The hospital just called...

[greenwayer]

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.

@countrygirl99

You've no idea of my life experiences, so don't use your assumptions as backbone to your response.

Well your comment was the direct opposite of me snd my acquaintances do maybe you've been lucky and shouldn't be so dismissive of others.

@countrygirl99

Well your comment was the direct opposite of me snd my acquaintances do maybe you've been lucky and shouldn't be so dismissive of others.

Belt up. You're clutching at straws & trying to make your comments relevant!

@Planetbippop

You don't sound like your asking any questions of staff, other than on here, so you won't have any idea what's going on. I & others have previously advised who to speak to, but you haven't. You sound very happy to accept whatever is said on the phone & then come away & dare I say, play victim & moan.

This is your mother, if you care, grow a spine & start insisting on regular updates or contact PALS & ask them to sort it. I've never known anyone behave this way, it's bizarre.

Do you have recent (in the last 2 years) experience of a close relative in hospital ? One who can't communicate with you on a mobile so you have to fully rely on hospital staff for all information.

Do you have recent (in the last 2 years) experience of a close relative in hospital ? One who can't communicate with you on a mobile so you have to fully rely on hospital staff for all information.

I have, yes. And after 11 weeks of lack of information like this, I'd be finding myself on the ward, making quite the fuss, in person.

As pp said, you've been told so many times who to contact, and how. I posted eatlier in the thread about getting in the car and going. And was cut down for not being sympathetic. With a log as long as you must have of unanswered calls I'd be calling the local press AS WELL AS the hospital execs, PALS etc, and demanding to speak to whoever was in charge of your mum's care. Yes, covid. But what you're describing is horrendous. And by NOT creating a fuss, by going down in person, it feels a bit like you're condoning it, accepting it.

My mum died in hospital. But I made sure I got the answers I needed, when I needed them. And I visited. There must be literally dozens of people involved in your mother's care op - and you're telling us that not one of them is giving contacting her NOK a single thought?

I'm becoming more inclined to disbelieve you with every passive update you post. Apologies if that sounds harsh. But you have not followed any advice from pp to change the situation.

@Fuuuuuckit

Do you have recent (in the last 2 years) experience of a close relative in hospital ? One who can't communicate with you on a mobile so you have to fully rely on hospital staff for all information.

I have, yes. And after 11 weeks of lack of information like this, I'd be finding myself on the ward, making quite the fuss, in person.

As pp said, you've been told so many times who to contact, and how. I posted eatlier in the thread about getting in the car and going. And was cut down for not being sympathetic. With a log as long as you must have of unanswered calls I'd be calling the local press AS WELL AS the hospital execs, PALS etc, and demanding to speak to whoever was in charge of your mum's care. Yes, covid. But what you're describing is horrendous. And by NOT creating a fuss, by going down in person, it feels a bit like you're condoning it, accepting it.

My mum died in hospital. But I made sure I got the answers I needed, when I needed them. And I visited. There must be literally dozens of people involved in your mother's care op - and you're telling us that not one of them is giving contacting her NOK a single thought?

I'm becoming more inclined to disbelieve you with every passive update you post. Apologies if that sounds harsh. But you have not followed any advice from pp to change the situation.

I'm glad you were allowed to visit your loved one. I don't know how you expect me to visit my Mom on a ward closed by Covid. I have challenged the staff who tell me there are lots of families wanting to come visit and I'm no different. I can't demand they let me in!

Some people on here sound clueless. I know someone having a very similar experience OP. She’s extremely pro active, has done all the right things and works in the NHS but has had to fight for every tiny bit of information. If I didn’t know it was actually happening, I wouldn’t think this could actually be happening. It’s been and continues to be a battle. I don’t have answers. Its a shit show.

I do yes. You're point being?

Any news on your mum?

More scans have not found the cause of her issues. Her speech is much better but she is confused about where she lives, she thinks she's been in hospital 12 months (I'm sure it feels that long) and told me she'd had a rotten Christmas. She also said she's sick of being in bed all day but then said she had been standing all day talking to other patients. The nurses assure me that Mom is still unable to stand so definitely can't walk and they hoisted her into a chair yesterday, unfortunately she fell out of the chair but luckily wasn't injured, they called me to let me know. Mom also said her hands are swollen and sore and thinks it's because of how rough the nurses are with her. Obviously I don't know how true that is. She says this is why she can't eat or drink herself but as I say she is still somewhat confused. The Dr said they were waiting for physios to come again and see if they could send her to rehab again. I told them that I'd already expressed my opinion on that, I don't think it's in her best interests, but what do I know?! The Dr said to wait and see what the physios say. I don't think we will ever know what has caused Moms sudden decline or the episodes of dangerously low consciousness. I think a nursing home would be a much better environment.