I have just written an introduction about myself and lost it so here goes again!
My son who is in his forties had a subarachnoid haemorrhage 3 years ago. It was undiagnosed for more than 2 weeks, then he had a second bleed and it was still undiagnosed for a few more days.
Miraculously he made what we considered to be a full recovery. To see him you would never know he had been so seriously ill.
Recently he has seen a neuropsychologist and before even getting the report it has made us both realise that there is some damage. Things we thought were irrelevant were important as were things we felt embarrassing, they too were important. I have begun to look up things on the internet and there are so many things we can relate to. It has been a real eye opener!
I became aware of this community after asking for advice from Headway. My son is separated but has his children regularly, I help him sometimes as it can be a bit overwhelming. He can be childlike with them and have lots of fun but he can also get bad tempered at times if there is too much going on eg TV, talking, noise, children not doing as they're told. This is normal in every household but sometimes things can get blown up out of proportion and a mountain can be made out of a molehill, as the saying says. I wondered if Headway had a factsheet suitable for children aged 9-12 to help them understand why their dad can be moody. Anyway, as a result of that question they made me aware of this forum.
I help my son to organise some things he struggles with, we nearly always end up arguing, I feel he can't be bothered and he feels he can't cope. It is only now that I recognise I 'bombard' him with things but he can only cope with a couple of things at a time.
I have been feeling upset and guilty because it is only now I feel we are beginning to understand and come to terms with what happened. We have argued a lot more and misunderstood each other a lot more too. He has tried to talk to me but I don't think I listened properly or took it on board. I have spoken to him too but I don't think he's understood where I've been coming from.
It has done me good to share on this page. I have been supportive but with no real understanding. Little things have seemed insignificant but they are important to understand. Hopefully now we are more aware we will be more understanding and find solutions to the difficulties we didn't really realise were difficulties (if that makes sense).
One thing we've both learnt is that just because you can work, walk, talk, look after your children, look fine it doesn't mean that everything is fine. It doesn't mean everything is terrible either but it may mean we need to be more understanding, talk and listen more.
Anyway, thanks for reading this, I'm sure I'll learn a lot from reading your posts.
Alice
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Alice5
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Hi Alice and welcome to the forum. It sounds like you've been learning the hard way and doing your best to support your son since his SAH.
My SAH was almost three years ago and I've learned a lot from Headway and received a great deal of reassurance about the many different issues we all share after any type of head injury.
The after effects are so similar whether the injury is caused by haemorrhage, stroke, traumatic injury, tumour or hypoxia. There is much overlapping of after effects such as mobility issues, fatigue, memory loss, anger issues and so much more.
I hope that by reading other's accounts and making enquiries of your own you'll begin to understand how your son's behaviour is typical after brain trauma, and how it can be managed and helped by various means ; whether by loved ones, carers. therapists, he himself, or a combination of these.
So glad you've found us Alice. All best wishes Cat x
PS Forgot to say sorry you lost your post & had to re-type ; this has been a big problem which I've raised 2 or 3 times but to no avail. I've got into the habit of copy & pasting as I go along to ensure that It won't be lost if the original post shoots off into cyberspace !
Thanks for your replies. Good advice to copy and paste, I'll do that next time.
I'm keen to learn more about the affects of a brain injury. I think I've been a bit blinkered and maybe didn't want to admit there were some difficulties. Now we both recognise that, we can hopefully move forward and find ways to cope with any issues that arise.
I so understand what you are saying. My husband, aged 60, had his SAH 2 years ago, and although still struggling with his mobility (he also had a stroke as a result) friends and relatives do seem to think he is absolutely fine now, because when they see him or talk to him he seems like the old friend they knew before. But at home, when it is just the two of us, life is still very hard. Luckily there is no aggression, but his moods are up and down constantly. He is very emotional, and cries easily, especially when I am trying to encourage him to do more for himself, which he considers to be bullying!
Life as a full time carer is a very difficult thing, and our lives have changed just as much as the person with the disability, but many people don't understand this, and it becomes very frustrating at times. Headway have been our saviour in many ways, as my husband attends their Day Centre twice a week, which is fantastic for him, and gives me my 2 "days off" which are invaluable.
You are certainly not alone, there are many of us out here who totally understand how difficult every day can be.
Good luck, and I hope you can find some help for the children too.
Thankyou so much for replying. My son lives on his own but he is local and I see him regularly. I see him quite a lot especially when he has his children.
He manages everything, packed lunches, shopping, getting them to 2 different schools but he finds it exhausting at times. He writes lists and puts them by the door to remind him to do things.
It's only now that I realise sometimes I have expected too much of him and 'nagged' him to do things when it is just one thing too many to do. His strategy then had been to say he'd got something to do and leave
I'm more aware now and understand better.
I don't consider myself to be a carer but I do help him with quite a lot of things and it has affected me too. I want a quiet life but there are times when things get misunderstood and we argue, neither seeming to understand the other. He takes things personally and can be hurtful in what he says, he says what he thinks at the time. Our arguments never last long but we do argue more than before. I've said on one other post that he can be like a dog with a bone.
It has already been useful reading your replies and it's good to be able to share.
Thanks so much everyone who's replied.
Time to get up now x
Hi Alice
My husband had his sub arachnoid haemorrhage 2 years ago & also was not diagnosed for 10 days. He has also made a miraculous recovery but has very similar difficulties to your son. He has not returned to the level of work he was doing before his SAH but is doing some & has found a volunteering opportunity at the local tourist information 1 morning a month which he enjoys.
We found his neuro psychologist has been great at explaining the difficulties he experiences & has written a supporting letter which explains what his difficulties are - we often use this to prove that while he looks fine & can convince anyone for half an hour that he has no difficulties, in fact he has real difficulties.
I have read loads of books, Headway publications & really made myself aware of the difficulties - we have found some solutions that work for him to avoid me having to "nag". absolutely everything is written in our shared computer diary, he now does a lot of that himself immediately. That way he can look it up as often as he wants on his ipad.
Routine has been very important for him & at home he manages brilliantly, cooking our main meal most days. He does the food shopping but as found when the supermarket is quiet & goes then, often more than once a week so its not a huge shop.
Family don't notice the problems - until they come to stay for a few days! And fatigue is a huge problem, but we mainly work with it.
Don't feel guilt about getting frustrated with him, its quite usual & to be expected. Go to the Carers Trust website & find your nearest Carers Centre, they provide support for unpaid family Carers like us & mine have been great.
I have found this forum helpful, especially when you are fed up & feel like the only one in this situation.
Firstly you shouldn't beat yourself up about not being as understanding as you feel you should have been because the brain injury is very hard for those around us to understand especially as the injury cannot be seen so is an invisible disability. Also they way we are can change from moment to moment and day to day so can be very confusing to comprehend because the right response one day won't be the next. The brilliant thing you have done for your son is not to turn your back on him even though the relationship has had it's ups and downs. It is great that you are there to support him to continue to have regular time with his children. I am a single mum of an 8 yr old and I have a frontal brain injury and I know how difficult that can be for me to parent my child and for my child to now understand my confusing emotions. My son is a member of Young Carers/Carer first (the latter name is what they are currently using). Next weekend through Carer's First he is going to the HoneyPot House Charity for a weekend holiday.
I am wondering if Headway made you aware of some publications they sell for children. I didn't get my copies from them as found them elsewhere when I was looking to purchase something to help my son understand but helpful books are:
My Parent Has A Brain Injury .... a guide for Young People by Jo Johnson (this would be helpful for your older grandchild and I have to admit I have read this myself several times as I found it helped me understand what had happened to my brain too!)
My Dad Makes The Best Boats by Jo Johnson (I don't have this one but assume it is similar to the next one I have listed but for children who's dad has a brain injury)
My Mum Makes The Best Cakes by Jo Johnson (my son has this one and it explains how a mums abilities and emotions may be changed but she can still do great things.)
All the above books can be purchased from Headway but you can get My Parent Has a Brain Injury from Amazon and probably you could web search where to get either of the other two as I think I recall getting My Mum Makes The Best Cakes from the author, Consultant Neuropsychologist Jo Johnson, direct.
hy alice your deffinatly in the right place for support and understanding.i don't know where id be without the people on here they have helped me so much over the last year. I too am in my forties and had a subarachnoid haemorrhage the same as your son. mine was last boxing day. I am a single parent of a ten year old. my two elder children have left home. I too have no outward signs of anything wrong but on the inside its so very different. I carnt cope with load noises or too many things happening at once. my head seems to turn into scrambled egg in seconds if things like. the tv is on my sons talking to me about school {important things} then if the phone goes. that's it scrambled egg time. I right post it notes all over the house to remind me of things, even what time to set of for bus to pick my son up. all these things used to really worry me but since finding this place and all the wonderfull people on here I feel so much better.
How do you explain to your child how you are and what you find difficult to cope with?
My grandchildren are very different, one is calm but a worrier, if he feels unwell he worries he may get a haemorrhage like his dad. The other pushes buttons and pushes things to the limits this causes arguments as neither my son or him will give in and small things end up being big things. I try to say pick your battles but he acts spontaneously without thinking of the outcome.
I think it's about strategies to cope and think before you act, not easy for any of us but hard for him.
I think the more aware we are the more we will find ways to cope and understand.
One other small example is when I send him a text, my texts have been too long. He needs things to be brief, clear and to the point. I understand that now, a small thing but an every day thing.
Anyway, that's me waffling on, time for a cuppa now
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