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Original poster

The hospital just called...

185 replies

greenwayer · 25/03/2022 03:06

My mom is 69 and has been in hospital for 10 weeks, she went in with slurred speech and a slight infection and confusion. In that time they have not found what is causing her symptoms, she's had every test going several times. About 2 weeks into her stay hospital called me at 1.30am to say she had deteriorated and they were considering DNR. Luckily she pulled through but hasn't really got much better. She now regular has times where she's more conscious or less conscious. 10 weeks in bed has took its toll. The hospital decided to send her to rehab at another hospital, I was surprised because of her condition but have to trust their judgment. Apparently she went there yesterday afternoon.

The hospital just called to tell me she's back in hospital and completely unresponsive with a GCS of 3. They wanted to let me know where she was. Now I'm wide awake and don't know what to think. I don't have anyone in the real world to speak to at this hour. So I'm talking to you guys.

It's been a nightmare situation because they haven't allowed visitors because of Covid, I live 200miles away and when I call it's difficult to get information, I'm lucky if they actually answer the phone and it took 9 weeks to even track down her neurologist. She told me a couple of days ago that she was fit for discharge. Fit for rehab. They could find no cause for her symptoms. She has 'sleepy' times and 'chatty' times. That is all I know.

I don't know if she is actually worse now or just in a 'sleepy' time and the staff aren't used to her or if this is further deterioration and I should be seriously worried. The lack of information is crazy.

OP posts:
Justilou1 · 25/03/2022 12:06

So sorry people are being nasty @greenwayer. You absolutely don’t deserve this and you’re very vulnerable right now. Furious on your behalf!
I wonder if they have thought to check your mother’s blood sugar levels…

ReadyToMoveIt · 25/03/2022 12:11

This reply has been deleted

Message deleted as it quotes a deleted post.

DalarnaHorses · 25/03/2022 12:12

Hope you are OK OP. Some of the replies here are horrible.
Communication in the NHS is absolutely dire, individuals are fab, but as a collective not so much. My Dad has been on 5 wards in 5 days no wonder he's bloody confused, my Mum's not known where he is from day to day. The new ward has no mobile signal so he can't even bloody talk to anyone. My Mum can visit once a day, but he is only allowed 2 visitors and not at the same time, I have covid so can't visit yet. They have to be the same two throughout his stay, so as a result he only has my Mum and the relative who drives her has to stay outside, because they want to save the second place for me for when I test negative. It's totally batshit and yet not one person has checked my mum has had a negative lft.

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Original poster
greenwayer · 25/03/2022 12:43

I don't know why I'm being accused of lying about hospital visiting policies during a Covid outbreak. She was on one ward for 10 weeks with many people coming and going, some with Covid, she was a contact several times. It was a red ward. No visitors. Don't you think how frustrating it's been for me having no idea at times what state shes in, is she being fed? Is she sore? Is she in pain? etc I was really hoping I could get to see once in the rehab hospital but she was only there a matter of hours and I didn't even know that until 2.20 this morning. Seriously don't judge until you've been in this situation, it's obviously very different hospital to hospital, unfortunately we have no choice about some things.

Latest update is that she's unconscious again, nil by mouth and IV medication, mouth care. Still awaiting a Dr, the nurse I spoke to thought she'd been in rehab a while, see how communication is lacking?

OP posts:
tomsellecksloverug · 25/03/2022 12:49

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countrygirl99 · 25/03/2022 13:13

OP there are some people who have clearly not had a parent in a hospital with strict visiting rules recently. The one my dad in had a security guard by reception when I dropped toiletries etc off for him, standing making demands to see him would have got me kicked out not a trip to the ward.

BoodleBug51 · 25/03/2022 13:17

Given your update OP, I'd say this is now palliative care.

I'm so very sorry, this must be horrendous Flowers

Hell0G00dbye · 25/03/2022 13:20

I feel worried on your behalf OP about the terrible communication. If her GCS truly is 3 and she has a DNR and they are only providing mouthcare it does sound like an end of life situation. They should have been much clearer about that and allowed you to speak to her consultant.

Calennig · 25/03/2022 13:44

It is a difficult situation where communication with the hospital is appalling

Get in touch with local PALS - see if they can help with the information flow at least.

We've had family in hospital which weren't allowing visits - turning up got family no where either - but PALS were helpful.

DalarnaHorses · 25/03/2022 13:44

the nurse I spoke to thought she'd been in rehab a while, see how communication is lacking?

I know exactly what you mean, one nurse thought my Dad had dementia, assumed we knew, upset my Mum. When she finally got to speak to a doctor, the confusion is down to the infection, nonone has mentioned dementia. No one rings you, Mum's only allowed 1hr a day, so the chance of catching a doctor is slim. The other day she was 10mins early, so they said she'd have to leave 10 mins earlier. She doesn't know where he is from one day to the next. They are telling Dad things, but he's not sure who is telling him what - he had his bags packed the other day because he thought he was leaving.

Quite frankly the covid restrictions are probably having a worse effect on mental health and recovery than covid itself. And on top of the NHS's usual communication issues, it's a total shitstorm.

YanTanTetheraPetheraPimp · 25/03/2022 13:52

Gosh, I really do feel for you OP.
My mother was on a so-called rehab ward for 9 weeks, allowed 1 visitor for 10 minutes once a week. She was very deaf (they lost her hearing aids), poor appetite (they lost her dentures), her wedding ring disappeared and so did her clothes we took in from home (clearly labelled and a prominent note on her locker stating we would launder them, no laundering facility at the hospital)
She developed a hideous pressure sore, lost even more weight and died 3 months after we took her to the best nursing home I could find.
I lodged a formal complaint, didn’t even get an acknowledgement.
No one ever answered the phone, it would just ring out.
Disgusting treatment.

YanTanTetheraPetheraPimp · 25/03/2022 13:53

I would contact PALS and request an urgent update.

Calennig · 25/03/2022 13:55

Quite frankly the covid restrictions are probably having a worse effect on mental health and recovery than covid itself. And on top of the NHS's usual communication issues, it's a total shitstorm.

I'd agree with this base on our families experiences.

Original poster
greenwayer · 25/03/2022 14:00

@BoodleBug51

Given your update OP, I'd say this is now palliative care.

I'm so very sorry, this must be horrendous Flowers

I can see how this appears to readers as the end and it could be, it will be one day, but she's had 10 weeks of being literally on and off. When she is awake she's fed etc and then she sleeps then she can have days asleep and not able to be roused then a few days of being fed, trying to talk, actually talking, trying to feed herself then back to square 1 again totally unresponsive. Around 3 weeks ago she was that alert they sedated her because she was extremely vocal. There seems to be no medical reason for any of this. She's had every test possible, even a special team from London turned up one day to assess her for possible CJD! But that didn't fit her symptoms. They really have investigated everything. Full body scans looking for cancer in case there could be hidden secondaries in her brain but nothing. No cancer, no infection nothing. I don't know what more I can expect the hospital to do? Any ideas?
OP posts:
Sceptre86 · 25/03/2022 14:04

Sending lots of love op. x

glittereyelash · 25/03/2022 14:10

I'm so sorry it's such a horrendous situation to be in you must feel very helpless. I hope you have family support. In my case my mother had been ill many many times throughout my life but we knew this was different so we kept pushing until we got answers. It's so difficult during these times and just know your doing the best you can for your mum ❤.

VeryMuchFlaggingMinty · 25/03/2022 14:16

I'm so sorry you're in this no-mans land OP.

My dad was on end of life care for 15 months and in a similar state to your mum for around 8 of those. They never managed to diagnose him with anything other than 'frailty of old age'.

We thought it was the end so many times. One morning we called the end of life care hub to assess him and they said to prepare for the worst. Four hours later he was sitting up in bed demanding boiled egg and soldiers and a cuppa.

I had to make peace with the fact that nature would take it's course as and when.

He was in a home for the final few weeks as mum and I just couldn't manage. Even though he was receiving end of life funding, the nurse manager wouldn't allow us to increase our visits because he wasn't at 'end stage'. We finally won that battle only for him to pass away 3 days later in the small hours of the morning. We missed the call to get there asap although the subsequent one telling us he'd slipped away was just 10 minutes later and we'd never have made it.

You are doing everything you can and things will take their course as fate sees fit. Look after yourself and take no notice of the posters berating you on here.

LuluBlakey1 · 25/03/2022 14:17

It must be dreadful.

I am not a medic but it does sound like some kind of encephalitis- but you say they ruled that out?

My grandma died after months of this kind of unconscious/semi-consciousness but it was after she was knocked over by a car. She wasn't badly injured in any other way but her head hit a kerb and it left her in this state of, what the Dr described as, a kind of coma. She almost appeared dead at times- shallow breathing, no sign of consciousness- for a day or two- and then suddenly would wake up and be fed (mushed up food) and have vague conversation, recognising people and then would slip back into the coma type state. It was bizarre and I think we knew she wasn't going to recover- as if her body could not stay alert. But she had been hut by a car so there was a cause.
I hope your mum recovers.
I don't think you'll get any more detail over the phone- the hospital don't sound as if they have done this very well at all. I can't see why a specialist could not have had a zoom cll with you for 15 minutes in all this time.

dontgobaconmyheart · 25/03/2022 14:33

No firm diagnosis at this time doesn't mean there isn't a medical reason there OP, just that they don't yet know the cause of what sounds like a fairly significant level of illness. Sleeping and losing consciousness are a very different thing to one another medically. GCS levels you are being reported are more generally associated with a risk of mortality and a low success of a longer term recovery, particularly in the elderly, I am sorry to say. If you are not sure where she sits currently and what her consultant believes is happening both now and going forward I certainly would seek firm clarification again.

Your posts do read with a level of dissociation which I think is perfectly understandable in such a stressful situation with a loved one. Kindly, I would advise going there, or at least calling PALS at her hospital for advice and a written summary of her current care or speak to the matron and state you require to visit her if you can even if you are (very reasonably) hoping for the best based on a past experience.

Often being physically nearer makes these things easier to deal with and let's you feel more in control but we all do deal with things differently. Best wishes for your DM, OP.

SirVixofVixHall · 25/03/2022 14:42

@DalarnaHorses

the nurse I spoke to thought she'd been in rehab a while, see how communication is lacking?

I know exactly what you mean, one nurse thought my Dad had dementia, assumed we knew, upset my Mum. When she finally got to speak to a doctor, the confusion is down to the infection, nonone has mentioned dementia. No one rings you, Mum's only allowed 1hr a day, so the chance of catching a doctor is slim. The other day she was 10mins early, so they said she'd have to leave 10 mins earlier. She doesn't know where he is from one day to the next. They are telling Dad things, but he's not sure who is telling him what - he had his bags packed the other day because he thought he was leaving.

Quite frankly the covid restrictions are probably having a worse effect on mental health and recovery than covid itself. And on top of the NHS's usual communication issues, it's a total shitstorm.

I agree with this, I am very careful re Covid, but some of the hospital rules are cruel, and causing more distress than they solve.
Octopus37 · 26/03/2022 07:53

Sending you lots of love OP, its hard, have been in similar situations. Sorry dont know how to do the flowers emoji.

Totally agree about hospital rules and Covid. Think there will be a lot of mental health casualties cause of the rules.

Original poster
greenwayer · 26/03/2022 15:39

No update at all today, I've called several times but nobody answers, I don't know if she's moved ward

OP posts:
Pegsmum · 26/03/2022 18:58

Thank you for updating us, you have been in my thoughts a lot.

BoodleBug51 · 26/03/2022 19:05

I can't even begin to imagine how horrendous this is to deal with.

I went for routine hospital screening yesterday that was nearly 2 years overdue, and getting into the building was like getting into Fort Knox. I can easily imagine that getting onto a ward must be nigh on impossible.

Stay strong, OP, and wait until Monday morning to contact PALS Flowers

Planetbippop · 26/03/2022 20:04

@greenwayer

No update at all today, I've called several times but nobody answers, I don't know if she's moved ward
Call the hospital switchboard & ask to speak to the clinical site manager. They can find out where Mum is & how she is & ensure you get an update.