Mum in very early stage TBI - please help - Headway

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Mum in very early stage TBI - please help

GranolaLover93 profile image
29 Replies

My mother slipped on the stairs and suffered a brain injury two days ago.

I found her and called the ambulance.

She was taken to neurology immediately and they told us she has a bleed in the brain, and that we won’t know any more for a few more days.

She moved to general ICU yesterday and was able to have her ventilator removed, but still needs oxygen from the nasal tube.

She also seems to have a chest infection so they’re pumping her full of antibiotics as well as painkillers sedatives etc.

She’s almost 60, thin and has alot of other health problems like arthritis and high blood pressure.

She has been flickering her eyes open but they are unfocused, and she can’t speak and isn’t lucid. She’s been very agitated and the nurses have had to put mittons on her because she thrashed and tries to pull her tubes out.

When I saw her today with my brother, she did seem to calm down when we spoke to her. I think she knew it was us.

We spoke with her and tried to calm her down, but when I asked her to try and open her eyes she didn’t - but it seemed like she was trying and was frowning. The way she is acting is like someone with a severe mental disability, not lucid but moving her limbs and seemingly very uncomfortable.

The consultant said due to her age, it’s unlikely she will ever recover fully.

My heart is aching and I can’t stop crying. I’m exhausted but can’t sleep. Will I ever get my mum back? Will she ever be able to talk to me again? I just want to speak to her and tell her how sorry I am for being snappy with her, and raising my voice when we argued.

I am grief stricken and need help. Any advice or stories or anything.

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GranolaLover93
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29 Replies

very sorry to hear what you are going through. It must be good news that she recognises your voices. Don't worry about past snappiness, she's your mother, she understands, she loves you, she calms when you are there.

Others will reply soon who have been where you are, and where she is. You are in shock as well as grief, treat yourself gently.

GranolaLover93 profile image
GranolaLover93 in reply toGraceissufficient

Thank you. Just want to hear her voice again x

Terry270 profile image
Terry270 in reply toGraceissufficient

The previous reply is very good You can't change the past its now that is important

Your mum will understand and always love you. Although age isn't on her side the human body is amazing.It takes a long time even fir a young person. Just be there keep talking, be.positive. tell her nice things and

Perhaps Plat her favorite music. Even on ear phones if the doctors say it's OK. Keep 💪 💪 💪

GranolaLover93 profile image
GranolaLover93 in reply toTerry270

Thank you x

Furtherout profile image
Furtherout

My husband was 63 when he suffered a severe TBI as a result of a near fatal car crash. He broke his neck in 5 places and we were told if he survived he was unlikely to walk or have a normal life again . A year later he is driving, working and going to the gym . He displayed all the behaviours your mum is showing (including the dreaded mittens ) . I won’t pretend it hasn’t been a long ,slow and sometimes heartbreaking journey , he has brain injuries and may never be quite who he was but recovery is long and slow but possible Be prepared for a slow journey , in terms of your mum’s injury it is incredibly early days . Please ring the Headway helpline - they will guide you and have been a fantastic support to us . I wish you luck and strength.

GranolaLover93 profile image
GranolaLover93 in reply toFurtherout

Thank you, this is really encouraging.

I know it’s only a few days but it’s so heart wrenching to see and my mind is racing with all the possibilities. Just last week we were walking and laughing together. She’s my best friend and I feel like I’m living in a nightmare.

When did your husband start to speak/become lucid? I know everyone is different, would just love to be able to see a small glimpse of her come back x

Furtherout profile image
Furtherout in reply toGranolaLover93

I think it was about two weeks and he had a lot of post traumatic amnesia so was very confused for another 10days or so . Again this is normal - I laugh now when I watch dramas and see people wake up in ITU completely lucid - that’s just not real life . I totally understand your feelings - I kept a journal of every day he spent in hospital which helps with noticing the tiny changes . Ask questions of the medical team and make sure you understand what they reply . It may be helpful again to write down your questions before you go in as it is so hard to stay calm and remember everything when you are there . My understanding is every patient is very different so you will never get a straight answer on what the eventual recovery will be but try and take a day at a time , squeeze her had and talk to her - my husband feels as though he remembers that. X

GranolaLover93 profile image
GranolaLover93 in reply toFurtherout

Thank you.

It’s day 3 now and I think she knows I’m there. I managed to get that her mouth was dry because was pointing at it, so we had the nurse wet her mouth. And when she opened her eyes today and saw me, I think she tried to smile.

Trying to remain positive, miss my lovely mum so much x

skydivesurvivor profile image
skydivesurvivor in reply toGranolaLover93

Good, progress!! Hang in there!!

skydivesurvivor profile image
skydivesurvivor

morning. Suffered a tbi in 2000 at 34 spent a month in coma. After nearly 30 years am still surviving?! Apparently my first word was mum?!. Don’t give up hope!! If she’s survived the first week it looks good!! A really stressful time for y all, like me, she’s got the better deal? Unaware of all the stress!! Saw the other side when dad had his first heart attack. Know what it’s like to hold their hand at their bedside in icu. Felt guilty for putting them all through what y going through now. Seen both sides of it!! Please use this site to rant or seek support from people who’ve been there?! All I want to offer is to smile to spite the cituation? A great way to relieve? Good luck and text soon?

GranolaLover93 profile image
GranolaLover93 in reply toskydivesurvivor

Thank you for this.

All the days are blurring into one, and it’s hard to understand what’s happening. Waiting for the days to get easier, but don’t know how long that will take.. x

BlueTheCat profile image
BlueTheCat

Hang on in there, you are doing all the right things.

I was in neuro critical care for a couple of months. I was a bit of a line puller too so had to wear those infernal mitts and elbow splints.... I appreciate they were for my own good, but boy, do they then figure in my dreams/delirium.

The agitation movement could just be her dreaming or maybe living out her perception of what is happening to her. In her mind she could be fighting off hoards of aliens, trying to escape her captors, rowing a boat.. literally anything.

Unfortunately chest infections are quite common in patients who have been on a ventilator for a few days, I developed a few too.

Your mum is in the best place. It is a scary place, but the best place.

GranolaLover93 profile image
GranolaLover93 in reply toBlueTheCat

Yes - I think she’s hating all the tubes and the oxygen tube. She keeps trying to pull them out and even pulled her feeding tube out!

I think the fighting, although distressing, might be a good thing. It shows she can move, at the very least. X

BlueTheCat profile image
BlueTheCat in reply toGranolaLover93

Yeah I pulled my NG feeding tube out a couple of times too. Hence the mitts and splints. I have a memory of sitting up in bed at one point and feeling very proud of myself for getting this irritating thing out of my body ... though I don't think the nursing staff were as impressed 😁

DTBI profile image
DTBI

Very sorry to hear about your mother. I am 58yrs old & suffered a severe TBI 11yrs ago. They cut half my skull off within an hour of my accident & placed me in a coma for a couple of weeks. It took me around 3yrs to stabilise properly, accepting I would never get back to how I was before. Pleased to say I am still with my wife, and when necessary I cope with it by remembering there are millions of people worse off than me.

I believe your mother will recover but it is difficult to judge the extent and the length of time it may take. Patience is essential, and please seek support here or elsewhere when needed. Good luck with it x

GranolaLover93 profile image
GranolaLover93 in reply toDTBI

Thank you for sharing your story, this gives me hope and eases some of my grief x

Jodac8 profile image
Jodac8 in reply toGranolaLover93

I too had my accident at 59 and my son was told the same,the mitts were on me too cos I kept pulling my tubes out .Everything at the beginning when you wake up is confusing just be patient we all come along at our on pace.Five years later I have short term memory issues which I can work round and live with because I have life which is the most important thing of all.Just be as patient as you can which is what my son did for me that was another thing that came from my accident the true meaning of love,good luck to your mum

GranolaLover93 profile image
GranolaLover93 in reply toJodac8

Thank you sharing. How long were you in the hospital? Do you know how long it took for you to become lucid and understand where you were?

Hope these questions are ok - my mum still doesn’t know what’s happening, and it’s so distressing to see.

Jodac8 profile image
Jodac8 in reply toGranolaLover93

I was in hospital for only 6 weeks but I don't believe I was truly lucid till after that,in the beginning in hospital i didn't recognize my son but i did my friend the brain reacts totally differently than what you expect when you reawaken don't put any timings on your mum we all come through brain injuries in different ways the fact that shes off the ventilator is so so good

James1984 profile image
James1984

I'm very sorry to hear what you are going through.

I think the best thing to do would be to pray to Jesus Christ and thank Him that she is still alive. Ask Him for clarity and peace of mind that will help ease your grief throughout this ordeal. Pray for your mother to get well, but keep in mind that it is God's Will and that He works things out for our good in the end.

Graceissufficient profile image
Graceissufficient in reply toJames1984

Amen, James. Let's pray for her.

HopeForChris profile image
HopeForChris

HeySorry to hear this and wish your mum the best recovery possible.

I can relate to what you're going through, went through this 2 years ago with my brother (42 yrs old) who had a TBI. The time in ICU and some time after this was the worse, about 2 months. The agitation, pulling out tubes and lashing out in frustration was painful to see as well as not being recognised. Sometimes my brother did seem to recognise family, or acknowledge voices and holding his hand up asking to help by taking off the mitts.

I was constantly crying and holding back tears when at the hospital. The shock and grief is naturally intense in the circumstances.

The recovery journey is long. Take it one day at a time and be grateful for any little improvements, they should come eventually but every TBI and recovery is different. The memory loss was severe with my brother initially but slowly, he started remembering. His speech is still lost, reading and writing too but he understands and has awareness. He still gets confused but I constantly see improvements and trying to relearn where needed.

Keep strong.x

GranolaLover93 profile image
GranolaLover93 in reply toHopeForChris

Thank you for your message. It’s really helpful to know you’ve been where I’m at now - it’s so heart wrenching to see her like this. She screwed her face up in pain yesterday and tried to hold her head, and seemed like she was trying to point to her mouth to say it was dry. When we wet her mouth, she seemed to nod. I’m so exhausted I question if I’m seeing things or not, but I thought she smiled at me and the nurse thought so too.

Every day feels like a living nightmare, just want to see her better x

GranolaLover93 profile image
GranolaLover93

UPDATE:

Today is day 5, and when we got to the hospital, she was with physio and in a chair?!

She was extremely confused and her eyes are very unfocused, but when I got there she smiled and tried to say my name. Her speaking is hard to understand, it’s alot of nonsense and grunting. But I asked ‘do you know who I am’ and she focused for a second and said yes you’re my daughter. And she’s still trying to pull her tubes out - but when I asked ‘hey mum can you touch my face’ she reached out to touch my cheek (although her movements are erratic and she almost poked me in the eye).

Surely this is good news? She hasn’t spoke before and she’s still seemingly very mentally confused and can’t focus or hold a conversation or remember much. But I mention our cat at home and she tries to smile. And I ask her to pray with me and she tries to mouth the prayers.

James1984 profile image
James1984 in reply toGranolaLover93

I'm so glad to hear that! Both mum and daughter and reunited. Just the fact that she can smile and remember you must ease a lot of the heartache. I hope she continues to get better and you can both cherish your moments together.

BlueTheCat profile image
BlueTheCat in reply toGranolaLover93

Great news.. .certainly good progress 😀

HopeForChris profile image
HopeForChris

Hey Yes, this certainly sounds like good news, wow.!

Showing photos is useful and lots of sleep is what the brain needs to help recovery.

Keep us updated.x

GranolaLover93 profile image
GranolaLover93 in reply toHopeForChris

Thank you, it’s so difficult but I can see a small glimpse of her in there.

Let me know if you have any other tips for what I can do for her now, I was thinking of spraying her fav perfume on her scarf and asking if she remembers it, etc

GranolaLover93 profile image
GranolaLover93

Another UPDATE:

- things moving much slower today, although I know it’s up and down. We bought some photos on and she recognised one or two briefly, but then got very overwhelmed and stressed.

- she still seems to be extremely cognitively impaired ie unable to focus for longer than a few seconds, unable to respond in proper words and losing where she is or who we are very quickly.

Consultant said that this is a long process, and that usually it takes 100 days for most of the acute recovery to happen. It’s day 6, so I know I must be patient.

She has quite a bad chest infection that’s stressing me out.

Keep her in your prayers, it’s all so difficult rn.

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