Mum's brain injury

[scott1556]

Hello everyone, I am new here. My name is Sharon and my mum suffered a bleed on her brain after a fall just over three weeks ago. The bleed has been drained and she currently has a pocket of air on the brain (where the bleed was). However, the brain injury doesnt seem to be the only problem. Her sodium levels are very low (119) which is causing her massive confusion ie agitated, doesnt know where she is, living in a fictional world. Has anybody out there got experience of this - as currently, we are so sad, as we all feel we have lost our clever, loving mum. She is still in hospital and is 78. Thank you.

[Hidden]

Three weeks in nothing in terms of a brain injury. Try not to worry too much, she will improve as time goes by. She may not get back to exactly how she was before, but the stage she is at now will pass. Just keep talking to her, show her photos, play her music - anything to communicate with her. Do phone Headway tomorrow morning and chat with them, they will be able to give you lots of advice and answer any questions you have.

Lots of luck.

[scott1556 in reply to Hidden]

Thank you for coming back to me...yes, I will phone Headway today. Its great that this group exists and you dont get much out of the doctors. Sharon

[cat3]

Hello Sharon. I had a brain haemorrhage in 2011 and remember nothing of the first few weeks. But I later learned that (in a pristine state-of-the-art ICU) I'd regularly complained of cobwebs and 'filthy ceilings'...............not to mention thinking my daughter was one of my neighbours (which upset her dreadfully).

My son and daughter were apparently really stressed and upset about my level of confusion and nonsensical out-pourings despite staff assuring them it was a common, but mostly temporary, phenonemon during the early stages of brain injury.

As Jan has said, 3 weeks is really early days where brain injury is concerned, and there are many more weeks of healing to go before your mum's progress will start to show.

All best wishes for better days ahead for both you and for your mum. Cat xx

[scott1556 in reply to cat3]

Thank you so much for your reply...your words are really comforting and I will show them to my sister. Its almost as if she is on some acid trip at the moment..fairies in the room etc. I think the worst thing, is that she gets so anxious - difficult to see. Thank you x

[cat3 in reply to scott1556]

You're so welcome Sharon. I want so much to convey how freaked out my family were in the early days, to impress upon you how the wierdest situation can so easily change for the better.

This is a funny story (now) but when my daughter arrived one day she immediately thought 'What the hell's she been up to now ?' as my hands were heavily bandaged & like white footballs. It was to stop me pulling out my tubes...................the more bandage they used the longer it took me to undoe them with my teeth. Once again, upsetting, as I looked so pathetic apparently.

Oh and another piece of behaviour I have no memory of was swearing 'like a trooper' because I was so confused and stressed.

All completely out of character stuff which I went back to apologise for when I was mobile again (with massive box of Thornton's). But even then the staff said it was great to see the 'real' person as all they ever see are folk talking gobbledygook.

Please bear in mind how slowly the brain heals and that improvements might seem miniscule at first. But please come back and update us from time to time on your mum's progress won't you m'love ? Cat x

[scott1556 in reply to cat3]

Hi Cat, so nice to "chat". Yes, mum has had the Nips on (white boxer gloves) to stop her pulling her feeding tube etc out. So awful to see it..I burst into tears when I saw it the first time. However, she has no recollection of having these on.

Did you find that you had good and bad days? She was really good on Thurs and Friday last week but over the weekend was crazy again..thinking that dad was in bed next to her. My sister was upset as it seems she is going backwards. Appreciate your support xx

[cat3 in reply to scott1556]

It's such a stressful experience for loved ones. I was blissfully unaware of all the fear & worry around me.

And the fact it's one step forwards then several steps back can be alarming. But considering all the different functions of the brain it's not surprising that some faculties improve quicker than others.

Then there are the 'nothing' periods which can seem bleak, but remember that the brain heals best when asleep or inactive, so just because you can't see progress doesn't mean it isn't happening right in front of you.

I'd been in ICU about 10 days when I apparently became none responsive and was rushed for an MRI as a stroke was suspected. But nothing was found and it was deemed as unexplained but not unusual..................... there aren't any hard & fast rules Sharon.

I started making sense after around 6 weeks, but after ignoring advice not to move from a commode I thought I knew better and, finding my legs didn't work,..........well, you can imagine.

But the whole time I was in a sort of bubble not noticing that my son and daughter must have been frantic, and worn out coming straight from a day's work every day to see me.

I really feel for you my dear, and hope sincerely that my ramblings might give you a little extra hope. xx

[cat3 in reply to cat3]

PS We're always here ! x

[jayne_h]

Hi Scott, I'm sorry to hear about your mum's problems. One of my aunties had what they call hormonal low sodium if that is what your mum has now. No one realized what her problem was at the time. Her memory was getting worse. My cousin got her GP to send her to hospital for tests and they found the low sodium problem. Your mum is in the best place to have this monitored and the hospital staff will get the levels up to normal. It can really make someone's memory get worse. When your mum's sodium levels improve, they will probably give her a memory test to see how she is doing. The sodium problem is in addition to your mum's other brain injury.

Do give headway a call or drop them and email. Spending time with your mum and communicating with her will be good so keep doing that.

When she is getting better, try food to help her. For eg Nourish Your Noggin by Tina M Sullivan.

Hope she gets well very soon but head injuries take time.

J xxx

[Hidden]

Hi Scott

Sorry to hear about your mum. I know its a scary time for the whole family.

My mum was 75 and had a brain hemorrhage with associated stroke just over 18 months ago. She had surgery for aneurysm and was in hospital for almost three months, 6 weeks in HDU/ITU and a further 6 on the wards so as has been said where brain injuries are concerned 3 weeks is really a short time.

I too remember all the things you are talking about. Mum went form coherent one moment to babbling non-sense the next and at times she was about as agitated as I have ever seen her, swearing at us and the nurses on occasion. She knew she knew us but often couldn' t remember our names ( my sons girlfriend was known as Nigel for weeks for example, and for a time I was 35 again [I wish!!] which was my age reversed-she did that A LOT reverse numbers) she even spoke in a different accent initially! I know its tough but sometimes you just have to laugh about it among yourselves and gently try and remind mum with names etc. You will feel like you are saying it a thousand times a day but in all honesty she wont remember much especially in the early weeks, but it DOES slowly improve. When we look back on those times now mum laughs with us! Oh and if she shouts at you try not to take it personally, remember its the effect of the injury not your mum. x

Every brain injury is different and I am sure the doctors will tell you it takes about six months to a year before you will know how much of your mum's abilities have returned and how much, if any she has lost. We were told my mum was unlikely to survive but I can tell you she is now 77, living independently, has good mobility and her speech is almost fully recovered. Is she the same as before?? In all honesty no but that is not to say she is completely different.... and certainly in all the ways that matter, our relationship's, being loving and caring and looking out for one another she is still central in our family. She still has memory problems but nothing compared to how she was initially and it can be hard but no less hard than it is for my mum. There are techniques to help with that that you will learn about and there is useful advice on here from both those who have had BI and their carers..

As for feeling you have lost your mum, this is really hard to cope with. I went from feeling terribly guilty that I hadn't/wasn't doing enough to help her to feeling really angry and cheated... and I still struggle with this at times ! All I can say is take each day a day at a time. Access any help you need, not just for mum but for you. I only recently discovered Headway and this site and it is a God send. I always remind myself myself how lucky we are she is still here.

All the best to you and i wish your mum a speedy recovery.

[scott1556 in reply to Hidden]

Hello Pandababy

Thank you so much for taking the time to come back to me and sharing your mum's story. It gives me alot of hope.

To hear that your mum went through exactly the same as my mum is going through now helps me put some of this into perspective and be optimistic. Nobody warns you that this will happen as part of their recovery do they....the roller coaster of it all - up one moment, down the next - as you say one minute making complete sense, the next minute on another planet.

She was quite good yesterday when I went to see her - not sure what to expect later today though. I have found if she has a really good day, the next day she is quite confused again...whether its the brain getting tired as it tries to heal itself..not sure.

I hope your mum continues to be healthy and well.

Sharon xx

[Hidden in reply to scott1556]

Hi Sharon

I agree regarding ups and downs .we would say one step forward 4 back...but it DOES improve.

I was thinking more about her stages of recovery. After this confused stage she had a terrible headache for weeks ( not surprisingly) and she would sleep...a lot! It was a 5 hour round trip for us to drive to visit her and quite often she would sleep through most of it! She also lost social skills so if she wanted to watch TV she would just switch it in and ignore you.....often halfway through a conversation.

I think it is the brain just healing itself. It's had quite a battering after all, and the nurses just told us not to worry it takes time. Like I said her surgeon said up to a year. She still gets tired very easy now, that is one lasting effect, but then I consider at 77 she is getting older too and quite a lot of folks of that age I know have afternoon naps and they haven't had a BI!

All the best

JJ

[scott1556 in reply to Hidden]

Yeah, know the feeling - especially in this heat. Thank you for your support. Sharon x

[scott1556 in reply to Hidden]

Hi there

I was reading your post again, as mum is starting to get headaches. She is doing really well, currently in rehab, but the headaches started on Tuesday and havent stopped. I remember that you said that your mum had a similar occurrence. Not sure whether its something to be worried about or not. Her vital signs are good and no dizzy spells, or anything else....when does the worrying stop...lol x

[Hidden]

Hi Sharon

Great to hear your mum starting rehab...that's progress!

Ah the headaches, mum suffered for months afterwards, but if you consider the injury to the brain, swelling etc and all the going on inside a rigid bone skull it's no surprise they get headaches! Mum just took the pain killers, although we sometimes had to check she had actually told nurses she had a headache as often when asked if she wanted an relief she said no to the nurses then complained to us, she said she didn't like bothering the staff! So just make sure she has had the pain relief she can have !

I am sure the staff will be monitoring blood pressure etc. I can't remember if your mum had surgery or not? As my mum had surgery she had triple H therapy which ironically means keeping blood pressure high post operatively to help with blood flow to brain tissue. This also causes headaches. It's all part of this roller coaster journey we are on as families!

I would say they not to worry but I know it's difficult...and as for when does the worrying stop I don't know because we still worry about some things, it just changes as both you and mum adapt to what has happened.like I said you will look back and see how far you have come evening small things.

We kept a journal, Initally for mum then she started to use it. When we wrote it we kept thinking gosh no change, nothing different etc but now when you look back you see the milestones,first time she spoke clearly, first time sitting up, walking out of bed etc. It was a good way to see progress and be thankful for it. It might help?

Keep smiling

Jacqui

[scott1556 in reply to Hidden]

Hi Jacqui, thank you for your feedback. It is very helpful. Yes, a journal is a great idea..I will suggest it to the family. She is making great progress