My son

[Levishaggy]

My 28 year old son has suffered a brain injury which has devastated me and my family was wondering if anyone else is in this situation Sue

[Kolez]

I have just gone through the same im aged 30. Sending you and your son lots of healing and positive thoughts your way. If you have any questions I'll try my best to answer it's helpful for me to - to listen to others experiences

[Levishaggy in reply to Kolez]

Thank you. I'm struggling to come to terms with what's happened it breaks my heart every time I see my son he was so full off life before his accident.

[Alibongo60 in reply to Levishaggy]

Hi Levishaggy, welcome to our site and I am sure you will get lots of help and support off here, there are a couple of wonderful mums with sons , who will know how you feel, I take it it is early days for your sons brain injury, so you do have to give him time to recover the best he can, and you have to take care of you so you are there for him as he needs it, you’ve got a long road ahead, I wish you lots of luck love Alice xx

[Levishaggy in reply to Alibongo60]

Thank you Alice xx

[Nafnaf87]

Good morning Levishaggy

My accident leaving me with Severe Diffuse Axonal Brain Injury happened when I was 32 years old, I'm now 58.

I was married and we had a susuccessful Pub business. 8 months later I wasn't and didn't.

It's a long slow road back but it's entirely possible. You and your son will have to be very patient and just accept life is now a bit different. Look for any help and support you can such as local Headway, Brain Injury Service, etc.

Best wishes

Michael

[Levishaggy in reply to Nafnaf87]

Thank you Michael

[cat3]

Hi Sue. So sorry to hear your news. Many brain injuries can appear devastating in the first weeks or months.

Recovery is mostly a lengthy process. Unlike other organs, the brain needs 'as long as it takes' to readjust to its injury so there are no reliable precedents ; everyone's unique.

Can you tell us how long ago your son's brain injury happened. It'll be useful to have a little more information, such as a timeframe and how your son has fared since his injury.

All best wishes, Cat. x

[Levishaggy in reply to cat3]

Hi cat,it was April it happened in benidorm He was on life support for 4 weeks. He is now in a neurological centre. He is doing well He can't talk but he can now walk he's eating well. I know I'm lucky and I have to get used to getting to know a new Jack. It's getting easier to cope with and I know I have to be patient. X

[cat3 in reply to Levishaggy]

Thanks for that Sue.

Brain injury is life changing for most of us and for our loved ones, and the first months of realization can feel heartbreaking, especially for a mum.

The step by step transition from shock to acceptance is pretty drawn out and a good time for keeping a diary of events, and of progress. Even the 'one step forward - 2 or 3 steps back' eventually forms a pattern and it's only when looking back do we see just have far we've come.

The grieving process from letting go of what once was is incredibly painful, but survival instincts and the business of attending to new needs and priorities somehow gets us through.

It may be too early for acceptance but, with time, there's every chance of better days to come....

Stay in touch m'love and keep us updated on Jack's progress.

Cat. x

[Nanapal]

Hi Levishaggy

I am also the mother of a son with a brain injury (cardiac arrest & subsequent hypoxia brain injury). His injury happened September 20 ( height of Covid)when he was 38 which meant visiting was very restricted. Unfortunately our sons injury has left him severely disabled.

I totally understand the devastation you are feeling - all other aspects of life stop and your son will be the total focus of your thoughts.

I am so pleased to read your son has made good progress and hope he continues with a good recovery.

As already advised keep talking, reassuring, stimulation by music, photos etc, help with personal care such as shaving, moisturising, massage - our son loves a pamper!

Keep asking questions with the medical & therapist teams ( keep notes of everything ). This is your son and you obviously want him to have the best care & at the moment you are his voice.

Look into Johns Campaign & ask if your hospital trust is part of this - you may get help with car parking costs, additional visiting & meals/drinks if needed.

You will always be listened to on here and sometimes that’s all we need.

Take care. Nanapal x

[Nafnaf87 in reply to Nanapal]

Golly Nanapal, I had always assumed your son is a lot younger from your reporting/story telling.

Best wishes with your continuing journey

Michael

[Levishaggy in reply to Nanapal]

Thank you x

[Nanapal]

Thank you for your best wishes Michael.

I think dealing with these life changing incidents is tremendously hard whatever age the individual is or their family. I am 61 so no ‘spring chicken’ but will keep doing my ‘mother hen’ bit as much as I can .

Nanapal x

[Quest39]

My son suffered a sTBI 7 years ago. (GCS 3 , both frontal lobes and the whole right hemisphere affected, with a significant midline shift , resulting in a severe hypoxic brain injury). He was 20 years old at the time of his accident. He was in ICU for 4 weeks too, then in hospital, Neuro wards and Rehab centre, for a further 11 months: we continue to rehabilitate him at home now. It is devastating and life changing for the whole family. Stay strong. There will be ups and downs with progress but the important thing is never to give up: you have to fight for them, be a strong advocate. My son has already defied all professional expectations, recovery wise, he initially had a 5% chance of survival and he still has a long way to go. It's very much a marathon and not a sprint but we still continue to support him with his rehabilitation. Every brain injury and level of recovery is very much down to the individual but the support they have around them can have a massive positive impact to that recovery. It's very hard to compare injuries and gauge what sort of recovery he may achieve. Try not to compare injuries and outcomes, just focus on your son and how you can help him. Patience is key. Recovery cannot be rushed but progress can still occur years down the line. I still struggle with how different my son's life is now, compared to what it was and what it might have been. Going through the grieving process is torturous as a mum and acceptance takes time, personally I still struggle with that. Be strong and take care of yourself too. ( another thing I'm not good at but I've just started making a little time for myself, as a bit of self care, as I know I'll struggle further down the line if I don't) So please look after yourself too. You are the first person I have replied too. I have been reading posts for years, making notes if someone mentions something that might be worth trying for my son. I guess your story resonates with me as your son is also young. But know that you are not alone, there are lots of good people out there who know what you are going through, particularly on this forum. Take Care.x

[Levishaggy in reply to Quest39]

Hi Quest39I'm so glad I joined this forum. I did feel alone but joining has made me realise I'm not.

Thank you x

[Levishaggy in reply to Quest39]

Hi Quest39Hope you don't mind me asking does your son talk? I'm convinced that Jack understands everything I say to him but can't answer he trys his best to try and communicate but the words won't come out. Also he never stops eating as he is type 1 diabetic this is very hard x

[Quest39 in reply to Levishaggy]

Hi. Yes, he talks. Not initially, took a few months after his Tracheostomy was removed but as his brain injury was right side, not left, his language skills were intact. Nowhere near as talkative now, compared to how he was prior to his accident ( his nickname was jibberjabber as he was quite enthusiastic about living life to its fullest, always had plans.) . He's quite the opposite now, but hoping that in time it may improve. His conversation and communication is affected because of the frontal lobe damage, he has significantly impaired executive functioning skills. Initially very disinhibited in his comments, not always appropriate, but that's to be expected with frontal damage. He learned, over the initial 3 years, to keep his inside thoughts to himself. ( lots of coaching from us and his support team).

Food was an issue for him too initially. He wasn't able to regulate his appetite, or know when he was full. Initially he ate really fast and was often sick. Thankfully, that improved too, took about a year and was much easier to deal with when he was home as I tweaked his diet for promoting brain health. I cut out sugary foods/ cakes etc, as he really crashed after eating them: it worsened his brain fog and fatigue. If he has a dessert now, he tends to eat it after his evening meal, so he just sleeps off the effects. He now realises what they do to him and he knows what makes him feel bad and good, so he is not really drawn to the bad stuff anymore. I am still tweaking his diet now, refining it some more. I think he has some hypothalamus damage, as it took a long time to regulate sleep patterns, hunger and temperature regulation. He still feels the cold but it is much improved and now dresses more appropriately for the weather conditions. Hormones will be all over the place in the early days but I did get them checked out a few years ago, to see if they were within normal range.

Not sure what part of the brain is affected with your son, or what type of injury he endured. Don't be afraid to ask questions, you'll soon get a feel for which staff members are the best to approach and ask the things you are concerned with. Not sure if this helps but this is how it was for my son . Take care.x

[Levishaggy in reply to Quest39]

Hi its so good to talk to someone who knows what I am going through, it's so very hard to take. We were at his side in benidorm for 9 weeks obviously there was a language barrier with the hospital staff so we were so relieved to get him home. When he was in hospital he was very aggressive towards me but since he's been moved to neurological unit he seems much happier. They all say he is doing really well. I know I have to be patient and I have started seeing little improvements. X