My sister had a stroke last week

Hi, where to start. My sister had an ischemic attack at work last Monday and went into Leicester royal. Two days later she had a full on stroke and was transferred to Nottingham QMC for emergency neurosurgery (craniectomy). She was actually out of ICU four days later, breathing, talking, remembering and understanding. They are now talking about recovery rather than survival, it has affected her left side although she is starting to get a bit of feeling/ movement back already. Of course it is massively stressful for our family. My sister lives with our elderly mum who has dementia (not as her main carer but because my sister is separated from her husband). I live in Sunderland (I travel up and down the country regularly to help support mum), my young adult niece and nephew live in Manchester and my brother is in Birmingham so we are scattered to the four winds. I’ve taken time off work for the foreseeable, I feel like I’m trying to manage everyone else’s anxiety as well as my own and it’s pretty overwhelming. Although it’s a long way off (we’re told she’ll be in hospital/rehab for months rather than weeks) I’m already fretting about her discharge. Having dealt with several hospital discharges and with social services for my own mum and dad,the thought is making me feel ill. I suppose knowing what’s coming down the line and how little help families get is what’s worrying me most (never mind there is still a risk of further bleeds, infection etc etc. Just wanted to share and get off my chest.

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Welcome to the community, Mrsrobot. I’m so sorry to hear about your sister’s situation, but it’s encouraging to know she’s making progress towards recovery.

It sounds like you’re juggling a lot, managing not just your own stress but that of your family too. It’s completely understandable to feel overwhelmed, especially with the logistical challenges and the worries about future complications.

Please know that you’re not alone, if you need to talk, or ask for advice, don’t hesitate to reach out, you can call our helpline at 0303 3033100 or email helpline@stroke.org.uk for more personalised information, support, and resources that may be available to you during this time.

You might also find this page helpful - it’s all about caring for a stroke survivor: Caring for a Stroke Survivor.

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Thanks so much, trying to take a day at a time.

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Hi
Just wondering as this is uncharacteristic

Who is this?

Caio
Simon

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Hi @Mrsrobot

Welcome to the forum although sorry you’ve had reason to join us.

This is a good place to get things off your chest :slight_smile: and also to celebrate when there is some progress :slight_smile:

Story is very similar to some threads on here that you may find reading helpful about the upcoming journey and the anxieties and struggles victories and celebrations that may be appropriate :slight_smile:

You might like to look at

Also if you look at the end of the first post in the thread you will see other threads that may help you.

You may also find the welcome post if you contact and it refers to other sources of help

Caio
Simon

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Hi and a big welcome to this forum.
. So orry to hear of your sister’s stroke. We are a merry band of stroke survivors and their carers and families. There is always someone here to offer advice and information. Speaking to someone who knows exactly what you are going through is priceless, so reach out whenever you need to. Stroke recovery is a long and difficult road, so if you need to have a rant or just need some information, reach out and someone will be there. There are also lots of carers on this site, which will be useful for you.
We also love to hear good news and all about achievements.

I wish your sister well in her recovery.

Regards Sue

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Thanks so much Sue, responses are greatly appreciated.

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@Mrsrobot Hi & welcome to the forum. Sorry to hear of your sisters stroke. It sounds like she is making good early progress although she still has a long way to go.

It’s a very difficult time for you & being so dar away makes it even harder. It sounds like your sister has a long way to go before being discharged so just try & take 1 day at a time right now and worry about the discharge later down the line. I know it’s not that easy but you have so much going on right now you need to prioritise. You also need to look after yourself as the stroke recovery journey isxa long one & you’ll need a your strength later down the line.

Are there any friends or neighbours who could help out at all? Also try talking to your GP surgery as many offer support for carers. Do give the Stroke Association a call too.

Wishing you all the best.

Ann xx

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Thanks Ann, yes I am trying to focus on the here and now but you know how it is when your mind tries to wander 10 steps ahead! I do have supportive friends and my G.P is very good, helped me out a lot when my mum and dad were in and out of hospital during the lockdowns. Xx

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It’s very difficult to just focus on the here & now. I’m like you I want to be prepared for what’s coming down the line…since my stroke though i’ve learnt to be a bit more relaxed about things.

Good to hear you have a good support network. They’ll be really important as time moves forward. xx

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Hi, an update. My sister’s been transferred from Nottingham back to Leicester. I’m struggling a bit emotionally. I’ve taken time off work and have travelled back and forth between the north east where I live and the midlands. I’m currently staying with my mum, she has dementia and it’s quite draining answering the same questions over and over, especially when you don’t really have the answers! It’s awful when she gets upset, I take on her anxiety on top of my own. It’s two weeks after my sister’s craniectomy, she came off her naso feeding tube a couple of days ago (the dreaded fortisip) and is on a SALT plan - with disdain she calls it ‘baby food’. She’s asked to sit in a chair a couple of times, for which she’s hoisted. She has plenty of visitors, friends and family but is obviously quite miserable with the whole situation. There are long months of recovery ahead, sometimes I feel like anything is possible, other times like everything is impossible.

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Hey, if she’s complaining and looking to get out of bed, that’s a very good sign :grinning: It shows she has plenty of fight in her and is fighting back. She’s on the mend but its a slow steady progress, this is a marathon not a race.

Do you share this forum with her at all? There are many positive post on here of peoples journeys. Going from being to told on leaving hospital they wouldn’t recover much more, progress has plateaued, would be bed ridden for life, never walk again. And they are all proving their hospitals wrong!

It might help your sister, spur her on a bit, to see the positive side to her recovery, the ups as well as the downs, forewarned is forearmed. I know she won’t be up to reading very much just yet, so it might be best to just pick out a few of the short and salient posts for her to begin with, even this post.

For the moment, I think its best not to look too far ahead just yet, take it one day at time because your sister still has to go through physio and rehabilitation. It could still be some weeks/months before she is ready to go home and will continue once she is home.

Oh, and a belated welcome to the forum by the way :people_hugging: :blush:

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@Mrsrobot i agree with @EmeraldEyes if your sister is asking to sit in a chair & complaining then she seems to be progressing in the right direction. It’s a long journey this recovery journey , you’ll need olenty of strength to get through. You need to look after yourself too & maybe have a little break from visiting & looking after your mum especially if there are friends & other family who can help. Easier said than done I know but sometimes we have to be a bit selfish so we can deal with the next thing.

Best wishes to you all xx

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Thankyou, good idea to get her on the forum. She’s pretty wiped out at the moment and struggling to wear glasses due to swelling and the surgery scar coming down to her ear, being sore. But yes when she’s able. I know it’s early days, it was just such a shock as she didn’t have obvious risk factors.

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Thanks, my sister-in-law came over today and we did bullet point answers to ‘frequently asked questions’ on A4 for my mum, and also wrote down that my brother would take her to visit the hospital every Wednesday. She processes things better when things are written down, she can keep referring to it. I had a down day yesterday, feeling better today. I’m going home for six days next weekend, I do recognise that I need breaks. My mum does have a daily welfare visit from a carer and has a cleaner and my brother is very good.

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That sounds like a great idea and if your mum finds it helpful even better. Sounds like you have everything under control & some support around you too. I’m really pleased to hear you’re going to have a 6 day break. Hope you manage to rest during that time & that you don’t spend all of it catching up at home.

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Just a quick question if anyone has any experience. When my sister was in Nottingham QMC she began seeing a physiotherapist every day as soon as she came round from post surgery sedation (three days), they would go round the neurology ward every morning. Now she is back in Leicester she appears to getting nothing. Visiting yesterday I asked if she’d had her physio, a nurse quickly turned round and said ‘she’ll get that when she goes to rehab’. I’m aware that that is several weeks away. Does she get nothing in the meantime, is that normal/best practice?

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I would have thought that should be ongoing regardless of where she is. Is Leicester under staffed/under funded I wonder.

I had a physio turn up every day i was in hospital…much to my annoyance at times as I just wanted to rest. Maybe there is a funding issue or is she in somewhere where they just don’t provide that service?

You could try doing some things with her if that’s possible so that she’s not missing out completely.