Hi all, looking to speak to survivors of stroke to understand what is happening in my family at the moment. I’ll try and keep it short!
A few weeks ago my mother in law was admitted to hospital, long story but she had been having signs of stroke for over a week and it was not acted upon. In any case after 5 days of hell and waiting, MRI confirmed multiple infarcts. She was discharged and sent home awaiting referral to stroke specialists within 2-3 weeks (don’t get me started on this). Her condition was reasonable, she was speaking and moving with some twitching in her hands and leg but perfectly easy to understand etc, just tired and a little confused as you would expect. Within a week we returned from a trip to find her condition seriously deteriorated. It emerged that once again serious signs were ignored (I believe she had a seizure and her condition was clearly much much worse). She was very vacant, with odd glimpses of being able to speak, clearly uncomfortable, not really able to move well and very emotional. It was like she had aged 30 years in days. We called 111 who called an ambulance. Since then we have been in limbo land. A CT showed nothing and when she finally got to the MRI yesterday after waiting days (AGAIN) she was very agitated and did not comply so will need to be sedated. She is currently only speaking occasionally, mostly sleeping, very vacant, clearly having vision issues, has severe discomfort in her limbs and is suffering with incontinence. Until thr MRI we cannot get her transferred to the specialist stroke unit. So I guess my questions are as follows
Can she understand what’s happened to her? How does it feel to be in this position?
She refuses to discuss any topics about her health (she has always been a bit resistant to discussing difficult topics as is private in this way) so how can we get across to her what the future holds? How she will have rehab for months etc before she can come home presumably.
Was anyone here in such a sorry state and actually recovered to any meaningful extent? At the moment it almost feels as though she is in a semi vegatitve state. It is hard to imagine recovery. However she does have the ability to speak, is just not doing it very much.
Why is she deteriorating so badly and how can we help if she is not getting any rehab?
Is there anything I can send to hospital with my husband to make her feel better? I have sent things I think I would like - a new fluffy dressing gown which she apparently likes, some perfume, some face cream, PJs. Is there anything more practical I should send? That can actually make a difference?
This is all just devastating and I want to try and help. I cannot really see her myself as I have babies and they don’t let them on the ward but her sons and partner are visiting multiple times a day.
How should we speak to her, like we always have or more slowly and simply?
Any advice and experiences really welcome. We are just at the beginning of navigating this awful reality. Thank you.