Hello everyone. I hope you all are well. I am not stroke sufferer but my mother is. On Christmas morning mum suddenly lost her vision as she was talking to her sister on the phone. She asked me grab the phone as something has happened to her. She then fainted. Mum had episodes of faints but this time her blackout was unusual. It seem liked she has gone into deep sleep. Mum was taken to A&E. All her observations were fine but she couldn’t wake up. First CT scan didn’t show stroke. She was left unattended for a number of hours despite our raising concerns. Hours passed, still not been seen by doctors. After over 8 hours of being in the same condition we approacched the doctors and stressed that mum has had a stroke. Still no signs of care or emergency. Doctor eventually came at 7pm said that no abnormalities in CT (which was done at 11.00am). We asked whether she had a stroke. He said that there were no signs of stroke in CT which was done 8 hours ealier, they are waiting for specialist report and that a repeat scan will be done. The second scan was not done until well after 24 hours and after over 30 hours of being in same condition we were told she had a major stroke and wont pull through. The doctor showed complete lack of empathy. Mum was put on NG after 48 hours and her stroke was left untreated for a very long period of time. Whilst in hospital care mum suffered another stroke and we were not informed of the second until the following. We are not sure when she suffered stroke. Every since doctors have writing my mum off depsite her making improvements. Language barrier is also big obstacle as my mum cannot speak English. My mum is a lot more alert but hasn’t regained her ability to open her eyes. Wondering if anyone has had similar experience, who is able to help with unanswered questions
@Jameela welcome to the forum. Really sorry to hear what your mum (& you all too) has been through.
I had vision problems after my stroke but was able to open my eyes so not able to offer any advice re that. What have the drs said re her not opening her eyes? Is it possible she doesn’t want to open them - possibly feels scared of what she might / might not see? Hopefully they get an interpretor for her so she can understand what’s being said.
It’s good that your mum is making improvements & I wish her lots of luck in continuing those improvements.
We take in turns and look after mum and translate for her. Mum can’t have MRI because of metallic valve. It has been stressful time for us. Stroke cannot be predicted and can happen to healthiest but they have completely neglected my mum and her treatment. With regards to opening her eyes she wants to, raises her eyebrows to open them but isn’t able to at the moment. Mum is 30%-50% risk of complications with PEG due to her other health compliactions and on warfarin. I am disgusted with how patients are treated. These poorly people are someone’s parent, child, spouse, sibling, close friend. There is lack of empathy and care. Mum hasn’t fully woken up and they are assessing her swallowing skills??? How can you establish whether someone is able to swallow if they are in sleeping mode? It is beyond me. The nurses and HCAs are doing an amazing job, the problem lies with doctors and decision makers. Most of doctors are probably locum so may not care if they shifting from place to another!
Stroke is a stressful time for everyone…not just the person who has had the stroke. It must be so difficult for you all to see your mum like that.
The NHS is in such a mess at the minute that people aren’t getting the treatment they need or deserve when they need it. Its not the staff on the wards they do their best its just the system.
You could try contacting PALS at the hospital & see if they can find out whats happening for you.
Hope you get the answers you need soon.
Best wishes to you all.
Sorry to hear your story and sorry you’ve a reason to join our community.
Now you’ve arrived - Welcome
You’ve joined a journey we all make at different pace and have different experiences on the road. Generally improvements do happen over time so be hopeful, celebrate the positives and recognise there may be set backs
We generally aren’t medically trained but I believe it’s unusual to not get eye movement back. Even people with locked in syndrome are generally able to move their eyes and I assume from that also open them. your best bet for information is the medical professionals
we’ve all had experiences with individuals who don’t get what it’s like to be the family of a stroke victim.
I suggest you keep plugging away and you’ll find somebody who’ll talk to you.
I also suggest recognising that all of them become medical staff out of a commitment to do good and help people.
Taking a confrontational approach will alienate them - it’s just human nature - they are in a system in crisis, I expect it’s very distressing in a different way. Separate the people from the system
The CAB and other support such as your mp are where to enlist help against the system. The med staff are best kept in a personal relationship. They are pressured not to say something that is the basis for litigating - no wonders so many leave or turn to drink
It’s tough dealing with what’s life changing event.
my wife runs a online ‘carers cafe’ next one this coming Wednesday at 1030 via zoom and Launch Meeting - Zoom