If you learn that You’re all stroke warriors now who have potentially and quite probably a life shift too come to terms with then you’ve learnt something valuable that should make the journey easier, well maybe not easier but it’s removed a source of extra difficulty.
Slow and steady wins the race I believe they say it’s definitely the case here.
You also say losing a little weight won’t hurt but be aware sufficient nutrition to power that recovery and rebuilding is still needed. My taste buds were off for maybe 18 months or 2 years
The next hurdle is likely to be relocation to home and you should expect a dislocation in the service provision, a gap when that transition takes place .
With a little forward vision you can start asking occupational therapists about bathroom shower grips, beds downstairs, kitchen aids etc
How’s your mum doing today? any more fun food requests?!
No wun tun soup yet?!
I make a fresh smoothie every couple of days (I say I but my housemate does the chopping and then I press the button on the blender so truly I did make it myself
I use a 3 mixed punnets of any of blueberries / black berries / raspberris / strawberries and 3 bananas and fat free greek yoghurt and a pint of ice and a splash of milk and that make about 1.5 litres - decant into a water bottle and Bobby is your dad’s twin
I find that for a glass each for me and JP for 2 days! I Just try and have one in the fridge always!
And how are you doing? are you ok. must be so hard for you especially not liking change and this is a massive shock clearly. don’t be afraid to reach out yourself to the medical pros. tell them how you feel and they might be able to help you with something. even if it’s just a nurse’s ear for 10 mins. Always helps me to talk!!
which I clearly do too much! My OT and Psycologist always have to say ‘well sorry we’re 15 mins over and I’ve got to get to my next appointment’
She’s down today. The three other ladies in her ward have all moved - 1 has gone home, one to another hospital and one to a step down ward, so she has all new people which I think has depressed her a bit.
Lots of sighing and looking sad.
She said she wasn’t hungry but ate quite a few prawns, some Spanish omelette and some grapes. And a costa latte.
She had her first shower today, I was going to do it but she’s back to being transported in the standy up thing as she’s not walking with her stick today. She’s just too weak overall.
She seemed quite bright when the nurse and I were sorting her out but she looked exhausted when we got back.
Her right eye looks really tired and closing, like it’s lazy, but I think that’s just tiredness, it’s def worse this afternoon post shower but I’ve left my Dad to just follow up on that. She has no weakness anywhere else.
So I have come home, full of fear again, feeling sick to my stomach.
My brother has to go back to edinburgh tomorrow so it will be back to me and dad.
Oh I’m so sorry to hear about these setbacks. They might seem major to you but try and break them down in the grand scheme of things and I’m sorry to say the journey ahead.
The fact that she had engaged with people is positive and that she now realises she has to get used to new people is also positive.
Shower is positive! Small steps! She sounds like she will make new ward friends in no time!!
She will be exhausted! I’m 10 months in a it took me 2 hours at 3 mins a time to put a picture in a frame only A3 size earlier as my housemate was out and when he got back said why didn’t you wait for me I said - I just wanted it done. I am stubborn. But that was stupid. I should have waited a couple of hours! But I am happy I did it.
Eyes get tired with all those fluorescent lights in hospitals!! Maybe ask her if she wants sunglasses?!
Just buy her a kg of prawns but actually the docs and nurses and other patients might not appreciate that too much!!
Not trying to pressure you at all but please if you need to just call
They always listen and it might help to get it out to someone neutral who won’t judge and will honestly just listen.
I’m sure your bro will keep in touch and be helpful as much as he can and you can get other support. Please do something this evening that will make you smile!! I’m going to watch the champions league! Well watch the table and listen until my housemate / the commentators say something might happen ha ha
I last used them last week!
Please keep staying strong as your mum will need you to be!!
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
@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.
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!
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)
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
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.
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.
@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.
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
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!
but be aware sufficient nutrition to power that recovery and rebuilding is still needed. My taste buds were off for maybe 18 months or 2 years
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! 
’
. 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.
