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Original poster

Anyone up who can help, phonecall from hospital

117 replies

Toorapid · 06/02/2021 03:43

DH has been in hospital for 4 weeks, cancer.

Lots of pain and can't get out bed but has been mostly cheerful, until the last few days when he's confused and incoherent.

Yesterday he called me twice but didn't speak and was sobbing. I called ward who said they'd check on him but didn't have time to get back to me and let me know what's going on. They said the sister would call me before the end of the day, but she didn't.

He's just called again. Didn't say anything, grunts and generally sounding distressed.

What do I do in the middle of the night?

OP posts:
Original poster
Toorapid · 06/02/2021 09:50

I've asked the sister in charge to get the ward doctor to call me, she says she'll try but he doesn't.

When I speak to her she says he seems fine and it must be the medication, which I'm sure isn't helping, but it's not new medication.

OP posts:
Hortuslover · 06/02/2021 09:51

If you feel you aren’t getting anywhere with the ward staff, call switch board and ask to speak to the matron on call, don’t hesitate.

Pythonesque · 06/02/2021 09:53

I'm another one advocating for you to get in to see him if you possible can. If not then definitely a video call. I remember when my dad was dying, my sister and I were able to call him and converse with him twice a day and then there was a day he was incoherent. Medication changes were part of it. I fear you may need to be on the ground to advocate for him at this point.

Fingers tightly crossed that things improve again quickly.

[my dad was in Australia and we were in the UK, it was coming up to half-term and my parents had earlier agreed that neither of us should travel out till after the holidays. Dad just held on till we made it there]

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Hortuslover · 06/02/2021 09:53

I think you’ve given the ward staff enough chances now, time to go over them! It infuriates me that this goes on! You know your dh better than anyone, you need to be listened to!

olympicsrock · 06/02/2021 09:55

I’m a hospital doctor. This is pretty unacceptable communication. Someone could help him call you ( perhaps a video call) when he is more with it and awake. It is so important that we keep families in the loop at this time. Sending love xx

Doublefaced · 06/02/2021 09:58

Set a timescale for today. If they haven’t rung you by 12, phone again.
There should be a palliative doctor or nurse specialist on call over the weekend.
Ask if he’s been discussed with them and if the referral has been made to the hospice yet.
Flowers

TokyoSushi · 06/02/2021 10:00

Sending love OP, it certainly seems like there has been some sort of deterioration. Hope you get somewhere with the communication. Flowers

Dowser · 06/02/2021 10:01

How awful.
Can you insist that you see him.

Spudlet · 06/02/2021 10:02

Your DH is dying, calling you sobbing, and the ward staff are making you feel like you’re irritating them. This is infuriating. I can imagine it well too, I’ve worked with nurses like that. Why on earth do these people enter caring professions in the first place?

Honestly, if you feel up to it, I’d follow the advice of posters on here and escalate things. I’m so sorry these people are making a hard situation even harder for you. Flowers

Dowser · 06/02/2021 10:04

I just don’t understand this at all.
My son is a trainee theatre nurse.
If he can go and watch an operation in full ppe, why can’t a relative visit a very ill loved one in full ppe?

Original poster
Toorapid · 06/02/2021 10:05

Ok, I've just spoken to the ward sister, she's still adamant that he's not confused just sleepy. She thinks he's fine to have the telephone appointment with the oncologist on Monday, I should call tomorrow to check again. He's not poorly enough to have visitors, but she'll ask the doctor.

I've asked if she can help him call me when he's awake, so we shall see.

He's on IV antibiotics. If the infection is the cause of the change, how soon should it improve?

OP posts:
Flapjak · 06/02/2021 10:06

Can your husband normally do a facetime call? Can the ward staff assist him to do that, it would take a minute if he has whatsap or skype on his phone. I work on wards and help people do calls on their own phones, if they are struggling . Easy enough for a nursing assistant to download whataap for someone if they dont have it. Have also used hospital phone to do same.

DaisyChain16 · 06/02/2021 10:07

Hi OP - I've not read all the messages but I would ask them to check the dosage of pain relief. A family member became so incoherent like you describe inexplicably - it was because they'd doubled up on his slow release morphine patches so he was effectively comatose...he was also very distressed. As soon as they realised the last error he was back to the level before.

StrongTea · 06/02/2021 10:07

You must be worried sick, hope that you are able to speak to your husband later today.

Original poster
Toorapid · 06/02/2021 10:08

He's a real technophobe at the best of times and we've never done face calls. Complicated by the fact that he's still using a work phone which doesn't allow apps, so no messenger or WhatsApp, but he does have messenger on a tablet. Not sure if that can be used for calls?

OP posts:
Original poster
Toorapid · 06/02/2021 10:09

@DaisyChain16

Hi OP - I've not read all the messages but I would ask them to check the dosage of pain relief. A family member became so incoherent like you describe inexplicably - it was because they'd doubled up on his slow release morphine patches so he was effectively comatose...he was also very distressed. As soon as they realised the last error he was back to the level before.
This could well be the case, but he's still in agonising pain and we don't want that either.
OP posts:
Original poster
Toorapid · 06/02/2021 10:10

Today when I called, they went through ID checks, which they've never done before, so I thought they were gearing up to tell me something significant, but no.

OP posts:
Doublefaced · 06/02/2021 10:13

Infection can often cause increased pain and distress ( sometimes before it is diagnosed)
Therefore pain medications are increased.
If the infection is being successfully treated by antibiotics, pain levels can also be reduced.
Meaning that the dosages of pain medications need to be reviewed and amended.
Have they checked his blood calcium levels? High calcium levels are sometimes an issue with bone secondaries and can cause drowsiness and confusion.

Hortuslover · 06/02/2021 10:16

Give the Macmillan team a call and express your concerns and ask them to ring you when they have seen him?

Original poster
Toorapid · 06/02/2021 10:18

I don't know what I'm expecting of the hospital really. I mean, he's obviously not himself, but if I take it that they're the experts and it's just drowsiness and the infection, which is being treated, whilst it's awful that I can't speak to him, what else can they do?

OP posts:
Buttercupcup · 06/02/2021 10:19

OP I have read your other posts, I am a CNS. You can ask for a telephone appointment with his named doctor from the ward but it actually sometimes more useful to ring ‘office hours’ and speak to the ward junior doctors as they will be doing the hands on day to day assessing and prescribing. You are not a pain you are a concerned relative in a difficult situation made worse by covid and that should be respected. You could also ring the oncologists secretary and ask for a separate consultation for an update as long as your husband has the capacity to consent to them sharing information with you. I would also ask if they have scanned his head it would be warranted in this situation when there has been a change in cognition.

Onekidnoclue · 06/02/2021 10:27

No advice to offer but just wanted to send love and a handhold. Try to take care of yourself. Flowers

rhowton · 06/02/2021 10:44

Call and keep calling!! And email PALS! There job is to care for people, your DH is not being cared for to the best standard available.

thinkingaboutLangCleg · 06/02/2021 10:49

Good luck to you and DH Flowers

Original poster
Toorapid · 06/02/2021 10:52

@rhowton

Call and keep calling!! And email PALS! There job is to care for people, your DH is not being cared for to the best standard available.
What should I be expecting them to do differently? I feel lost without him and without more information, but if there isn't new information?

He's seriously ill, it's awful, but that's not going to change no matter how much fuss I make. All I really want is for him to be comfortable and if that means sleeping all day, it's better than hearing him sobbing.

OP posts:
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