Feeling Sad

[123Bereft]

My beloved partner has been through the mill these past 5 weeks and I need some reassurance. He went in for elective surgery in a brain aneurysm, suffered a stroke during surgery, had two further surgeries for bleeds and clots and will be, tomorrow, two weeks out if an induced coma. He is my soul mate and my best friend, we were inseparable. I have managed to see him a few times, but it feels like there's no one there, he stares vacantly, there's no reaction to me being there, he doesn't move and has no speech. The only thing he does is make facial expressions when he doesn't like something. He is breathing, all be it with CPAP assistance, and his right side brain and spinal cord are unaffected, people keep saying its early days but his consultant didn't seen very hopeful of his future. My question is, has anyone experienced anything similar and resulted in any sort of livable life?

[Lovinglifegirl]

Hi Hun

I don’t have experience of this and cannot imagine how difficult it is seeing someone you care very much about going through this . What I can give you is support and if there is anything you need to speak about please message me . Sending positive thoughts your way xx

[123Bereft in reply to Lovinglifegirl]

Thank you, I am finding life tough at the moment, I left an empty marriage of 24 years to be with him and it really feels like I don't deserve happiness. I get anxious every time I call the hospital because I am desperate for hope.

[Lovinglifegirl in reply to 123Bereft]

It’s difficult but you do have to be strong hun . Have you tried to get carer support via GP or contact headway to be referred as they are amazing x

[Kathykathy]

What seems a dire impossible situation now always has hope. Recoveries are long and changes inevitable, I had a burst brain aneurysm, and 2 eye haemorrhage s leaving me blind, but after 2 eye ops had some sight albeit defective and distorted even now. Hard work and determination is unavoidable in your partner's recovery with hard day's. But the human body does have an amazing capacity for recovery from what seems impossible. The old him has not totally gone and you will see on his journey parts of him still shining through.The events have been traumatic and the body needs to recover, patience will be needed . No one can say how much recovery or how long but how he is now is not how far he can go which can be a very long way from these first month's. A quality of live is achievable even if changed, but new discoveries and directions can present something good too.Tubes, ventilators, operations, comas, speech, memory, exhaustion were all mine too but I've created a new future even been dating a guy for 2 years post traumas. I wish you strength, hope, patience and good fortune in your journey. Remember you too, this has been your trauma and change too, x Kathy x

[123Bereft in reply to Kathykathy]

Thank you, your reply has given me a little hope, I wish you all the best xx

[cat3]

It's a testing time for you I know. But the none-committal stance of consultants is standard practice as they're unable to foresee the outcome of any brain injury owing to the uniqueness of each and every case.

My family recalled those weeks of uncertainty as gut wrenching, especially as no one would offer any information other than "It's still early days". It still saddens me to think of their fearfulness during that dark period.

Your partner's brain will be fighting to restore function whilst recuperating and recovering from the contamination by the bleeds. But because of its delicate and complex nature the process is extremely slow.........and of course imperceptible to onlookers.

There may well be more waiting required m'dear so in the meantime take care of your own health and keep us updated with your man's progress. Sending all best wishes for signs of improvement soon. Cat x

[123Bereft in reply to cat3]

Thank you for your reply, I will indeed keep you all updated, I need all the support I can get.

[Localhero]

Hey 123Bereft , I haven’t been through this kind of situation, but I just wanted to say I was thinking of you. He’s your soul mate. Of course you feel awfully lost while he’s in this state. But thank God he’s got you! At a time when he can’t advocate for himself, you’re there.

I don’t know if it helps, but in situations of loss or massive uncertainty that I’ve faced, I’ve tried my best to look after myself, believing that if I’m not strong, I cannot give my best support to someone else. It’s hard right now with COVID. But perhaps ask your GP for an urgent referral for counselling. Better still, if you can at all afford it, is pay for it yourself. Eat well. Try to get as much sleep as possible. Cry if you need to. You’re only human, and neither he nor you deserve this. But this is where you are.

So, feeling all the feels for you. Let us know how you’re doing!

[123Bereft in reply to Localhero]

Thank you, I've certainly done lots of crying. I am looking after myself and I have lots of support. It's good on here to get help from people who have experience of my situation. Take care.

[Gela64]

Unfortunstely I know what you are going through -utterly traumatising. I hope you can reach out to friends etc as you need to develop a lot of patience.. my husband had 6 cardiac arrests associated with a heart attack nearly 5 years ago and the early days, weeks of coma, doctors talking about vegetative state etc nearly did my head in. After 2 months in hospital and another 2 months of rehab he was able to come home and he keeps saying he is enjoying being alive. Yes he can talk well, feed himself etc but he cant read and write or problem solve. So I have to do everything. Your situation may well turn out differently and as other have said the brain can find new pathways. Please please look after yourself because you need to keep up your resilience in the challenging months to come. Best wishes from Down Under!

[123Bereft in reply to Gela64]

Thank you for your message and kind words.

[Hidden]

Not the same, but similarly my dad had a poor outcome from his op with a hypoxic brain injury and was in a coma for a month or so. I’m vague about how long it was because it was such a slow wake up. After 3 weeks he opened his eyes and squeezed our hands but then disappeared again for another week. The wait was awful and the consultants were non commital if not downright negative. He wasn’t expected to survive, then they felt that he wouldn’t get very far if he did and every question of future was met with a shrug. It took a good 6 months for dad to come back to us mentally and while he has all the symptoms of brain injury he is improving day by day, even managing to nearly stand for the first time yesterday and that’s nine months post op. It’s a very, very long and slow road and you will still be experiencing grief and shock from such an unexpected outcome, tinged with moments of euphoria when something promising happens or someone says something positive. It’s a rollercoaster I’m afraid and the hospital won’t want to give you hope as they simply don’t know. Trust that he is in the right place, make sure you take time for yourself and look after yourself with people you can talk to. Try taking his favourite music on an iPod with some earphones and make sure you wear your usual scent when you visit and just talk about the everyday stuff that’s going on. It’s the little things that can make a difference and you’ll feel as if you’re doing something. Most of all try to be patient and always have hope. Take care of yourself. Julia x

[123Bereft in reply to Hidden]

Thank you for your reassuring message, he does love music so I could sort that, I'm not allowed to visit, although I've seen him 4 times, I really hope that I can feel as positive as you in 9 months, I know it's a very long slow process. I miss him more every day. Take care.

[Hidden]

That must be incredibly hard, I had imagined that things had relaxed a little for critically ill non COVID patients. To not be able to hold his hand and be with him through this must be heartbreaking. You’re in my thoughts x

[123Bereft in reply to Hidden]

Thank you, it is the hardest, not being able to see him yet knowing that being with him would have a positive effect on his recovery.

[EK86]

Hi, my mom had a stroke during a procedure. She was exactly how you described it, just staring into space when she woke. We were told she had significant brain damage and to not expect much more. They even put do not resuscitate on her file and the neurosurgeon explained it would be kinder if her heart failed and she passed away as she would have no quality of life.. Two years on she is very much awake and at home being cared for by her husband. Her recovery has been very slow. It is tough don't get me wrong, in a lot of ways she is not the person she once was, as she has no use of her right side and her speech is effected. But we are all so grateful for her still being here.

Hope is what kept us going. X

[123Bereft in reply to EK86]

Thank you for your reply, it gives me some hope.