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
I don’t know if you’ve already seen this post, but there are some useful insight from many perspectives in it, so worth a read through the posts some time. Useful links too.
My Mum is 77, but I like to say a young 77 if that makes sense? Very engaged, interested and usually talks to lots of people. She worked in a psychiatric hosp for 17 yrs so is very switched on to medical/ psych - obvs not with herself at this point.
My Dad is 85, but again very active and bright for his age.
I am 51 and my brother 4 yrs older.
My mum was a psychiatric nurse, my daughter wants to go into that too, though she’s not yet decide in what area specifically. When she decided she want go go into psychology, it was with a view to working on the therapy side for the young similar to you. I myself find my whole stroke recovery journey fascinating. I wouldn’t have wished on myself but out of all my siblings, we all agree I’m the best one to cope with it
@nsw72 that is interesting to read as I am a fellow FND sufferer which waa diagnosed in my case around 6 months after my stroke. If they are going to refer her for an assessment then snatch their hands off as I’ve been left to get on with it. Help is pretty non existent where I live & physios wrote me off once I had FND diagnosis.
Have a look at the neurosymptoms.org website if you want to read more about it. There are also Facebook groups FND Hope & FND Action that you could join.
My FND affects my mobility & i have a leg that doesn’t work as it should. I can’t lift my foot off the floor
Hopefully her eye is nothing much & they can put your mind at rest on it.
Thanks for this Ann, I’ve just had a look at the link. She has been referred to neuropsych for a consult, her OT seemed very keen to have her assessed and said she felt significant inroads could be made with therapy. I am so sorry this has not been made available to you.
Mum’s spinal pain has been off the charts today (spinal stenosis), because of it and just not being able to get comfortable it makes her very low, non communicative and still won’t eat. I feel like she has gone significantly backwards in the last few days.
My Dad has gone back up this evening with a hope of speaking to a doctor as I couldn’t get to speak to one earlier.
Thank you again, and everyone for the amazing support and insight you are so willing to share with me, it really is helping to feel not so alone in our journey x
The positive news we’ve received from the doctor today is that they rescanned her this morning and the bleed has reduced. This means that medically she is doing well.
The difficulties she is experiencing relates to her inability to engage - she refuses physio, won’t eat the hospital food, won’t drink much etc.
She is all consumed by her spinal pain, because she isn’t walking her pain is immense, so she isn’t walking… a vicious circle.
She can’t be forced to do physio, eat etc so they are exploring avenues to resolve this, but it looks like it could be a neuro psych issue (basically the software in her brain not talking to the hardware) but in the meantime she is being given pain meds for her spine and we have to just continue taking food in to tempt her and trying to cajole her into being compliant.
I guess as usual for this type of thing positives and negatives…
But I like to think 2 back and 3 forward.
So for this I would say in my humble opinion - not to be confused with advice or actual knowledge:
Back:
Not engaging with the various things you have mentioned
spinal pain and walking
forward:
you are aware and so are the docs and trying to think of ways to help - like the costas and the prawns!
she has some meds to ease the pain
You and your family have a better understanding than you did 48 hours ago…
Now the other bits - not engaging - ok but she did before so is that as someone said to me today a slight regression from the first few days/weeks/whatever?! but maybe say (remember) you liked chatting with those people who were here before - these people are nice too. The nurses and the doctors think you’re a fighter etc.
can’t say much about the vicious circle - leave that to the docs
The early days will be like this - you will get through it
I think in my non-medically trained ignorant opinion that the one to focus on is the not drinking because hydration is a foundational factor in recovery as far as I know (AFAIK)
A point of philosophy: if you see it as two steps forward one step back or some variation on then you’re looking at too granular level of detail for the long term and less granular level would see steady progress .
that point of view is heartwarming rather than the continual perception of taking steps backwards which is depressing .
If you are seeing a heartwarming journey you will radiate that and it will help to become self-fulfilling as a prophecy.
It is hard. You’re doing great, and you need to continue finding the strength because this will be a marathon
Have you found sources of carer support yet for you and your dad?
@nsw72 good to hear the bleed is reducing. Positive progress for you all.
If they can get on top of her pain she may be more inclined to engage in physio, eating, drinking etc. I know if i’m in pain it isn’t conducive for tucking into meals. Add into that hospital food & i’m not surprised she isn’t eating much.
Hopefully if you’re able to continue taking her in more appetising food & drinks this will improve.
Hope she doesn’t have to wait too long to see the neuro psych.
She actually agreed to Physio today! It was hard to watch as she is just so non communicative with them and doesn’t seem to compute what they’re telling her to do - but she is physically able and there is nothing to suggest why she is being non compliant so it’s just about getting her brain engaged.
I think her environment is contributing- she has gone downhill since the 3 ladies her age have gone, she’s now got an elderly gentleman and lady who are very poorly and not awake.
So hard to keep her engaged, she just wants to close her eyes and not speak.
That’s not so say I don’t appreciate this is not her being a wotsit, it’s just so hard to get through to her x
Not yet, we have made a couple of enquiries for stair lifts although the physio said today until she is walking better that would not be an option, it would be a bed downstairs.
We are meeting OT on Monday to discuss where we are - I think she will move to the step down stroke rehab ward soon as she is no longer acute - I’m hoping that will help too as her environment is not great. Then looking at caters etc I guess.
