My Mum suffered a haemorrhagic stroke on Tuesday. So far it seems like only her short term, post stroke memory is affected. She had a rotten day on Thursday when they had to rescan her, but all stable.
The last two days she has made great progress and then today she is back to being very tired and sleepy. My heart is in my stomach again and I feel like I just can’t cope with the rollercoaster.
My Brother has come home to be with my Dad which is brilliant, I live alone nearby and now feel alone and disjointed as we share the visiting.
Did or does anyone feel this scared this early in? I am sure this is all normal but I’m just looking for validation / help from any of you who have experienced this too. Thanks so much
Hi @nsw72 and welcome to the forum and naturally sorry you’ve had to join us. First of all don’t worry, that is all normal and to be expected and we have all experienced this so you are not alone And keep checking in here because I’m only the first of many who are going to respond here
If you read through the welcome post fellow members have put
together, it will clue you in some on what to expect going forward. But I’m going to open and honest here, it’s going to take, at the very least, a year to recover! And all being well, she will recover! There are also some useful links for face to face support groups and the likes included: Welcome - what we wish we'd heard at the start.
And of course there’s also the Stroke Association’s My Stroke Guide https://mystrokeguide.com/ where you can get help and support. Just click on the blue links.
Currently the brain is working very hard to repair damage done as well as continuing to function. All hard work requires rest and time to recuperate and the brain will require lots of that. So your mum will be frequently taking naps and lack energy. Like with any other major trauma, she requires good nutrition because recovery can be draining on the body’s nutrients, so a good, high protein diet is in order, that’s the best brain food. As she may not feel hungry/struggle to eat, it might benefit her from having the occasional protein/nutrient shake such as Complan which you can get from most chemists and supermarkets. This can also be incorporated into some of her food and will also help boost energy levels.
This has been a shock for you all but it will get better. There are loads of posts on here for you to read full of useful advice and insight, and if looking for anything specific you want to look up just use the search bar But bear one thing in mind when searching through posts, No Two Stroke Are Alike! And the same goes for recovery and rate of recovery.
I wish all you and family the very best and hope for a good steady recovery for your mum.
@nsw72 welcome to the group. sorry you’ve had cause to join us but you’re very welcome.
Your mum will likely have many ups & downs during her recovery. It’s all veey normal. Fatifue is a big issue for many post stroke & it’s likely the reason she is very tired & sleepy again. As daft as it may seem at this very early stage even having a short conversation is exhausting - or it certainly was for me.
Stroke changes lives of loved ones as well as the one who had the stroke so yes it os natural to be worried & scared.
Sounds like you are a very loving & supportive family though which will be a great comfort & help to your mum & dad.
Keep posting any questions you have. There’s usually someone who can help.
Wishing you all all the best.
After the stroke, the tiredness is something you can’t easily imagine. It’s like exhaustion rather than being a bit sleepy. The body is working so hard to try to repair.
The one thing I truly valued in those first few days was seeing those closest too me. There might be times you have to fight a bit for what is best.
Just back from my visit. She is very sleepy, Consultant checked her and said neurologically she is doing well, the fatigue is to be expected especially with this type of bleed.
She def seems a little more confused today, but again, they assure us it’s nothing to worry about at this stage.
She is in the High Dependency Stroke Ward at the Pruh and must say they have been just amazing so far, the staff are so kind and invested in the care of their patients. I know she’s in good hands.
She won’t eat today, just managed to get her to have a bit of Battenberg cake and a coffee which is better than nothing, but the food isn’t appetising. I will try again tomorrow with something from M&S as she has been eating fruit chunks I’ve taken in.
I guess it’s just that my Mum really is my best friend and I can’t imagine my life without her, or to see her suffering in any way. If I could take it all for her I would.
I am usually a pretty robust, pragmatic, practical person, but I feel like I’m living an out of body experience right now.
So glad to have found you all x
She sounds like a fighter!! When I was going through my not wanting to eat stage I got my friends to get me won ton soup but also - kids crusts cut off ham sandwiches from M&S already cut up. Simple - got ‘some’ nutrition and soft and eatable!! Well they were for me!
Does she watch the news or read a paper generally? maybe try reading her some headlines / stories from a publication she likes if you think that would help?! sorry not saying what to do but that helped me! also energy tabs and for some reason strawberries!
You sound like an amazing child and you and her and your family will get through this
Keep on going like a polar bear!
I’m 51, so a big child xx
We are going to take some better food today even though so far she’s not been interested. I’m assuming if she continues to refuse to eat they’ll step in.
She has her iPad with her and I put the rugby on for her yesterday which she half follows (she loves rugby, even at 77!) and then the news. She’s just not with it enough to get the iPad going on her own at the moment.
Thank you for answering, you’re all really helpful x
I found lucozade, orange my favourite, was useful. Glucose takes little effort by the body to turn into energy and it keeps you hydrated.
Thanks for the advice, I’ve just been to M&S and got her a prawn pasta bowl - she’s a prawn addict (!) so hoping this will encourage her to eat today, I’ve also promised her a coffee from Costa and she reminded me before I ended our call to get her a flat white x
Hello welcome to the forum @nsw72
So sorry you’ve had cause to join us.
The welcome post maybe useful to you as emerald identified above. She also suggested complain which may be a good way of getting some nutrition. The fact that you talk about fruit and prawns and pasta suggest that swallowing isn’t an issue which is actually pretty useful because otherwise it’s fed through a tube for several weeks then different thicknesses of milkshake etc till you get the swallowing back and that is an extra annoyance and effort to overcome and risk of choking and pneumonia and etc - so that’s a worry you don’t have to have .
You have to recognise that the effort the body is using, and the calories the brain is burning in recovery may well hover up all mum’s energy. we really do mean all. That should start to improve but time scales for stroke are measured in years and quarters & months not so much in weeks.
You can expect to see steady progress in the weeks ahead. As long as you look over a long enough time frame It will be steady. Which is me trying to tell you to be prepared for setbacks along the route.
you’ll find an awful lot of posts that talk about two steps forwards one step backwards. That one backward feels bigger than the two forward when it happens but in fact two to one is still progress when viewed with more perspective.
You’re going to have to discover a lot that the medical staff won’t tell you. But we will.
All of us here have already travelled that part of the journey. It is full of worry anxiety fear and it’s unlikely that you’ll avoid it or your mum will avoid it - but do recognise everybody here has emerged out of the other side - although it takes some of us longer or less time than others and we still carry the impact with us.
It’s unlikely the stroke will just be a detour on life’s original path, more a new path but no less rewarding with the right outlook. Don’t rush or push for that outlook but don’t forget it is there take everyday as it comes
One last thought for this post. As the carer you will be the most invisible and the most important person both for your mum and your dad. Dad and daughter (you) need to take every source of support available to them/you because only some stroke warriors are the survivors The rest are the carers who possibly carry a heavier burden with less support
@nsw72 I completely lost my appetite after my stroke & it still hasn’t returned. I found eating a little & often is better than bigger meals. The one thing that put me right off eating was being presented a big plate of food. Your mum might not have the same issue & it could just be hospital food…which where I was wasn’t at all nice. Fatigue might also be playing a part in her eating. I find when fatigued I haven’t got the energy to eat. It all sounds ridiculous but it really does happen.
Keep an eye on her eating & push the drs to do something if it doesn’t start to improve. Never assume they’ll act…no one ever said anything to me about the food i didn’t eat.
Sounds like your mum was looking forward to her costa coffee which is really encouraging. Hope she enjoyed her pasta & prawns too.
It’s heartening to read this and know this is all so typical.
She didn’t want her coffee when I got there, she was in great pain - she has a back issue (PMR) so laying in bed or sitting in a chair is making it much worse. Finally seem to have got that on to her notes so she is getting her normal meds for that.
Her best friend visited this afternoon and she sprung to life and apparently chatted happily for a couple of hours, like night and day.
Thank you Simon, such wise words
Great they’ve sorted her pain meds. That probably hasn’t helped her either. Sounds like her friend visiting has done her the world of good. Don’t be surprised if she’s exhausted tomorrow though.
Shame about the coffee. I was a big coffee drinker pre stroke. Nothing nicer than a costa coffee………after my stroke coffee tasted vile for ages (mind you hospital coffee is not quite the same as Costa). I wonder if your mums tastes have changed and that might be affecting her appetite? Worth asking her perhaps.
@nsw72 your mum will have good days and not so good days, her brain is healing and using energy to do so, as such she’ll be fatigued, which is par for the course in the beginning.
Of course your emotions will be all over the place , she’s your mum and this is a scary time for you all to be going through.
Best wishes to you all
Never thought of that, I will ask her tomorrow. She is just so disinterested in food and drink right now. Hoping tomorrow I get to see her looking a little brighter, although I will anticipate her being tired as she was clearly bright for a good few hours this afternoon.
Thank you so much. I am a wreck when I’m not with her. Even then I am a wreck inside but not showing her that. I need to be strong for her.
All food tasted vile to me, even home cooked after I got out of hospital. I lost over 2½stone in the first year post stroke, so that’s something to watch out for. I’d just gone off food altogether but I ate it because I needed to eat, just not as much as used to and couldn’t really afford to lose that weight.
But my taste for food did eventually returns and I’m back up to a happy and healthy weight at 10½ stone. There may also be some weight lose through muscle atrophy which will be partly due to lack of mobility. That’s another good reason to try and get her taking nutrient shakes, basically because they are so much easier to consume when you just can’t face food
So sorry you’re having a hard time.
I Am not as knowledgeable as many of the replies so ill just pass on my best wishes and encourage you to ask questions and come back to the group.
Your parents are lucky to have such a caring family around them.
Hang in there, things do settle after a while, but highs and lows are par for the course especially in the early days
Thank you, just knowing that what she’s experiencing and what we’re seeing is ‘normal’ is a comfort really.
I’m beginning to realise this is a huge life shift for all of us and I’m going to have to just lean into it and not fight it with what coils or should have been.
I don’t like change so this is a big adjustment.
Thanks again to you and everyone reaching out, it helps so much