Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Stroke Experiences

199 replies

PurplePineapple1 · 12/01/2023 19:00

I'm blatantly posting this here for the traffic.

Husband had a triple heart bypass on Tuesday and suffered multiple strokes immediately after the operation. He has a Glasgow coma score of 12. I cannot seem to get any meaningful information from the hospital. He is mostly unresponsive. Has barely opened his eyes. Did have a good period yesterday of squeezing my hand on command and giving thumbs up. He is constantly holding his head and moaning. They suspect swelling in the brain.

What's going to happen? Why won't he wake up? I have to ring ITU 10 times a day just to get the most basic updates and I just want to know what is going to happen to him. Please help me :(

OP posts:
Hdkatznahtw125sgh · 08/02/2023 02:52

I’m an adult icu nurse reading this on break.

so sorry for everything you and your husband have gone through @PurplePineapple1

I’ve cared for many patients who have had a stroke and so many patients with ICU acquired weakness, your husband sounds to have made very good progress (although I know it won’t seem that way).

A few points I wanted to say which I hope might be mildly helpful

  1. sorry to hear about the deficiencies in his personal care / mouth care and just wanted to say always report this to the unit SCN/sister although I realise I’ve just read this all in one night so might be out of step.
  2. try and take care of yourself, you’ve been through a big and very stressful ordeal which is still ongoing - could you speak to GP about some short term measures like a trial of low dose sleeping tablet maybe (and ? a sick line if needed)
  3. hope things go ok with your visitors, as a nurse and relative myself often visitors can seem intense to close family - their concern manifests in different ways. You’ve done an excellent job of supporting your husband, they should be supporting you - not vice versa. Not all visitors add value to the patients experience so if you need to cut the visit down and lay the boundaries you are right to do so

Also, I just wanted to say (and I know this is easier said than done) but remember it’s okay to take a break from visiting. I know it’s really anxiety inducing but we often find relatives get very very burnt out with constant visiting and the caring role they take on and need support to have more breaks.

With all your husband has been through he is likely to be dealing with some anxiety and stress . PTSD is v common is post ICU patients, he should have access to psychology services - stroke units usually have access to them and some ICUs have a post ICU services. I hope he’s able to access these if needed.

take care xx

Pirrin · 08/02/2023 03:08

Totally OK and normal to be having a terrible day, even if it coincides with some decent progress for him. The situation as a whole is still incredibly hard and stressful, even when moving in the best direction it could. Don't underestimate that. Do whatever you need to do to get yourself through this - DH is being well looked after.

Any chance you could say to your visitors (assuming theyre staying with you) that you appreciate them coming but are so emotionally burnt out that you aren't up to being a host in any manner - here's a key to come and go as needed, a bunch of takeaway menus, and you'd appreciate a quiet house between x and y hours. Who cares if they think it's rude (anyone half decent wouldn't).

ShirleyValentin3 · 08/02/2023 09:35

Pirrin · 08/02/2023 03:08

Totally OK and normal to be having a terrible day, even if it coincides with some decent progress for him. The situation as a whole is still incredibly hard and stressful, even when moving in the best direction it could. Don't underestimate that. Do whatever you need to do to get yourself through this - DH is being well looked after.

Any chance you could say to your visitors (assuming theyre staying with you) that you appreciate them coming but are so emotionally burnt out that you aren't up to being a host in any manner - here's a key to come and go as needed, a bunch of takeaway menus, and you'd appreciate a quiet house between x and y hours. Who cares if they think it's rude (anyone half decent wouldn't).

I think this would be the way to go with your guests. You're in no position to entertain anyone and we'll within your rights to be firm with your expectations.

Don't let people take the mick when you're in a vulnerable place.

As for the progress with your DH - amazing that he walked! It really is. The hospital will be supporting him in so many ways to get home. I know it's heartbreaking, but it won't be forever. Keep reminding him (and yourself) that every day he is there he is getting stronger, and a step (literally!!) closer to get home.

❤️

Nongatron · 08/02/2023 22:08

@PurplePineapple1 I know it doesn’t feel like it just now but you are both doing so well. Wonderful news that your dh is walking round the ward with the physios.

The levels of exhaustion that you are both experiencing will be like nothing you’ve felt before. But you will get through and you will be together at home.

Other posters have given brilliant advice re guests no hosting from you you’ve got enough on!

Continuing to send good vibes and strength to you both x

PurplePineapple1 · 10/02/2023 00:22

This reply has been withdrawn

This message has been withdrawn at the poster's request

Original poster
PurplePineapple1 · 10/02/2023 00:27

Hdkatznahtw125sgh

Thank you for your post.

I feel desperate for a break. I'm running on empty. I can't justify leaving him though. I'm ill again but I think I'm just picking up everything that you pick up from hospitals.

OP posts:
Original poster
PurplePineapple1 · 10/02/2023 00:34

Visitors aren't staying with me. We live in a 2 up 2 down terraced house. It's the expectation that I'm up for entertaining after visiting hours and all I want to do is go home and cry.

OP posts:
antipodeancanary · 10/02/2023 00:35

He looks great. He doesn't look disabled at all. He just looks like someone in his pjs! You must be very proud of him. You also look great even if you are feeling terrible! You are definitely seeing progress now, I hope he can see that too. All the best and lovely photo x

Icecreamandapplepie · 10/02/2023 00:35

You look lovely. And he's up. Hope is there.

greenspaces4peace · 10/02/2023 00:35

you look fine and your eyes are smiling :)
is the thickner available at the bedside? you could bring him food from home (the puree texture is easy enough to obtain and most importantly more nutritious than the hospital stuff).
don't be too shy about asking for barbers who come to the hospital or asking if you can bring pj's from home (you will need to do the laundry though).

Original poster
PurplePineapple1 · 10/02/2023 00:43

greenspaces4peace

No, the thickener is rarely seen. I've seen the tea lady once so far. I've been told he's fine with "bits in" juice so I've been bringing him orange with bits in. I mean, I could tell them what he can and can't swallow because I'm there far more than any health practitioner.

OP posts:
mackthepony · 10/02/2023 01:02

Do not fret about entertaining anyone. You're absolutely worn out and it's totally unreasonable that you'd entertain anyone... People should be looking after you!

Original poster
PurplePineapple1 · 11/02/2023 01:33

Today has been horrible. I went to bed at half 9 tonight hoping for an early night and have done nothing but toss and turn until now so I've given up and got up for a brew.

He's had no physio for 2 days and has been in bed all day for 2 days. It infuriates me, I can't see how this is beneficial. I'm at the point where I think he'd be better at home.

OP posts:
greenspaces4peace · 11/02/2023 03:16

are there some physio exercises you would feel comfortable doing with him while you visit?
are you able to ask for some support from the staff?

Auldfangsyne · 11/02/2023 07:32

@PurplePineapple1 just read your post and wanted to say it's been lovely to hear how well your DH is doing.

I'm a physio and there was a strike day 9th Feb, likely the reason he didn't get input that day.

Re visitors - we always speak to families to say having visitors is very tiring and rest is important. Fatigue is a huge issue after stroke. Use that as a boundary to say no.

Also once you start thinking he'd be better at home - he probably would! It's a great sign things are moving in the right direction once you outgrow the hospital. Ask for an multi disciplinary meeting (MDT) if he's not had one already. It's a meeting where all the health and social care professionals come together to discuss progress and plan for discharge/ follow up.

He may thrive at home in his own environment with the right support.

blackearth · 11/02/2023 07:52

PurplePineapple1 · 10/02/2023 00:43

greenspaces4peace

No, the thickener is rarely seen. I've seen the tea lady once so far. I've been told he's fine with "bits in" juice so I've been bringing him orange with bits in. I mean, I could tell them what he can and can't swallow because I'm there far more than any health practitioner.

SLT here - thickener should never be left at the bedside as there's a safety alert after someone picked it up and tried to drink it (confused patient) and they choked and died. It's most likely on the drinks trolley or in the kitchen but definitely go and ask for it. Hopefully he'll get off it quickly as it is usually a short term measure anyway. Are they doing any swallow rehab? Do they have an Iqoro device he could try?

Original poster
PurplePineapple1 · 15/02/2023 23:26

We have an MDT on Monday.

He's now on level 6 food and can have anything to drink that he wants, no thickener.

He fell last night. He wanted to go to the toilet and nobody came to help him so he got out of bed, walked across his ward bay and then fell and hit his head. He had a CT scan this morning after the fall. He now has a bleed on the brain.

OP posts:
Pirrin · 15/02/2023 23:30

Oh no, what a blow - i'm gutted for you. Does he have additional symptoms from the bleed?

Nongatron · 15/02/2023 23:31

I am very sorry to read this. How extensive is the bleed? Im hoping it’s small. How awful for you both. What explanation have you been given for him not being helped by staff? Im so sorry.

I hope your dh has not been too badly affected. So stressful for you both.

I know previously you were saying you wanted him home I don’t blame you

Can you attend the multi disciplinary meeting?

Sending you both continued strength

Original poster
PurplePineapple1 · 15/02/2023 23:33

I'm told it's a small bleed. He's on warfarin for the clot in his heart so the immediate priority was "reversing" the effect of the warfarin. He's on a vitamin K drip.

He had a headache and was a bit confused. He appeared a bit manic to me today.

I cant find the words at the moment. I'm so so angry.

OP posts:
Azulocean · 15/02/2023 23:35

Crikey, I really feel for you reading your posts. I’m sorry I’ve nothing of value to add, just wanted you to know someone is here and listening x

*would have been asleep but teen dropped something heavy on her floor (above our bedroom), and then five minutes later the dog gets up to go pee…said dog is also not sorry and is asleep on me to try and calm me down but is making me hot!

so awake for a while if you need to keep writing x

Original poster
PurplePineapple1 · 15/02/2023 23:37

Azulocean that made me laugh. Our cat is so confused by the fact that I'm up all night. He keeps bringing me his ball (he's one of those dogs in a cat body) and dropping it on my lap for me to throw. He's used to lights out at 10pm usually, I think he must think he's on a wild holiday 😅

OP posts:
Original poster
PurplePineapple1 · 15/02/2023 23:40

Here he is.

Stroke Experiences
OP posts:
Azulocean · 15/02/2023 23:42

What more can you ask for? A midnight party with your cat 🤣. You’ll look back on these posts in a few months a think “what a trip those months were!”.

The cat 100% won’t let you forget the early hours of gaming so this is your life going forward!

Azulocean · 15/02/2023 23:43

He is just perfect! Looks like he’s giving you his demands too ;-)