Anyone up who can help, phonecall from hospital

[Toorapid]

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?

You can video call or voice call on fb Messenger. I wonder if he might be more "with it" on a video call. He may well be a bit disorientated and delirious on the pain killers or due to infection. Relies on hospital wifi or phone data working though, neither of which we found reliable.

Hi OP - this must be really worrying. It's hard when you can't be there to see for yourself what's going in.

My mum gets like this sometimes. WIth her it's a combination of things - she was quite malnurished and using a lot of oramorph, and we found that just after she'd wake up she would send garbled texts and not really be making any sense when you talked to her. However, once she had been awake for a while she would be back to normal and able to hold a conversation.

The other thing that used to cause it was infection - she would get delirious. She might be able to respond fairly well to direct yes/no questions and manage short focussed sentences, which is why her carers never picked up on it, but if she tried to tell you what had happened during the day it would be nonsensical and totally random. Delirium also fluctuates during the day so some times they make more sense than others, and can cause quite severe mood swings.

Delirium can be missed even by healthcare professionals, so I would ask if thats a possibility they've considered.

Since covid, many wards (surely all?) have been given tablets specifically for facetime calls for the patients, and staff should help facilitate this if visitors are not permitted.
Infections can send people a bit doolally sometimes. Hopefully when it starts to clear he will be his usual lucid self.
I've frequently seen and heard of patients phone home, repeatedly, seemingly in great distress, and crying, saying they are about to die etc, and they are actually ok, just very confused and incoherent due to infection and/or dementia. Very distressing for those receiving the calls, you have my sympathy.

This is an awful time for everyone, hospitals, patients and their families. Do you feel well informed of his care and wellbeing? If not I'd contact PALs, as really his doctor should try and set aside some time to speak with you about him.

It's hard because they'd usually do it in person, but like anything else in these hard times they need to adapt. My SIL has had a similar situation, and it's been awful for her.

Can you arrange to facetime him on his tablet or messenger call so you can at least see him?

It must be so distressing for you and your dp. I get absolutely that you are worried about interrupting already busy staff. I was in hospital last week with ds2. We were in a side room and essentially forgotten. I felt uncomfortable about disturbing them but tbh it's their job, they are there to care for patients and their rels (and I say that as a hcp !)
Re PALS I'm not sure thay are open at the weekend. You could ring his consultant's secretary and arrange a phone consultation that way but again suspect they won't be in til monday. I think repeated distressed incoherent calls are a good reason to be asking questions.
In my experience we have allowed rels onto the ward if they are prepared to gown up and self isolate afterwards (I know it's illogical when regular ward staff don't have to do that).
If it's an infection IV antibx work pretty quick, 24-48 hours.
Could be delerium due to acute illness, sleep deprivation. Equally could be dehydrated, low in oxygen, urea and electrolyes deranged. Opiates added to those things can make things worse. Maybe something to ask if he has gradually deteriorated. Good luck, it's such a crap situation

@Toorapid

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?

He must have the call. The oncologist needs to assess him.

Hope you get to see DH even over videocall.

It must be such an awful time for you both

@SlothMama

This is an awful time for everyone, hospitals, patients and their families. Do you feel well informed of his care and wellbeing? If not I'd contact PALs, as really his doctor should try and set aside some time to speak with you about him.

It's hard because they'd usually do it in person, but like anything else in these hard times they need to adapt. My SIL has had a similar situation, and it's been awful for her.

I did speak to the palliative care doctor for almost an hour on Thursday, but what he tells me is slightly different to what the wad are telling me and, as he explained it, the ward would manage any discharge.

Then there's the oncologist who's at another hospital and who I haven't been able to contact at all. Neither he, his secretary or the oncology nurses have returned messages I left first thing Thursday.

It's crap at the weekend due to reduced staffing I think you really need to speak to the medical team on call for the ward and find out what's going on. They may well not know your dp well as they'll be an on call team rather than his regular docs but they'll be able to review him, look at recent bloods, recently added meds etc. Hopefully that will put your mind at rest

My father was the same due to painkillers. He would call at all hours when the oramorph started to wear off but still very confused. He didn’t know where he was and kept crying or complaining about a ‘loud concert’. Very sorry to hear this Op and it is extremely distressing, especially when you start to compare against communications you had just a few days before. I hope the ward are able to communicate more effectively in future to minnows the distress this is causing you.

Could you get a video call ring PALS explain & ask?

Pretty sure that PALS aren't open on the weekend. Its beyond belief that hospitals have rubbish weekend service. (I have spent 7 months last year as a daily visitor, the lack of care on a weekend is really disturbing!) Hopefully OPs DH is in a more specialised ward, definitely ring and ask to FaceTime with the wards laptop, I would be very surprised if they didn't have one as they have been relied upon during Covid.

I am so sorry you are going through this OP, I can’t imagine how frustrating and infuriating it is not to be able to intervene on his behalf and not to be able to be there for him is heartbreaking. When a family member was in a similar position of receiving palliative care he became very confused , and was often very agitated and distressed, with vivid and frightening hallucinations, this was because the cancer affecting his bones was releasing overwhelming amounts of calcium into his system.

It is such a cruel disease, you feel that inflicting mental anguish on top of the physical pain is almost spiteful.

My thoughts are with you.

Assessing confusion can be difficult. My own mother was confused (actually, she was developing hypercapnia where she couldn’t expel CO2 and was effectively experiencing severe lack of O2 to her brain). I told them she was confused. “No no, she isn’t”. Days later, she was talking about filming, scenery sets, Helen Mirren, Who Wants to be a Millionaire set problems. The ward phoned me “You’re mum’s confused. Not making any sense at all”. She was actually much better... she HAD worked in the TV and film industry, for many years.

My point is... YOU @Toorapid KNOW your husband best.

Eleanor, my gran told everyone in the family my aunt was competing in the Olympics, which was on TV at the time, then when she told them I was expecting DS1, no one believed her.

Maybe it's because I wasn't as close to her or maybe because I wasn't responsible for her in the same way, but that confusion, well into her 80s was nowhere near as hard to take as this.

I do really feel for you, OP.

Please let us know how things further develop.

It is your husband. Someone so very very close, whom you love and you want to ease his pain, physical and mental. You know he is fearful and reaching out to you, as best he can and with this dreadful situation now, you cannot be there, to see him in person and comfort him. It’s terribly, dreadfully hard.

The nursing staff need to do this for you. If they cannot or will not, then I would ask to speak to hospital admin, patient services immediately. The very fact that your husband is trying so hard to get to you is evidence that all is not well.

I tried hard to do the best for my mum but failed her, in the end. She trusted me implicitly as the “medical” person who could always be counted on to sort things out. Do what you can today and tomorrow and if there isn’t vast improvement in terms of communication (you need to SEE your husband by whatever means) then I’d go in hard but firm, to Hospital Admin/PALS etc, first thing Monday morning.

Knickers to them being busy. That is their job and this is your loved one. I say it so much. When this is all over they won't remember your name so stop caring about them and start doing what you want to do. I'm so sorry.

@callmeadoctor... that’s how wards used to be.

Things have changed massively in the NHS. Long before COVID19 came.

Can he get out of bed at all OP? I was in a very similar position to you in September. DP (also terminal cancer) taken into hospital because of a mystery infection and general weakness. No visitors allowed. He’d been there about two weeks when he suddenly just stopped replying to all texts and phone calls. Every time I rang the ward they just said he was okay just sleepy. In the end, I just turned up under the guise of needing to drop fresh pyjamas/towels off. DP could still get out of bed and walk a bit so once I was there I just said ‘can you get him to step out of his bay so I can just see his face’. We were still about 10m away from each other, I obviously couldn’t step past the desk and it was only for about two minutes but just seeming him in the flesh and waving at him and getting a wave back gave me the tiniest bit of comfort.

I appreciate this may not be the case for you if your DH can’t get out of bed. I also feel your pain with the oncology call, similar happened with my DH in September and I knew full well he wouldn’t be able to coherently discuss his health with anybody and therefore wouldn’t be able to report anything back to me (his bloody carer so I need to know these things) because he wouldn’t have a clue what the oncologist had been saying. All fell on deaf ears I’m afraid. I was essentially completely out of the loop the whole time he was in hospital. I’m here holding your hand if you need a chat at all, you’re being so brave

Goodness sake sorry OP i’m an idiot, just realised you literally said in your opinion paragraph that he’s bed bound. Sorry for missing that

Re. the tablet and video chat - yes you can if it's via Messenger.
I talk on Messenger using my laptop, and could do it via tablet if I wanted to.

I hope you do get to see him that way when he's awake.

This is absolutely heartbreaking to read. I am so sorry you and your husband are going through this. Bollocks to them, pester them if you don't feel right. You should have gotten that call back, even if the person calling back took two minutes out of their day after their shift had ended.

If it's a works mobile, does it have TEAMs installed? That's a good way to video call ... please don't feel you're being a nuisance, you're genuinely not x