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Original poster

Who can I talk to?

32 replies

bloodywhitecat · 21/11/2021 13:58

DH has terminal cancer. Last night he had a massive stroke, we sat for over an hour waiting for an ambulance. The hospital he is in is strictly no visiting, he can't call or text me as he has lost his speech and he has an unsafe swallow, he is confused and agitated. I think I might need support to get through today. Who can I call? Macmillan were useless at the start of our journey. I have called for updates but feel guilty at phoning as I know they are busy and they can't always get to the phone. I just need to talk to someone.

OP posts:
MeetMeAtOurSpot · 21/11/2021 14:10

So sorry. It must be so hard when you can’t even visit.

There are some support groups, local and online, maybe there will be someone online now who can offer & advice support? Flowers
www.stroke.org.uk/finding-support/stroke-support-groups

Happylittlethoughts · 21/11/2021 14:13

Bloodywhitecat, I'm not sure if you want medical/illness support. I guess the only people could really talk this through are involved medical staff.
Have you thought about a hospital chaplain. They are usually happy to have a chat with people of any faith, or no faith at all. They are expert listeners and comforted many in their journey.

Happylittlethoughts · 21/11/2021 14:17

Ooops posted too soon.
You must feel so isolated and worried. I'm sending you much love x

Interested in this thread?

Then you might like threads about this subject:

General health
CorrBlimeyGG · 21/11/2021 14:29

I remember your post about husband's dvt. I'm so sorry he has deteriorated, and for the trauma of having to wait so long for an ambulance.

If you're in England, hospitals are supposed to facilitate visiting for critically ill and end of life patients. There is no definition for end of life, it doesn't have to mean imminently (I hope it is not). Honestly, I'd be making a pain in the arse of myself to get a visit. It's against all our instincts to do so, but you are the best person to advocate for your husband.

I don't know who to suggest to contact, Macmillan were useless with us too. They eventually decided to visit us, but my Dad died that morning. They didn't turn up (district nurses would have updated them), no call to ask if we still wanted a visit or contact about bereavement support. Really disappointed me.

CorrBlimeyGG · 21/11/2021 14:30

I don't pray but will be thinking of you today.

makelovenotpetrol · 21/11/2021 14:48

I'm so sorry OP , as PP has said the hospital chaplain may be a good person to speak to - they often work on call and so can be available when needed. Whilst they themselves are of faith, they offer support to anyone, regardless of their faith or beliefs.

You can ask the nurses on the ward for how to contact them. X

LandCleve · 21/11/2021 15:15

I’m so sorry to hear about your Dh. And it must be terrible for you not being able to be there or to get information. I’ve been there Flowers.

Would ringing the Samaritans help? Their number is 116 123.

Original poster
bloodywhitecat · 21/11/2021 17:23

Thank you for these numbers, your kindness has made me cry (but in a good way), thank you for the kindness of strangers Flowers. I have spent the afternoon trying to sort out foster care for our dog and trying to entertain our fosterlings (who are magnificent at keeping me busy and focused)

OP posts:
Babyroobs · 21/11/2021 17:27

Is the palliative care team at the hospital involved ? If not already, they may be contactable tomorrow. They will hopefully visit him on the ward, make sure he is comfortable and be a contact point for you. If there is nothing more the hospital can do, then I would push for transfer to a hospice if there is one near you.

user1471550643 · 21/11/2021 17:38

I’m so sorry to hear what you and your dp are going through. If you want to speak to someone regarding the stroke, I too recommend the stroke organisation. They were very supportive when my mum had 2 severe strokes. I also found their forum supportive to share experiences. They have a helpline number below
If you require support today, please contact our dedicated Stroke Helpline on 0303 3033 100 or email us.

Our thoughts are with you

SilverSandStorm · 21/11/2021 17:58

I'm so sorry, I remember your previous posts from when your DH was diagnosed. Is there definitely no way they will allow you to visit? Such a worry for you Thanks

GlitterBiscuits · 21/11/2021 18:10

I've followed your other threads too.
There is usually someone on Mumsnet and we like to chat.

I'd also push for a hospice place.ThanksThanks

CormoranStrike · 21/11/2021 18:39

I’m sorry to read this - I’ve followed your posts from his diagnosis.

I think you have both been marvellous in your resilience. I hope you get some support this weekend and in the coming weeks.

Original poster
bloodywhitecat · 21/11/2021 18:48

I have just managed to burn tinned soup mean who does that? The hospital are scanning him again tonight to check for bleeding but there has been no real change. He answers all questions with a kind of yes and a nod but he can follow simple commands. The rescue that Alf the hellhound came from have found him a foster home but I feel so sad at letting him go into care again. I slept for 3 hours last night with the help of some zopiclone, I am hoping I sleep better tonight. I have doughnuts by my side that my lovely daughter left me today but I cannot even think of eating one.

OP posts:
PastMyBestBeforeDate · 21/11/2021 18:51

Oh bloodywhitecat I'm sorry this is how it's progressing. I hope you've found someone helpful to talk things through with Flowers

RandomMess · 21/11/2021 19:03

Sending you big hugs. I would be asking the stroke ward/team that with this massive stroke and terminal cancer cannot he not be considered end of life?

The stroke ward I was on (Covid clear at the time) were very considerate at letting families in for those where the expected prognosis wasn't could/distressed patients that couldn't communicate that were agitated etc.

Thanks
Crunchymum · 21/11/2021 19:26

Oh gosh bloodywhitecat my heart dropped when I read your post.

Nothing practical to add. Keep strong, keep brave x

Original poster
bloodywhitecat · 21/11/2021 19:30

@RandomMess

Sending you big hugs. I would be asking the stroke ward/team that with this massive stroke and terminal cancer cannot he not be considered end of life?

The stroke ward I was on (Covid clear at the time) were very considerate at letting families in for those where the expected prognosis wasn't could/distressed patients that couldn't communicate that were agitated etc.

Thanks

I have asked and been told no, I am going to call PALS in the morning. Everything has been a battle so far but this battle just feels so huge which is daft because I suppose it's not really.
OP posts:
bookish83 · 21/11/2021 19:35

You should be allowed in, I'm really upset and angry about this. You would be allowed in on our ward.

I'm so sorry to hear of this and how much you must be going through. You need to get in touch with PALS and also ask to speak directly with the ward matron regarding visiting.

Decisions regarding feeding need to take place, you and your husband need palliative care support and you should not be kept away. We are not in lockdowns anymore and this is inhumane x

SilverSandStorm · 21/11/2021 20:23

@bookish83

You should be allowed in, I'm really upset and angry about this. You would be allowed in on our ward.

I'm so sorry to hear of this and how much you must be going through. You need to get in touch with PALS and also ask to speak directly with the ward matron regarding visiting.

Decisions regarding feeding need to take place, you and your husband need palliative care support and you should not be kept away. We are not in lockdowns anymore and this is inhumane x

Completely agree with this. There is a time and place to enforce the no visiting rule, it's not fair and not humane in this scenario.

I hope you get some rest tonight

RandomMess · 21/11/2021 20:42
Thanks

I hope your get somewhere with PALS

My Mum wasn't allowed visitors until unconscious and in her last few hours after being an inpatient for an infection in the last few weeks of terminal cancer. Absolutely inhumane, we were estranged but it breaks my heart for every family that has been through this and still going through this.

7 years fighting cancer and not getting to say goodbye to her husband of over 55 years 🥲

HollowTalk · 21/11/2021 20:59

This is absolutely heartbreaking. I am so sorry.

Do you have another foster carer who can take care of your foster children if you have to make an emergency dash to hospital? I hope it doesn't come to that but obviously you have to be prepared.

Newhorizon21 · 21/11/2021 21:18

@makelovenotpetrol

I'm so sorry OP , as PP has said the hospital chaplain may be a good person to speak to - they often work on call and so can be available when needed. Whilst they themselves are of faith, they offer support to anyone, regardless of their faith or beliefs.

You can ask the nurses on the ward for how to contact them. X

The hospital chaplaincy details can usually be found on the hospital website
Original poster
bloodywhitecat · 21/11/2021 21:36

@HollowTalk

This is absolutely heartbreaking. I am so sorry.

Do you have another foster carer who can take care of your foster children if you have to make an emergency dash to hospital? I hope it doesn't come to that but obviously you have to be prepared.

Yes, I have a good friend who can step in, another foster carer in the next village and my DD is my back up carer, she is at work but her school know the situation and she is keeping a packed bag in her car, just in case. My SDD is coming over tomorrow so she can be with the babies too if needs be. My lovely neighbour can step in if it happens overnight until one of my back up can be here.
OP posts:
Original poster
bloodywhitecat · 21/11/2021 21:38

@RandomMess

Thanks

I hope your get somewhere with PALS

My Mum wasn't allowed visitors until unconscious and in her last few hours after being an inpatient for an infection in the last few weeks of terminal cancer. Absolutely inhumane, we were estranged but it breaks my heart for every family that has been through this and still going through this.

7 years fighting cancer and not getting to say goodbye to her husband of over 55 years 🥲

That is awful, I am so sorry and also so sorry that we are no further forward.

It is our six month wedding anniversary tomorrow, I was hoping we could get to a year but at least we got to six months and what wonderful months they have been.

OP posts:
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