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I don't know how to do this; a hand hold please

160 replies

bloodywhitecat · 28/01/2022 21:46

Just for tonight?

DH has cancer, it's terminal and it is spreading fast. He's also recently had a massive stroke so he can't tell me what's wrong but I do know that tonight he has had some break through pain so I have given him extra oramorph to help him. I also know he wants to die at home and I want him to be here but honestly, it is so so hard. He is settled and asleep at the moment but I can't switch off. If his pain comes back I will call our hospice for advice but tonight it has all got on top of me (and I realise he is the one going through this, not me so I shouldn't be sitting here crying). Talk to me for a while? Please? I do have people I could call but it is getting late and I don't want to cry down the phone at them.

OP posts:
Cocolapew · 28/01/2022 21:57

Do you have any district nurses or hospice nurses assigned to you? My Dad had both and they would come and give him morphine and Midazolam any time we phoned.
I'm so sorry Flowers

purpleme12 · 28/01/2022 21:57

We are here please talk away

MilduraS · 28/01/2022 21:58

I'm really sorry this is happening. Please don't feel like you're burdening anyone by reaching out for support. Imagine what you'd do for anyone in your position. Even if they were a stranger you'd rather they called then faced it all alone.

Cocolapew · 28/01/2022 21:58

The Marie Curie nurses came to the house from 11pm-7am so they were there over night in case he needed meds too.

dorkfink · 28/01/2022 21:58

I'm sorry OP

WorriedGiraffe · 28/01/2022 22:00

So sorry OP. Don’t be afraid to call for extra pain relief for him, Id say call as soon as you starting thinking about it, they will be lovely about it Flowers

Tinabn · 28/01/2022 22:01

Please ring the people who love you, they will want to support you as part of their love for you and your DH. My DB is in the same situation, I find it a privilege to be able to help. Sending you both love from a stranger who is aware of the strength you have shown.

firethornuk · 28/01/2022 22:07

I’m so sorry with what you’re going through. The hospice will have someone who can prescribe/administer stronger pain killers/ anti emetics, so it’s worth having their number on speed dial.

RubyKitty · 28/01/2022 22:09

You are allowed to cry, It is about you as well as your husband. And crying can help sometimes x
Do you have a family and friends WhatsApp group? You could message there and then whoever is awake will respond and you can have real life support. Please call the hospice and ask if there’s overnight help for you so you aren’t dealing with this on your own.

mondler · 28/01/2022 22:17

I'm so sorry OP. Sending you strength and hugs Flowers

nopuppiesallowed · 28/01/2022 22:19

I'm so sorry, OP. I know everyone reading your post wants to be with you to give you the hugs you need. You must be mentally and physically exhausted.
When my lovely father in law was dying, my husband slept upstairs (back issues - he needs a bed) and I slept on cushions on the floor in the sitting room near my fil's bed. It was exhausting. I was so glad of the Hospice nurses when they came to sit with him. They were wonderful. My husband and I didn't sleep much but at least we could rest. Please ask for help. You are taking care of your husband, but you need lots of TLC, too. God bless.

LiG123 · 28/01/2022 22:19

Hand hold, you're going through this together. Virtual hugs coming your way and always here for a chat.

AngelinaFibres · 28/01/2022 22:21

When my father was dying we had a direct line to the hospice at home team from the local hospice. They had a phone that was manned 24 hours so you could speak to a medical professional at anytime. Do you have anything like that. Dad had Parkinsons so we had access to Marie Curie nurses who stayed with him at night so mum could sleep. Do you have access to Macmillan nurses Op.

bloodywhitecat · 28/01/2022 22:22

@Mumdiva99

Mammalian nurses? What are they? Darn autocorrect.... Macmillan
That made me laugh more than you'll ever know.

Thank you all. I have put crap Midsomer Murders on and have just eaten a cornetto. I have just checked on him and he is sleeping, he seems peaceful for now.

He's a lovely man. We have only been together for five years, we met later in life (both in our mid 50s) we married last May in light of his diagnosis. No-one has a bad word to say about him, he has such a kind soul. He used to bound through the door on a Friday night and say "It's the freaking weekend baby!", then, once the babies (we are foster parents) were bathed and ready for bed he'd nip out and pick up a takeaway. Once he got back he'd pour me a drink, later on he'd run me a bath then , on Saturday morning he's make me a coffee in bed. He used to love to be active whether it be a morning shopping or mowing the grass or walking the dog, he was never one for sitting still. That's how I knew he was really poorly. One day we had gone out to walk the dog with the babies and we'd barely walked 500m when he wanted to go home. He started sleeping all the time and the weight dropped off him. He kept saying he must be dehydrated as his wee was so dark. Then he turned yellow (and our fight really started as it was at the height of lockdown and getting a GP appointment was almost impossible). They told him early on it was cancer, they just weren't sure if it was pancreatic or liver. Turns out it was bile duct cancer and in Nov 2020 he was told he had 6 months to live even with chemo, that seemed cruel seeing as he'd had half of his insides out to try to beat the disease.

He had a Whipple's then went onto chemo and all the while he held down his job and helped with the babies. Then, after a lovely day out in Nov he had a massive stroke. We knew at that point that the tumours were growing again but he was waiting to see if he was a suitable candidate for a trial, now we'll never know as they won't treat him due to the stroke.

I want to ask him not to leave me but I know he has no choice and I don't want him to try to hang on to protect me so I lay next to him at night saying "Please don't die" over and over in my head.

I have asked for some counselling from the hospice but there is a waiting list as I would prefer face to face (because I would have to focus on what was being said, I know if I have it over the phone I will have half an eye on the babies).

My daughter is coming to stay for the night tomorrow and hopefully his daughter will be here on Sunday for a night or two. Marie Curie have given us some night care which I had turned down but I accepted this week and it made so much difference. We have carers in every day and DH tends to wait for them for his personal needs rather than relying on me. He can't say "I love you" but his look and his actions tell me how much he does.

OP posts:
HollowTalk · 28/01/2022 22:22

It's such a sad and difficult time for you. 💐

Frogsonglue · 28/01/2022 22:24

My mum and I helped my dad to die at home in 2020. I just want to say that you absolutely are going through something huge and traumatic; you're allowed to feel broken. I understand though that you need to stay strong for your husband, and you will - I don't know how we do but we do. Humans are capable of amazing terrifying acts of love at these times. It's an extraordinary and beautiful thing to care for someone you love at the end of their life. Sending you all the love and strength for the days ahead. Please please ask for all the support you are able to access.

Frogsonglue · 28/01/2022 22:27

I just saw your longer update. He sounds so lovely. I'm so very sorry Flowers

SilverOtter · 28/01/2022 22:28

Your husband sounds like a very lovely man. Sending you prayers and love.

KurtWilde · 28/01/2022 22:29

Oh @bloodywhitecat your update was so touching. What a lovely, lovely man he sounds.

LiG123 · 28/01/2022 22:30

What amazing, giving, selfless people you are as foster parents 💐

Hopeandglory · 28/01/2022 22:32

I have followed some of your posts and your love for DH has always shone through, to read your last post was heart breaking but lovely to hear of the good times you shared. Meeting the love of our lives is not like the books, it may be when we are kids or it may be when we are older, the emotions stay the same. Peace be with you

DeathWinsAGolfish · 28/01/2022 22:32

I'm so sorry to hear this, wishing you both a peaceful night. Thanks

Flippydip · 28/01/2022 22:32

I don't know you op but I'm thinking of you. Sending you all the strength.

Can I also just say that if I had a friend or relative going through what you're going through, I'd be there on the other end of the phone no matter what the time is. Don't feel bad for calling a loved one if you need them. People like to help and feel useful in times like this.

Nomicron · 28/01/2022 22:33

Oh gosh that is so sad. So sorry for you and him.
If I was your friend I absolutely wouldn’t mind you calling at any hour of the day or night-maybe send a message first to say you’re having a rough time and is it ok to call?
Sending love to you both

sweepthenmop · 28/01/2022 22:36

Sending you much love OP. Sounds like you married a good one.

We're all here for you if you need us.

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