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.

Hello Millicent, I'm holding your hand from Australia. I'm so sorry your mum is having such a difficult night. PPs have mentioned a morphine driver, and I hope your nurse will suggest this when she attends to you in the morning.

My DB and I have seen both our parents out. Tho we still miss them so much it comforts us to know we were able to give them a peaceful passing. My mum liked the TV shows Mad Men and Homeland, and we had those playing on her final night. We also talked to her about her sister (who had died three years previously), and my mum felt her sister was there in spirit. My dad simply liked the sound of my tapping on my laptop, and of people sitting around chatting.

This is our generation's burden, and also our privilege -- to be with our parents and reassure them as they leave this life behind. We have to do it, however terrible we feel, because it brings them comfort.

Hold her hand, Millicent, and we Mumsnetters will hold yours.

Another handhold here. I've been in a similar situation where my DM kept begging us to stop the chemo and let her go. She never had chemo she just couldn't remember what the syringe driver was for. Ask for midazalam to settle her as well as the morphine and I hope that you get some help/support in the morning

💐 and another hand hold.

Thank you all.

Sending a handhold from the US, we are all around the world thinking of you and sending our good wishes.

It sounds like a different medication might be something to try and get tomorrow, or the addition of an anti anxiety med.

Can you talk to your DM about your DF, do you think hearing that he is waiting for her and is watching over her would be soothing for her?

Hugs

Milicentbystander72 There are a lot of us out here thinking of you at this difficult and precious time.

It feels as if we are never enough to those that need us, but we are as much as we can be.

Here's another hand hold.

I'm still awake and thinking of you OP.

Another hand hold from me OP. So sorry you and your DM are going through this

You must eat and drink, Millicent. I know easy for me to say. Can be small amounts. Everything will be semi impossible to bear if you have no fuel.

Your family history is unfair. It turns out that cancer is common in my DHs dads family. Bit of shock to us, too.

Handhold and love from me too.
I've been in exactly your situation with my mum too. It's a special kind of awful and not sure anyone who hasn't been through it truly understands. Like belonging to some sort of shitty club.
As others have said - worth trying to mix the meds up a bit.
Is she on fentanyl patches as well?
We found patches, oramorph and some sort of short acting super strength codeine worked best with a benzo (midazolam) in the final weeks to help calm.
Sounds like a review of meds def needed. The palliative care nurse should be able to do this and MacMillan will be able to advise too.
Will Marie curie nurses be able to get out to you?

Just hang in there for tonight. You're not alone and there's plenty here who know how you are feeling right now and with you.
Xxx

The sun is only just starting to set here and it will soon be rising where you are. They say the darkest hour is just before dawn. I’m here to hold your hand. Thinking of you and your mum.

Sending love to you all. I hope you are able to have a break at some stage.
You mentioned she liked to read . Can you get audio books for her to listen to?

I hope you are doing ok. There is lots of support on here for you.

Can I suggest you and your sister have a notebook (doesn't have to be fancy, a bit of paper will do) so that you write down the questions you have as and when they come to you? I found that really helpful, especially when time with certain professionals was really limited, because often I'd have 5/6 questions, but by the time you'd discussed 2, someone made tea, someone went to the loo, you discuss 3, then there's a phone call etc you end up thinking "Oh shit, I forgot 5" after they've left. Then just tick them off if they are resolved/asked.

Sending hugs and love Reminiscing on the old times does sound like it would be helpful to you and your mum. I'm so sorry, Milicent, that this is happening to you. What a lonely time filled with waiting for the worst to strike. It's so dreadful when it feels like life's slowed down and the tones of our loved one's last hour are swinging loudly. It will seem like everyone around you is speeding past, blissfully free from the misery you're having to confront on your own, but you will find that there are those around you who will surprise you with their compassion. They will touch your heart, and they will be able to provide you their presence and comfort in even your darkest moments; empathy is what binds humanity. The pain of grief does not disappear with time, but the stretches of despair will start to shorten and instead the wonderful moments you spent with your beloved will grow largest of all; you'll remember their legacy for all it was, coming to terms with the wholeness of life that we've all entered into from birth. It's important to be easy on yourself, which includes crying when the memories rush back and allowing yourself the tenderness you would bestow upon another in your situation. From across the world, I'm sending my love

Sending you much love and hugs. You are amazing! xx

Another one awake here and sending you a gentle squeeze of the hand. x

Hand hold. I've been there with my dad OP. Oral morphine is an hallucinogenic and he used to call out all the time. It's really scary but it is normal IYSWIM. It's the kindest drug for your lovely mum and to have you by her side will be bringing her great comfort. And it will bring you the same in the years that follow once the shock of these months start to subside. Please ensure you take care of yourself. Eat. Get a break. End of life care is emotionally and physically draining. I hope you have the care of the MacMillan team too? If not, please ask for it as in my experience they are brilliant. Hugs for you.

Hugs and handhold and a virtual to hug, another one here for you.

I got up to try and get a bit of cool air into the house, SE England and still 27C indoors here, no sign of any thunderstorms yet.

I'll be here with you until after the sun is up Op.

Sending love, Milicent. You sound like a really lovely daughter. I don’t think I’d be able to look after my Mum like that. I’m glad your sister is there for you as well xx

@Milicentbystander72

It is extremely hard nursing a loved Parent at the end of their life.
Our dear Dad got very confused, made far worse by too much Calcium in his blood {I think it was Calcium} ..It was treated, but very distressing.

It is very hard for all concerned.
It can also make us fear for our own Mortality..
Have you a Hospice nearby that can help? Nurses popping in can be a huge help.
Best wishes...

Another one joining you on a sleepless night, OP, from stiflingly hot London. I am so sorry for what you are all going through. What you are doing is love in action. I sincerely hope that the new day will bring better support for you and for your DM, and that the next night will be a peaceful one

You are a fantastic daughter. Your mum must be comforted knowing you are near her. Sending prayers for you both and a hand hold...

❤️❤️

Another handhold for you OP. You have the strength in you to get through this. When it feels like you don’t, come here and we’ll lend you ours. Not long now until sunrise.

I'm holding your hand too. Similar situation, almost five years ago. Broke my heart which has never quite mended. But one thing, later, when it's all over, you'll be able to remember how you were there, doing everything you could, right up until the end. You couldn't be doing more.

I second a notebook to write your thoughts down, and your questions.

Is there a cottage hospital near you doing palliative care or respite care, even for a few days, where you can still go there and be with her, but someone is also there to back you up and help, and change meds etc?

Word of warning. don't hold out too much hope for macmillan -- the macmillan nurse assigned to our case was a horrible self-obsessed woman who should never have been in a patient-facing job. I got to hear all about her bullshit dental appointments "trauma" of how busy she was, and other excuses for never being around and not being useful.

I don't want to end on a negative note. You are doing one of the most important things you can possibly do for your mum. she was there at the beginning of your life, easing you in, you're there at the end of hers, easing her out.

And you have a sister who's around. that's a blessing too.

Hugs.