Thank you for all your kind words and advice.
Believe it or not I am actually a trained counsellor for a mental health charity, just trying to take my own good advice right now.
I’m headed back up to the hospital shortly so hoping she’s had a good sleep
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@nsw72 just remember this is a massive adjustment for you all & it’ll take time.
Every activity your mum does will be exhausting - showering, talking, eating etc. I still find showering exhausting 20 months on. When I was in hospital a 1 sentence conversation with the lady in the next bed made me very ill & they had to fet the dr to me. I’d never have believed it if i hadn’t experienced it myself.
Good to hear she’s eaten & drunk today.
Hope you have a good visit tonight.
Take care.
Ann xx
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I’ve eaten but I wish I was drunk!! 
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She was sleeping heavily so my Dad and Brother came home and we left her to sleep.
Hoping she is feeling brighter tomorrow x
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Even counsellor need regular counselling you know that don’t you?
And ‘Here For You’ service is for the carers too you know Weekly volunteer calls - Here For You | Stroke Association So take advantage for the sake of your mental wellbeing and give them a call
Or join @SimonInEdinburgh’s Zoom Cafe on Thursday and talk with member from forum.
Do you remember the heat exhaustion we all experience during heatwave here? Well if you double that feeling them may quadruple it, that’s how exhausted your mum will have felt just after her shower. In the beginning it’s very short burst of energy followed by long bouts of exhaustion and that is all natural and to be expected. The sooner you can come to terms with and accept this pattern of bouts of energy and exhaustion, the sooner you will slow this roller coaster ride of emotional highs and lows in yourself, it must be exhausting for you too. This will take a lot out of you…if you let…relax!
When I read posts like yours I thank crunchy for the lockdowns when I was in hospital and my family couldn’t visit. Phone calls from the nurses station was all the updates my hubby got and I’m sure they were very positive and reassuring about me 
I’m glad he never saw what you see in your mum. Be warned though, inside you have a perfectly “normal” mum, it can be like being trapped inside a glass box, she take in everything around her she just can’t get much out…just yet!
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Hi
I have to echo the advice others have given you.
After nearly 3 years a 10-minute shower needs a 20 minutes sit down. Slow down in your concern, step back to observe yourself and learn the patterns that will probably run for the future so that to reserve your energies for where they’re needed 
At this stage number none of the challenges of long-term emotions, acceptance (grieving for what have gone), in order to have space for all the new joy in the future has arrived and you’ll need energy for that. This is a long haul journey that involves the whole family and friends and folk probably need help adjusting and that includes you - but you will have all their adjustments in your thoughts as well. Prepare to be stronger
You’re welcome to join the one of my zoom cafes details here tap on the blue link. This post is slightly out of date because my wife isn’t running carer cafes regularly but she is very happy to run one anytime anybody needs one - the opportunity is there if you - or anyone else reading this - wish to reach out take it? Just @ me or pm/DM/'chat 
’
She is actually doing Here For You induction next week and I have a new Here For You ‘beneficiary’ starting today for his 8-week session of calls. I must admit I’ve never managed to complete the call in half an hour I always end up listening for 45 to 75 minutes :-). They are a good way to get a little hand holding. There are a few hundred volunteers you normally get a the 1st call within 10 days or a couple of weeks
On the counselling side:
I recently had a bit of a wobble feeling funny and I spoke to a nurse counsellor on the phone from my local stroke charity and I said to her it’s so funny that what you’re telling me because yesterday I was saying exactly the same thing to somebody who was feeling anxious. My message is ‘being a counsellor isn’t quite the same thing as needing counselling’.
So while you may have better insight on behalf of other people recognise that other people will have better insight on your behalf - sometimes we need to hear things rather than say them :-). I normally say that as carers you need to take all and as much support you can get wherever you can find it .
@EmeraldEyes I too was on the ward during lockdown. My wife was allowed half an hour every other day. And we used Facebook messenger and Zoom but like you I was glad of the extra bit of space when I didn’t have her other visitor and didn’t have to put on a brave face because that was using ‘spoons’ that weren’t really available
@KGB You’re 2 hours with a picture frame will pay off in the future when some other job like cleaning your teeth will only take 90 minutes and then some other job like cleaning the sink will only take 45 minutes until eventually framing a picture will only take 20 minutes (and you’ll only drop the tools at six times instead of 12)
Ciao
Simon
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Such great advice, thank you.
It would almost feel easier if we couldn’t visit for as long as we can. It makes sense that over a 6 Hr period she is going to have some times where she’s exhausted and doesn’t want to engage, just I seem to be the one that happens to, but as long as she is brighter at some point that’s okay.
I do need to slow the rollercoaster down, you’re so right. The posts I am reading from you guys is helping.
I guess I’m not yet used to my life being flipped upside down, I’m self employed to can’t work right now (I’m a driving instructor) as I just don’t have the concentration. My day is just revolving round Mum (& Dad).
I’m going to check the links out as I am sure I’d link from the the chats
Thanks again for holding my hand in this, you’re all amazing x
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Thanks Simon
it’s an irony that I am a MH counsellor, it’s not a benefit at this point! My area is with young people in MH crisis so I don’t profess to have a clue where I am with this situation.
I’ll try and join the chat tomorrow, thank you.
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You will be very welcome 
Tomorrow or to anytime in the future
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Hi @nsw72, I don’t get on here to post very often but saw your message and wanted to say a quick Hi. My Mum had an Ischaemic stroke nearly three and a half years ago. She has left side weakness and other post stroke issues such as fatigue and chronic anxiety, and my Sister and I are her full time carers.
As someone who has been in a similar position as you - I can say that whatever / however you are feeling at the moment is completely normal. A stroke comes out of nowhere and turns life completely upside down for everyone. All you can do is go day by day, seeing what it holds and responding as necessary. Don’t think too far forward, and as everyone has said - recovery is a marathon, not a sprint. It’s natural to feel scared, powerless, sad, angry and wonder how you will cope with what is to come. The answer is you will - it just happens.
There are good days, bad days and everything in between. I would suggest finding out as much as you can about the severity of your Mum’s stroke, the potential for physio / rehab and what her likely recovery will be. Ask lots of questions and follow up anything you’re not certain of. Information and more importantly - understanding what it means is key, as it will allow you to help her in the best way.
I’d suggest keeping a journal for yourself (somewhere you can vent and put your feelings down) and a diary for Mum so you can see progress when it comes.
Which it will - but it will take time, patience and probably the odd swear word here and there. From both of you !
You will find lots of good advice, comfort and understanding on this forum. You’re not alone - you can get through it.
Wishing you all the best,
Karen
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@nsw72 Hi. Just a small crumb that might help. I’m 67 now but on my 10th birthday my Dad took a massive stroke. We were sitting at the table having a wee party. 
. Dad complained of a headache and that was that, for many months. What I was eating at the time is as fresh in my mind now as it was 56 years ago. Mincemeat Tart and custard 
. Dad wasn’t well enough to be moved from home for a few days, to hospital. I desperately wanted to see him but Mum wouldn’t allow it. When I thought the coast was clear, I sneaked in to his bedroom. Mum unknown to me was there. I got shouted at to get out. She meant well and was trying to protect me but it was the opposite. To this day I still feel the pain and worry. Dad recovered to go back to work after many months with some disability. I can see myself in some of what you are experiencing. Hope it’s off help to know others have been through similar emotional times. Kind regards, Ian.
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In those early days after my stroke (nearly 3yrs ago now) I spent an awful lot of time just sitting and doing absolutely nothing…in between rehab exercises both physical and mental. Sometimes I would sleep, other times I would just sit and stare off into oblivion…both in hospital and when I came home. Sometimes I’d tv and then just turn off after 15mins and just be! I had my perky, lively moments and then suddenly I’d be quiet. My hubby would be in the middle of telling me something, maybe about work, or I’d be in the middle of performing a task, and I’d have to just shut down. My brain had basically shut down to rest or process or whatever. It had taken overall control of me and it brooked no argument. I had to do what my brain wanted me to do, not what I wanted to do, she was in charge now. That’s how I always looked at it anyway 
I couldn’t communicate in those early days either orally or in writing and I still have a touch of aphasia. But between us my family soon figured out our way around communication, which help them to not feel so darn guilty for not being able to do anything for me. Truth was I didn’t need anything and when I did I’d signal for it.
I’m only telling you all this to give you an idea of what you can expect as the days and months go on. So don’t feel “dismissed” or unappreciated if your does anything like that. It’s just her brain in charge and she can’t argue with it
Your skill in MH is going to be very much an asset to your mum in the months to come. So don’t ever imagine you are useless. My daughter is studying psychology and she has been such blessing to have around. She’s been able to tell me all that’s going on my head and so reassuring that what is happening is perfectly normal, understandable or to be expected throughout the various stages of my recovery. It’s been good for her too in her studies 
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That must give you a perspective not available to 99% of us!
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I hope to meet you tomorrow!
Please tell your mum that I’m having ITSU prawn gyoza for supper tonight and I’m a bit of a prawn nut too!
Not that easy to get seal meat in the UK…
K
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Et voila!!
I really do like prawns!!
Thanks JP - nailed them this time! (I put the chopsticks out so really I did it )
Stay cool
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I have indeed been keeping a journal so I can remember what happens each day and to get it all out of my head. I am sure it will be an interesting read one day!
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So today we have had two things…
- Her right eye is looking lazy and dilated. She says she can see okay. It was a bit like this yesterday but the doc checked it and it seemed to go back to normal. Same again today so another doc has looked at it and will follow up tomorrow. They didn’t seem overly concerned. All her obs are good.
- I had a long chat with her OT today - Mum hasn’t been able to walk using the stick for two days which she had been. She has spinal stenosis which radiates into her leg plus PMR so she does have mobility issues. But the OT noticed there are some inconsistencies- she leans to one side in her chair but to the opposite when stood up. This amongst other things leads her to believe she may have FND. her bleed has also affected her Corona Radiata and there is some evidence that those with PMR are more susceptible to FND.
She has emailed Psych for an assessment and if it is FND then she will have psych therapies. This may mean a longer rehab before she’s home but I’d rather that than sending her home without the right treatment.
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I only use Dingbats Arctic notebooks and I have to put extra stickers on them because I am mad. They cost approx £20 each and I go through them like a vindaloo through JP a couple of weeks ago 
I am now on number 4 in 10 months and have one left unopened! Discount them soon please Jeff B.
But I really do recommend them - just for my mental health I write in big capital letters and it helps me. I’m just so grateful I can write something!!
eg (sorry for profanity)
And also planners - I have so so many appointments that I can’t cope with phone / tablet / laptop stuff so I have 1 a4 page per week polar bear (of course) planners
I also think they will also be a good read one day for someone!!!
Stay cool
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Sounds like brilliant progress at least in terms of understanding a bit more and getting a bit more info - can’t pretend to know what all of those things are but all I will say is I believe in your mum!!!
xx
Stay cool
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How old is your mum, you never said, because her age might be a determinant that limits functional recovery from her stroke as well as her general health condition prior. I won’t lie to you, stroke recovery is a long slow climb, we are talking years as opposed to weeks or months
It’s only been a week and the brain has a lot of work to do it right again as best it can. It takes 6mths for the brain to heal and recover and it will be two steps forward and step back all the way. It can seem very frustrating and even worrying at times but that’s the way it is.
And there will be certain things you’ll to have in place when she does come home but don’t let her leave hospital or rehab without any of this in place and a full home care plan come the day
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