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.

Please take this as someone whose best friend missed her Mum passing away by an hour.

I am not sure why you are looking for reasons why you shouldnt go. 10 weeks is nearly 3 months when you havent visted. I also think if you are making 80 calls a day that takes you an awfully long way down the motorway so time isnt necessarily the issue here.

I suspect there is some history here (I have complex history as well) so if you have made your peace with this and your relutance to go then perhaps you need to stay where you are but some kind people have given you a description of what GCS means and 200 miles is really no distance to not travel for 10 weeks because......(this is the bit people dont understand).

To just share a little. I have a complex relationship with my DF and DB. If I had news like this I would be there at the end. To help them carry out their last wishes, be there to hold their hands etc. Both are Catholics and would want the last rites so I would find a priest for them.

Hope you get there in time x

Some people are being very harsh here. Hospital visiting has still been restricted in many areas even whilst Covid restrictions were lifted elsewhere. We've had elderly relative in hospital since before Xmas - 60 miles from me, 80 miles from my Mum and she's only just managed to get over to visit her because of the hospital visiting restrictions.

It's not just drive 200 miles, that's a 400 mile round trip, involving overnight stay with petrol prices through the roof as well. We didn't even have petrol available in our area last week as all the garages had sold out.

It's not always clear when or even if someone will go when they're this poorly. So it's very easy to say drop everything and go, but that can happen repeatedly. We had my Dad home from hospital at end of life with terminal diagnosis and he ended up hanging on far longer than anyone thought possible!

My original post was just to chat to others about the situation I was in in the early hours. When I had nobody else to talk to. It was supportive at the time, Thankyou to everyone who commented.

Unfortunately now it's turned into a personal attack, judgments made without knowing all the facts. Facts I'm not willing to share because they are unnecessary to my purpose of posting.

I don't intend to discuss my relationship with my mom here. I do care about her which is why I was up all night worrying and why for the past 10 weeks I've spent hours daily trying to get my mom the help she needs. I will continue to.

I'm sorry to hear the posts where you lost a loved one, thank you for sharing.

Also, aren’t covid rules almost completely relaxed now?

No, quite the opposite. Covid rates are increasing and hospital admissions are up.

The war in Ukraine has taken the focus off covid but it is still very much there. Hospital visiting at our local hospital has been suspended and my outpatients appointment has been cancelled.

I would call and say it's 10 long weeks of worry and you haven't been allowed to see her at all. Tell them you know that she is not in a good state of consciousness and want to see her before it's too late. I know you said they didn't let you originally as they had lots if covid on ward.. but that was 10 weeks ago.

I'm sorry you ate going through this @greenwayer, and that some posters are unsupportive

I can’t believe how this has deteriorated. One thing saying what happened in your situation, another criticising how the OP is reacting. Have a bit of compassion ffs, we all behave differently in these situations.

I'm so sorry for you Op , none of us know your story and are in no place to judge any of your decisions. It's a horrible situation and I'm sure you're doing what's best for you and your family . Sending you love and strength xx

My mum lived 300 miles away and I had 2 or 3 middle of the night calls, plus a few other major health events. pulled through each time, it's easy to tell people just to go but it's not always feasible. Between my brother and me we managed but she wasn't always satisfied.

Recently an elderly relative of DHs suffered a stroke whilst already in hospital. FIL escalated to the top to request a face to face visit as the relative was unable to communicate, wasn't eating etc. Permission was granted and is was hugely beneficial.

I hope you can get an accurate update of your mum's health

So sorry about your mum and the difficult situation you find yourself in. I live only 10 minutes walk from my nearest hospital and have sat for nights at numerous relatives' beds and still managed to be absent when one of my aunts died. I can't imagine how hard it must be for you so far away. Take care of yourself, my thoughts are with you.

Hi OP thinking of you, it’s so difficult being so far away. Hospitals are crap at communicating. Fingers crossed you manage to get some answers today.

On a slightly separate note, hospitals and care homes need to get a grip on managing with covid and facilitating visits. Visits are so important to the mental health of both patients and relatives. Covid isn’t going to disappear, are they going to keep families apart (and causing devastating mental health impacts) indefinitely?

@greenwayer I appreciate the distance ( 4 hrs maybe by road) but are you in a position to drive or get a train this weekend to see your mother?

If it is so hard to get answers by phone on her condition, can you not go to see her and talk to the drs?

Is it possible to leave a message with the neurologist's secretary requesting a formal meeting to discuss your mum's current situation and what their plans are?.
If you are getting nowhere with this, contact PALS. or go higher to the chief nurse or hospital chief exec. (you will need to write in for the best response)
A GCS (Glascow coma score)of 3 means a patient is unresponsive to everything. ie you could stick pins in them and they wouldn't flinch. A GCS of 3 requires intubation and ventilation and ICU care because the patient is unable to protect their airway. so something is not adding up here. Either they aren't treating your mum correctly, or the nurse's assessment was wrong. I would want answers to this. Has she been put on a DNR?

You have my sympathy. My mother is 200 miles away and in hospital. I can't drop everything and go, elderly husband, young puppy, nowhere to stay the other end. My sibling is keeping things together. It's a terribly painful situation. I hope things work out for the two of you.

Can you visit? It’s 200 miles but it’s been 10 weeks. I’d have been turning up wanting answers about 9 weeks and 6 days ago

(And others who wrote similar) Well done, you can polish your halos and know you’ve secured your position as “best child ever”

OP has her own reasons for making her own choices and was asking a question about the medical scenario around the GCS status.

If you had travelled 200 miles demanding answers, you wouldn’t have been in any different a situation to OP, because hospitals are not allowing visitors, you would have wasted your time. And all this “I missed my mum dying by 5 minutes” My mum and her sister were with my grandmother for 11 hours when they were told she was close to the end. They went to the cafe for a cup of tea at the insistence of the nurse on duty. Grandma died before they had got to the stairs. It is what it is and you can’t spend your life thinking “if only I had”

OP, I hope you get the answers you need. Take care of yourself too.

You've already had lots of advice here, one thing I'd add to it is to contact PALS at the hospital and explain what you've said here. Someone needs to be an advocate for your Mum, and with the distance it clearly can't be you.

Does another relative live closer who could step in? Or does your Mum have a close friend who would be willing to get involved?

If it is so hard to get answers by phone on her condition, can you not go to see her and talk to the drs?

Have people ever actually been in a hospital? You think doctors are standing around waiting for family members to rock up and ask questions?

I’ve just come out of hospital. In three days I saw my doctor twice. I’m far more likely to speak to her if I call her right now.

I’m sorry you are in this situation.
I’m also sorry to say that what you are going through sounds very similar to what I have just experienced and my mum passed away 3 weeks ago. Just like your mum, the hospital ran every test they could to try and find something, but there was nothing majorly wrong to explain her unresponsive state. It was as though my mum had just shutdown, when I mentioned this to the doctor she said that sometimes that happens without a clear explanation.
I know firsthand that visiting (or getting any answers) is extremely difficult and the hospital my mum was in is 10 minutes away. Covid restrictions are very much still in place and although people tell you to go and visit they really do stop you from entering the ward. I found it very distressing to have to to make an appointment to visit my dying mum.
I do hope your mum makes some improvement, but I would honestly prepare yourself. Thinking of you.

I'm shocked at the covid restrictions. My Dad is older and in hospital at the moment with confusion due to an infection that they can't locate. I can't see him as I have covid, but my mum visits everyday, she has to book a time and take an LFT, but she has never been stopped from visiting. Communication however is difficult, he has been on 4 wards so far and there doesn't seem to be any continuity of care.

Keeping my fingers crossed for good news for you and your Mum.

Hospital visiting is one person twice a week for one hour by appointment where I am. It needs to be pre booked and that’s for someone who’s on palliative care in a side room.

It’s absolutely horrendous and the information given about condition on the phone turns out to be wrong. You can only muddle though the best you can and rage against the universe OP.

for you.

OP I’m just posting my story as something to consider

My mum was in hospital for over 3 months. Bedridden. Incoherent speech (random words), short term memory loss. Similar ebbs and flows of energy levels to your mum. They diagnosed encephalitis and treated (but it wasn’t). Lots of MRIs, CTs and other tests, including muscle biopsy. No one could work it out. They could see some shadows on the brain but without a brain biopsy could not make a definite diagnosis. She was too weak for a brain biopsy.

She eventually died of other complications. A post mortem revealed a glioblastoma, a very aggressive brain tumour (rarely treatable). They have long tendrils hence it was so hard to detect on scans.

Not saying this is the case but it really baffled the consultants. Have they ruled this out?

69 is not particularly elderly, I am shocked that you aren’t getting any real information from the hospital. I do think if you can get there, see her, and speak to a Doctor in person then you might be better informed as it all sounds incredibly confusing.
If you talk to her Doctor in person then write down a list of questions, ask if you can follow these up by email if necessary. For reference a family member of DH died in hospital recently and DH was allowed to see him. We live much further away than you are from your Mum so we were very reliant on the telephone - the Doctors and nursing staff were all very kind, helpful and clear. So the hospital your Mum is in does sound particularly bad.
I think you need to contact PALS.

@greenwayer

Visiting on the ward she was on was strictly controlled because of the number of patients with Covid, I contacted patient services who assisted with video calls. She was not considered end of life so visiting in person was refused. I was hoping once in the rehab facility I might be able to go. I knew she could be going there any day now but nobody called to say she went there yesterday afternoon. I had tried calling the ward throughout the day but nobody answered. I have been known to call 80 times in one day before someone actually answers, then I'm told to call back because they are busy or someone is on their break etc. I left so many messages requesting neurology call me but it just didn't happen. In the end I called the neurology consultant secretaries to find out who was my mom's consultant. When they called me like I've said they really don't know what is going on. It is a difficult situation where communication with the hospital is appalling and after every test possible there is still no explanation. My mom was due a scan and the dr was also struggling for days to get through to the scanning department because the phones were constantly engaged, after several days she told me she was going to walk down there and book it that way and she did. I don't know if this hospital is an exception or if they are all like it but it's a complete shambles.

Complain to PALs and make a fuss. Your mum is only 69 she isn’t in her 90s. I know covid makes things difficult for the hospital but they aren’t communicating in an acceptable way.