Looking for advice / support / help - I don't know

HI

I’m new to this forum, and I’ve no idea if this is allowed or not, so please bear with me.

I know I sound totally selfish, and I hate myself for it.

My husband is dying, and I feel like my life is falling apart. He has cancer and is terminally ill. He’s 40. We’ve been together for almost 19 years. We have one daughter, who is 16. She has complex learning difficulties and is on the Autistic spectrum. She seems to be coping much better than I am at the moment, but I know that’s just a delayed reaction, and I’m trying to prepare myself for when it hits her.

I don’t really know what I’m asking for, I just feel like everything is wrong. I’m so angry - like everything revolves around Covid, and nobody gives a stuff about anything else.

Hi Joanne
Unfortunatley everything is delayed because of covid.
This does not help you as it causes frustration and anger at a time when all you want is answers and help. Moving forward is yourhusband at home or in hospital
If home you should look at speaking to the pallative care people for your area they can set the wheels in motion for keeping him comfortable and they are there for you to. You can also call marie curie they are there for help

Hi so sorry your going through this you yourself will need support with palliative care. I’m a learning disability nurse I think you right your daughter probably isn’t processing exactly what’s going on at the moment and can’t express her feelings. Please tell me if I’m wrong any changes with your daughter will be very upsetting. I can only advise you as hard as it is for you as well.
Give her clear descriptions explain if you can exactly what is happening also embrace the good times . Explain why you are sad. Maybe some counselling cognitive therapy for her. Please private message me if you want more advice
Take care of yourself and I hope you are getting the support you need
Your right Covid has taken over every thing

HI.

Thank you for your reply.

He’s in hospital at the moment, so we can’t see him. We’re on Messenger with him all day, back and forth.

I just feel like I’m getting really angry and resentful of everything and everyone.

.Thank you x

Thank you.

Yes, she processes things differently. She’s fully aware of what’s going on. We lost my husband’s dad to cancer two years ago. That was her first experience of losing someone - but this is on a whole new level.

She’s drawing him pictures, and writing in her journal. She’s incredibly empathetic, and I think she’s being strong for the both of us - which I’ve told her she doesn’t need to be.

I know she’ll react when the time comes. I think being able to see him on Messenger / face time is helping at the moment. The fact that he doesn’t look ill, is helping her, I think

So awful this situation my husband died in March 2 days before 1st lockdown he was in hospital on palliative care i brought him home also had cancer we were told 5 days before he died so could not get the treatment quick enough again Covid prevented treatment. Glad your daughter is putting things down. Take care xx

I’m sorry for your loss.

Thank you x

It’s still a shock. I only called 111 on Wednesday night, because he was experiencing pain in his leg. They transferred us to 999, but 999 rang back 4 hours later and told us to go to bed, as there were no ambulances available.

The pain was worse on Thursday night, so I rang 111 again at 7.00pm. The ambulance picked him up and took him in at 11.00p.m

Then, while he was still in A&E on Friday night, we were told what’s going on, and that it’s untreatable.

Know the feelings total shock disbelief a disgrace no ambulance your going through a lot. How’s your husband doing at this moment x

Hi yeah I get the anger and resentment you feel like your banging your head against the wall with them. Waiting for things to be done and move in a direction of some description. All i can say is is that if your husband is end of life care and does not have covid you should be able to go in.
The hospitals do not rush themselves so you might need to be a bit bolshy. If the nicely nicely approach has not worked.
Depending on what cancer he has someone from that speciality should have spoken to him. You can also request a call from the ward doctor

Agree the hospital my husband was in allowed 2 at a time Covid was just becoming more known but they had Covid ward next to where my husband was. Another reason for getting him home I know people are in different situations and not possible to care at home it’s so heartbreaking. X

Hi yep each family will manage best they can its a hard place to be in and cope with. It feels like your having to fight for everything care wise two steps forward 1 back at times. We had my husband home but we are fortunate there was enough here to help him and each other its not easy as you know but would do it again.

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