Stroke Experiences

[PurplePineapple1]

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 :(

My Dad had a stroke and the nurses explained it’s like having a bruise that slowly gets worse before getting better. He ended up in a coma and I was called in and told to expect the worst. He slowly got better but his behaviour was really difficult to deal with - after 4 months in hospital he came home and got back to normal. It was a truly horrible time and I wish you all the best OP 💐

Hi Op. firstly, there is such a great fb group called stroke recovery uk you should join. They are very very helpful, my son had a stroke as he was being born and this group really have tough time a lot, as the carer/support rather than the actual stroke SURVIVER remember that, he is a surviver. Secondly, drs don’t know what your husband will be like, strokes vary so much they just can’t be sure. They’ll do an MRI at some point but they can only compare with other similar cases they can’t say for sure. Your husband MAY make a full recovery he may have disabilities but you only find out from living it, and he is alive and responding to you!!! My son has some disability but he is bossing life, try and think about this as a process and a long road of recovery, you are just at the start and that is an awful place to be.
on a practical note, they sometimes leave it a while to do tests and mri because the brain can ‘calm down’ swelling will reduce and seizures may stabilise they can then get a better picture for you. But no one can look into the future and say what will happen as they really don’t know. Sorry for
long reply, just remember being in your shoes and it is totally devastating but you’ll get through. Look on fb for that group xxx

I know it’s frustrating but he’s doing what he needs to do. His brain has suffered a traumatic injury and is working to heal itself. While you are seeing sleeping you need to picture his brain hard at work on repairs and forging new little paths. That takes a lot of effort and doesn’t need a lot of competing jobs to do.

I felt the same as you with my mom…not a stroke but similar trauma. You need to recalibrate (as I think you know). This is a marathon now to recovery and not a sprint.

Don’t worry there will be a point in his recovery where you’ll get to give him a loving kick in the butt… but now even with the frustration

When he’s ready he’s going to need you to help him regain the things that the stroke has affected. I won’t overload you with some of things that I did that worked with my mom. But feel free to look me up when you get to that point. Or for the stuff that you may have questions about now.

but not now even with the frustration you’re feeling

good lord it’s been a long day

Thank you.

I read this thread every day and every reply helps me so thank you to everyone. I will check out that Facebook group.

The practicalities are starting to creep back I'm and that's frightening. I woke up this morning to a text from my boss saying to ring up today.

@PurplePineapple1 I hope you feel even just a little bit better today.
Has the Salt been able to assess your dh’s swallow yet?
Re practicalities I would expect an occupational therapist will soon become involved in your husbands care as they are the experts on helping people become as independent as possible.
Physios Salt OT Drs and nursing staff would likely have multidisciplinary meetings to outline the best way forward for your dh.
You might find one of the hospital social workers could be helpful regarding possible benefits that could be claimed and potential adaptations to your home if deemed necessary.
Sorry for the essay
Hope today was positive
Sending good vibes x

Hope your husband is doing better today and getting plenty of rest. Same to you, I hope your work isn't pressuring you to return

Ups and downs today. I was allowed to watch the physio. Seeing him hold himself up for a full 6 seconds was incredible. Seeing his upset, anger and embarrassment was not. He winked at me when we were talking. He also asked why to me saying "I've got to ring my big boss tonight". It wasn't a clear why but it was clear enough that there was no question he was saying why!

He has literally just now been put onto the transport ambulance and is leaving the cardiac hospital in Blackpool to be moved to stroke rehab in Preston. I need to go to bed but they've promised to ring me when he lands so I will stay awake until I hear.

Again, thank you, all of you, you're incredible.

I'm watching some weird thing on amazon prime called The Rig and keep shouting (to myself) He Was In Game Of Thrones!

Nongatron he was again too sleepy for SALT today but I'm hopeful that now he's being moved to a stroke ward that he'll be assessed when he's awake. He is free of all tubes, lines, drips etc. He literally has only the feed tube in his nose now. Which he HATES.

That's all positive, he is doing so much better than my DH did after his stroke. I am keeping everything crossed for you and him

@PurplePineapple1 I hope today has been positive and your dh has settled in ok in Preston.
Hopefully he will be getting a lot of physio OT and SALT
It’s very positive news that he’s in a stroke rehab unit.
You’re both doing brilliantly x

Just reading this and rooting for you and for him, OP. Both my maternal grandfather and my mother had massive strokes. Mum had hers at night and wasn't found until the morning, having been lying on the cold stone floor of her cottage. Things looked very bleak. This was 14 years ago and she was 75.

She made a good recovery. She is paralysed down one side, but she is cognitively fine, and her speech is normal. She is very sharp and her memory is better than mine! She lives alone in an extra care flat, with carers popping in 4-6 times a day. She's 90 in a few months!

My grandfather's stroke had the opposite effect. His physical recovery was great, but he lost most of his speech and language. But he lived independently in his own home, doing his own shipping and cooking etc, with great neighbours just keeping an eye on him.

Shopping, not shipping!

It really is fab news that he has moved to the stroke unit - hopefully it will be easier for you to visit?
How old is he OP?

Both hospitals have been fantastic with me (I had a spinal op under neuro in preston)

I'm about 5 minutes from the hospital so if you do need anything just PM me and I can help

He's 58. A strong, fit, active man in his fifties. I'm MUCH younger so that keeps him younger 🤣😏 (I'm 42).

Not a good first experience of the new hospital today. He hadn't seen anyone, not a doctor, not a physio, nobody from SALT. He was essentially falling out of a bed when I arrived as nobody had put up the side of it. Nurses were on strike here today so I can only hope it improves.

I played him some music he likes, we usually go out every Friday and Saturday to watch bands, he was tapping his feet and smiling. He also spoke his first small sentence. Took our daughter (adult) today and he dropped off and so she went to have a vape outside. He woke up and said "where's <hername> gone". There were no staff around for me to tell them that though.

Times like these I wish we had the money for private healthcare. Felt really uneasy leaving him tonight.

Thank you, that's so kind.

I'm in Chorley so buses are pretty easy and direct into hospital.

Once again updating, more for myself, not because I expect any replies.

He has had a very down day today. He can't speak but I know he didn't really want me there today. I know I'm doing it yet can't stop - I'm over compensating for the fact he can't speak by asking a million questions. Are you in pain. Are you hot. Are you cold. I just don't know how else to help him.

None of the SALT team or physio/occupational therapy team work weekends so he has essentially been left to slonk in a bed all weekend. Not sure how that aids recovery.

Based on the experience with my dad, he had some very low days. Some days he wouldn't even look at us, and just lay facing the wall till we left.

Stroke can have emotional and physical consequences, and I think it's to be expected in some ways - although I know how hard it is.

He's still in there and he will still appreciate you being there for him asking questions and supporting him.

I hope you've got some support too. It can be a really long and painful road to navigate ❤️

It's bound to be a rollercoaster - I know I've had similar experiences with my dad. Also find it really hard when conversation is obviously one sided. Could you watch something together to sort of make it a bit more normal?

Have you been in every single day? If you need a day off OP that's ok. You do need to look after yourself too.

I've been every single day. Tomorrow is day 13 since the op/stroke.

I'm finding it hard to keep people away. He's finding visitors overwhelming but nobody is listening to me.

The weekend is always quiet and not a lot happens, I know it's frustrating but he should see some people today.
Recovery is a long game tho for sure

@PurplePineapple1

tell the nursing staff
you have to advocate for him

i had the same issue with my estranged sister barging in and upsetting my mum

@PurplePineapple1 I’m very sorry to read what, your husband, you and your family are going through. I have been there as both a stroke survivor and I am an ex Stroke Support Coordinator at the Stroke Association. How is your husband today, and how are you?

The recovery from Stroke is a journey, no matter how badly the stroke has affected someone, the emotional recovery can sometimes take longer. As has been mentioned upthread, your husband’s brain is busy recovering and finding new pathways, and fatigue is a huge side effect from a stroke. And I hope that now he’s on the stroke unit, he’ll be regularly assessed by the therapy teams to help him with his recovery and believe me, that recovery and our brains can be miraculous. I wasn’t able to swallow for almost three weeks, but with recovery and SALT exercises it came back. That said everybody’s stroke and recovery is different, but what I’m trying to say is that everyday, he will hopefully be recovering a little bit more.

Depending on where you’re located, you may be offered support from the Stroke Association whilst your husband is still an inpatient, if the coordinators do ward visits, if not it may be when he is discharged. Prior to this though, you can call the Stroke Association helpline on 0303 3033 100 or visit stroke.org.uk. There is lots of information available for both stroke survivors and their families/carers. They can be found online or you can ask for information to be posted out to you. There is also an online forum where you may be able to chat with people who are in the same position as you.

Keep chatting on here as you feel up to it and PM me if you have any questions. I might not have the answers, and I don’t work at Stroke Assoc any longer, but as has been mentioned, you need to look after you as well. Reach out for support as and when you need it. ❤️