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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:
Wordsofthewise · 15/02/2023 23:46

I’m so sorry. What an awful thing to have happened when you’re already going through hell. I wanted you to know I’m here if you need to talk and you don’t have to feel alone tonight. Sending you a virtual hug and love and strength 💐

what a gorgeous cat 😍 my little one has been asking for a black cat for his birthday, he will be envious of yours when I show him in the morning! xx

Mumof3teenagers · 15/02/2023 23:49

OP, sending big hugs your way. I can’t imagine how worried you are.
This is a critical time for your DH and he is in the best place and I’m sure getting the best help. It is a waiting game at this stage unfortunately. Waiting to see how the swelling reduces, how he responds to treatment and assessing his over all cognitive ability. The waiting and not knowing is the hardest part.

He will be sedated and on strong pain medication, so I’d say his concept of time will be distorted and he is not noticing time pass as you are at the moment. He is in good hands and you need to rest. You cannot pour from an empty cup, as they say. Take the time you need to get your rest. When you visit, chat away to him and you never know, he might be hearing you.

I hope you have people around to support you, if not, can you reach out to someone.
I’m Sending positive thoughts and wishes your way.

Mumof3teenagers · 15/02/2023 23:57

Just realised I’m late to this thread. I’m sorry to hear about the fall and the bleed. I really hope things improve soon.
Beautiful cat 🐈‍⬛

Original poster
PurplePineapple1 · 16/02/2023 00:10

We have only had him 14 months. He was a "feral" will never live in a home cat. I recall that write up when he's lieing on mu chest so far in my face I can't breathe 😅

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Mumof3teenagers · 16/02/2023 00:15

Aw, sweet and lovely company I’m sure. Hope you get some sleep tonight.

Original poster
PurplePineapple1 · 16/02/2023 00:16

Azulocean · 15/02/2023 23:43

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

He is furious in that photo and I can't remember why 😅

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Azulocean · 16/02/2023 00:25

Take the distraction even if it’s from super cute dictator cat 🤣….no saying no to that face! It’s the little things, and the small moments. A cup of tea and a smothering before bed! Ha ha x light relief!

Nongatron · 16/02/2023 16:33

@PurplePineapple1 I love the picture of your cat he looks brilliant 😃
I hope today has been a better day for you and your dh

Original poster
PurplePineapple1 · 21/02/2023 01:07

Had the MDT meeting today.

Doctor told me that they don't expect him to improve much, cognitively, from now.

The chap from the Stroke Association tells me that's nonsense.

Who to believe.

The new bleed has stopped. He will be put on apixiban in around 2 weeks.

Today was the first day I realised I'm really unlikely to get him back.

OP posts:
ShirleyValentin3 · 22/02/2023 12:23

Hi Purple. Have you joined any stroke support groups? There are some great ones on FB. If you do this, you will see first hand from the users (some have had strokes, others are family members), how much progress people continue to make - sometimes years after a stroke. Please don't let one doctor bring you down - it is such early days still.

How is his mood now?

Original poster
PurplePineapple1 · 24/02/2023 23:39

Hi ShirleyValentin3

I joined a fb group but it wasn't for me.

He's on the discharge path now. I don't think it will be long, 1 or 2 weeks.

I'm told now, repeatedly, that he won't cognitively improve any further and the him we have now is all we'll get back. Conversely, I have nurses telling me they regularly meet ex patients, who were told they'd never walk/speak again, coming back to visit whilst walking and talking so who knows.

He's very disabled. Near blind.

Practically again I'm in a mess. He's too distressed and vulnerable to be left but my work will only be so patient. I have no idea which way to turn.

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Pirrin · 25/02/2023 00:22

Oh golly that sounds so tough for you to get your head around. And preparing for him being discharged sounds daunting Flowers I suppose you're being given a realistic prognosis, but that's not to say he won't be one of the ones who does better than that. Not that you can hang your hopes on that - will be wonderful if it happens but can't be planned for.

It sounds like you need some info on all the possible services, benefits etc that he/you might be eligible for? Would the CAB be any good? I'm rubbish with this sort of thing but there's always loads of knowledgeable people on here full of ideas. Would a second thread that lays out the situation and get lots of people seeing it and responding be useful?

(Oh, and a relative with sight loss that ended up blind found the RNIB helpful).

Munchyseeds2 · 25/02/2023 20:51

I am so sorry that you are both having to cope with this
I also can't believe how quickly people are discharged now....my dad was in stroke rehab for nearly 6 months 20 years ago

Original poster
PurplePineapple1 · 25/02/2023 21:24

Munchyseeds2 · 25/02/2023 20:51

I am so sorry that you are both having to cope with this
I also can't believe how quickly people are discharged now....my dad was in stroke rehab for nearly 6 months 20 years ago

In honesty, he isn't coping in the hospital environment. He needs to be home. He's the youngest man on the ward, the rest are 70s and 80s. He is left in bed alone for much of the day and it is ruining his mental state. He has to beg to be taken to the toilet and the lack of dignity is incredibly upsetting. I have pushed and pushed the last few days to say he needs to be home.

OP posts:
chanceofpear · 25/02/2023 21:47

My mums consultant told us the recovery abd improvmebt was 2 years.

Original poster
PurplePineapple1 · 26/02/2023 00:47

chanceofpear · 25/02/2023 21:47

My mums consultant told us the recovery abd improvmebt was 2 years.

That does give me some hope, thank you.

OP posts:
AuntyMabelandPippin · 26/02/2023 13:49

OP, there is a book called My Stroke of Insight. It is written by a woman who worked with stroke patients and then had one herself. I recommend you read it, it was so helpful when my family member had theirs.

Munchyseeds2 · 26/02/2023 13:52

We were told meaningful recovery In first 6 months then small gains after that

Practically my parents were older so my mum was at home to look after him
Make sure you get help to claim all that is avaliable financially, pip, council tax discount etc and any help so you can continue working??
Also much as you want to, don't have him home until any equipment needed is in place or a care package is set up

Munchyseeds2 · 26/02/2023 15:07

Having re read your post....is he on the discharge pathway because you have pushed or because they think there is nothing to be gained by him staying in?

GlorifiedChair · 26/02/2023 17:32

That does seem really quick for discharge, and for saying that he won't improve cognitively. My dad had a major hemorrhagic stroke in his early fifties and spent four months in hospital. He definitely improved physically and cognitively beyond the 6/7 week mark that your husband is at.

RandomMess · 26/02/2023 18:15
Flowers

He will continue to improve. He needs to balance challenging himself as much as possible cognitively with resting enough. Rest is impossible on the ward!!

I was told the most progress is in the first week, then month, 6 months, 12 months and then much slower incremental improvements up to 2/3 years.

Some of it is 100% new neural pathways and some is finding techniques to manage having a crap short term memory and not finding it as upsetting/frustrating that my speech and writing work has errors etc.

It was so good to be home.

I was very lucky and my DH says I am mostly still "me".

Original poster
PurplePineapple1 · 26/02/2023 21:09

Munchyseeds2 · 26/02/2023 15:07

Having re read your post....is he on the discharge pathway because you have pushed or because they think there is nothing to be gained by him staying in?

Both honestly. I have no confidence in the hospital to keep him safe since he fell. I constantly read reams and reams of info from the Stroke Association that say he should be having regular physio and regular occupational therapy and seeing SALT and having psychological assessments. The reality is that he sees the physio twice a week, for 10 minutes per time, if he's lucky and that's it. The rest of the time he is left in bed. Essentially 23 hours a day in bed. I'm amazed he isn't a wreck mentally.

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Original poster
PurplePineapple1 · 26/02/2023 21:13

Thanks RandomMess 💐

I hope I didn't word it insensitively when I said he isn't "him". Hopefully you know what I meant. He is far more 'him' when he is away from the ward. He is clearer, brighter, remembers more, engages more.

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RandomMess · 26/02/2023 21:42

I know exactly what you mean. Hopefully he will be far more "him" in the future.

I think something that is difficult is that you just get knackered and your tolerance for other people and general patience is very limited.

Flowers
Original poster
PurplePineapple1 · 26/02/2023 22:50

He has absolutely no filter at the moment. It's equal parts hilarious and embarrassing.

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