Handhold/sounding board/whatever *TW critical illness*

[NameChange1412]

Regular poster but have name changed for this.

I don’t know what I want from this thread, I’m physically and emotionally fried and just want to run away and hide from everyone but I also feel like I need to speak to people who aren’t my family or friends and who might have been in the same position I’m in. I have a fantastic support network which I’m truly grateful for, but I feel like I need a bit of extra space to talk.

My darling, wonderful Dad is in intensive care post cardiac arrest, he’s sedated up to the eyeballs and scans have shown that his brain is damaged to an unknown extent. His care has been wonderful and we’ve been given as much information as we need about his condition. I’m struggling so fucking badly because my Dad is the one I call when I’m having a shit time and he always makes me feel better. I miss him so much even though he’s right there in front of me because I know that my Dad as I know him isn’t coming back to me.

I’m an HCP and whilst it means I understand what’s happening to him, I also understand WAY too much and what it all really means. I know what his doctors are telling me and also what they are not telling me.

I feel like my entire world has been bulldozed over and I’m feeling a whole weird mixture of heartbroken, angry, hopeful and practical. I’m also struggling with keeping everyone updated as SO many people love my Dad and want to know how he is, but I don’t have the words to tell them the truth. I dread the phone ringing and having to explain the same horrible shit to someone different, and trying not to be resentful when they say the usual ‘please let us know if we can do anything’ because I know they mean it with all the love in the world, but they can’t do anything at all.

I think I’m going to sign off and try and sleep for now, and hopefully dream of my lovely Dad. If you want to stay with me, please do, I think I’d like the company.

@MNHQ if there’s a particular board for this sort of thing, please feel free to move it, I couldn’t think of anywhere else to put it. Dad is young so doesn’t fit in Elderly Parents, but I couldn’t find a board that best fits my post. Is there a board for sad ramblings? 😣

Just about to go to sleep. Sending you a huge hug xx

It’s morning here. I will be here holding your hand. I will keep checking in. Sending hugs. These hours are the longest.

Just here for a handhold. Try and get some sleep and I hope you have some wonderful dreams about the good times.

Thinking of you all and your dad. I know people have asked for an update but equally they don’t “need” it so don’t feel obliged to keep all and sundry in the loop. People will understand.
Maybe a trusted friend or restive can have a small WhatsApp group if appropriate to share info… but it’s really not necessary to worry yourself over that.
Take care of yourself and much love to you and your Dad.

Oh, love. Being an HCP is such a two edged sword. You understand what is going on, and hospitals aren't so scary, and you know the questions to ask and how to understand the answers. But, and it's a bloody massive but, you are robbed of the luxury of denial. And often denial is what keeps lay people going in these circumstances. Remember right now you are a daughter, not a HCP. Hold your dad's hand. Talk to him about the good times. Keeping fingers crossed for the least bad outcome possible. And really hoping you get some sleep.

Stay strong for your dad.

Sending love, hand holding also x

Huge hugs to you and your family. I've got no advice and nothing soothing to say. I hope others do. But I can relate maybe a little bit. My dad has a brain injury after a fall and he's in bad shape as well in a way that no one else except for my mum and sibling can understand so I have stopped telling people and most people have stopped asking now because there really is nothing they can do.

Take care of yourself.

I’m still here. You are not alone.

This exact thing happened to my dad after a cardiac arrest in April. He was in a medically induced coma in ICU for 4 days (developed pneumonia due to ventilator and possibly aspiration which delayed the wake up) and then they reduced the sedation on the 5th day. He really is the best dad in the world and the wait was absolutely torture and felt like a lifetime however he has made a complete full recovery and is better than he ever was now - not a single lasting effect!

He really is in the very best place and they do the sedation as it works and gives him and his body and brain the very best chance of resting and making a good recovery. Sending you lots of love and well wishes and I'll have everything crossed for you.

We were the same re updates as my dad is so incredibly loved by so many people and my brother used to compose one message at the end of each day with an update on how he was and we would send this to everyone. You are under no pressure to reply to anyone and everyone will be understanding if you feel you can't reply.

Please let me know if I can help at all. X

I managed to sleep a bit last night, tossing and turning but I still slept. We’re on day 4 now, and should have some more results from the tests he had yesterday soon. Thank you for the handholds and love, it’s really appreciated. 🩷

Test results are back and not great. Lots of difficult conversations to be had over the next week, I think. Just taking every day as it comes for now.

I am sorry to hear that. Supportive thoughts.

Sending love, and a hand hold.

My mum is currently in hospital following seizures, turns out she has had a stroke but it took a lot of investigating to become clear. She was intubated and sedated in ITU due to the seizures. She has diabetes and a lot of associated complications and is quite tiny and frail. We were told the worst possible thing that could happen was pneumonia, and it did happen. I am a nurse in the hospital, and I think having that bit of knowledge makes it so much worse. When we were taken into a room to have a conversation with a doctor my dad just thought we were getting a really good personal service, sadly I knew different. It makes it really hard, and then also because you have some knowledge everyone in the family looks to you to explain everything which is not easy either because some things are difficult to say out loud. My mum is doing ok so far, she is on a stroke ward now and making a good but slow recovery but it has been a tough few weeks probably the toughest of my life.

I don’t have any advice, but I do know that on the day we were told she may not survive this I felt all the feelings you describe. People kept saying “let me know if you need anything” and it comes from a good place, but it doesn’t help. The one thing I needed they couldn’t give.

I am am so sorry you are going through this, and I am sorry that today has not brought better news. Take each day at a time, and be gentle to yourself. If you need to cry then do it, it makes you feel grim but it’s better out than in.

Sending love and good thoughts to you, your family and your Dad 💐

We’re on day 10 now and Dad is still with us ❤️

He’s still in critical condition and in an induced coma because he hasn’t taken it very well when they’ve tried to wake him, but they are still actively working on him to get him to a point where they can wake him safely to assess the damage to his brain. I’ve gone through an entire rollercoaster of emotions this week and I’m finding it quite hard to sleep (the best sleep I’ve had is when I’ve been at his side, hugging his arm because I know he’s right there with me)

His care remains excellent, and we are receiving just as much care as he is from his nurses.

I’m sending hugs. It’s morning hello now so I will be here to ho keep you company.

Today we are OFF the sedation 🎉

Still haven’t woken up but today Dad has: come off sedation, been seizure-free, is breathing for himself (!!!) with CPAP support to make sure his breaths are deep enough, a neurologist has been to see him and confirmed that his reflexes are intact. I asked his team if I could look at his scan reports so I could make sense of them and they agreed, he does have some brain damage but it’s small bits of damage in lots of different places, so we don’t know how it’ll affect him until he wakes.

It’s okay that he hasn’t woken up today, he might just need some time, and that is what they are giving him. We’re playing him his favourite music and voice notes from family and friends, and just loving on him.

Some good progress there! Thoughts are with you and your family, hopefully he wakes up soon.

Still here and still surviving ❤️‍🩹

Small steps each day, most have been forwards but we’ve had a few backwards steps too. I’m just grateful for every minute I get to spend with him.

Hi @NameChange1412 how is your Dad getting on now?

My lovely Dad left us this week 😪 it’s been a long, rough and shitty road but he is resting now. I’m heartbroken and just drifting aimlessly around the place, trying to distract myself a bit until I have to do the ‘admin’ part of things.

Thank you for checking in ❤️

So sorry for you and your family.

Oh I am so sorry to hear this sending lots of love to you and your family