empowering the severely brain injured and their families via support, understanding and a network of care

Forum Replies Created

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • in reply to: Hypoxic Brain Injury #2123
    nora
    Participant

    Hi Summy

    We seem to be in similar circumstances and it sounds like your husband is doing well and it is only 8 months. My journey began 17 months ago and I have not found it to get any easier

    Is the nursing home letting you have any access now as restictions are slowly lifting

    These times are dreaful and so distressing

    Would you like my email address

    Hugs

    Nora

    in reply to: Hypoxic Brain Injury #2042
    nora
    Participant

    Hi Lynne

    Hope you are well

    Thsnk you for your lovely reply

    This is such a morale booster

    Often I find it so hard to keep going

    Julie

    in reply to: Hypoxic Brain Injury #1997
    nora
    Participant

    Hi Lynne

    Hope you are well

    I am still finding things very difficult to be honest the emotional pain of losing Amber just gets worse and there is very little support if any out there, I just exsist and honestly dont think it will ever change I am broken as a person and feel as though I have lost my personhood and my now best friend is self imposed isolation – Did I mention I lost my mum just months after this happened to Amber

    However as to Amber she has been transferred to Bedhampton Nursing Home from the QA due to Covid 19 and I have mixed feelings about this. I recently sent an email to Headway for help and support and all they did was forward it to Amber’s consultant so now I dont know who I can trust this was a private email with conerns so I feel betrayed

    Amber is not receiving any OT SL or physio due to the recent outbreak and has been referred to the community so hopefully she will get something when all this calms down

    I am going to contact Adult Services and hopefully they will be more helpful than Headway I dont know anything anything

    We want to be able to take Amber home. Prior to this she had finished her masters and was working as a trainee lawyer in the Strand for the government so we are wondering if she is entitled to any money in her own right. As her consultant likes to point out we are not paying for her care which at present is being met by Portsmouth CCG we are paying for clothes etc and would like to fund the physio if they are not going to

    Amber has a long term partner they have been together since she was 16 he has purchased a house with a drive way to take Amber home but we are being told this is unrealistic due to Amber being fed through a peg and also needing night time care – which is the issue However we are preparted to train and learn what to do. Alos instituitional care has not been great QA often had issues delivering care based on Amber’s complicated needs and also at times she was over dosed on medication which also has happened recently at the nursing home – bear in mind she has only been there since the 8th April

    I do not believe there is many places that are suitable for Amber and can manage her care

    I am still waiting for the deputyships and my solicitor is waiting for communication from the courts

    In her self she has made some limited progress although according to her consultant and most of the literature what we see is what we are going to get

    Not sure if she vegative or minimal depends on who you speak with I honestly dont believe there is a clear cut line Amber has global brain damage

    She does respond to certain jokes seems to like being out in her hydroflex chair and appears to enjoy being pampered and listening to music and films

    I would like to be able to have Amber participate in any trails studies etc as I know this is what she would want too but again have not received any help or encouragement

    Thank you for making contact with me

    Warm Regards

    Julie

    in reply to: Persistent Vegetative State #1996
    nora
    Participant

    Dear Tania

    I have just seen your post
    How is your brother now
    My story is very similar to yours as my daughter suffered a cardiac arrest feb 2019 and is severely brain damaged
    You are so right there isnt anything out there in a form of support if you would like to talk with me I will send you my email address

    Julie x

    in reply to: Hypoxic Brain Injury #1269
    nora
    Participant

    Hi Judy

    Thank you so much for getting in touch

    I am not good. Things just seem to get worse not better
    I now have to go back to work and I am finding it very difficult to compartmentalise

    Cant switch off what so ever all I want to do is go to the hospitla and be with my daughter. I get up go to work go to the hospital go home go to bed

    The fall out from this has been massive and has effected my relationships with other family members in particular my youngest daughter

    I cant switch off I cant watch telly films play music I am just a walking zoombie And I cant look at little girls

    Right now to be truthful I am also sorry for myself as well as my daughter and I feel very cheated

    It is like I have lost my identy my values beliefs ideas have all been swept away

    My daughter is now in rehab Phoenix QA under Mike Homer Ward so is having good care However she has made little progress and I am so worried about the time span she will given

    We contacted Mark Edwards and he said this is very early days but it seems like a life time

    Do you know anything about hyperbaric oxgen therapy. Mike wont recommend it as he said it is not proven but he wont stop us from taking my daughter for the treatment

    Warm Regards

    Julie

    in reply to: Hypoxic Brain Injury #1242
    nora
    Participant

    Hi Flo

    Thank you for making contact with me
    I really dont know how to survive this on one understnds unless they have been through it and support is very hard to come by as these things are rare

    I dont find it is getting easier only more difficult and I keep gwtting so much inaccurate information I am now told my daughter isnt following simple commands

    Every day is a living hell

    My daughter isnt there yet she is its a death without a death

    How have you managed to cope for so long

    I find it difficult to work All I do is go to work go to the hospital and then crawl into bed

    I have completely lost my identy if that makes sense

    Warm Regards

    Nora

Viewing 6 posts - 1 through 6 (of 6 total)