Feeling frustrated and emotional !!

Hi lovely people I'm hoping for some inspiration and advice on how to help my friend. .My lovely friend of many year's suffered what I assume to be a catastrophic stroke on the 22nd of Dec last year. ..she was found collapsed and unconscious we know now that it was around 16hrs before she got to the hospital. ..3 hospitals later we eventually got to sheff Hallamshire where the doctors painted a very grim picture. .they put G in an induced coma. .her brain was swollen. .she'd suffered a massive bleed or clot on it. ..and they said that in the event G survived which was unlikely she would have severe brain damage. .I sat with her Xmas day. ..just talking. .crying. .laughing. .I felt her squeeze my hand. .it was like the medical staff didn't believe me when I told them. ..6 days later G is awake and on the stroke ward. .unable to move her right side. .unable to speak but her eye's tells me she's very much aware of what's happening around her and she is definitely not in a vegetative state. ..2 week's before G,'s 52nd birthday in Feb she's moved to our local hospitals stroke unit. .still paralysed on her right but now saying No. .to everything. .I'd say fancy a coffee G and the reply would be No but she's nodding her head. .she's understanding everything you say and getting frustrated that all her words come out as No. .G,'s birthday and I have bought her a portable CD player and some Robbie Cd''s. ..when Angels comes on G bursts into song and sings it perfectly start to finish. .her 2 daughters and I are gobsmacked. .the nurse explains that this is from memory and requires no thought process. .it's definitely hard to get your head around. .after a few weeks G is looking very well. .she's now got 4 words. .No...Yes. ..Never and Nice which come out randomly. .this is where I'm utterly frustrated. .around 6 week's ago G was moved to a local care home. ..she's got a pokey little room. .and a TV lounge basically. ..the place stinks and the staff although friendly seem more occupied with discussing their private lives with each other. .there's a lady shouting nurse almost 24/7. .there's another lady wailing. .and a fella shouting constantly. .surely this cannot be right. .this lady has improved so much since that awful Xmas day. .but now it seems because she doesn't actually need medical attention that this is her lot. .I was hoping her condition would keep improving but with little stimuli no pysio I don't see how this place is conducive with healing and rehabilitation. .1 of the carers told me that it is unlikely that G would improve any more than she already has given that it has been 6 months and I was shocked as I thought she may walk again and talk again at some stage I thought you can improve over year's. ..this post is just a rant really but I would welcome any suggestions that I can do to help G in her recovery and if anyone else suffered such a debilitating stroke but have regained some movement and speech. ..how long did it take. .??.I would love to hear your experience. ...thank you cazzie xxx 😘

11 Replies

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  • Short reply for now, sorry, busy....

    Worth contacting local headway charity for advice. There's also a headway section on here.

  • Thanks I will contact them. X😊

  • The "accepted" medical wisdom is that stroke victims cease to be worth spending more than six months on because we tend not to make "major" improvements after that time. I tend to agree, but with large reservations. I've continued to make improvements and I'm 9 months in, 58 years old (oops, 59 yesterday), just started driving again, need to exercise more (who doesn't) and it's small things that make the difference now. They will always continue to do so.

    For additional motivation look for Andrew Marr bbc.co.uk/news/entertainmen...

  • Thanks I need all the inspiration I can get. .lol...good luck and hope your health continues to improve x😊

  • Hi Cazzie; you're a great friend. The Royal College of Physicians have produced Stroke Guidelines for patients and carers and that can be downloaded at strokeaudit.org/Guideline/P... Have you contacted the Stroke Association for advice? It sounds as though your friend's brain has already rewired - neuroplasticity - around some of the areas affected by the stroke. Without giving false hope, a more stimulating environment may help. I was on a ward with some dementia patients for eleven days and that was not a good experience. I've also experienced reverse actions after a stroke - going out the front door when I wanted to go into the rear garden - and not knowing where the bathroom is in our small bungalow. It's taken me about 10 months to get back to almost normal apart from my eyesight which is permanently affected. The NHS is a great institution but sometimes you have to push to get support and answers. I didn't have any post-stroke support so I contacted my Consultant Neurologist for advice. I wish you and your friend well and maybe you would like to come back and chat.

    John

  • Thanks. ..downloading right now. ..I'm on a mission! !!! Lol x😊

  • Go girl !!

  • It may be that you could help her access some independent advocacy support to help her battle for some treatment to support further recovery. If you google it you will get detail for the advocacy hub. Does she have any next of kin you could join forces with?

  • Yes she has a wonderful supportive family but they are dotted around the country and it's hard contacting them at time's. .they all visit pretty regular though so we should get our heads together and come up with a game plan. .Thank you x😊

  • Sorry for the late reply. ..I've been that stressed out my crohn's decided to have a little flare up. ..🙄...thankfully caught in time and now pretty settled. ..Thanks for all your advice and support. .groups like these are truly amazing xxx 😊😘

  • Don't forget to take care of yourself!