In Need of Hope

Hello... Two weeks ago, my partner had a cardiac arrest and is in a coma and not waking up. When he first went in they had him sedated and cooled him for nearly a week. They did an MRI which showed normal and the doctor says that he is responsive to pain. He had started to show signs of waking up but is now having seizures and barely even opens his eyes and is more unresponsive. Today a new doctor on rotation came in, barely looked at him, gave him a pinch on the shoulder and told the nurse to move him to nuerology tomorrow and then to a nursing home. I asked the doctor if he thought he was never going to wake up and he said "he will probably wake up, but he is never going to to independant living again". I am so upset and terrified. I know that I have seen some subtle responses and I should also add that my partner is already breathing with just a trachia and mask. The nurse said that that usually doesnt happen for another week, so everything considering, he seems to be doing fairly well but this new doctor has left me terrified and almost hopeless. Reading your stories has given me renewed hope.

34 Replies

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  • Sorry to hear about your partner, you have to fight for everything, it is very early days to move him into a nursing home, what's happened to rehab ?. Have you been in touch with Headway? They will give you some support and advice. My daughter had a severe diffuse axonal brain injury, not expected to live, hospital for 7 months 6 months of that in rehab is now home walking, talking, eating, memory and mobility improving she is doing amazing, ongoing physio ot etc fight for what you believe in, only time will tell how well they are going to get even the doctors don't know at this stage x

  • Wow... I am very pleased to hear about your daughters amazing recovery... Thank you so much for your reply... This site has given me renewed hope...

  • Hi, I'm so sorry to hear about your partner, my husband had a heart attack 7 weeks ago, he was in an induced coma for 2 weeks and took a further 3 weeks or so to gain any kind of consciousness- he definitely has a brain injury however he can now finally name his son, his cat and talk in sentences although it's rarely making much sense. I was told to start building my life around my 9 year old and that he would never have any quality of life however I have seen real improvements in past two weeks. He is on a waiting list to move to a specialist rehab unit, I have some hope for the first time in weeks. I feel for you it is such an awful situation but do try and look after yourself and keep hope, I'm here if you want to message or chat.

    Nicky

  • Hey Nicki... So sorry to hear about your husband as well... This has got to be the most frightening and difficult thing any of us have to face... And thank you for your reply... Please keep in touch..

  • Hi,

    It's hard to find the right words to help.

    Firstly let me say, you are not alone, don't let this make you feel cut off from others. You and your husband are going through one hell of a challenge and you're there for him. Get answers from different sources about the best care, never just accept the first opinion, ( if my wife had, I wouldn't be here today ) their are many experts around sadly some better than others so get info from lots of sources ( knitting clubs not included ).

    Finally, one of the most frustrating things is that recovery from mental issues quite often takes time. It will feel like forever.

  • Thank you... I am so glad I found this site... It has given me new hope and strength... And I am very happy to hear that you have made it through this so well... Thank you for your reply.. You and this site have given me encouragement and hope...

  • So sorry to hear about your partner and to also hear that you have experienced a Dr who sounds like is lacking any sort of compassion. Don't give up hope - there are many people on here who have been told there is no hope and that further down the line have proved the Drs wrong. I guess they have to prepare people for the worst but that is no excuse for what you experienced. Definitely get in touch with Headway - they should be a great source of information and support for you. Take care xxx

  • Thank you so much for your relpy... Yes... I have decided that today is a new day and I have always said that where there is a will there is a way and I am not going to let one doctor and lousy person knock us down...

  • Some doctors treat people like objects only. And doctors don't know everything. They merely give their professional opinions which is just that an opinion. Meaning they might just as well be wrong in their prognosis. Don't take their opinion as fact ever. Follow your gut instincts and intuition. Take it a day at a time. Wishing you the abilities to deal with this easier.

  • Hi there. We also had a very similar scenario with our (now) 33 year old son who sustained a severe diffuse axonal injury after a car crash in November 2013. We were also told on that first night that there was very little chance that he would 'ever live any kind of independent life again'.....Induced coma for 2 weeks, 6 weeks in Intensive care, five months rehab in a brain injury unit. He took six weeks to eventually 'wake up' with very small signs at first, thumb movements, toe movements. Devastatingly slow for his loved ones but you just have to hang on in there. Nearly four years later and he lives on his own, shops, plays sport, drives his car, starting to volunteer in preparation for work - has just returned this afternoon from a Kayaking trip on the river Thames. He continues to regain new skills. He pushes himself and we support him through his frustrations (which are many!).

    Your partner has given you small signs so try to stay positive (it won't be easy) but do not give up hope. The brain is amazing. x

  • I am so so glad that your son is doing so well... Goes to show that miracles do happen... I have to wonder about some of these doctors who are willing to give up so easily... Someone told me though, not to mind too much about what the staff in intensive care say because once the patient is moved from ICU the staff doesn't ever know what eventually happens to those people... It is so great to have people to talk to who have been through the same thing... It is such a rollercoaster ride from one day to the next and the doctors and nurses don't really tell you much of what to expect...

  • Chris, doctors always give that response to family members of cardiac arrest victims. I'm not saying get your hopes to high, but don't give up. Twenty three years ago I suffered a subarachnoid hemorrhage followed by 6 hours of hypothermia, and a half an hour of cardiac arrest. The hypothermia my have helped lesson the damage, but my injury was still rather severe. I am so very glad that cooled your partner & other cardiac & TBI victims today. Te cold seems to place the brain in a state of hibernation, lessoning the damage.

    He might not ever be exactly the same, but recovery is possible. It largely depends on how long the cardiac arrest was, the parts of his brain that were damaged, and all how fast you can get him into rehab.

    Doctors say that recovery won't occur, to avoid lawsuits, and also to help a persons family be able to accept poor outcomes. Still another reason they tend to right reports that are negative, is because insurance companies usually won't pay for extensive rehab.

    It's sort of a cyclical problem. Insurance companies won't pay for extensive rehab. This prevents injury victims from recovering. When they don't recover, it gives insurance companies more authority to say that injury victims won't recover. This in turn gives them more reason to deny rehab.

    What ever you do, do not place your partner in a nursing home. I've spent time in two, and the care I received was extremely expensive & the quality very poor. Apply for a waiver that your State has. There are two that I know of Comcare, & Independence, in my state of Pennsylvania. The application process is lengthy, but if I was able to apply, on my own, then it shouldn't be too difficult.

    Waivers will allow your partner to stay at home, where you can help them recover. It will also save you some money, and you can hire some temporary rehab specialists. Watch what they do, and ask questions. Soon you should be able to provide your partner wt rehab yourself, if you are unable to get insurance to pay for rehab.

    Medicine has come a long way, from when I had my injury, but unfortunately most doctors aren't schooled in these advances. I include many things in a list of things that have helped my recovery. They include

    1. Quitting my medication through a very slow process called water titration.

    2. Taking Methylcobalamin B12, under my tongue.

    3. The occasional use of Cannabis, for it's powerful antioxidants including THC & CBD.

    4. Exercising at a gym.

    5. Eating healthy.

    6. Yoga & stretching.

    7. Forcing myself to read books again.

    8. Volunteering.

    9. Listening to music often, because it activates many parts of the brain simultaneously.

    10. Getting a pet to take care of.

    Your husband can, and will recover. He won't be exactly the same, but then again 'no one' is from one minute to the next. Change is what we all go through.

  • Awesome information and advice... Thank you... I am so glad that you have recovered so well, although I am sure that it has been a long and difficult road... I am not ready to give up on him so soon... I know he is still in there... I could feel him trying to wake up today... He half opened an eye and I am sure he knew that I was there... Omg I feel so bad for him... I just wish there was something more I could do for him... And it terrifies me to leave him alone with those people... Its like they could care less because he is a lost cause anyway... But I am actually in Canada, so there has got to be programs and services out there who can help... I just have to find out what they are... And thank you for all your kind words and advice... All of it is very helpfull, especially for keeping my courage, my hope and my endurance... Please keep in touch... It truly does help...

  • Recovery from a brain injury is never finished. I am still recovering everyday. I have good days, and bad days, and honestly that is one of the things I dislike most about being injured. The fact that I can never rely on my abilities, because they can change at any time, can be discouraging. Improvements happen much slower for me, 24 years after my injury, but still occur. Although it may seem like now is a terrible time for your partner, "now" is the time that the most recovery can happen. Rest & sleep are very necessary after an injury, but push him to recover, and try new things, whenever he is awake. Directly after an injury, is when the most new synapsis can form, between existing brain neurons.

    If you have any questions, I will try and answer them to the best of my knowledge. This truly is a great community of people.

  • Agree 100%. They thought I wouldn't do a lot of things but have proven them wrong🙃

  • When you were between wake and coma do you remember if you aware or could hear. There are times when I am sure that he knows that I am there. And I am also so worried about what people are saying around him in case he can hear. He looks like he is already suffering so much and sometimes I am worried that he is terrified and panicking..

  • I'm sure that he can, since people who who have been in comas report that they did. Still when a person suffers a hypoxic injury, it usually seriously effects there short term memory, so I am unable to remember. Almost everything that even occurred 6 months after waking from my coma, is 'very' sketchy. I have some strong memories. Still most are not true memories. I've been told what occurred, and that has become my memory. Sometimes I've even confused things that were told to me, and this created some really bizarre false memories called confabulation.

    The day when I awoke from my drug induced coma, my sister-in-law was just casually telling me about a concert she had been too. It must have garnered my interest. When you see him, talk to him as if he is already awake, about stuff he likes, and remain positive. I suspect that a patient has never fully woken up in presence of a negative physician, and this has only reinforced there thinking.

  • There are times when his eyes are open and I know that he is not there and then there are other times when I know that he is.. The doctor and nurses refuse to believe me. I can't stand this doctor. He seems to think that we have false home. We are not expecting perfection but he is telling us that this is about as good as it is going to get.

  • So it is as if you know it at the time but the memory is quickly gone.?

  • All memory is short term, at least initially. Still having good short term memory, involves being able to remember something instantly, no matter how boring or uninteresting it may seem. I think that the reason short term memory is considered more important then long term, is because w/o being able to form short term memories, remembering long term is not possible.

    My memory ability is quite strong today, even though my cognitive therapist told me that my ability to remember would 'never' return. This therapist obviously came from the same school as this doctor. She was trying to prepare me for the worst, and luckily I never considered anything she told me to be correct.

    After injuries, and strokes for some reason directional ability is really harmed. There is a game I play on my phone called Sea Hero. It involves memorizing a map, and then sailing a ship through open water through canals & the other waterways. When I first began, I found it almost impossible, but it is getting easier. They even have a virtual reality version of the game that I would someday like to try.

  • I think that immediately upon waking from his coma, probably remembering anything correctly will not be possible. Soon after my coma, my therapist gave me a test, where she would have a recorded voice say letters of the alphabet. Every time I heard a letter that preceded the one previously, for example O,N - G,F, or Z,Y, I was supposed to hit a buzzer. I did horribly on that test. It was only months following my injury, but that b... told me that my cognitive functioning would 'never' return. She was a lot like the doctor who is overseeing his case. I didn't listen to anything negative she told me. I only listened to positive words, and I think that was the right thing to do. I accept criticism now that I am much more healed, but negativity is the last thing a person who has just had an injury, or there family needs to hear.

  • Hi Chris, I even remember times when I was still in the coma. My husband was talking with my daughter saying he couldn't find an insurance policy I had. And I was so frustrated because I was trying to tell him where it was and couldn't!!!

    Also when I was becoming more responsive I didn't react to the doctors and nurses voices but if a family member spoke to me and asked me to put my tongue out I would. I couldn't respond to the command to squeeze a hand or finger but could move my tongue.

    The family worked that one out not the professionals, they still insisted I was unresponsive until they were shown by my family just what I could do.

    So hang on in there, be creative.

    Janet xx

  • Please make sure that YOU do passive range of motion on him, google it as I was incapacitated for awhile and limbs became very stiff and contracted, then I had to work much harder to learn how to use them again. It is already a hard road but this is something you yourself can do for him to make the outcome better and feel you are doing "something".

    I say "you" because you don't want someone to say they will do this and then don't or they don't do all joints and limbs. You can Google how. It is pretty simple. You will feel like you are doing something worthwhile🙂When wondering ..." what can I do?"

    You don't say if when he had the heart attack if he had any other injuries or what else occurred. Are you able to share more information? Not being nosey but I would like to help as best I can.

    Get some rest, stay strong believe in him and believe in yourself. Big hug, Cindy in NJ

  • I agree, wt Witty. Passive resistance is a must. My sister in law who was a school nurse, at the time of my injury, did passive resistance on my limbs, while I was in a coma. My left hand was completely contracted at one time, but last year I started to learn to play a Ukulele. Healing is possible.

  • Hey Witty... Thank you for your reply and I am very grateful for any information and help you can provide as I really am not getting much from the staff at the hospital.. There is one nurse who explained to me to try and keep his hand and fingers straight so they don't get stiff from clenching them up all the time, so they will be easier for him to use when he starts to get better. He didn't have any other injuries. He is 48 and had already had several heart surgeries to unblock arteries. Although doctors now seem to feel that his heart is fine after they cleared the blockages now again, is the least of his worries. He had a sudden cardiac arrest. He is a fairly big man. About six feet tall and 250 pounds. He was face down on the bed and he was too heavy for me to move off the bed or even get him turned over because he was on the other side of the bed against the wall so I was unable to start cpr before the EMT got here. He was down about 30 minutes before they got his heart started again.

  • You poor things... keep moving fingers, wrists, Knees, ankles and toes up and down, in and out regardless if they were "injured" or not. It keeps the synapses awake and I like to believe will continue those messages to the brain. Don't wait for them to do it, you do it as often as you can. It will definitely not hurt him just do it gently. Plus it will stimulate his sensory endings. You can do this, don't concern yourself with what they think. It's the end result that will matter!💕💕💕

  • I am in no way an expert but correct me if I'm wrong but isn't it too early for anyone to say how someone will recover before they come out of coma? I thought time in coma and early awareness after coma gave some indications of how someone would recover. I would definitely get a second opinion on this.

  • Tell me about it.. I am just so not comfortable with the staff this week... It is like they have all given up on him and are barely even going through the motions... I hate leaving him alone there... The nurse is always off talking to someone and he is in distress or having a seizure or his trachia is full of flem and they are no where to be found... And I keep telling them that I am seeing subtle responses but they give me a smirk and scoff it off.... Grrrr... It is so frustrating and nerve wracking...

  • You'll be smirking back when he proves them wrong. How old are you and him?💪

  • Hello Wiity... He is 48 and I am 51.. He opened his eyes today and I am sure that he focused enough to see me... The idiot doctor was just in and I don't like him at all... He is trying to convince me that this is it... This as good as it will get...

  • isnt there some way you can put in a complaint how they have given up on him and giving you negative responses all time. Ok they may be right this may be as good as it gets. I've no idea but I know I would be more likely to listen if they seemed to be doing their best to help him and acknowledge any positive signs such as opening his eyes.

  • It is as if they have all the quacks on all the same rotation. I am going to start keeping a journal because there has been a lot of things going on this week that are just not right. Last week the entire staff were awesome and warm, comforting and compassionate. This week they are cold and calais and behave like he is a lost cause and a burden. Grrrr... I keep telling them that there are times when his eyes are open and I know that he is not there but other times when I know that he is but they brush it off...

  • Good plan! Good luck in th trenches💪

  • So sorry,but don't give up. I was unconscious for over a month and had a stroke after my rollover car accident last year and although I still have c considerable discomfort, I'm here!

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