My husband had a large bleed on the brain — Scope | Disability forum
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My husband had a large bleed on the brain

karen1812
karen1812 Community member Posts: 60 Connected
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi all not sure if this is the right place to join but my husband had a large bleed on the brain which has left him with some disabilities, left leg not able to move very much unable to walk without supervision and walking aids some short term  memory loss blurred vision in one eye and double vision in the other. He has been in hospital since 2nd December 2020 and at present at a rehabilitation centre in Lemington and hopefully being discharged around 8th March.  Brian is 64 years old and was before this happened a very happy go lucky  and hard working man, I am worried how this is going to effect him in the future and how I can help him over come his disabilities. I am hoping that you would be able to give me advice and emotional support during the difficult times we are going to face.
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @Karen1810

    Welcome to the community, hope you're okay.

    I'm sorry to hear about what you and your husband have had to go through, it can't have been an easy few months. How is Brian's recovery going? 

    Regarding how you can best support him, I'd firstly ensure that you are getting all the support you need from the health professionals handling his situation, so that you are both able to get on with life as normally as possible. I'd speak with his GP, specialist or other health professional to see what support can be put in place for his symptoms. 

    It will probably take time for you both to adapt to this new situation, so it's important to be patient and open with one another about how you feel, so that you can work through any issues as a team and live a happy life despite the challenges thrown up by the last couple of months.

    I wish you both well.
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  • karen1812
    karen1812 Community member Posts: 60 Connected
    Thanks for your reply brian is doing OK at present but he is finding it difficult to come to terms with what has happened to him and I have not be able to see him since I got the phone call on the evening of 2nd December we were first told the chances of him coming out of the deep state of unconscious he was in is very slim. But thank god he did 2 weeks later. The rehabilitation centre he is at has a good reputation, but I think once he gets home he might start to recover better, then that might be the start of him feeling anxious not being able to do the things he took for granted before,not remembering things. We do chat on the phone every evening that gives him comfort but not being able to see him face to face is killing us both.


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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    I can understand that @karen1812, it must be so hard to not have been able to see each other for so long. I hope you will be back together soon.

    I'm glad the rehab clinic he is at has a good reputation, that will hopefully strengthen his recovery :) Is there anything you can do to prepare for his arrival home? I'm not sure if you are able to speak with the health professionals handling your husband but they might be able to give you some pointers on how you can make the transition home easier for him.

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  • woodbine
    woodbine Community member Posts: 11,609 Disability Gamechanger
    I have had TIA's and CVA's my first stroke at the age of 37 my second 3 months later at the age of 38, I was left with some left sided weakness some of which has never improved after the second I was left with epilepsy.
    Some people make great progress but it can be a long drawn out affair.
    The link is to the stroke association:
    https://www.stroke.org.uk
    2024 The year of the general election...the time for change is coming 💡

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  • karen1812
    karen1812 Community member Posts: 60 Connected
    Ross thank you for your reply yes the rehabilitation centre give me weekly updates and I had a video meeting last week with his team next meeting will be on first March hopefully to make the transition to home. I have had to take photos of the inside of my flat for the OT to look at and determine what aids he will need.
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  • karen1812
    karen1812 Community member Posts: 60 Connected
    woodbine said:
    I have had TIA's and CVA's my first stroke at the age of 37 my second 3 months later at the age of 38, I was left with some left sided weakness some of which has never improved after the second I was left with epilepsy.
    Some people make great progress but it can be a long drawn out affair.
    The link is to the stroke association:
    https://www.stroke.org.uk
    Hi woodbine so sorry about your TIA your quite young to have had them i hope you are doing well.

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  • karen1812
    karen1812 Community member Posts: 60 Connected
    They haven't said anything about home visits they might be coz of covid
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome 

    It will be a hard adjustment for you both but hopefully having him home and not being apart will help 

    However being back home may make it more obvious what his disabilities are something for you to be mindful of 

    Make sure you get support from his ot team and they can refer for counselling if required I know I was offered it for coming to terms with my disability I didnt take it up but wish i had 

    Good luck to you both 
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @karen1812 and welcome to the community :)

    I'm so sorry to hear what your husband has been through, and the impact of it all on you too.

    My health deteriorated rapidly throughout 2017, and in March 2018 I was admitted to intensive care as I was unconscious. I was placed into an induced coma, and they too, didn't think I would wake up. Still to this day, nobody knows what caused me to become unconscious.

    But when I became more aware of what was happening, I realised I could no longer to anything - it was a terrifying shock. I couldn't do anything myself, I was bedbound - unable to sit up, stand, walk, eat and drink independently, write, type, all sorts. I had to learn it all again.

    The recovery is not easy at all, unfortunately. My recovery is very much ongoing but I have managed to regain most of what I stated above, which I lost.

    My advice is that it is so important that you both receive as much support as you need, whether it be around the home, care needs, mental health, financially, etc. It is a lot to get your head around at first, and it will be overwhelming at times. But the key is to take it one day at a time. 

    Overtime, everything will come together and have a better quality of life.

    I have a saying that has got me through the darkest days of recovery - everything is adaptable. Touchwood, I've not come across anything that isn't adaptable (which i need at present).

    But I would stress that your husband receives some form of talking therapy, might be something to consider asking the rehab he is currently at? Its not easy opening up but it does help to process different things.


    Also, remember to take care of yourself, this has been a distressing time for you and there are many support groups out there, including this lovely community. We will always be here for you.

    Take care, and remember to take it one day at a time :)
    Disability Gamechanger - 2019
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  • karen1812
    karen1812 Community member Posts: 60 Connected
    Thank you so much for your kind words and support I know we will have many herdalls to jump over but the love we have for each other will get us through and hopefully we will get the help and support we need brain does find it hard to open up about his feelings but it is something that he will have to over come if he is to conquer this. I to have to make sure that I get support as I am a carer at present for the elderly I know only to well what can happen if there is a breakdown of care. I will keep you informed 9f how Brian's progress goes. No doubt I will have questions as time goes on.
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Yes, please do keep us updated @karen1812
    :) 
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  • karen1812
    karen1812 Community member Posts: 60 Connected
    Hi all brian is doing quite well at present doing everything his team tells to do lol. He is so looking forward to coming home should be 8th March. He has trouble with his balance and vision but is in good spirits. I am having a welcome home cake made and a few banners put up lol just to give him a lift even the nabiobours are coming out to see him his memory is a little shot but hopefully that will improve once he's home.
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Lovely to hear from you @karen1812, how have you been? That's fantastic to hear about Brian, although i am sorry to hear about his balance, vision and memory. I've learnt that recovery doesn't have a timescale, instead i find it best to set myself goals to aim for.

    For instance, when i was dependent on a hoist, although my ultimate goal was to walk again, i set my focus on a standing aid and being confident when using it. Next goal was a different standing aid which was much easier to transfer with. And so on... One day at a time :)

    Do you feel that you have received sufficient support regarding Brian being discharged and coming home? For example, any mobility/household aids, carers/personal assistants (if he requires them)
    Disability Gamechanger - 2019
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  • karen1812
    karen1812 Community member Posts: 60 Connected
    Hi ami2301 yes the rehabilitation centre has started to put things into place for when brian comes home a grab rail for the bathroom which I purchased its a chrome one  as we have only just had the bathroom done recently . Also a stool for the shower and a frame around the toilet thats all he needs really.  They have kept me well informed about his progress every week what there aims are and what brian has achieved.  They have sorted out out reach coming from the local hospital to show us both how to do things at home. I am a carer so I understand about promoting independence.  Brian and I have chatted about setting goals when he comes out , like walking the length of the hall which is about 24 feet long I live in a flat doing things like washing up drying things to start off with really , we live in a first floor flat so we are going to have to tackle the stairs, he has done 9 stairs at the centre  which has really tired him out. But the first few days 9f coming home I think he needs to readjust to home life after having been in hospital for 14 weeks. Thank you for your kind words I will of course keep updating on brians progress ? 
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    I am so pleased to hear of the support you both have and will be receiving. I spent 9 months in hospital and a rehabilitation centre, and it took me a long time to readjust to being at home. Please keep us updated about Brian's progress, and how you are doing. We'll always be here if you need anything :)
    Disability Gamechanger - 2019
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