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 :(

Strokes often lead to swelling on the brain. If this happens, then a VP shunt is inserted to deal with excess fluid. This happened to my DC at birth. Shunts work amazingly well, and my DC leads a totally normal life (so far - they're still very young!) with it, it just needs monitored by neurosurgeons, but loads of people have them absolutely no bother. So sorry you are going through this :( sending strength xxx

How's your husband today? How are you holding up?

I haven't been back to this thread for a while. It's been a hard few days.

Husband is now in the hospital in our town. He was moved last night. His progress remains slow. He has seen a physiotherapist only 3 times and the same for a speech therapist.

His mouthcare had been so neglected and his tongue so damaged that he still hasn't had a swallow assessment in order to have the feed tube removed. He now weighs under 11 stone and is 6 foot 1 so he looks skeletal.

His speech is returning but it is slow and it is difficult to make out what he is saying.

I haven't been able to spend 5 minutes alone with him in the last few weeks because particular visitors just won't give us a second alone. I don't feel like I can speak up without being seen as a cow, yet I feel is it that bizarre that a grown adult needs telling that a husband and wife need time alone. I don't know.

Either way, I now have covid so I can't see him until I'm negative.

Spent most of today crying in a self pitying stupor.

I'm so sorry to hear you have covid and that you've had a rough few days.

In terms of physio, is there any way you can afford any private physio for him? I'm not sure if that's even allowed (along side nhs?), but I cannot stress enough how much of an impact it makes on recovery.

It sounds like it's a really hard place to be with so many visitors. Does you DH even want that?
Do you have an alliance with any staff? I guess not yet, as he's only just moved. But it might be worth sharing how you feel with the sister/nurses involved with his care plan. They can suggest to family members that daily visits are a bit much - which might be able to give you a bit more time together.

I'm so sorry it's so hard. I have been thinking of you. I hope you don't feel too poorly x

Thank you ShirleyValentin3 that is very kind.

I will try to speak to the nurses as soon as I can get in there. I doubt that it will work though. I've felt so despairing about the sutuation that I've been thinking I might as well give up going myself. I've asked DH about this particular visitor and he has said he doesn't want her there everyday but I don't know how I can get that across!

I do know a physio through my job who has said he will work with DH but the hospital say that private physios can't go onto their wards! The helplessness is unbearable. It's 3 weeks on Tuesday since it happened and he has essentially spent those 3 weeks flat on his back in bed. I feel like the window for rehabilitation is closing.

I'm fine in terms of the covid. Just feel coldy and achy. Hoping I haven't already given it to him 😔

Right, you need a couple of days to yourself to get better and regroup

Then you need to change the outlook. Your energy will have such an impact. If you go in there and tell the staff that this visitor isn't wanted by your or your DH, they might well intervene. If you explain if affecting his recovery it might be put on his care plan.

It's no wonder you're feeling like all is lost - but it's still early days. All isn't lost, it's just such a bloody long and depressing road.

I think the few days away from the situation will do you a favour and give you a chance to catch your breath and energy and be there for him.

Have you sought any support from stroke groups for yourself? I'm sorry if I missed this earlier in the thread - but it's SO IMPORTANT. You must be looking after yourself and depending where you live there can be some amazing support out there.

Please keep posting and sharing with us. Keep your spirits up and know that things will get better, but it might be time to start thinking of the practical steps to make it easier for you 💕

My DD is an OT and worked with stroke patients for almost a year, she has seen amazing recoveries, 3 weeks is not long, very good his speech is returning.

See if you can push for stroke rehab if he is suitable asap, down here a bit of a waiting list.

Hope the covid passes quickly

@PurplePineapple1 I have been wondering how you and your dh are. Very sorry to hear it’s so tough atm.

The nursing staff should absolutely support you and your dh in limiting numbers of visitors and numbers of visits . We were always very careful to ensure patients weren’t overwhelmed and exhausted.

Its completely understandable that you feel overwhelmed and disheartened by the situation but please don’t feel all is lost.

Rest and relax as much as you can until you can go back into see dh.

It might be a good idea to request a meeting with his consultant to discuss his treatment . You could clarify concerns about physio and speech and language therapy. You are his best advocate.

As other posters have said it’s still early days. I hope I don’t come across as glib but this really is a marathon not a sprint so prioritise getting better and resting and then go back and talk to the staff.

You might not feel like it but I think you’re doing a great job supporting your husband on a very tough road.

Keep talking we are here to listen and try to support you

Thank you Nongatron and good to hear from you! Hope you are well.

Feeling a bit more positive today. I've always been a mardy bum when I am ill and I was feeling grotty yesterday and let things get on top of me. Feel much better today, although still positive grrrr. Very faint line though so hopefully tomorrow or the day after I will be clear. We think DH had covid over Christmas, we were isolating anyway before the heart OP so didn't test as it was only the two of us. In a way I hope he did have it, as he would have had some antibodies kicking about which will hopefully have protected him from what I caught from the ward!!

My sister has gone to see him today on my behalf with a long list of questions to ask the doctor so at least we should get some answers and some idea of the plan going forward. She is far more...assertive than me and they get on very well too so hopefully it will cheer him up.

Thanks to everyone as well, it does help having this thread. I have already forgotten (or blocked out!) how bad things were at the beginning.

@PurplePineapple1 Very glad to hear you’re feeling more upbeat today although I’m with you re being mardy when sick!

I like the sound of your sister and fingers crossed she gets comprehensive answers which will make you all feel better. A plan usually makes people feel progress has been and will be made.

Do you think your dh would like listening to music and or podcasts? Some of my patients found that listening to interesting stories or uplifting music really lifted their mood. I can’t prove it but I suspect listening lights up areas of the brain which process language and organise information in various parts of memory. A workout for the brain if you like?

Keep posting I and others I’m sure really care about you and your dh even though we’re in the virtual world .

Keep going I think you’re doing great x

Thanks again Nongatron Feeling quite positive now. Sister was sent with a list of questions, plus about 10 of her own, and they answered everything. He will get physio at least 5 times a week, if not 6! Their physios work Saturdays so his only day 'off' will be Sunday, which is great.

His swallow assessment will be this week. This is the one I am desperate for. He wants a cup of tea so badly. Of all the things, that's the one that keeps me up at night. Which sounds ridiculous given everything he is going through. It just sticks in my head and breaks my heart when I remember him asking for a drink and he can't have one.

I have been playing him music that he likes on my phone when I go in. The occupational therapist also today said to bring him some magazines in. He isn't really a magazine reader but when sister asked him if he wanted some he said yes, which is great, so I will get him some taken in asap.

They also told me to bring him in some of his own clothes which I am thrilled about and I know he will feel better out of the awful hospital gowns. Only sort of 'lounge wear' type stuff at this stage but I am convinced that will help him to feel more like him.

I am told that the ward is much better than the previous and the emphasis is really on getting people up and about and rehabilitated. I just cannot wait to see him.

Oh, and we were also told last week that he almost definitely has "hemianopic visual loss". I am told it is one of those things that can either improve, or simply doesn't. He is due another assessment for that this week too.

I am waffling now so will go and do something productive shortly but I took another test about half an hour ago and it was negative so I am really hopeful that tomorrows' is the same and I can go in. I have definitely had it since at least Thursday but put it down to being overtired and stressed as I wasn't feeling ill, just 'rundown'.

Reading about experiences people have had who have recovered after time on ITU, it is often a very confusing time and they are often not aware of time passing as normal. Your husband is full of painkillers and other drugs, as well as having had the stroke, so he is likely to be sleeping a lot of the time, which is good for his healing. He is aware and responds when you are there, but is probably dozing most of the time when you are not, except when the doctors and nurses are attending to him. Please don't torture yourself imagining things that are very likely not happening!

Sorry, didn't read the whole thread and I've missed that things have moved on. Glad to hear that your husband is on the mend!

Don't apologise Couchpotato3

Your lovely kind words are appreciated x

He is a relatively young (and I'm assuming fit man) before this.

I know they will want to work hard with him so he can make the best possible recovery.
Glad you are feeling better

I couldn’t read this and not say anything. I’m sorry for what you are currently experiencing. From what I’ve read it’s so clear how much you adore your husband and if I can tell from just your posts, I guarantee he knows that too, whether you are able to visit him or not. You mentioned the cup of tea and that’s the part of your post that made me choke up. Isn’t it funny how the most ordinary/ mundane things can suddenly become the thing that keeps us up. My dad had a stroke many years ago and I can’t think about fizzy cola bottles without welling up till this day!

It sounds like he is making good progress and I hope he gets all the support he needs soon. I know you may have already, but contacting the Stroke Assoication at this stage can really help you at this time if there’s things you are worried about. They are a great resource for people affected by stroke. I wish from my experience I had more support, so please feel free to reach out if you just want to chat/ rant / cry. My Pms are always open - you don’t have to face this alone. And keep updating we are all here for you.

Please let your body also rest too! covid is a pain and you’re probably exhausted as it is. I know it’s easier said than done but take care of yourself. Thinking of you and your family 💐

I am SO pleased to hear your update! You sound so much more positive and it was lovely to read the things your sister has sorted out.

No doubt his own clothes will help him feel himself, and I can totally relate to a cup of tea! Let's hope the swallow test this week means he can have one. That's something to aim for.

Remember, it is slow steps - but wow - this is all moving really fast moving and must feel like things are going in the right direction ❤️

Fingers crossed for a negative test tomorrow! X

As another poster said it’s a marathon not a sprint - my Dad had a stroke when he was 81, was in a diabetic coma and nearly died. Had feeding tubes and was in an acute hospital for 3 months followed by a month’s rehab in a local hospital.
When he was discharged he was told he wouldn’t be able to go for dog walks unless it was on flat ground, well within a week he was yomping across the fields with me puffing behind him 😆
He had absolutely no memory of the 4 months in hospital and eventually went back to driving and playing golf!

Again, I'm updating more for myself, I am very grateful for every response but I dont expect any.

His speech is almost normal now. Or is it not normal and I just understand him better? Either way we fully talked today.

He was very upset, crying and emotional today. I'm the most emotional person ever and holding it together is really hard but I feel it is important not to wobble in front of him. I make myself tell him that he's a day closer to coming home every day he progresses. Then I break my heart at the bus stop going home.

He's drinking now. It has to have thickener in but he's had his favourite Costa latte today and he's also now on soft food and had sausage and mash for his tea. He said it was awful and gelatinous but that he pushed through because he knows he has to.

He cried and asked me why won't I take him home. Why do I keep leaving him. Never cried so much.

His youngest son visited today and it really cheered him up. He (son) lives a long way away so we don't see him much but he's a great kid and we all had a good laugh and it cheered him up so much 😄

@PurplePineapple1 i was literally just thinking of you and wondering how you were both getting on.

Fantastic news re speech and also managing drinks and soft foods. A lot of patients used to tell me how horrible and gelatinous thickened foods were but I’d say that they’d not be on them forever and to persevere.

Emotions are often very intense and labile. That’s very very common and very understandable. You and your dh have been through the equivalent of an emotional rollercoaster a car crash and a tsunami.

It’s very draining but I always felt it was cathartic for patients and families to express some of the distress and fear it helped people to process and somehow let go. I hope that makes sense

You are a smart and sensitive lady and you know it’s a long road but your dh is doing very well.

So lovely to read you’re chatting to each other and that he had a great visit from his son that must have been a boost

Keep going we are here for you.

Sending you love and strength 💐

Glad to read your update op. He sounds like he's doing brilliantly. ai'm not surprised he's getting emotional, I don't think you need to be stoic in front of him - it's an emotional time and you love each other very much. Tell him you miss him and you can't wait to have him home therefore he needs to rest and eat the awful food to regain his strength!

Another difficult day. Fuck I wish I could sleep. My sleep is so messed up. For years I've been in bed at 9pm, up at 6am, done a 10 hour work day and now I can't sleep until 4am and can't wake up before midday. I feel like a student again but without the hangover and pot noodles.

He walked today. Around the stroke unit with the aid of 2 physios.

His vision is a concern now. He's been referred to the opthalmology people I'm told.

I don't know why I'm having such a bad day. He wants to be at home. It makes me so sad to say I can't take you home. He said when you go I'm all alone.

I have to go back to work or I don't know what we'll do for money. But I can't leave him.

I'm also feeling overwhelmed with knowing visitors are coming this weekend "from afar". I'm going to be expected to entertain and I just cope with getting up, going to the hospital, staying as long as I can, coming home and readying for the next day. Knowing I've got to entertain makes me want to run away.

Bit of a pity rant tonight.