Hi all,
My younger brother had a haemorrhagic stroke December last year at the age of 40. He arrived at hospital significantly overweight and very hypertensive (BP 240/135). He had a craniotomy to try and reduce the bleed and swelling which were more extensive then initial scans suggested. He spent approximately 2.5 months unconscious experiencing set backs with infections and hypertension. This resulted in additional bleeding and a midline shift. All of this was whilst abroad (to add an additional level of complexity).
He is now conscious (has been for about 6 weeks) and has been in the UK for a little over a month. At time of writing this, he has a tracheostomy fitted, a PEG feeding tube, cannot speak or swallow (even with a speech valve). He can move his right arm through a limited range and move his head left and right, sometimes in response to very basic commands (before he fatigues very quickly), however, more often than not the movement is sporadic.
He is awaiting transfer to the Stroke Recovery Centre (SRC), but this has been delayed due to an infection.
I wanted to ask the group (without holding anyone to what they advise if it doesnāt work out how they say) - Do we need to prepare ourself for him being heavily disabled for life/long-term, what sort of progress can we hope for/expect when he moves to the SRC? As the next battle after that will be where he lives, he doesnāt own a house. mum and dad are disabled and his wife and child are still abroad trying to get visaās.
Thank you in advance for any guidance/help.
Carl
My experience tells me that there is no crystal ball that can predict the outcome of your brotherās predicament.
Equally no professional can say any more than that they will do their best for him.
I could point you to famous folk who continue to have a life but it is sure things will be in a state of uncertainty for some time.
In his favour he had the stroke relatively young which will help with healing and recovery.
My advice is to be prepared to wait, there will be no over-night cure. You will see improvement you think impossible right now, but this is a long journey.
My wife sent me off to hospital sure I would come home again in a box.
As someone still feeling the effects of stroke, three years on, I can assure you I have a life worth living.
The only thing that bothers me is the threat of assisted dying and the worry that some āconcerned personā could make a decision to end my life.
In many ways my life is alien to those living a ānormal lifeā but it is mine and I am most certainly not prepared to give up now.
keep on keepinā on
@CarlO Hi & welcome to the community. So sorry to hear of your brotherās severe stroke. It must have been a very difficult few months for you all.
You will hear it often but it is very early days for your brother yet & there will be a long recovery road ahead for him. No one can predict how quickly or how much he will recover as a lot will depend on him & how determined he is to improve. The physios, medical professionals can do so much but we have to.do the rest with the help of our family, friends & carers. I would say though you need to prepare for the long haul.
I would think he will be in the Stroke Recovery Centre for a while & I would perhaps leave thinking aboutbwhere he will live until you have more of an idea of how heās getting on. He will not be sent anywhere that isnāt safe for him.
Give the Stroke Association helpline 0303 3033 100 a call. They will be able to point you in the direction of places you can go to get help & support for your specific circumstances. Citizens Advice are also a good place to try.
Best wishes to you all & I hope thibgs start improving soon for your brother.
Ann
Thank you for sharing and replying Bobbi, I was expecting similar regarding the ācrystal ballā.
Hi Ann, thank you. It has been difficult, but I imagine many on here have experienced similar or worse.
I feel quite powerless to do much to help beyond engaging with him where I can. Iām pleased to have successfully brought him back to the UK, but hoping it wonāt be too long for the recovery centre.
I will call them, thank you.
Your interaction with him will stimulate and boost him. For some time you will need to be understanding, even trivial responses will make him weary,
I believe the healing process steals most of his energy, there is no way he is slacking or taking it easy. Just getting from day to day requires a great effort.
Congratulate him for getting this far, help him keep his spirits up, watch him slowly, slowly, make small gains and let him know you are with him for each small step.
Best wishes to you and yours.
Itās early days. The setbacks he has had wonāt have helped. But itās too early to assess what recovery he will make. Speak to the people working with him (neurologist and therapists) to get an idea what the brain scans show and what recoverable function he has if he gets the rehabilitation he needs. The NHS will fund his care and therapy at this rehabilitation centre. Beyond that, there are different pathways, but which will depend on what recovery he can make, each with their funding streams.
Iāve had a brain haemorrhage and stroke and am a social worker currently working within the NHS and any help I can give Iām happy to do so. Remain positive and keep hoping. David Hearnden.
Hello Carl,
Welcome to the community which I hope will help you and your brother as you face some challenges over the few weeks, months possibly years.
I note you have had some very good advice and feedback already and from what you yourself have said, you come across as a very capable and knowledgeable person.
Help is available though sometimes it takes a while to get it, but knowing it is available can help ease some of the pressures and if you donāt know you can come on this forum and almost certainly someone will be able to point you in the right direction - there are some incredibly knowledgeable, selfless and supportive forum.
It seems your case may have some added complexities such as accommodation and your brotherās family living abroad and trying to get visas.
Based on my own personal experiences, I would suggest you need to plan for a marathon and build in some flexibility for when things donāt necessarily work out as you might expect. It will not be easy and it will likely put strain on you, your brother and your respective families. Also, your Mum and Dad may also need support. I say that on my personal understanding and belief that it is hard for parents to see their children suffering or in difficulty, and this may be made worse if they feel helpless.
Be strong, stay strong.
Do not always take things at face value.
Be prepared to challenge (experts - they may mean well, but they are not always right)
Look after yourself - you donāt want to burn yourself out.
I wish you and your brother and your families all the best.
Namaste|
David,
Thank you. The advice of it being too early is a reassuring one as without experience of this, we (the family) worry how bleak the prognosis is. At the moment, as he us being kept on a respiratory ward until a bed is available at the SRC, Iāve not been told of any neuro development, assessment or scans he has had since arriving in the UK.
With the therapy side, sense is, they are doing some basics to stop him getting sores and losing too much mobility, but itās not the sort of treatment heād be getting at the SRC, which i get.
I might take you up on the offer of help, as this is out of my skillset and experience, despite my best efforts of research, I know I still have a lot to learn.
Carl
Thank you Manji, some sage advice there and like some of the other wonderful responses, Iāll be feeding this back to my parents too, to try and reassure them a little.
You are right, knowing help is there, even in this group, does make things feel a little more manageable.
Carl
Good morning Carl - Please do.
You will no doubt be told that he doesnāt have much rehabilitation potential to limit your expectations, but without sustained rehab his chances of maximum recovery will be greatly reduced. Itās also important what you as a family can do to encourage and motivate him.
David
Hi @CarlO
Welcome to the community, Iām so sorry to hear of your brothers stroke and the difficulties youāre all facing as a family.
Thereās already been some good advice and support here and I would echo what @Mrs5K has said about calling our helpline, they have a wealth of knowledge and will be able to point you in the right direction in terms of support and what should be happening with your brothers care. They can also just be a listening ear for you, should you just wish to talk.
As other have said, as a family you will need to make sure you are all looking after yourselves too. The coming months may be difficult so make sure you take time to care for yourself too.
Keep talking to your brother and offering encouragement. I hope that his recovery goes well and please come back here if you have any questions, there is a lot of knowledgeable people on here that are always willing to offer support. You can also tag me using the @ symbol and my username should you need anything whilst youāre using the Online Community.
Anna
Hi @CarlO and welcome to the forum and Iām so sorry you have reason to join us 
To be honest, that is the right mindset to have going forward, expect the worst and hope for the best. Your brother is young enough to fight his way back from this, and he has a loving wife and child to fight for too. His child will adapt far quicker than the adults and will be a good motivator, to cheer him on 
Stroke recovery is the longest road trip heās ever had to make, and it will take years with a lot of highs and lows. But he can and will do it with the loving support of all his family.
Heās come this far, and even though you donāt see it, he has already made great inroads into his recovery. The brain has a lot to do with damage repairs as well as maintain full functionality keeping him alive.
Thatās the trouble with stroke, you canāt see the damage in the same way you could see a road crash victim. Because strokes are invisible. There are no visible injuries or bandages to gauge the severity, and the survivor doesnāt have the capacity to communicate them. But he can hear and understand everything that is going on around so be mindful of what you say around him. And thatās just a little from my own experience 
Stay strong and steady and take care of yourself
Lorraine
Thank you Anna, all really helpful.
Thank you Lorraine, some good points that iād reminded our parents off already too.
Iām next with him Thursday, so looking forward to approaching with a more empowered and positive mindset.
And thatās the best mindset to have for him. You stay positive for him because at this point there is hope for so much more.
Lorraine
Iām not sure this is something we should worry about, but I do understand why people might worry.
What is being proposed, and we donāt know how long it might take to become law, is that the person has to make the choice and they have to have the capacity to do so. There is more to it in terms of protecting the individual so that they canāt be bullied or pressured into it. That is not to say it cannot happen.
I believe the concerned person would have to be quite devious and dare I say it evil to succeed.
Just my take in this and I am aware abuses have taken place where this is currently legal.
Keepinā on, keepinā on.
A positive mindset and words of encouragement can go an extremely long way.
I am ever so grateful to my wife and sister who flew over from Oz to be with me in hospital to support and encourage me. My wife was taking care of our two young boys as the wheels were coming off from around us with my business and our life.
My sister sat and offered words of encouragement and reminded me daily that I never give up!! She now continues to call post-stroke and remind me of who I was. You may not realise it but you must not underestimate the value of your and your family support or words for your brother, even if it feels like you are helpless and cannot help in any way. You and your family will be making huge positive impacts in being there for your brother, even if it seems like he may not be appreciative at the time.
Life changes and we all adjust, and adapt in our own ways. This includes to those around us. There is always ālight at the end of the tunnelā. Keep pushing, keep supporting and certainly be patient.
Wishing much strength and determination in his recovery.
J
So, so true 
100%
Thank you for this. At times where Iāve questioned how much Iām helping when I visit, this helps