First post

Hi,

My dad had a severe (grade 4 or 5, can't remember) SAH 4 weeks ago today and I guess I'm just looking for some reassuring/inspiring stories about people who have either been in a similar situation or had friends/relatives who were. They couldn't find the source of the bleeding.

He was on ICU for 3.5 weeks as there wasn't a bed on HDU and is now on the neuro ward. He experienced vasospasms and has some ischaemic changes on his scan but the neurologist didn't give us any more detail about severity of this (and we were too afraid to ask). Quick run down of how he was : right sided weakness (virtually no movement), left eye closed, just started appearing to recognise us around 3 weeks, has a tracheostomy although only on minimal humidified oxygen to help with secretions.

Since he moved to the neuro ward he's made some huge improvements: talking (although still has the tracheostomy so can't catch everything he says), smiling, laughing, able to move his left arm a bit, able to start to open his left eye when encouraged to. He does seem a bit "pleasantly puddled", he makes sense but talking about random things. We took my daughter (15 months) in briefly yesterday and I don't think he recognised her which I didn't really expect anyway.

We're all thrilled he's made it this far but obviously have a long road ahead of us. I'm guessing it's normal to be confused at this point? Does memory tend to improve? I know everyone's different (sick of hearing that from medical staff!) but it'd be good to hear from people with similar experiences. Thanks in advance.

8 Replies

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  • Hi and welcome.

    I don't have experience of specifically SAH - mine was (is still ?) a blood clot on the brain in Oct 2014 ( was partly still there when I was scanned Oct 2015) but I know lots of others on here have more experience. All I would say at mo is that it is REALLY early days in terms on BI and it is all a personal "journey" ....

    Be kind to him and yourselves as a family - maybe take some music/ audio books in - or download fav tv / footy match for him to watch - even if only 10 mins at a time ...

    Headway would also be a place to get advice for yourselves .

    Hope things continue to improve x

  • ps - vaguely remember doing some writing rather than talking as a way of communicating - might be worth taking a pen and paper another visit ? ( also useful for him to look back at and / or if he suddenly remembered something he wanted to say when you weren't there ...

  • Don't worry for the moment, Katie, about your dad talking nonsense ; it's what people do after brain injury of any type.

    I had an SAH in Dec 2011 and, though I remember nothing of the first month, I apparently thought my daughter was a neighbour & kept saying how kind it was of her to visit me.

    It really is frustrating (apparently) hearing the doctors repeating "Wait & See" but that's how it is with the brain, unlike other organs which react and heal in a more predictable way.

    It had been a dreadful shock for my son & daughter and a long stressful wait before they could stop holding their breath.

    My son was videoing me on his phone one day as I walked back into the ward from the loo. I was horrified, saying I must look a wreck (and was embarrassed that I was limping) but he said that for him it was a precious moment to see me walking................something he thought he might never see again.

    I was home after three months and, although I still suffer some short-term memory loss, balance and fatigue issues, my life is pretty much back to normal. My main problem is difficulty coping with noisy or bright environments and general brain overload.

    We all heal and repair in our own way and at our own pace but the general rule is that it's a slow process which can continue for longer than previously believed ; I'm still seeing improvements after 4+years.

    Hope this helps a little Katie. Your dad has a long way to go in his recovery but it sounds like he's already making good progress.

    Best wishes to you all for better days ahead. xx

  • Thanks for your reply ladies, it is reassuring to hear your stories. I know it's super early days and we're all prepared for him not being home for months. The suggestion about audio books is good, it's hard when you don't feel you can do anything useful. I am going to get in touch with headway too and try to encourage my mum to. I'm trying to support her at the same time as looking after my toddler and working, it's all a bit hectic.

    My mum in particular is struggling with the step down from ICU as he's gone from one to one nursing to a normal ward, think it's 1 to 6 or 8 patients. shes a nurse herself so knows the pressures of busy wards but she could just ring up on ICU and get a full handover straight away, whereas no one answered the phone when she tried to call last night. She knows it'll take time to get to know them all and trust them but it's making her anxious in the meantime. I think once he starts seeing people like physio, OT, speech therapist regularly, she'll feel like there's some direction. It didn't help that he spent his first few nights on the ward at a weekend where nothing much happens.

    Cat that must have been amazing for your son to see you walk again, I'm not sure whether that's on the cards for my dad or not, only time will tell. But yes, he has made some great progress so far, at one point we didn't know whether he'd even wake up so for him to be talking and smiling, it's brilliant.

    It really helps being able to talk to people who have been through it. For those who've been to the headway groups, how do they work?

  • Ps, he's right handed and that's the weak side (albeit it's starting to move though) so writing isn't going to be possible at the moment. I know speech therapists can suggest all sorts of different ways of communicating though so will see what they say. He might have to learn to write with his left hand eventually!!

  • keyboard or text perhaps ..... ? anything you can think of that might give him an opportunity to communicate .... cards with some pre written words on / different "faces" ? ... that he could point to ?

    Look after yourselves too :-)

  • Hi Katie

    I had a sah and was in intensive care for 4 weeks and hospital for 8 weeks and only know/remember the last three days before I came home. I had a lot of complications too. My family tell me that I was talking at times but very confused and muddled.

    I really wasn't making much sense a lot of the time!

    Gradually things have improved. When I first came home my short term memory was very poor. I would take my tablets and then five minutes later be asking for them again, with absolutely no recollection that I'd had them.

    Be hopeful Katie, it's amazing what can be achieved. I would say though that it can take quite a long time, the recovery can be quite slow.

    I would contact Headway. They have been a great help to me and I see lots of people mention them on this forum.

    I wish you and your dad all the very best, please feel free to message me if you'd like to chat at any time.

    Best wishes

  • Thanks Judith, that's very kind. Glad to hear you made a good recovery. Yes, I do keep meaning to contact them, it's on my to do list! We're having a meeting with the therapy team on the ward next week so it'll be good to hear what their plans are and how they think he's doing.

    Thanks.

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