How to manage my own life with the unknowns of DM’s brain injury?

[KolaKoalaKan]

2 weeks ago today my DM was ploughed into by another driver who didn’t stop at a give way. She suffered a massive bleed on the brain, miraculously survived a craniotomy and has been in intensive care since. She managed to come off the ventilator on day 4. Decisions have been made to continue giving her non-invasive treatment like antibiotics and oxygen, but she won’t be given any invasive treatment, like CPR, if needed. But she’s not really waking up. A few days ago she was awake a little - insofar as her eyes were open and she seemed to recognise me. She tried to say some things but it was incomprehensible.

What I’m now struggling with is that 2 weeks in I have to start planning for the long haul. I and my sibling spent the last 2 weeks living in her house (DM is 3 hours from where I live and 5 from sib) getting on top of her affairs etc and then at her bedside. We’ve now got the house to a stage we can lock it up and house insurance are happy (we’ve had to remove a lot of stuff which feels horrible). I’ve got to be at home for my family and work. There’s also so much to do still from afar with mum’s affairs before we also add in the personal injury claim which we’ve been advised to start sooner rather than later to make sure there will be interim payments for any necessary rehab.

But how can I focus on normal while we don’t know if she’ll survive the next few days? Or that she might wake up and be frightened again? And the not knowing of if she survives, what will the brain damage look like? What life lies ahead? The unknowns are paralysing me. The staff are outstanding. I have no doubt she’s being exceptionally well cared for. But how can I do ‘normal life’ while we are in this limbo of unknowns? I’m exhausted but have a massive day of work ahead and can’t seem to get my body cooperating with getting up - I feel wrong to be going back to my everyday life.

I had no idea which category to post this in…

I am so sorry

Do you have a partner? Children?

This is a really difficult stage with brain injury, because the initial "survival" phase is so draining and you're absolutely right in that you just have the unknowns and the profound shock and horror of a life now changed - it sounds like you haven't had a chance for your head and heart to catch up with all the organising.

Your mum is so lucky to have a family who has rallied so quickly, but you might need reinforcing yourself now, the "got to's" are a real trap - if you can take a step back - what do you need right now? You might want to be reassured that your kids are ok, that work is ticking over, that the house isn't going to implode with laundry - but that's not truly what YOU need.

The future really is unknown, so all you can deal with is the hear and now, starting with yourself. I'd say taking a short period of sickness leave for the shock, or reduced hours/compassionate leave would be a good idea and something to discuss with your manager - are there any other family members who can lead on your mum's medical arrangements?

Hi @KolaKoalaKan May I suggest that you meet with the hospital social worker? They will have seen this kind of thing before and might be able to help.

I'm sorry this has happened. I know you want to "do" something and planning for the future seems productive but, kindly, I don't think you can make zny plans until you know what state her health is in. Waiting must be hard. Ask the doctors for advice on what you should be doing or where you go for advice and support.

So sorry to hear what you are going through. There is a wonderful charity called Headway who provide lots of free information.

Ah OP I am sorry that you and your family are going through this. I hope things work out well eventually.

I'm so sorry. The reality is you can't really plan. You need to tell your work and if at all possible take (more) time off if possible.
Trying to just return to full working days 'overnight' is unlikely to be particularly productive for anyone tbh, But I appreciate you may have no choice. Be as kind to yourself as you can, and pace yourself as best you can.

Please get in touch with headway, they've been a hugely helpful resource for us. https://www.headway.org.uk/ Helpline: 0808 800 2244

Thank you so much everyone for your kindness.

@Queeneel - yes I've got DH and 3 kids (all ND teens). He's been holding the fort at home while I've been at DM's.

@Timeforabiscuit - That's spot on - my head and heart haven't caught up at all! I don't think I've ever been so busy. Every day has been a case of trying to get DM's house and life secure and runnable from a distance, then visits at the hospital, trying to navigate this whole new world of police investigations, PI claims, keeping friends and family in the loop etc. Unfortunately, I really can't take any more time off work. I'm self-employed and if I don't work, the money literally doesn't come in. I've managed to push most of my work from the last two weeks into this week, so I've got even more on my plate. As for other family members, it's just me and my sister. My dad died 18 months ago. I've managed to get a relationship going with a few of her close local friends and they are helping where they can.

@Fraaances DM is in a major trauma centre hospital and as such they have this fantastic thing called the Major Trauma Signposting Partnership. They've had us in touch with Citizen's Advice about what to do practically, plus they have a nurse coordinator who helps us understand the ICU stuff, and they've put us in touch with trustworthy PI lawyers etc. It's more the emotional 'how can I carry on my normal life' when my DM is fighting for her life, and what life will it be if she survives? I feel guilty and distracted.

@ZenNudist We've been 'doing' a lot of doing! It's these unknowns. I know no-one can predict with brain injuries. The doctors have been so clear on that. I think I just don't cope well at all with unknowns. I don't know how to plan my shopping to feed my family today when I might be called back to the hopsital, etc. I can't quite explain. Everything feels so artificial and false and wrong.

@1457bloom and @Elleherd Thank you - I've spent so much time on the Headway website. The Major Trauma Signposting Service have also just put in a referral for someone working for Headway in the hospital to come and talk to me/phone me at some point. I think it's that I can't sit with these unknowns, and the reality is that no one knows what the next 24 hours look like, let alone the next year. But they say we need to get back to our everyday lives, but I feel so wrong doing that.

@Elleherd The work thing is an issue - I'm self-employed. If I don't work, I not only don't get paid, but I would quickly lose clients, and the market is already tough. It's really stressing me out. It sounds like you've got someone close to you with a TBI too, sending you love.

It sounds as if your Mum is receiving good care and I think from what you've said its highly unlikely she'll be discharged any time soon so I guess you can at least plan for her not needing care outside hospital for at least the next ...fortnight? If not much more. You can stay in touch with the hospital by phone.
I think it's really important for you to focus on getting yourself as rested and capable as possible now. You've had a tremendous shock and extremely taxing time, on top of what sounds like an already challenging life. Now is the time to accept help for yourself, call in favours and generally marshal support for yourself. I know lots of people don't like to post on social media but I've had friends go through awful times and be open about it on Facebook and had a wonderful response even from old school friends they haven't seen for thirty years.
Sending you restful and calming wishes.

@TuddlyCoyThank you so much. We’ve been told that if she survives then we are looking at months in hospital. So it’s going to be long haul. What’s ‘good’ about where she is is that it’s a major trauma centre so everything seems to happen under the same roof - from where she is now down through wards to rehabilitation until she’s ready for community in whatever form that looks like. You’re right, I need to ask for and accept some help. And I think being home is making the emotions catch up.