Just wanna say how incredibly helpful it’s been to hear everyone’s experiences, and kind words as I navigate this nightmare.
You can read the context about in my previous post. At the moment, my mum has now been in ICU for a week. A week since it happened and completely changed our lives.
She has been EXTREMELY sleepy the last 2 days, at first I thought it was good she’s resting and abit less agitated, but it’s now worrying me. She responds now and again to my voice but I can see she’s struggling to open her eyes as she’s so drowsy. She smiles now and again when she hears my voice and squeezes my hand or tries to touch my face (but her motor skills are very poor at the moment), but she seems less responsive than she was 2 days ago.
She has a chest infection that the doctors are now worried about. In fact, the neurosurgeon came yesterday (I hadn’t met him before) and looked through her chart and said ‘this is worrying, elderly people die of chest infections all the time, I would prepare for the worst’. Obviously I was distraught and inconsolable.
I then asked to speak to her ICU consultant and he came with his registrar and they said yes a chest infection is worrying for her age and state, and that is indeed very sick. But that her oxygen levels are stable and she seems to be responding to the antibiotics.
They said all we can do is wait and see, and if the infection gets worse they’ll have to put her on a ventilator which is when it gets very very risky.
Tired of waking up everyday wondering if she’s going to die or not.
Yesterday she was very upset when she eventually woke, she was banging her head with her hands and trying to hit me and my brother.
Support needed x
ps Thinking of going to a Headway London support group on Tuesday, if anyone has any experience with those?
Written by
GranolaLover93
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Hello, my son’s brain injury is a totally different category to your dear mum’s.
I just wanted to share I understand your current stress. You are probably surviving on minimal sleep & then waking to begin another day of worry, wanting & needing some small signs of progress & not setbacks. Your mum maybe struggling but she knows you are there and that in itself will be a comfort to her. Having seen our son battle through so many chest infections etc and listened to Drs opinions (they do seem to give worse case scenarios) it is a very hard place to be. Not giving up hope, keep positivity in your thoughts and deal with each day as it comes - your mum will gain strength from you.
I had telephone conversations with Headway staff and I found them very informative & supportive, hopefully the Headway support group can help you.
Like Nanapal, I also understand your situation. My partner suffered a TBI in May last year and was on a ventilator for approx 3 weeks, also suffering with multiple chest infections. Unfortunately you are on the roller coaster that you didn’t buy a ticket for and it’s going to seem like one step forward, two back for a while yet.
Don’t forget that your mum is probably also coming round from lots of drugs that she was given upon first admission to ICU in addition to the effects of the chest infection and TBI. She is in the best place with people who will care for her despite some of them perhaps not being as sensitive as they might have been.
You are living on your wits, are still going through an incredibly traumatic episode and probably not sleeping or eating properly. All you have is hope so hold on to that. She’s knows you are there and she’s probably fighting to get back to you.
This sounds dreadfully upsetting for you. Your emotions must be a complete rollercoaster of turmoil. Hang in there, I may not be by your side, but I am with you in spirit and sending you support and strength to get through this.
Has anyone mentioned doing breathing exercises to help calm you mentally? This will not only help with keeping your emotions in check, but also help your body’s reaction to the emotional trauma you’re going through. I was doubtful at first, but it does help.
Just keep up what you’re doing - holding and stroking your mother’s hand when she’s happy to be touched. Does she like to read? Read to her or sing gently. Chat about usual things, she can hear you and your presence is a great source of strength for her.
Make sure to have the doctors tell you everything (outside her hearing) that’s happening to her and what they’re doingand why and how it helps her. I’ve found that they are so intent on what they’re doing that they overlook communication with relatives (and patients). Knowing is strength. Strength helps you to deal with what’s happening.
Rest when you can. Take time out, a hot drink, a different environment and breath. 🫂
The lots of sleeping is normal and good, she needs it for her brain to heal. She will probably sleep lots and lots for months. I am 4 month in from a really minor injury compared to hers and still sleeping at least 10 or 12 hours a night, often more, like being a teenager again.
I also felt as though it was getting worse in the first two weeks. New symptoms show up bit by bit in brain injury, it seems different from any other. Then it began very very slowly to improve - sometimes one step forward, two back. It will be very slow. Lovely that she is managing to say she loves you through actions though.
Really some consultants can be sadists. The ability to detach is essential for them, and a touch of arrogance seems to be helpful coping with the job, but they really need training in communication.
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