she been very upset, tearful and restless.

It may well be a better option though.

So sorry for what you're going through. It's really tough. Just a thought in addition to what others have suggested. I called 111 towards the end when my DH was in a bad way (Stage 4 bowel cancer). They had a bunch of doctors, nurses and paramedics they could send out - actually the doctor came with knowledge, advice and drugs. I'm sorry I don't know if this would work in Wales and during Covid-19 but it might be worth a try.

My uncle was very panicky on morphine, he thought terrible things were going to happen and that the Drs and nursing staff were trying to hurt his visitors.

At one point he managed to secrete a knife under his bedding for protection.

My mum (his sister) and his wife pushed for a change in medications and it made a huge difference. He was a lot less distressed.

Sending you lots of love and hugs.

Dad couldn't communicate his needs clearly on oral Morphine. He was fortunate enough to spend his last 48 hours in a hospice on a syringe driver, truly pain free. The excellent team there administered a mix of pain relief and other drugs which truly relaxed him.

This is so unfair that you and your sister are losing your other parent. You are doing a very noble thing to sit through Mums last ilness. I found it helped with the inevitable grieving process afterwards as I knew they had not died neglected.

Oh my goodness you poor thing- this must be unbelievably stressful. I’m awake - can’t sleep at all. Sending you my handhold- I am not sure how old your mum is but I have nursed many elderly patients and gone through many difficult times so I have a little insight into the stress you must be going through. And in your own too. Nighttime is bad for everything health or anxiety wise so hang ok in there. I am sorry you are coping with no one there. Try some lavender oil, a pillow spray, a little music or quiet radio in the background. Thinking of you at this time. 💐

Thinking of you.