I am so sorry that you have had such a disappointing, frustrating, and stressful day and a noisy night too! Wish I could make it better. Hang on because the feelings will change. Not saying it will be any easier but thing always feel worse in the wee hours when you can't sleep.
Oh Dillyd, I have been exactly where you are and I promise you it does get better.
You MUST tell either your GP or Dick's consultant how you're feeling. You are so very important as his carer / advocate / partner and there will be many things they can do to support - they can't help if they don't know.
Be brutally honest and make lots of noise. Sadly it is often not until you hit crisis point that they act - but as I said, they can't help if they dont know.
I wish I could do something more meaningful to help; please remember that you have friends here and that you CAN survive this. You are amazing.
MAYBE A NEUROPSYCH COULD HELP. AS A CARER YOU ARE GOING THROUGH THIS TOO SO SOMEONE WITH SPECIFICALLY NEURO EXPERIENCE MAY BE ABLE TO UNDERSTAND BETTER.
IS THERE A LOCAL HEADWAY GROUP YOU CAN GO TO? YOU COULD JUST CONTACT HEADWAY HERE, THEY MAY HAVE SOME ADVICE FOR CARERS.
Thanks all, do feel better this morning, just tired. Miracle, I have managed to get a doctors appointment for tonight, so hopefully can get his meds sorted.
Will really have to consider single beds as that might help.
Dick refuses to go to Headway cos it's full of (his words) a lot of nutcases!!!
The evenings and nights are always the worst, very lonely and isolated.
Thank heavens for this site!!!atleast you can spill out all your feelings, without people judging you.
Friends and family, so matter how good, really don't understand
At Headway we offer a range of services that can provide support to you too, so please do get in touch. Being a carer can be extremely challenging at times and we certainly understand the importance of getting the right support and information.
The dedicated carers section on our website offers a basic guide to the support offered: headway.org.uk/caring.aspx and includes a range of factsheets adapted from our 'Caring for someone with a brain injury' booklet.
Our helpline is also here 9-5, Monday-Friday as a place you can get information about your situation, and just talk things through. They can also send you a copy of the above booklet. Get in touch with them on 0808 800 2244 or helpline@headway.org.uk
As you can see there are many people using this community who are in a similar situation to yourself, and it's very good to hear that you are getting some useful support on here.
Just to say you are not alone, without help it is possible for carers to get into some dark places. Dorsetcharlie is right on - make a noise and take all the help you can get.
Make sure your GP has you marked as a carer so you get flu jabs and extra consideration for those urgent appointments. Consider joining a local carers group for YOUR support and wellbeing.
Local Headway group was quite good when we joined in, those "nutcases", he will find, really can understand and talk at an appropriate level with absolutely none of the judgement you get from "normal" people
Yes, this site is a godsend, if you have a bad day then someone is always around for a "virtual cuppa and chat".
Would really recommend the advice Headway can offer to carers and take whatever support on offer and also any other support services available in your area. Carers are fantastic people and deserve to have a life and emotional stability. We had to do a lot of advocating for our sister following her TBI much of it with health professionals trying to sort rehab and after care which as you have experienced can be very frustrating. I empathise with you it is not easy when you are met with resistance by the one you are trying to help and more difficult when they are in denial about their injuries and feel paranoid and often mistrust you. Headway have been such a support and saved our sanity.
Don't know if you like hugs but if you do then receive a big one from me. Keep strong , you are precious and there are many people who care about you and your situation. You are not alone. xx
Saw a lovely lady doc tonight. Problem is they need a written report from the obnoxious one yesterday before they can change meds as not knowledgable enough about the condition.
Having waited 6 months to see someone ( the appointment was cancelled 3 times),I don't hold out a lot of hope. The lady doc said she wished she could chase it for us, but ison maternity leave at the endofthis week!!!
I'm about as far as it gets from racist but I'm beginning to despair of consultations with medical professionals whose English is incomprehensible.
Most of these practitioners are highly trained, experienced individuals, but the increasing lack of clear communication with patients is frustrating, wasteful and potentially dangerous.
You have my sympathy Dillyd which is a poor substitute for the medical help you & your man need and deserve. xx
Because of my work, I'm exposed to lots of different accents and cultures, when I went with my wife last year for a day OP for her she couldn't understand the surgeon who had admitly quite a thick Nigerian accent. I repeated to her after what he'd said.
And equally I've had the phone thrust at me as the accent has been too plummy for the other staff to understand!
chillyd I know exactly what you mean - live in France and all my hospital/doctor appointments this year are with specialists and/or technicians only a very few of whom speak a little english! I really do know where you are coming from.
I now tell people I DO NOT UNDERSTAND! - try it! The expectation of almost every medical specialist I've seen here and probably in UK for you and Dick just expect you to know what they are saying.
I know -battle on- won't sound very helpful - I take a medical dictionary fr/en with me - I used to try and speak/understand french- but when its health, yes it is stressful and I'm still waiting to start on help with my BI my problems started March last year and are worse since last November. Every other bit of my body and blood has been examined, tested etc etc. After MRI's I've been told the haemorrhage has gone - I know that! Its not that physical side of things - its the balance, vision, confusion and yes defo stress.
Find out email addresses of departments/doctors you see and then email and say you need clarification. I forgot almost everything I've been told by the time I leave the building, same on previous occasions - having it in writing may just help as well - I've only just though of that idea today.
I wish you both well - it may be a long road but it will be worth the perseverance.
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