Hi I'm new here. My now 19 year old son had a terrible motorbike accident in august 2015, the fortunate thing he only sustained a badly broken thigh bone, meeting him at the hospital not knowing what to expect was the worse feeling ever but finding out he had only broken his leg was a miracle as he was trapped underneath a lorry (yes he was lucky). We left him in hospital that night he was in good spirits talking about him getting ready for his op the next morning to repair his leg with a pin and a few bolts, then it happened a phone call at 3:30am asking us to go back to hospital it was over an hours drive away but why why why he was absolutely fine when we left him.
We arrived went to the ward and there he was with about 10 doctors/nurses rushing around him totally lifeless, he was being put in a coma on full life support (my world came crashing down this was my baby boy and I couldn't control what was happening or help him in anyway). Test were ran, scans were carried out nothing found but his brain had suffered major damage. It was finally determined what had happened the fats from his break had gone into his bloodstream and attacked his brain its called a fat embolism shower it is really rare to happen. We went through so much he couldn't control anything his temp was a constant 41-42 his heart was 137 - 146 it was awful watching him like this and not being able to help, he had pneumonia twice. Month in ICU total of 6 months in BIRU and then another 9 months in a rehabilitation unit closer to home, luckily he remembers his family. He can not do anything for himself, he has to be hoisted, permanent wheelchair user, he came home December 2016 I became his fulltime carer. Its hard so hard because nobody knows how far he will progress, he said mum for the first time this week I broke my heart in secret, we had to move into a bungalow away from family and friends which I'm finding hard to deal with, I gave up fulltime work which I'm just about coping with, because I'm determined my boy wasn't going to spend the rest of his life in a care home. My partner still works and I find it hard to talk to him about my feelings...im lonely, isolated and this sounds really bad I need a break its been over 4 months now of continuous caring, physio and slt sessions, I don't have any other help and trying to get respite organised is a slow process. How do you cope when you feeling low and have so many questions that need answering still but I know no one really knows how far he will come. I miss adult conversation, going out is hard because my son fatigues very quickly and is incontinent and no regular routine at all. I just want what is best for my son but I also need to look after myself but I feel I'm losing me anyone else felt the same and how did you deal with it. I'm hoping I don't sound selfish because I'm not my boy will always come first. Thanks for listening and thanks in advance for any advice given.
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tracy73
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Tracy, I can see you are heartbroken and exhausted and my heart goes out to you. I've never heard of FES but I identify with the shock of the phone call in the early hours and the hospital dash ; it's surreal and terrifying.
But my son recovered, whereas your boy's issues are quite shocking and obviously quite overwhelming for you to cope with, both emotionally and in terms of caring for his needs on a daily basis.
I wonder whether you've contacted the Headway helpline ? They can offer a range of services and also have access to other support organisations which they can refer you to. The tel. no. is 0808 800 2244 (the calls are free and the line is manned during office hours). Please phone them tomorrow before they close for the weekend ; they've helped so many people here.
So sorry Tracey, I too had never heard of the condition, it must have been an awful shock. Great advice from Cat, as I am the BI sufferer with no where near the problems your son has , I cannot help from the careers angle, but please come back for support on here, there are many careers who post.
Headway helpline should be your first port of call.
Much love Janet x
Hi Tracy, Oh how much we all empathise with your predicament. Several people have, I know, told you to contact Headway. I would also suggest that you get in touch with Care for the Carers. They are great at helping and can probably offer you respite help too. It is important that you get some adult conversation as you have to look after yourself as well as your son. Have you got a social worker for him? Ask every one of these people for help to enable you to get out of the house, maybe join WI or a book group - anything to meet other adults.
Lots of luck, and do keep posting on here. You will meet a lovely lot of people and be able to keep chatting to us all. It keeps me sane!!
What a tragic situation you have faced. I am so glad you found this forum.
I am a family member of a person with a TBI but am not a care giver. I can only begin to imagine what the dramatic life changes you have gone through would affect me. You should give yourself a lot of credit for realizing quite early on that you need to operate on two planes: 1 Your devoted care for your son, and 2. Good care of yourself, for the sake of all three of you.
In the short run, all the advice above is wonderful: Get some respite and some activities that feed your sense of self and normalcy.
In the medium term, you may want to get counseling help so that you can comfortably share your feelings with your partner. You do not want the tensions of caring for your son to drive space between the two of you. You may fear adding to your partner's cares, but I am sure that you can find a way to be open with him about how you are feeling without dumping worries or stress on him. Just having your reality sympathetically acknowledged at home will probably be a relief for you.
Thank you all for the great advice and support. I'm waiting on social workers to get in touch it's been 2 months now. I'm looking into moving back closer to my friends and family. I will keep posting on here and talking to you all its so positive on here and your all lovely people to take time to read and reply thank you. Xx
Seek help any which way you can, this forum, social worker, headways etc etc you need to look after you to! I am a wife and carer (no where near as much care as your giving!) to my husband but please please look after you it's taken me 8.5yrs of struggling alone to admit I need help for me and my sanity! Don't be afraid to ask there is lots of help out there as I'm discovering it's just a case of asking for it! All the best x
Ooh wow thats a hard old roll of the dice. It is possible even probable he will continue to improve though by how much and how fast?
I suspect that you need someone to talk to/look after your self. See how close the nearest headway group is? if nothing else speaking to people who do understand.
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