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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:
winewolfhowls · 26/03/2022 22:10

My thoughts go out to you op, what a terribly difficult situation. Don't underestimate the effect of this long term stress on yourself and it's possible impact on your current thinking too.some great advice from health care professionals on the thread. Good luck with Pals.

Mischance · 27/03/2022 21:48

I am very sorry that you are having such trouble communicating with the hospital - it really is a disgrace and my heart goes out to you.

Communication in hospitals has always been a problem - both inside the hospital between departments and staff, and with relatives and other outside agencies.

Original poster
greenwayer · 28/03/2022 11:11

I finally managed to find out that she is on a different ward. The nurse I spoke to was lovely and helped me speak to my Mom on loud speaker. I got to wish her a happy Mother's Day and she tried her best to reply. Her speech is very slurred and she is drowsy, the nurse explained how they are trying to encourage fluids even though she's on a drip. No news from a Dr yet but that's no surprise. Maybe things will be different on this ward?!

OP posts:

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General health
BoodleBug51 · 28/03/2022 11:14

Oh I'm so pleased you got to speak to her, what a relief.

Fingers crossed she's getting the right care now.

334bu · 28/03/2022 11:21

Glad to hear your update. Take careFlowers

Original poster
greenwayer · 28/03/2022 14:32

I've called the ward, the Dr has put her back on oral meds to see how she gets on, speech isn't great but they are working around it. Still no reason for why she's like this and they seem very keen to send her back to the rehab facility she was sent last week but only lasted a few hours there.

Also as of yesterday she was a Covid contact so can't go anywhere for 10 days and definitely no visitors.

OP posts:
BoodleBug51 · 28/03/2022 14:55

Have they ruled out TIA's?

www.nhs.uk/conditions/transient-ischaemic-attack-tia/

My Nan's medication was changed and she kept having these as a side effect.

Original poster
greenwayer · 28/03/2022 15:57

When I spoke to someone for the first time from neurology last week they said TIA didn't fit because the symptoms resolve and not a stroke though there is a damaged area at the front of her brain but that could of been caused years, months, weeks ago but she hasn't shown evidence of stroke in any of their test over the last 10 weeks.

OP posts:
SayCheeseBoris · 28/03/2022 16:12

How awful for you OP you must be worried sick. We had similar problems with my Mum when she was in her last few weeks. Getting any updates from the hospital was nearly impossible so we had to physically be there almost the entire day waiting to catch the right person for a proper update and to really fight for her care which was shocking as you'd assume good care would be given while she was there. It wasn't. Far from it and it ended up in complaints having to be formally made.

In regards to her being in and out of sleep etc have they mentioned hospital acquired delirium?

Mischance · 28/03/2022 21:55

I am glad that you had the chance to speak to her.

She really does not sound fit for rehab.

Original poster
greenwayer · 28/03/2022 22:29

I don't know what to do next. I feel like they've given up on finding a reason for her sudden decline, she's 69 and could walk, talk, eat & drink 10 weeks ago.

Would it sound over the top or unreasonable if I mention how I think she should be transferred to another hospital, one with a neuro ward. Several Drs over the past 10 weeks have said she is a very complex case. I don't know how she would react to the journey anyway but I don't want them to give up looking. In her more lucid moments she just wants to feel better and go home.

OP posts:
redandyellowbits · 28/03/2022 22:38

Could she have encephalitis? It sounds so similar to what my aunt went through last year. Also, if you want more access to visit your mum please consider sending a letter of complaint/request to the hospital CEO emphasising the impact of isolation from family on your mum's mental health. That worked in my aunt's case and my grandma's case and allowed us more regular access.

Pegsmum · 28/03/2022 22:58

I don’t think requesting a transfer to somewhere with a neuro ward is unreasonable at all. There’s no harm in asking. If you have done any research and have a hospital in mind you could either approach them directly to ask if they would accept her-they can only say no. You can usually obtain the consultants’ secretaries numbers from hospital websites, it’s worth a call. Particularly if you think hospital she’s in at the moment seem to be giving up on finding a reason for her decline.
I know how hard it is at the moment with the Covid rules still in place and I wish you luck with your next step, it’s exhausting take one day at a time.

Original poster
greenwayer · 30/03/2022 17:25

I've spoken to a new Dr involved. He seems to think Mom will never get any better now as she has been like this without improvement for 11 weeks. We discussed rehab and I saw it wasn't fair on her to send her there and he agreed. Long term we are looking at 24hr nursing care probably with hospital admissions along the way when her consciousness drops and returning to the nursing home when/if she becomes more alert. They thought she was a bit dehydrated the other day when she dipped, she had been in their care!

I mentioned her moving to a special nuro hospital but he said they don't do that often because the Drs all talk to one another between hospitals and she wouldn't receive any different tests there. My argument is that she would be under the constant care of neurologists though and not a gastric Dr or renal Dr as she is now, they seem to just pass the messages on to neurology. He also said it happens more often than you think that people are ill and a cause isn't found. That's not reassuring.

OP posts:
Mischance · 30/03/2022 19:06

I am presuming that, although there is no clear diagnosis, they are saying that the most likely seat of the problem is neurological. If it were my mum I would wish her to be under specialist care and let them make the decision as to when it is appropriate to throw in the towel and look at long term nursing home care. There are some very obscure neurological illnesses and I would be happier to see her under the care of neurologists for at least a period so that the diagnosis (or absence of it) can be confirmed.

If you find yourself in the situation where long term nursing home care becomes necessary please make sure they assess her for continuing health care funding, under which the health authority pays for her care on the same basis as if she were in hospital. Please feel free to pm if this situation arises - I got this funding for my OH, but only after putting up a fight. I know a lot about it now.

Pegsmum · 30/03/2022 21:33

I am so sorry you and your mum are in this awful situation.
I think if I was in your position I would ask for a second opinion from a neurologist, preferably from another hospital. Even if you can just speak to a different consultant it may help you to know you have explored other avenues. Would it help to speak to your mum’s GP for advice?
I have very recently lost my mum and I know how frustrating it is to try and be heard by medical staff.

Original poster
greenwayer · 30/03/2022 22:38

@Mischance

I am presuming that, although there is no clear diagnosis, they are saying that the most likely seat of the problem is neurological. If it were my mum I would wish her to be under specialist care and let them make the decision as to when it is appropriate to throw in the towel and look at long term nursing home care. There are some very obscure neurological illnesses and I would be happier to see her under the care of neurologists for at least a period so that the diagnosis (or absence of it) can be confirmed.

If you find yourself in the situation where long term nursing home care becomes necessary please make sure they assess her for continuing health care funding, under which the health authority pays for her care on the same basis as if she were in hospital. Please feel free to pm if this situation arises - I got this funding for my OH, but only after putting up a fight. I know a lot about it now.

Thankyou so much for getting in touch. I'm not sure about the funding side of things, Mom doesn't have that much in savings and unfortunately I'm not in a situation where I can pay such amounts. I think I will be looking for information on this subject soon. I'm sorry you have been through a fight but I'm grateful of the offer of advice.
OP posts:
HoppingPavlova · 31/03/2022 11:24

I don’t understand. She’s in a hospital that has the other specialties but no neuro service?

BoodleBug51 · 31/03/2022 13:05

That sounds like a living hell for your Mum, as well as you.

It seems beyond imagination that they've got no idea what's behind this lack of consciousness.

Mischance · 31/03/2022 17:00

@HoppingPavlova

I don’t understand. She’s in a hospital that has the other specialties but no neuro service?
It is the same where I live - no neurologists, no spinal surgeons, no neurosurgeons, no heart surgeons - we get shipped off somewhere.

I am used to the situation where non-specialist medics are dealing with something that needs a specialist.

Original poster
greenwayer · 01/04/2022 22:20

After many attempts I managed to get through to the ward, the nurse said neurology want Mom to have a MRI on her spine. No more information than that, no suggestions of what they are looking for. If I hadn't called I wouldn't know. I don't expect it to be done urgently but knowing how slow things go I expect it to happen towards the end of next week. I normally get a call right before she has MRI scan to be asked safety questions. It will take many calls/days to get the results. 11 weeks (in hospital) and counting. I worry about the level of care she is receiving. There's meeting your daily needs then there's being cared for. It's a very long time to go without some form of enrichment if that's the right way to put it.

OP posts:
Pegsmum · 01/04/2022 23:03

I think you are right to be concerned about the level of care your Mum is receiving. In my recent experience even basic needs were not met, and as there is extremely limited visiting this is going unseen.
. I hope that isn’t the case with your Mum. But with the restrictions in place what can you do? It’s just awful you are having to fight for any information. Is there anyway you can have a telephone appointment with someone from neurology to ask about the MRI?

Mischance · 02/04/2022 09:16

I think it has reached the point where you would be entirely justified to speak to the hospital's PALS department who deal with complaints and concerns. It is entirely reasonable for you to want to be in the loop about your mother's diagnosis and care, and honestly I think it is time to get tough - demand a meeting with the clinicians and have a list of questions that you want answered. You could do this on zoom.

I am very sorry to have to say this - and apologies to all nurses and doctors on here who are providing good care - but my experience is that you need to fight for proper care for your loved-one - it often does not happen as a matter of course.

My DDs and I finished up being with my OH on the ward all day on a rota (this was pre-covid) just to make sure he had food (and that it was put somewhere he could reach it and he was helped to eat it), was hydrated, had his complex meds regime administered properly - timing was critical - I had been dealing with this at home for ages - and had his eliminatory needs properly dealt with - rather than letting him get wet/dirty because there was no-one to deal with his calls for help.

Sorry for mini-rant - it is very fresh in my mind and always will be.

I hope that you manage to get a proper discussion with the clinicians.

Planetbippop · 03/04/2022 18:11

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.

countrygirl99 · 03/04/2022 18:17

@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.

You clearly haven't had a frail elderly relative in hospital in the last couple of years. I'm of an age where most of my friends have very elderly parents and I don't know anyone who hasn't had to battle to get updates let alone updates that are consistent. We even got told that my dad who was on end of life care, 94 and with covid was OK to discharge home. When challenged the person updating was unaware he was on end of life care! That was a few weeks ago.