There is hope

[scott1556]

Hello everyone, I am new to this forum as my mum suffered a BI May Bank Holiday and has been in hospital since then. I have found the advice on this forum very useful and comforting - as to be honest, you get very little information from the doctors (I think this is due to the fact that every BI is different and they dont want to give false hope).

I promised myself I would post an update on here as I think its good for folks to hear a good news story.

So, my mum is 5 weeks into her BI and it has been an emotional journey. She was admitted to hospital with a brain bleed after a fall and then underwent brain surgery as she began to deteriorate rapidly. When she came out of the op - she wasnt our mum anymore. Delirious, pulling her tubes out, screaming, didnt recognise us, hallucinating - very upsetting to see, and we all thought we wouldnt get her back as this went on for quite a while. Also, her sodium levels were critical - 110 (when they should be 130). NB - one thing to keep an eye on - and bug the hospital about it as they sometimes overlook it.

However, she is making good progress. Four weeks after the op she is very much on the mend. Its early days, she still gets a little confused, her short term memory is dreadful and she is very wobbly - but definitely our mum again.

What a journey for us all. As a family; we have loved, laughed and cried (alot) together. Mum still has a long way to go (I am terrified of her falling again) and I am sure she will face many challenges, but hopefully with the right support she will have the fun she deserves.

Good luck to all the families out there facing the same challenges as we are/have.

[paxo05]

Welcome Scott.

Sorry to here about your mum...But then again without the bi we would not be talking.

It is early days and things will go up.and down in the days ahead. It is important to look back at the advances your mum will make. These is easy to forget when busy helping recovery.

All bi's are different but there are enough of us on here to cover most things.

Once again welcome and I wish your mum a good recovery.

Pax

[cat3]

Hi Scott. Great news about your mum's progress. I had the same issue 5 years ago and your words certainly brought back emotive memories (me pulling out tubes, hallucinating etc. and family almost out of their minds).

Life's different now ; not so energetic and patient as I once was, but definitely still worth living !

My family & I were already very close but a critical illness, if anything, tightened that bond even more.

I hope your mum's progress goes from strength to strength ! Cat x

[scott1556 in reply to cat3]

Hi Cat

Its Sharon...you gave me lots of advice when mum first had the accident, when I was really worried about her behavior. I tried to find the original post, but couldnt. Thank you for all your kind thoughts and words.

And you were right

Sharon xx

[cat3 in reply to scott1556]

Oh Sharon.......hello ! Thank you for your lovely words, and let me say that you've just made my day with this update.

It's still really early on in terms of your mum's recovery and it's natural for you to be wary for her.

I can remember being followed (by the shadowy figure of my son beside the hedge-rows) the first time I insisted on walking out alone. Then I bought a new yellow bike to prove my invincibility, causing more anxiety.

It's an uncertain time still isn't it. But I live mainly alone and coped safely and happily within around 5 months. Mums, after a brain injury, are like adolescents..............they'll do whatever it takes to get their independence.

It's looking good for your mum Sharon and there's loads of time for further improvements. Please keep us updated, and maybe even persuade her to introduce herself personally one day soon !

With love and all best wishes to you both m'love........Cat xx

[scott1556 in reply to cat3]

Actually, Cat, I hope you dont mind me asking about independence. The original plan was for mum to come to us for a few weeks, but her mobility is quite bad and we have 2 bouncy dogs and a house on different levels. I had completely under estimated how she would be once she was back up on her feet. She now uses a frame, but is quite wobbly - but getting stronger. We are now pushing for a place in a rehab unit for a few weeks for her to gain her confidence and skills. But we may not get it. So its been mentioned that she go back home with home helps coming in regularly throughout the day. I am not entirely sure that this will work..so I am pondering about having her here again. How did it work for you?

[cat3 in reply to scott1556]

Everyone kept telling me how lucky I was to have made such speedy progress.

But one thing which is always impressed upon us from anyone in the field of brain injury, is that no two injuries are the same and no two recoveries are comparable either.

So my advice to you Sharon would be to err on the side of caution until your mum clearly demonstrates that she can cope alone. I can strongly identify with the poor mobility and balance ; it's something which many of us are left with permanently and often talk about in terms of looking drunk.

But whereas some of us have learned to laugh it off to some extent, others are more troubled by poor balance and quite distressed by it. And, as no one can see inside another's head, it's impossible to judge just how severely they're affected.

The after effects are so subjective as they're dependent on other health issues, states of mind, fitness levels and age etc..........

A house on different levels and with 'bouncy' dogs isn't ideal as you say, but I'd opt (in the absence of residential rehab) for having your mum with you, at least in the beginning to see how she copes day to day.

I'm assuming she's been assessed by the OH team and Social Services if she's ready for discharge ?

[scott1556 in reply to cat3]

We are just going through the process - she can make a cup of tea - this seems to be their benchmark!! Thank you for your advice, I am wondering whether staying at her house for a while might be the best option. She lives close by, so will still be local...lets see what they come up with. As a family we need to discuss and decide whats best I guess xx

[cat3 in reply to scott1556]

Moving in with her for a while sounds perfect Sharon.

In her own familiar surroundings, and back in her own bed, your mum should have a good chance of getting back her confidence and regaining that all important feeling of normality.

I think you knew all along what you were going to do but understandably uncertain. Good girl Sharon ;

I hope all goes well ; remember to phone the Headway helpline to make sure you're aware of all aftercare available. (0808 800 2244 office hours mon - fri)

All best wishes, Love Cat xx

[razyheath43 in reply to scott1556]

AAAHH tea making that takes me back! My hubby (bless him) put every single electric appliance on in the kitchen trying to make 2 cups! We laugh now but it was dangerous! Sometimes he comes into the living room and says"here you go i left everything on for you!"so glad to read how well your mum is doing hugs and safe tea making

[scott1556 in reply to razyheath43]

Thank you - actually, when I saw her last night she actually remembered that she had a bleed on the brain and not a brain tumor (that's what she has been telling everyone) - so I guess that's a step in the right direction xx

[Alibongo60]

Hi Sharon, I too had a bleed on the brain in January, like your mum, I have short term memory loss, fatigue and can be wobbly on my feet, but have progressed, you don't say how old mum is because think age can make a difference, think the older we get becomes harder to bounce back. What does come through your message is how hard it is on the family to watch their loved one go through this,but also how you are there to support her, I think this will help her recovery. What does mum want to do on discharge, I know I felt very vulnerable and slept with my phone at the side of me in case I needed help, even though I live with my son. I too have two blundering dogs who were very excited I was home but could quite easily knocked me off my feet, so my son made sure they were out of the way when needed, would it be possible for you and family to stay at mums for few weeks, with the home helps then you can see what her needs are and ensure she gets the right help, at least that would reassure you when your not there, lots of luck and best wishes to you and your mum love Alice xx

[scott1556 in reply to Alibongo60]

Hi Alice

Yes, I am wondering whether that might be a better option as then we can see how she copes in her own home, rather than ours. Thank you for your advice xx

[jayne_h]

Hi,

I'm please to hear your mum is improving. Every brain injury is different. My mum got post concussion syndrome after hitting her head on a tap while washing her hair in a sink and then she fell again due to blood loss. She managed to call her best friend before she passed out and her friend heard it and called an ambulance.

Mum is improving but it has taken 10 months so far. She feels like she is getting more energy back. I think her self confidence is still impacted by it all.

Try food to help your mum recover using Tina M Sullivan Nourish your Noggin which you can get on amazon. Also the bood by Dr Diane Stolpert drdiane.com on recovering from post concussion syndrome and brain injury may help you, even though it's a bit scientific. I used the cook book to help my mum.

Get her a calendar and a diary to help her memory. You can also label the cupboards at home so she knows where cups, plates and cutlery are plus other objects. She may need that for a while. Post its are great too for little reminders. Some people seem to have better memories for visual images than other things. Pictures may help.

I've installed a telecare system. There was a great one locally where they send local wardens come out if an alarm is pressed. The bracelet ones are the best as you can wear them in the bath or shower and that's definately a place you want to have an alarm. It's called Ostara but it's only available in Newcastle. They have different packages and services. You may have some similar services locally. You can also get your mum a buddi bracelet - buddi.co.uk - and the bracelet also has a faill detector. It is waterproof to a few meters as well. It alerts a help centre if she falls. she can also press a button. You need good mobile network coverage in the area for it to work so ask them about it. You can assign several buddies to her like your family or neighbours in case she does push the button. A website will let you set that up. You can track her on GPRS as well on the map. Very handy.

I hope your mum continues to imrpove

J xxx

[scott1556 in reply to jayne_h]

Hello Jayne

Thank you so much for your advice - some great tips and ideas - I will definitely look into all of them.

We had some good news today - mum has got a place at a local rehab home (the funding has come through) so I am sure that she will improve there, as the experts are all there (it specialises in head injuries). Its very difficult to assess her in hospital as she is in her comfort zone and everything is being done for her - so I think going into rehab will give us a feel for what she can and cant deal with at the moment.

Thank you for your kind thoughts, Sharon xxx

[jayne_h in reply to scott1556]

Hi Sharon

That is good news. I hope your mum will continue to improve and that you can get her home as soon as possible. Those books might help you all understand what has happened to her as well. It's very disturbing when a relative has these problems. The headway books are great too.

J xxx