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Newbie, worried, scared, feeling alone - Carers UK Forum

Newbie, worried, scared, feeling alone

Tell us a bit about yourself here.
I really don't know what to say, my name is Shelly, I'm 31 years old, my husband is 38 and we have a son aged 7.
I'll start from the beginning, on the 3rd October 2014 my husband fell down the stairs, ringing 999 and all the emergency team turning up, my husband was put in a coma at home.
With getting to A&E, I was told my husband had an brain tumour and needed surgery straight away, this was life threatening the doctors said he might not pull though the operation.
Getting trough the operation, he was touch and go after the op and was very poorly.
After nearly 3 weeks of being in a coma, the biopsy results came back and it wasn't a tumour it was and abscess from having ear infections, it had managed to go on his brain.
He also had a stroke too.
He was in critical care for 4 weeks we then went to a ward, he was still on an ventilation though a tracheotomy. He Was on the ward for another month & half.he was then sent to another hospital for rehabilitation he was there for 5 weeks.
He's been at home now for 5 weeks, I'm finding it hard to care for him, when he's in a good mood it's lovely, but when he's down he's very down.
We have been having an OT coming in once a week. But things haven't gone good with her last week, when my husband asked if he get his sight fully back and drive again, she told him she didn't think so, he's very worried about his sight and says he will kill him self if he doesn't get it back, I took him to the doctors and got him some anti depressants, they reacted with his other medications and made him have a seizure, we have then been back again to get some more anti depressants, but I'm scared to give them to him incase it happens again.
I really don't know what to do?
I'm scared cause if his sight doesn't ever come back what will he do or happen.
Life is not the same as it was we both worked, he had his own business and I work in a care home for dementia. We spent most of our weekends on his boat as he loved sailing. We both had a busy life and did lots of stuff.
Now, life is totally different, I try to be positive and not let things get to me but now, I'm starting to feel like I don't know which way to turn and if it wasn't for our son I'd don't know what I'd do to keep me going.
I'm sorry to anyone if I've ranted on. Xx
Oh Shelly, what a terrible situation for you.

I only found my way here yesterday so I'm a newbie too and not experienced enough in all this to give you any advice but I can absolutely assure you that there will be very kind and practical people along very shortly who will give you tons of support.

So until they arrive I'm offering a big virtual hug and a hand of friendship until someone more useful turns up xxxxxxx
Thank you for your kind words.
you just feel so lost and confused, when you've been given a load of information of them too.

I'm in the process of getting him a 1:1 carer so I can go work.

I'm just finding it the hardest when he's down and doesn't want to get up or doing anything. Xxx
Dear Shelley - you've been through hell and back again, without a doubt. When life throws these 'cannonballs' at us it is terrifying, and I can remember just how traumatised my husband and I were when, out of the blue (he had an irritating cough, that was all....) he was diagnosed with terminal cancer.....our lives just changed drastically, in the course of a few minutes conversation with his GP giving him the results.....

So I do understand the 'terror' that consumes you right now.

OK, let's step back and see what's what. First of all, head injuries of any kind are always especially frightening because 'we live in our head'. The good news for your husband has to be that it is NOT a brain tumour - yes, that's a 'relative' piece of good news, but please hang on to it even so.

That said, he clearly has a lot of injuries and problems, and a lot of challenges.

In terms of his vision/sight, would it be an idea to get in touch with the RNIB? They deal every day with people affected by sight loss, or the threat of it, or partial sight loss, and they will have a very great deal of experience in this matter. With all respect to an occupational therapist, are they sufficiently expert in this matter? Aren't they focussed on dealing WITH disability, not on whether it is will actually happen, or be permanent, etc?

I take it your husband has a hospital consultant - possibly several, and sees them regularly? Again, this should be the person that gives you the medical low down on your husband's prognosis.

(Another thing I learnt after my husband's diagnosis is that different doctors can have quite widely different opinions about outcomes! Gather several opinions if you wish.)

I'm sorry to hear about the seizures. They are frightening, no doubt about it. When my husband's cancer progressed, it reached his brain, and he started having seizures, and the first time I witnessed one (the first one was in hospital, and I didn't see it - only the after effects), it was very frightening. BUT, and those here with experience of epilepsy will tell you, you DO get used to them, and everyone learns how to handle them, and what to do and not do, etc, so they can be 'managed' even if they cannot always be avoided (though hopefully of course with a change in meds they may not occur again.)

Finally, for now, I remind you of something that everyone with a disability or illness who is still nevertheless alive should always, always, always remember - that what cannot be cured NOW yet may become curable within their lifetime! It was the most important lesson I learnt from my husband's diagnosis, that while there is life, there is hope - and even though things may be grim for your husband now, yet there may not only be treatment out there already to chase down, but that new treatments emerge all the time, and can radically change outlooks for patients. And also, never forget that that 'natural healing' may come with time, as the brain and body adapt and mend themselves. All of this boils down to my saying, whatever the situation is now, it may improve either by the body healing itself or new treatments being developed by the medical profession.

Hang on in there, the both of you!

PS - antidepressants may prove a useful 'stepping stone' for your husband over this very troubled water. Worth a try?
Hi Shelly,

Welcome and hugs to you and yours.
We all go through these emotions at times, but we are here for you.

Take care and lots of love

Hi Shelly
Im sorry you are feeling so lost, although I remember the feeling well.
20 years ago hubby had road accident that left him with a traumatic brain injury and epilepsy. He was about the same age as your husband and we had 2 children, one aged 8 and the other aged 5. Both the children have grown up, got through uni, have started their careers, are married themselves and have their own lives now. How is your son coping?
When something like that happens its like a bolt out of the blue and, no - nothing is the same again. But that doesnt mean its the end of the world. It will take time to adjust, especially for your husband and depression is very common. Hubby couldnt take anti-Ds, because of the epilepsy too - he has come out of the depression though. Incidentally, if you have visual problems following a brain injury it can take up to a year to resolve, so its probably early days yet. Even if he cant drive afterwards, hubby cant either and there are always ways round it.
Give yourself some slack, it can be frightening for the whole family.