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.

@Milicentbystander72

You are doing a great job by the sounds of it.
A lovely Man I know cared for his Mum for the last year of her life, on his own, { he did a super job, but still ''beats himself up'' about things he wishes he'd ''done better'' {his words}

Be kind to yourself...Try to eat, your dear Mum may settle with better meds..It was our dad being ''confused'' that was the most distressing thing for us {and probably him} ..
But when he did pass, it was very peaceful.
He chose to die while we were all asleep in the house.... He quietly made his exit..
We were sad we weren't at his bedside, but he had a feat of ''Deathbed Scenes'' ...and ''People mob handed around me bed''......So I think he made his exit when he chose.....We were near, but not ''Mob handed''

A surprising amount of people do seem to slip away 'alone'. while their loved one is in another room....I wonder if this is what they choose?

It will be daylight there soon and you’ve nearly made it through the night. I hope you can contact all the services that can help you and get more relief for your mum.

Don’t forget to rest yourself, deep breaths.

Morning has broken and I hope things are more settled now. Do talk to the medical team about the distress and see if they can change or add any medication. Sending you a huge hug and lots of strength

Just read this and didn't want to ignore.

I don't have any advice which hasn't already been covered. I wanted to say that I'm holding you all in my thoughts and sending peace, love and strength to rural Wales.

You can't get a better group of women to give support than this nest of vipers. There are some very wise mumsnetters who are no stranger to your situation. I hope their advice helps you.

I'm so sorry thar you, your sister and your lovely mum are going through this.

Hugs.

Oakleaffy interesting that you had the experience of your loved one wanting to be 'alone' when dying.
My dad slipped away quietly while my DM and Dsis were only 10 mins downstairs answering the door to the GP and having a chat with him. I believe it's very common for the dying to almost 'wait' for alone time.

Yes, morning has broken and things do seem marginally better. My Dsis is up now and we're having a drink and a chat. I'm about to go and rest my eyes for an hour or so.

Hi @Milicentbystander72... I have seen both my parents out and found the same thing, too. The whole experience has led me to study nursing. I can tell you that morphine does slow respiration a bit, and that is why she was restless and panicky. It is her brain trying to “rouse” her to keep her going (even though the rest is kinder because of the pain.) I would definitely call and discuss last night with the nurse today. I think the morphine driver is a better option at this stage, as the dosage can be altered on the spot to deal with these symptoms. (They are most often worse over night.)

You have my sympathy my darling sister died of stomach cancer four years ago, it was completely out of the blue she had no symptoms until it was too late and her deterioration was rapid. Seeing her in the hospice was the worst thing ever.

I'm still reading these replies. It's awful so many have similar experiences but comforting to know we're not totally alone in this truly awful situation.

I really wish we had a hospice place. It's never been a serious option. If she were in a hospice I think we'd feel more confident, more reassured and less on our own struggling in the middle of the night.

And less physically tired I guess.

Willowmartha1 I'm so sorry about your sister. My mum too was active and well less than a month ago. It's so frighteningly brutal and swift.

We still have no clear communication from the hospital about what type of cancer it is, just that it's stomach cancer that's spread.

Out of interest, were you ever told it was one of the cancers with a possible family/genetic link and is there any screening available? (Sorry my mind is racing).

@Milicentbystander72 thanks, no all I know is that she had h pylori two years before she got ill but she was being treated for that, now I read that h pylori can lead to stomach cancer in some cases. She was initially told she had a kidney stone ! After lots of investigations and being sent home from hospital and re admitted many times she was finally diagnosed. She was told she had 6-9 months but died after five. I have health anxiety myself and what happened to her has always been my absolute dread (going to the GP for seemingly something simple then being told you have terminal cancer) so I tend to stay away, although I do suffer from Tummy problems so feel I should go and get checked out.

Willowmartha1 I understand that fear. My dad died of bowel cancer too (found extremely late after months and months of tests).

I'm currently suffering from gallstone pain (I know I have them and they have been seen on an ultrasound) but the heartburn and pains in the upper right hand side gives me awful health anxiety.

I'm hoping for counselling when the dust has settled.

Hello, I commented last night, just checking in to see how your mum is today and how you are 💐

Thinking of you at this terrible time.

I highly recommend the counselling if you can get it. I was severely traumatized after my mother’s death. (Lots of reasons). I wish I had realised sooner and booked in earlier.

Just checking in to let you know I am thinking of you

I hope you’re doing ok OP. I’m still thinking of you.

Hello.

Here we are again in the early hours of the morning. This time my sister and I are sitting up with DM together. DM now has a morphine drive and a small amount of sedative to help with any distress or anxiety.

Last night we were lucky enough to get a Marie Curie nurse overnight. My Dsis took the call to say we had one (we had no idea we would). She was so relieved she just cried. We both managed a fairly decent amount of sleep last night which was a blessed relief. The nurse was amazing.

Today however my mum has been unsettled. It seems she's not been in a very deep sleep at all for very long. She woke up and asked for ice cream, then tinned peaches and complained we had no lemon sorbet. She wants water every 15 mins or so. She has also been butting into our conservations with random comments so her hearing is still extremely sharp.

Tonight is slightly worrying. She's still a bit restless. She seems distressed saying she needs to get up to go for a wee and poo. The other night she was aware she'd been given a cannula and said it was actually more comfortable than she thought. Tonight she's seems distressed as she's not incontinent and wants to walk to the loo. She physically can't. This is upsetting her and she's getting very weepy again. She has zero strength in her body at all.

As much as we've really enjoyed having bits of 'mum' back today throughout the day we're trying to weigh up whether or not she may need more sedative to keep her peaceful. However more sedative may mean she might not wake at all.
The nurse believes she has only days left.

I am sorry you are going through this. It sounds like you are doing an amazing job and I am sure that it is making a big difference even if it might not feel like it. Sending you virtual hugs xx

I remember those interjections in our conversations around DM’s bed in her last few days. Moments of sharing, even if a bit nonsensical at the time, that’s we’ve laid down as the last moments of togetherness. I’m so glad you got a Marie Curie nurse to support you and your mum has a better collection of medication for the moment. It’s an odd and emotional time. I’ll be thinking of you.

@Milicentbystander72 I'm pleased you have more support and better pain management for Mum. There is a fine line between the driver giving adequate pain/agitation relief and rendering the patient unconcious, which the nurses work hard to balance. A peaceful, pain free passing is your the end goal now I'm afraid. You and your sister are in my thoughts.

Hello I am so sorry to hear this. My mum was diagnosed with stomach cancer and died four months later. She was also in terrible pain for much of that time. My mum died in hospital but I stayed with her much of the final week and slept in the room. Do you have the sponges that you can wet your mum’s lips and mouth with if she feels very dry? There should also be a cocktail of end-of-life drugs which can be put into the syringe driver, this can stop the hallucinations.

I am so so sorry.Cancer is a terrible affliction for families. Just over a year after my mum died I too was diagnosed with cancer. It’s been a very rough road for our family and I truly sympathise with you.

I’m sending strength and love and a massive handhold to you.

Hugs to you OP.

Hello again everyone. This thread has helped with support. It helps to chat in the small hours.

Tonight I have my niece keeping me company god bless her.
My DM has now had her morphine and sedative increased. The GP was unhappy about the furrowed brow and whimpering she was doing. We have artificial saliva to spray in her mouth but it's hard to tell if it helps. Tonight she's in a very deep sleep which is a relief.

From finding out she had cancer to this point it's been about 3 weeks. We're all shell shocked.

I happened to be awake @Milicentbystander72 and came across your thread and latest post. What an awful few weeks for you, I am so sorry. Sending you and your niece a handhold and a hug - your Mum is lucky to have you both there with her tonight, I am glad that she is a bit more settled. Hope you and your niece manage to get a couple of hours of rest each too.