Confused and Terrified

[Chris1082]

My husband had a cardiac arrest, one month ago Wednesday.. He was down for 30 minutes... And he was hypothermic treated for about a week... He is now in a vegetative state, although, there is no doubt in my mind that he hears me and is responding very subtly to me and very few people other than a couple of nurses would agree but are still seem almost afraid to say that they saw it... About a week ago he began to do what they call "storming", elevated heart rate, posturing and sweating profusely... I read online that some feel this is a stage in recovery but others feel it is getting worse.. Doctors tell us that he will probably never come out of this and if he does he will be severely disabled and never walk or talk and have no quality of life... They are encouraging us to put him in a home or just let go of him even though he is no longer on any life support other than feeding tube and trachea with only the oxygen mask... I am very confused and terrified... Need words of advice and encouragement...

[CJDA94]

Dear Chris1082, I'm so so sorry to hear about your husband. Such a sad situation and a time when you need lots and lots of support so I'm not surprised that you are terrified. I can't comment on the exact situation your husband is in - but I can say that I was told by a neurologist that there was no hope for my husband (but that was when he was still being totally supported with ventilation etc in itu) and he is now working and driving. Every brain injury is different but obviously doctors can't see into the future but from reading lots of posts on here - they do always er on the more negative side. Have you been in touch with Headway? If I was you I would phone their helpline because they will be able to answer your many questions and I'm sure offer you some support. I'm sure you'll get some more answers on here soon - it is a very supportive forum. Look after yourself - its hard to think about caring for yourself when you are devoting yourself to your husband but its so important. Take care xxx

[razyheath43 in reply to CJDA94]

i echo that reply, welcome to us, and if you feel you are not ready to loose hope then dont! and yes take care of you

[GT500]

Hi Chris,

I find it difficult to even read what you're going through, it must be mentally exhausting. Keep using this site for support, there are plenty of people that will love to help you.

Stay strong for hubby, get answers from experts and draw a conclusion from it.

[Ecojackie]

So sorry, but don't lose hope. I was in a rollover car accident last year that resulted in a brain stem stroke and the kind of brain swelling and bleeding they usually only see in an autopsy. I was unconscious for about 6 weeks and fed intravenously. I have no memory of that time. My wife visited every day, all day, and talked and read to me. Then I spent 2 months in a rehab facility and now I am home. The doctors didn't know if I would live. Just be there for him and have hope. Our family and friends helped immeasurably. Good luck.

[Chris1082 in reply to Ecojackie]

Thank you... This group really has been a source of support and hope... Glad that you have made such a great recovery... And everyone says that only time will tell but I think the not knowing is the hardest... I know that we have a very long road ahead of us.,. Thank you again...

[sca2013]

Dear Chris1082, I am very sorry this has happened and yes I'm sure it is a very confusing and terrifying event for you. I'll talk with you from my perspective as I too survived cardiac arrest and a grand mal seizure. For one with a brain injury, I am considered high functioning. What this really means is that I function better than many who have brain injuries. It also means I am more aware of all that I can no longer do, which has been highly frustrating to me as well. So one would think oh you must feel lucky to have survived that and be alive. My response to that is no I do not feel lucky to not be able to provide for my family, miss out on doing activities with family and friends as I am always too fatigued and sensory overloaded to actually be able to do them and enjoy them. I can't find words, memory doesn't work worth a crap, my wife is now my caregiver and has to give up things that I don't want her to have to give up. The list is pretty much endless that way. For me quality of life is so much more important than quantity of it. I can't tell you how may times I've thought it would have been so much better and easier if I had not survived for everyone concerned. And I keep on now doing everything I can to make my quality of life as good as it can be, becasue I am still here.

One big thing that influences me this way is what I experienced during two near death experiences I've had and that was the fantastically wonderful peace, comfort and love I experienced while I was on what I'll call the other side. No suffering at all.

One of the hardest things about a person passing on is for the people who are still here missing the person they loved and cared for. Think about this too, if your husband does survive, he most likely will not be the same old person he used to be. There will be parts of him that no longer exist. It is as if the person I used to be actually did die and what is now here is the new lesser me, requiring all kinds of care and having a much less quality of life.

A few years ago my brother in law suffered a massive heart attack and the doctors advised to let him go due to the widespread damage. His wife not wanting to lose him decided to do everything to keep him alive, which they did. Prior to this he was a very athletic physical person that could do anything. Afterwards he could hardly walk, developed all kinds of additional health problems, Parkinson, etc. He died about three years later. His wife admitted if she had it to do over she would have let him go, as his quality of life he and she had after surviving was unbearable seeing him have to suffer like that.

I guess really a big part of the decision has to do with your beliefs about what happens after we die. If you believe in life after death, it is easier to let him go. If you believe it is one and done then you're probably gong to want to hang on for as long as possible.

Follow your gut instincts and intuition as to what to do. I hope I haven't been too blunt. I do care. Please feel free to contact me if you want to talk further about this.

[Chris1082 in reply to sca2013]

Not too blunt at all... And thank you so much for your reply... And knowing my husband, he is going to feel very much the way that you do... At one point while he was posturing and looked as though he was in complete agony, he looked at me and I swear that he mouthed the words "help me"... I thought I was going to be sick... If I had known and understood all this at the time of his cardiac arrest, I would have told them not to resuscitate him... I am glad that you have made progress though and I am sure you will continue to... I have read that sometimes it takes years... And to give you some perspective of your wife's willingness to care for you and give other things up, don't let yourself feel guilty or ashamed... Every day I tell my husband that we will get through this together... What ever it takes... I truly do love him.. He is the love of my life and if I could trade places with him, I would even do that... So don't be so hard on yourself... You are loved very much and together you will get through it, what ever it takes...

[sca2013 in reply to Chris1082]

Thank you. I think you may have helped me more than you realize. I wish you and your husband well on your journey.

[Dazedwp]

Hi chris

I have gone through something similar about 6 months ago. I was out running and had a heart attack that led to cardiac arrest. I was in cardiac arrest for about 15 minutes.

I spent two weeks in a coma. The doctors also prepared my wife for the worst ( I think they do this as default). But I proved them wrong and woke from the coma.

I am now busy with occupational therapist and have managed to recover pretty well. The people on this group have been very supportive towards me so take comfort in the words here

I can only but wish you and your husband the best. Don’t give up hope. I am a good example of what can happen. If you need any help or advice feel free to reach out. I have experienced the good and the bad of the recovery ( and still busy with it )

[Chris1082 in reply to Dazedwp]

Hi Daze.. Thank you so much for your reply.. And this group has been such a great help and source of inspiration... Were you ever in a vegetative state or did you just wake up from coma.. My husband is in a vegetative state but he shows some signs occasionally that he is hearing and responding.. He has also gone through what they call storming and now sometimes he postures pulling his arms in, fists closed tight and he looks as though he is trying to scream out in pain and always calms and relaxes after being given Tylenol for pain... It is the hardest thing to watch..

[Dazedwp in reply to Chris1082]

Hi chris

I don’t have any memories of this. Only what my wife told me.

I believe for the two weeks that I was in the coma I was not able to communicate at all. I did eventually wake up but this was after a few attempts to wake me.

I believe I also had my arms and hands pulled in. I know this really upset my wife

I guess all I can say is stick in there. My prognosis from when I woke up was really not good but I have managed to beat the odds. I hope your husband does the same

Best of luck!!

Willem

[jayne_h]

Hi Chris, Don't give up hope. Headway are great as are members on this forum and you can also get booklets to understand more of what is going on. Dr Diane - drdiane.com - has a book on brain injury but it's more geared to concussion and similar, but it might help you understand brain issues.

I hope your husband improves very soon.

J xxx

[Devaiur59]

Hi chris1082,

My dad had cardiac arrest about 14 months ago now, and was in a coma for about 11 days, and he wasn't responding at all and doctors told us he would probably never wake up and if he would he would be in vegetative state.

We eventually got him to respond in the 11th day by sticking his tongue out, and he continued to do that a couple of times on demand over the next days after that.

We found out that he was on a drug called rispirodone, and my grandad, my dads dad was allergic to this so we asked for my dad to be taken off it, as it seemed to drug him up too much and he literally woke up properly hours later. Thank god my mum realised.

He drifted in and out of a come for at least another week, and then started responding more and more and waking up more as the days went on.

At this point he still had to struggle to be weaned off the oxygen, then about a week later, started slowly eating puréed food by himself and slowly made enough recovery to be transferred to another hospital for an icd, then home

Since then we have realised that my dad was one of the lucky ones to still be alive, but that he doesn't have the capacity to know where he is half of the time. He does have parts of the day where he's aware, and he can walk, talk, run , dress himself, and still helps out now and then in the family business but he is definitely not the same person he used to be.

He does say similar things, and if you catch him in a good mood, he can still give good advice and does lead a good quality of life , but he has so many behaviour problems now really.

He can be quite aggressive due to the brain injury, and even tho he is 60, he is still a very big strong man so can be hard to deal with. He can be very possessive and other things but all this still obviously is better than when doctors told us to prepare for the worst as he had no chance.

I remember the days well when my dad was trying to wake up and trying hard to come out of his coma, and him waking up and panicking and having to be calmed down and re sedated again and his face as you said about your husband, looking in pain and I used to cry and cry at watching this , and I am so grateful that he come around.

I used to swear by giving him foot massages to stimulate his senses to make him wake up, and used to do it constantly. I think there is still hope, and I really feel your pain through this hard, painful time, and I pray that your husband will be one of the lucky ones too. My thoughts are with you x

[Cj-195]

Chris1082. You are in my thoughts. Phone the HeadwayUK help line. X