Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Flip

1 2 3 4 5

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:

1frenchfoodie · 06/02/2021 05:53

I am glad you were able to speak to them and be reassured. The deterioration you mention in his texts and phone calls is worrying and, for the texts, very concrete in terms of presenting the care team or his consultant with evidence. Will you be part of the call on Monday? perhaps you could email the consultant’s secretary with your concerns and examples of pre/post Tuesday texts. If the hospital notes are presenting him as (broadly) stable this will be an important additional bit of the jigsaw for the consultant. Hugs.

Have yorraised with his doctor and it does seem you

Roystonv · 06/02/2021 05:54

Wishing you both well, what a difficult time for you to have a loved one so ill and how worrying this change in his behaviour must be. I think as said above you need to become that squeaky wheel and politely but firmly express your concern, you know him best and any useful feedback you have on how he seems to you should be taken into account. Seconding some 'facetime' too.

CiderJolly · 06/02/2021 05:58

Certain infections can make you incoherent- I would ask them to test for UTI etc

I’m really sorry you’re in this situation and I’m glad you felt able to call the ward- will they allow you to visit with PPE? They can make exceptions, it’s at their discretion- maybe you could get tested to ensure you’re negative before visiting.

Interested in this thread?

Then you might like threads about this subject:

General health

theviewfromhalfwaydown · 06/02/2021 06:01

Just another thought could someone have taken his phone? I know that’s probably ridiculous but it’s another angle.

I hope you get some answers and try not to worry. I know that’s easier said than done.

oatmilk4breakfast · 06/02/2021 07:38

Didn’t want to read and run. Thinking of you.

Coldhandscoldheart · 06/02/2021 07:59

The more I think about this, the more I would be pushing for his pain relief to be reviewed by palliative care team or the pain team.

I would consider bulletpointing for your next phone call as well, ask the nurse you speak to to make a note & pass in to the team looking after him.

Original poster

Toorapid · 06/02/2021 08:03

Palliative care (McMillian) are managing his pain. Is there someone else who should be doing it?

OP posts:

IloveZoflora · 06/02/2021 08:03

It might just be the medication. My brother was in hospital early last year (before COVID) on oramorph - it sent him loopy I had to go to the hospital in the middle of the night because he was convinced an old lady with dementia who was at the nurses station was a spy and out to assonate him! He had left the ward and was walking home. He also thought birds were nesting in his bed bay curtains. To the Drs and nurses he seemed fine was convinced he couldn't tell them what he was seeing or they would put him in the mental health ward when I tried he kept telling to shhh, he would phone at crazy times saying random things like he was in a giant kaleidoscope at one time. He could text either it just came out as gobbledygook. So whilst it's worrying I would put it down to the medication is there way you can video call him just do you can see your husband that might make you feel a bit easier if you could see him.
Sorry you are going through this

SunshineCake · 06/02/2021 08:16

I am so sorry to read this. I had similar when my Nana has cancer. We were talking quite happily and then the next time I couldn't understand anything she was saying. Please try and get in to see him .

IthinkIsawahairbrushbackthere · 06/02/2021 08:59

This happened with my dad - full of chat, completely with it then one day we walked in and he was completely different.

I don't know what sort of ward your husband is on but when my dad was on the palliative care ward (8 years ago so pre Covid) we were told to ring any time, day or night. The sister said that if I couldn't sleep I could call and they would look in on dad and tell me how he was.

callmeadoctor · 06/02/2021 09:01

Also re check the visiting policy, certainly visiting someone with "end of life" care is allowed at the moment if its not a covid ward. Depends on their thoughts of his diagnosis I suppose.

callmeadoctor · 06/02/2021 09:03

Examples of essential visits include but are not limited to:

A birth partner supporting a woman during hospital visits
For a person receiving end-of-life care – we expect this to be defined as flexibly and compassionately as possible, to support patients at the end of life spending meaningful time with their loved ones in their final days and weeks
To support someone with a mental health issue such as dementia, a learning disability or autism where not being present would cause the patient to be distressed
To accompany a child in hospital
The above examples can include any other situations where clinical staff assess that it is essential to involve family or carers for ethical or patient safety reasons.

All arrangements MUST be made through the nurse in charge of the ward before visiting.

GreySkyClouds · 06/02/2021 09:12

@Toorapid

Ok, I've spoken to them.

They say he is coherent and had called the nurse in pain, they've given more pain relief and he's asleep now.

In the last three days I've spoken to two nurses (including this one) and a doctor who have all insisted he's perfectly sensible but drowsy because of the pain relief, but I haven't been able to have a conversation with him since Tues.

Looking back through my texts, he was sending lovely messages, full paragraphs, including punctuation until Tues. Then he stopped, but could still send short replies to mine and now this.

But at least if he's sleeping he's comfortable now. Thank you.

Looking back, I wish I’d paid more attention to the decline in messages I received from a family member. Can you visit him today as he has deteriorated rapidly? Or FaceTime?

This is shit, for both of you, and I’m sorry that you’re going through this during a pandemic.

The phone call with the oncologist needs to go ahead. (S)he will be able to tell a lot from how lucid he is or isn’t. It if it’s as bad as you say, prepare yourself for bad news.

Piscesperson · 06/02/2021 09:14

Another medical person here- I imagine they will let you visit him, different hospitals have different policies in place but ring and say you would like to visit, even if just for an hour. All the best of luck

B1rthis · 06/02/2021 09:24

You will need to push to visit him these weekend.
He is coherent enough to dial your number but not to verbalize or text.
He needs someone to advocate for him that knows his baseline - you.

HosannainExcelSheets · 06/02/2021 09:35

Have you contacted the PALS organic at your hospital? They are usually super effective at liaison with medical staff and helping you get the information you need.

You are completely right to advocate for your DH and it's always ok to want to take to medical staff, day or night, in this situation. Especially with the visitors restrictions.

Original poster

Toorapid · 06/02/2021 09:38

He's been there 4 weeks and was happily bantering with the nurses and the other patients until early this week, they should have noticed too! On Monday, a colleague of mine, who is notoriously difficult, was admitted to the same hospital and he was full of what he'd do if she upset "his ladies".

I'll keep trying but they're still saying no visitors unless end of life and he's nowhere near that yet, although to me, it feels a lot closer now than it did.

He does have a mystery infection, but they've ruled out UTI.

OP posts:

Hortuslover · 06/02/2021 09:39

Sorry you’re going through this op.

He’s been on oromorph since admission, but is he on any slow release morphine that’s been started recently? Ideally he should be on slow release morphine 12 hourly and using oromorph for breakthrough pain!

Does the hospital have an acute oncology service that could go and see him? Macmillan team are the ones that will be managing his pain so perhaps you could speak to them to see if anything has changed with his meds to explain the change. And also perhaps express your concerns about his consultation on Monday, to the Macmillan team and they may be able to advocate for you about being there.

Much love to you (medical/oncology nurse here).

Original poster

Toorapid · 06/02/2021 09:39

I was going to try PALS next. I don't want to upset anyone, I do want to keep the ward on side and whilst they're being polite, they have made it clear they're very busy on a number of occasions....I get the distinct impression I'm considered a bit of a pain.

OP posts:

Original poster

Toorapid · 06/02/2021 09:41

Yes he's been having the slow release morphine since admission too and I guess the dose has been increasing, but this is a sudden change.

OP posts:

Hortuslover · 06/02/2021 09:42

Is he still able to attend to his activities of daily living? Washing himself etc? Has he required more help from staff since Tuesday? If so maybe a CT head in needed. Is he coherent in the day time at any point?

If you have any questions please feel free to ask.

EleanorRigbyWasReal · 06/02/2021 09:46

I can hardly believe what you’re saying. That’s disgraceful.

I used to work in oncology (nurse) and it takes moments...moments to call a concerned relative back. I’m so sorry to hear this, your poor lovely husband and poor you.

Today, be respectful but VERY firm. This “care” is not sufficient. It doesn’t matter how busy they are. THEY are the patient’s advocate and they are failing.

Original poster

Toorapid · 06/02/2021 09:47

@Hortuslover

If you have any questions please feel free to ask.

He hasn't been able to wash himself anyway. The doctor insists he is coherent when he's talking to him, but he hasn't been with me. For the last 24 hours he hasn't spoken to me at all, although he has called 3 times, only silence or sobbing.

On Thursday we had 2 calls but gave up because he knew he was muddled and it was upsetting him.

On Wednesday he was putting random nonsense sentences into otherwise normal conversations.

On Tuesday, I had a couple of perfectly normal conversations and some very long texts.

OP posts:

Hortuslover · 06/02/2021 09:48

@Toorapid I’m sorry you feel like you are being a pain because you shouldn’t be and you aren’t being. It must be very difficult not being able to be with him. Have you spoken to any senior staff on the ward? They should be having ward round this morning, it might be an idea asking to speak directly to the doctor!

Hortuslover · 06/02/2021 09:49

I second @EleanorRigbyWasReal

Flip

1 2 3 4 5