Communication

[louise69]

Hi a close family member has recently suffered a severe bleed on the brain from an accident, they now have problems understanding and communicating, Im finding this quite difficult to deal with as they become frustrated when I don't understand what they have said any advice/

[Hidden]

Hi Louise

Sorry to hear about your relative. I think it would be a good idea to speak to Headway or go on the website. You can download lots of leaflets about brain injuries and the difficulties they bring.

They also give advice on how to support your loved one and take care of yourself too. You are always welcome to chat to us lot on here and will get all sorts of advice.

My advice would be love and patience toward your loved one, ask him/her what would help, what they would like. And equally importantly, take care of yourself, rest and time to yourself.

Best wishes

[Hidden]

Hi, husband could not speak soon after his acquired brain injury and we used an app on his iPad. He tapped the words and the iPad spoke them. Don't know where form as daughter sorted it but it was one used with children who have no speech. Good luck

[louise69 in reply to Hidden]

Thanks I will look into finding an app. His understanding is limited but we are willing to try anything that may help.

[cat3]

Hi Louise and welcome. I'm sorry to hear about your relative's injury and resulting difficulties but you've come to a good place for support and/or advice.

Can you tell us a little more perhaps ? e.g. How long ago did the accident happen ; what type of surgery did he/she undergo and have you contacted the Headway helpline for information and print-outs ?

Cat x

[louise69 in reply to cat3]

Hi thanks for replying. The accident happened 3 months ago, it resulted in a severe bleed on the left handside of the brain, there was emergency surgery carried out that day which was successful. It has affects short tem memory, his ability to talk coherently but he has no insight into the fact he is not making sense, this makes conversation difficult. He does not understand why he is in hospital and I am concerned how we will deal with his understanding that he cannot be left to do whatever he wants when he is home. I have spoken to Headway.

[cat3]

Damage to the left hemisphere invariably affects the speech although it's almost impossible to foresee what the long term effects will be. Three months is really early days in terms of recovery for brain injury, so signs of improvement are often slow and gradual.

But don't be despondent when things seem to be at a standstill. The healing is invisible to onlookers, but the brain is an amazing organ, capable of overriding damage to a point which can allow an acceptable quality of life.

Hang on a little longer Louise before reaching any conclusions. I doubt that the consultant can offer a definite prognosis at this stage, so all you can do in the meantime is show support for your relative and try to stay positive. Many people emerge from such injuries with surprising & pleasing results, but it really is a waiting game.

Take care of yourself and don't lose hope.

Cat x

[louise69 in reply to cat3]

Hi Cat

thanks for your replies just sharing my concerns on here has made me feel better. People are so kind but so many people are saying we should be happy that he is alive which we obviously are pleased but to some extent we have still lost the man he was. I presume when he comes home we will initially have support from various agencies to help us all adjust to what care he needs and also support him with the realization that he will be unable to do everything he used to such as driving.

Thanks again

x

[cat3 in reply to louise69]

Simply being alive isn't enough, I agree. But on this forum we see many stories of people who struggle, after a brain injury, with mobility, speech, coordination etc but go on to have really satisfactory recoveries.

And those who don't recover so easily/fully often adapt, with support from therapists and other professionals, to a life which may be different than before, but still well worth living.

It's a common expression on here . . . . . . . . . . "In my other life" . . . . . . . and mostly said with humour.

I had a brain haemorrhage requiring two surgical procedures and for a while didn't recognise my own daughter, and my family were told by the surgeon 'I can't promise anything ; we just watch and wait'. But now I can function well enough to live alone and drive again.

Keep talking to us Louise and please update us whenever you can.

Best wishes to you and your family. x

[Hidden]

Hi Louise

sorry to hear about your family member and their injury. You will get lots of useful advice from here im sure.

Try contacting the Aidis Trust charity as regards a useful app-details on the web. They have been very helpful to me before.

Its a slow journey and i do hope you find the useful help you need.

Take care and wishes to you both

Karen

[Kirk5w7]

Hi Louise, I know people mean well and think they're saying the right thing, but it's difficult when you lose the person you once knew.

He will be very frustrated when he realises his limitations, but love and patience go a long way.

I am almost 3 years on and still seeing improvements albeit very minor now.

Once I was home I improved even faster than in the rehab unit, they laid the foundations that I built on.

I still do not drive and probably never will again, I have sight problems which weren't apparent until I identified them myself, all the follow my finger and finger wiggling tests didn't show up the problem, I have visual neglect, my brain can forget what I see and some peripheral vision loss in my left eye so spatial awareness can be a problem at times.

Just something to be aware of.

Unfortunately it can be a tedious, frustrating time but if your family member had hobbies before, try thinking out of the box to try and re-engage them with something as soon as possible.

The brain is an amazing "plastic" organ that can relearn and adapt but practice, practice, practice is needed, and that can be so tiring for the patient, just remember how children learn and don't always expect the person to pick up where they left off before the injury, sometimes you have to go right back to the start, I did that with children's jigsaws and writing, now I'm back to where I was, my handwriting even looks the same as before!

A good source of books are the Beain Injury Rewiring ones, they do one for survivors, and one for loved ones I think, the author isCarolyn E. Dolan a survivor herself.

As Cat says, any questions just ask someone will answer or point you in the right direction.

Take care Janet xx

[Graleon]

Hi Louise, very sorry to hear about your family member, please don’t despair because as Cat has said “Three months is really early days”. This is the first time I have posted here or anywhere else concerning my brain surgery. I had emergency brain surgery nearly 6 years ago now for a pontine abscess on my brain stem. The neurosurgeon drained the abscess, which apparently has a better patient survival rate than removing it.

I spent the following 11 weeks in hospital learning to talk, walk, feed myself and trying to get to grips with what had happened to me. I could not hold a conversation properly for months, I still find it hard to keep a conversation going. My partner and/or close family often has to finish sentences for me. For months most attempts at conversing with family and friends ended in me crying and not being able to say anything.

Life will be full of frustration and emotion for your relative, frustration at not being able to do the things that were perfectly normal before. Full of emotion because of being happy to be alive, happy that your family are round you supporting you but also worried that you’ll be a burden to them.

Now 6 years further on I am driving a car and I get around with the aid of crutches. Life is not the same as prior to surgery but then again it’s an awful lot better than it was post 6-12-18 months. Things improve with time, my close family still have to help me out when I lose the flow of a conversations, and I can still get very emotional sometimes.

Give it time Louise and the best of luck to you both.

[louise69]

Thank you everyone who has replied to my post, it is great to hear from people who truly understand. Its my dad who suffered the injury and I am finding it difficult to support my mum and deal with my own feelings about my dads injury and the impact it has had on the whole family. He has made excellent progress and we know how lucky we are that things aren't worse, the bleed was extensive. I know that he will hopefully improve over the months ahead, it's just quite tricky having no definite prognosis and he has no understanding of what has happened and that there is even anything wlong with him. It helps to talk so thank you all for helping me to do that. Best wishes to you all.

[Hidden]

Hi, you are doing amazingly well and without realising it you have become an unpaid family carer, like many of us. Find your nearest Carers organisation by looking on the Carers Trust website. They help unpaid family carers like you and your mum and give you support.

It will be a long haul but things do improve, I was told by husband would not survive, then would never talk again, then would never use his arm and leg. But he did all of these things in time, a long time. Everyone is individual and their improvement is also individual, the other bloggers here are amazing and I learn how to help my husband from then on a regular basis.

Thinking if you. Hug.

[louise69 in reply to Hidden]

Hi thanks for your reply, you have given me a boost when I was feeling anxious. Its all such a new experience and all advice is welcome. Feel my dad is not getting much benefit from being in the rehab unit now as physically he is going well, coimmunization is the biggest stumbling block. It's hard to see how we will cope 24/7 , when we are used to having nursing staff around us who are his main carers at the moment. I know we will get there in the end just going to be a hard learning curve.

Thanks again.

[Hidden]

A lot of people don't like to consider it but your family may need to think about contacting social services to see what they can offer your dad in terms of care workers if that's what he may need. Though the rehab unit may do this before dad leaves there- even for a short time. Your carers organization will offer support & give you info on Carers rights. There are usually some options like a day centre, headway centre / group. You & Mum don't have to cope alone.

we all get support & help from here. the early days can be very scarey & probably like me you are imaging all sorts. I re-arranged my whole life, rebuilt the house & various other things in my mind while me husband was in rehab. In reality a few adaptations & a little rearrangement of things were all that was required - glad I didn't have the ramps put in & the bedroom moved downstairs before I checked what he would need!!! I do laugh about it now.

Best wishes

Jenni

[louise69 in reply to Hidden]

Thanks Jenni for Ghent suggestions. I think we are buy trying to get everything sorted in our heads as we feel like we then have some control over the ssituation. My dad won't be home for Christmas so we know we have time to get organised with everything he may need and all the help we will need. I hope things are good with you and you have a nice Christmas. X

[Hidden]

Hi Louise

It is good to have time to get your head around everything before you have to deal with more than you currently are, which is more than enough to handle at any one time. Thanks yes we are all well, I am managing to keep an eye on husband and not letting him overdo it too much. He has had three bad nights already this week, not sleeping and therefore nor do I, hoping that exhaustion will kick in tonight. Christmas is going to be quiet with just his mum and 16 year old son and we have planned very closely what we are cooking. Fingers crossed! Hope your christmas is good too, all things considered. Best wishes. Xx

[Matt2584]

Hi Louise,

I know this is not advice as such but I have had a number of operations in the past and after my second operation in 1996, my central nervous system was damaged leading to weak muscles, more noticable in my face. I cannot naturally press my lips together. At the time, I used to drink a lot of fizzy drinks, Pepsi Max is one of them. When I awoke after my second op, I asked me folks to pass me the Pepsi max but it came out as if I wanted a taxi haha. I see it as funny now but at the time I was only 11 and found it highly frustrating and upseting. Over 18 years, the muscles are still weak but have got a lot better over time. I mo longer sound like I want to hail a taxi :). I have trouble pronouncing words with Bs, Ps and Ms, 'basketball' and so on. So whenever I say difficult words, I might press my top lip down with my finger asif I was doing a Hitler impression :).