This is my first time here so it feels weird for me rn, bear with me please. I dont know if anyone is going to read this /be interested, but i have no one to talk to in real life, and it would be nice letting it out for once.
Anyway, my grandpa is in a coma. He had a serious brain injury, has had various surgeries… Its been a roller coaster of constant improvement, then deterioration. Just a few days ago, he had another surgery, this time done differently. After this one, its only been getting worse. After he woke up he was very agitated, he tried to detach himself from all the tubes and machines, resulting in them having to sedate him. Since then hes been getting epileptic shocks and also developed pneunomia. Hes been going in and out of consciousness, although hes mostly out. Just today, they had to intubate him to a ventilation, and hes having problems with his heart as well… I havent seen him once during his stay in hospital, mostly because they have very strict visiting hours but also i think my parents would prefer me not going. But i feel very bad about it. Everyone is either crying/on auto-pilot mode/stressed and tired.
Anyone has gone through something similar? Or any tips on how to cope?
If youve read the whole thing, i love you, bless you!💓 If you havent, i dont blame you tbh😀
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imconfusedandscared
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Hi there, I’ve not been in your position, more in grandads, but just want you to know you have come to the right place for support. There are a lot of nice people on here who will help you if they can, who have had loved ones in similar positions. I hope grandad continues to fight through, he’s obviously got a family that loves him very much and fighting for him, lots of luck and love Alice xx
Yes, grandpa has always been very strong and i believe in him as well, although i question my faith seeing everyone being so negative and doubtful. I get them, but the best we can do is hope for the best right now.
HiI’m sorry to hear about your situation and it must be stressful for you and your family.
If you’re not able to visit your grandpa, maybe you should write a very simple note to him to show that you’re thinking of him and maybe your parents could read it to him when they visit.
Good luck, try to keep positive and do keep posting here. Helen
I have been thinking about writing him and then slowly find courage to visit him if possible, although i’m scared of what i might see?? I don’t know, it’s a very confusing time for everyone right now and we can never be too sure about anything these days so…
Anyway thanks again, i’ll try to keep things updated!
Hi, welcome to the forum. There are people here that have or are going through similar. I appreciate how powerless you must feel. You say that your parents would prefer you not to visit, speak to them how you are feeling. I know that this is an emotionally charged situation, where everyone is struggling to hang on by their finger nails, but so are you.
It's been many years since I have sat vigil at a bedside, but I remember the emotional toll it took on leaving, and the stress of having to repeat it, sometimes with my worst fears resulting. But I wouldn't have avoided it. Sometimes you have to be there to process what is happening.
If you find it difficult to talk to your parents about this, is there a relative or close friend that you can talk with that could help you, or explain it on your behalf.
You could talk to a third party like Headway, contact details are pinned to this page, or to the PALs team at the hospital.
Someone will always read what you write, and as you are finding, will respond. We all arrive here for our own reasons. No one is ever ignored. We are all here for you.
Wow, thank you so much!! I am truly pleasently surprised with all the replies and advices. I’m not exactly the type to open up and talk about my feelings, i feel uncomfortable and awkward when i do, even though i know it’s normal and don’t find it awkward when others do it. But i’ll try, i know it’s important, especially in a situation like this. Thanks a lot again, sending good energy and strength!
One day at a time, yes write him notes as has been said, some hospitals have an email service where they print out your emails and read to grand dad, even in a coma, I got to visit my son in coma and had a habit of stroking his arm, why? I don't know, lol but he still remembers it, he still has all the emails I sent as he got covid and I couldn't visit, and I felt like I was doing something by writing an email everyday just about my boring mundane stuff lolGood luck it is yuk
Hello! You are not alone! My husband had a severe traumatic brain injury on 5th September 2020. My life and my daughters’s life was changed over night. Yes it has been a rollercoaster of slight improvement through rehab and steps back due to numerous infections. Yes reading posts on this forums has helped me cope. I won’t repeat advice others have given especially Pair of boots whose inside knowledge and wisdom are always precious ( although he is not aware of it). Keep on airing your concerns on here and people will reply. Best wishes
Im so sorry for what happened to your husband, sending lots of good energy and strength. And thank you so much for the words of compassion, it helps knowing im not the only one going through this.
Hello and welcome m'love. This is such a frightening time for you and you've come to the right place for support. Your grandad's agitation is all part of his injured brain's attempts to make sense of where he is and why. It's a natural response for us to pull out tubes or resist to anything unfamiliar/restrictive ; I had my hands bandaged to prevent my constant interference.
I hope that doctors have control of his pneumonia and that there are better days ahead for him, and for all of you. But maybe you could give us a timeframe for your grandad's injury ? It might be helpful for us here, as time plays a crucial part in developments.
First of all: thank you for your kindness, the advice, and sharing your personal experience, you can’t imagine how much these words help.
As for the timeframe: none of us are actually sure.
What happened is that he fell off his bike, wasn’t wearing a helmet even though we told him x times to wear one. He hit his head in that fall, brushed it off and went on… maybe a few days/weeks later he fell again without his helmet… This was all in March/April? In June grandma told us she’s been seeing him having trouble parking his car (he’d been parking effortlessly in the same spot for 40+ years, so it was unusual) and sometimes he’d walk and talk a little funny and she mentioned the falls. After that we took him to the hospital. They discovered he had brain hemorrhage.
After his first operation he was sent home, where he fell again. Also he was supposed to be resting, give the brain time to recover-he didn’t. He’s the type that can’t sit still.
Two months later now, things weren’t getting better after more surgeries so they decided to perform a completely different surgery, which had left him in a worse state, leading to where we are now.
Thank god they had discovered the pneumonia in a very early stage, giving him antibiotics. Now, they are talking about some other infection and are trying to find out what it is.
Sorry if this is long, i know you didn’t really ask for a storytime😀
OK, so March/April (4-ish months ago) is still early days in recovery terms, especially considering your grandad's extra health issues and falls. He sounds like a force to be reckoned with and it's a shame he was discharged so soon, otherwise he could've stayed safe and the next fall could've been avoided.
He really needs some intervention to slow him down, whether that's in a hospital setting or by medication means. Weeks, maybe months, of recuperation is what's essential after brain injury ; I hope your grandad's dynamic spirit can be tamed for long enough to allow that process.
With brain injury there's often dis-inhibition ; the belief that having survived means we're perfectly fine. It takes months for most of us to accept our new selves and to adapt to a different lifestyle.
It really is early days m'love ........hang in there & look after yourself.
Hi,Unfortunately he believed that since he’s been discharged after the surgery it meant that he was free to live his life just like he did before and not need time to recover. Essentially his stubnornness has led him to where he is right now.
The doctors have actually discussed putting him in medically induced coma before, for the sake of complete recovery.
I guess everything happens for a reason though…
Thank you so much for the support, it’s really helping a lot!
HiI can understand exactly how you are feeling.my husband had a massive stroke and numerous surgeries on his brain back in May 2020, right at the beginning of lockdown so no visits for a year. During the initial few months you are on autopilot and constantly waiting for news. You really do feel helpless but we have some amazing drs and health care providers who will be doing their best for your grandad.
My husband fought through and is back home,but it can be a lengthy journey so try to take a breath and maybe have a chat with your parents about how you are feeling.
Hi, thank you for the calming words, the wishes, and for sharing your experience Also very happy to hear your husband made it through the stroke, you are both amazing fighters.
For me, waiting for news is one of the worst parts, you know, i’m never sure if i really want to hear it.
I have actually been pretty opened about it with my mom, which has helped. Also hearing my dad talk about grandpa (his dad) is helpful, seeing he’s positive and hopeful about it.
Thank you once again for sharing and for the advice, it really does help knowing i’m not alone!
Hi. Hope he gets better as I did. I had many problems post surgery, pneumonia which put me in intensive care for 7 weeks, whilst there I had sepsis, e-coli and a tracheotomy. Because of the trachy I came out onto a high dependency ward where I was told someone would come round eventually to remove the trachy. When they did I felt like a fish out of water and couldn’t breathe, my room quickly filled with ENT doctors and nurses, suddenly I felt a rush of air as they re-inserted the trachy. I was told they didn’t know why it had happened but would need to investigate. I then went for two exploratory ops resulting in being told I needed a full thyroidechtomy. I had that and was released seven days later after five months. I was put on yearly MRIs and was told last year that the piece of the tumour they had left had grown out of proportion to expectations and further surgery was required. I went back in in May last year and was in for 3 days but during the op another tumour was noticed growing. I was put back to six monthly scans and was told on Friday that the new tumour had now grown 1mm and she needed to discuss with her colleagues how they wanted to go forward, either radiation or cyberknife. At least I’m still here to tell the tale. Hoping your Grandad is around for many years to come. Good luck to you xx
I didn’t read all of it but I was in a coma a week and I’d describe it like being fully asleep with occasions when you’re half asleep and you hear talking.
All I can say is to just chat to them like you’re saying about your day as there’s a chance they might be in the half asleep stage and can hear you.
They’re not half asleep but it’s the only way I can describe it.
Yes, as spider says, do talk to him. Though completely blind and paralysed I could hear the nurses talking about me biting down on the tubes so I did it again seeking their attention. Though they did notice, they missed the opportunity to communicate with me. Even so-called “locked in” patients can communicate if given the chance. I have since fed that back to the CCU and ICU nurses.
very difficult to give you any advice. I’m over 20 years with a brain injury. There will be someone who may see your post who has some helpful words for you. I hope you get some .
My only thought is that you are doing something by asking for advice that shows that you are very caring and in need of kind advice.
I was unconscious and apparently went through periods of recovery and then deterioration, just as you have described. What is strange but reassuring is I felt loved and cared for, I didn’t know at the time but the love and care was coming from the ICU team, close friends and family. It was obviously just a felt sense of being loved and cared for because I was unconscious the whole time but I still think back to that. I hope that reassures you? I think that time was the worse time for my family though so my heart goes out to you.
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Also very happy to hear your husband made it through the stroke, you are both amazing fighters. 
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