My son is in a Persistent Vegetative State.

My son has been in a persistent vegetative state since 2002 when he suffered a massive bleed to the brain at 16 years old.

I am looking to connect with other people who have experience or knowledge of coping with PVS.

It's been over 10 years for us, like a living nightmare.

I will never come to terms with what's happened but I have learned to live with it.

In order to find support and reach out to others in need I have started my own support group.

It's a hard burden to carry but I feel I have to try to make some sense of it all.

Does that make sense to anyone else?

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33 Replies

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  • sorry cant help with PSV but i can fully understand you wanting to make sense of it

    and kudos for starting a support group

    i cannot even begin to imagine what you are going through

    and if i am honest, i don't know what is worse, having the brain injury or being the loved ones who watch you fall apart, and feeling helpless to do anything about it.

  • I really appreciate your kind words. Thank you for taking the time to reply.

    It is an awful situation to be in. We just live day to day, trying to do the best we can.

  • Hi Sandra, my Daughter has been 6 months since she suffered severe hypoxic brain damage, it has left her with very minimal awareness, I think they regard her as having PVS I am not sure. It has been all our worst nightmares come true.

    What is the name of your support group?

  • I have messaged you Sandra, you're right it is a total nightmare!

  • makes me feel bad for moaning about my tbi when i can do so much compaired to your son. They say there is always someone worse off than yourself. So feel for you and others going through the same thing. Bless you all and stay hopeful xx

  • Thank you for your kind words. Please don't feel bad. We are all fighting our own individual battles. Personally I think it's good to have a moan every now and then, get's it all out of your system. I am new to this site so in time you are bound to hear me having a moan too!!

    Stay strong, bless you too x

  • My son was in a vegetative state 18months ago but has progressed to a low awareness state in rehabilitation ie. he can turn his head to follow a sound or person at times. I don't know what coming to terms with it would be like. I go from day to day and week to week dealing with health authorities, the rehabilitation unit, progress reviews. We are told that any further progress he makes will be very slow if at all. Most of the brain tissue has atrophied (dried up and shrivelled). Some people, even in the family, tell me that he should be allowed to just die. I cannot imagine where we will be in 10years time.

    Well done and good luck with the support group.

  • I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good. :(

  • Hi, I replied to your message on my Facebook page.

  • Hello shortly. My daughter has been in a vegetative state for 2 years and like you I don't know what to expect of the future but I am still hoping that somehow one day she'll snap out of it. (regeneration, plasticity ?).

    Good luck to your son

  • Hello Shortly,

    I am very sorry to hear about your son. I don't think this is something anybody comes to terms with.

    When I was at the point your journey is now there were always meetings and reviews and much uncertainty surrounded each day.

    You are still in relative early stages so struggling with so much grief.

    Hold on to the fact that 18 months & low awareness state are good things. Still relatively early days in the grand scheme. There is still hope for improvement. Has your son been offered an fMRI scan?

    Thank you for sharing your story with me.

    By the way I just read your profile. I see that he may be moved to a care home. Has that happened yet?

    By coincidence my eldest son has Aspergers, not the son who is in PVS. Hang on in there and know that you are not alone. x

  • Hello SandraEB, SandraT2 & Shortly, thank you for your posts.

    They reminded me of conversations I had with other parents while we were staying at "Treetops" at Sheffield Children's Hospital back in 2006 when our (then) 16 year old son was in a coma following a serious road accident. We were just starting out on what has been a slow but relatively successful recovery for him. In Treetops we met parents of chronically sick children and saw how they managed to carry on, day after day. That helped my wife and I put the terrible time we were going through into perspective and the same feeling came back to me as I read what you had written.

    Nothing I can say can make things any easier for you - As Sandra EB puts it, we all have our own battles to fight but reading what you are going through made my own worries a little easier to bear this week.

    Thank you and God Bless

  • Hi Davesdad.

    It is wonderful to read on your profile the wonderful progress your son has made & that he is hoping to go to uni. I love good news.

    The fact that you have taken the time to read these posts and reply has made things better for me and the others too I imagine.

    All good wishes for the future.

  • My son, Matt, is also in a PVS. He was an auto vs train accident when he was 17. He is now 21. My wife and I alternated staying with him round the clock while he was at the nursing facility. Then we decided to bring him home about 2 1/2 years ago, and have been caring for him ourselves ever since. I work out of the home, so it makes it easier to tend to his needs. We also have about 20 hours of nursing care during the week, plus an hour of physical therapy.

    Yes, it can be hard emotionally some days, but we have come to terms with what we have to do to make his life as comfortable as possible.

    Although he does not respond to us, we can tell what TV shows & movies he likes. Any show that doesn't have fast cutting and/or explosions, he closes his eyes and drifts off. But, he consistently enjoys "Mythbusters", "Iron Chef" and the Star Wars & Lord of the Rings movies.

    Naturally, we read to him, as well, and provide audio books and let him listen to the music on his iPod.

    Last weekend, our neighbors shot off lots of fireworks for Memorial Day (we live in a rural area), so we took Matt outside to enjoy the show. His eyes stayed wide open, taking in all the bursts of color in the night sky.

    We don't know if Matt will ever progress to a point where he will be able to actually communicate with us, even a simple yes or no. But we do what we can to make sure he is comfortable, stimulated and not bored.

    In the beginning, my wife and I attended a TBI recovery group, but in that we were the only attendees with a PVS patient, we found it hard to relate to the recovering TBI folks, though they were all wonderful people. For now, our support group is each other. And so far, it works for us.

    Of course, reading posts like this one is reassuring, too. I know there are many families who have suffered tragedy, and many have suffered much more than we have. But we give each other strength, even if it's just a silent nod that says, "I understand."

  • I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good. :(

  • Dear BaldMelon,

    Thank you for taking the time to tell me about Matt and how your lives have changed since his accident. You sound like a wonderful family, all praise to you for coping so well.

    I can relate to so much of what you say, your methods of providing stimulation including music, reading, films etc and ensuring Matt's comfort.

    It is a great reassurance for me to be contacted by another parent who knows what we are going through. Our family has become very insular, we have certainly found out who our real friends are during the last 10+years.

    I wish you continued strength as you travel on your journey with Matt.

    To you I nod in silence "I understand".

    Sandra

  • Hello SandraEB,

    My son is also in PVS. He has been so since 2004, age 15- just 3 weeks and a few days away from turning 16. Your entry I'm responding to could have been written by me. My fingers are trembling as I'm typing this response to you. I've not done this before, not that I haven't tried. I just couldn't do it. I don't know now if I'll be able to hit the submit reply button.

    I'm so sad. My heart still aches like it did on day 1. Does yours?

  • Hello Dever,

    Thank you so much for finding the strength to reach out to me. I am so very sorry to hear of your son and the heartache you are going through.

    My heart does still ache. We just had the 12th anniversary of Ed's injury. Time doesn't lessen the pain, coping strategies somehow kick in and help though.

    Sandra

  • Hello SandraEB,

    I'm so glad to hear back from you. I know it's taken me a bit to get back to you but I needed to build up my nerve. Today, I have it.

    If you can spare the time, I can tell you my son's story. He is one of 4 children and he has a twin sister. She is the only girl. We live in the country and operate a large family owned dairy farm. For privacy, I'll call my son Mike. He was very ambitious. He raised laying hens, had a lawn mowing business, worked on our farm, enjoyed riding his 4 wheeler that he purchased, and had just bought a used pick up truck he was going to work on so it would be ready to drive when he turned 16 in June of 2004. In May of 2004, my husband & I took a much needed extended vacation, a 14 day Western Caribbean Cruise. It was a wonderful vacation and we went with friends of ours and each day was better than the one before. Our eldest son was watching the twins at home, they were 15 and in school most of the time we would be gone. Family lives all around our home. Mother's Day was Sunday May 9, and my children spent the day with my parents at their camp with my sister's and their families and my mom & dad. My husband & I were to fly in on the next day. Sure enough, Monday comes and we land at our airport, excited to gather our luggage and get to our vehicle and drive home to see our children.

    As we exit the plane we are asked if we are the Smiths (not our real names) and we say yes. We are led by the State Police into a room where we are told to call a number and we do. This is when we are told that Mike has hung himself and is not expected to live. The hospital where is currently is at 75 miles away, doesn't see the need to move him as he is sure to expire at any moment.

    We can't get to him. I can't hold him. I can't speak to him. I can't say good bye.

    I need to get him to a larger better equipped hospital where they can save him. If I can just do that, he'll be alright. I just know it.

    I'm in such an area at the moment. I have to get him to this city, NOW!

    The hospital won't transport, he's dying. They won't medevac-he's too far gone.

    I call the largest hospital in the city I flew into and explained the situation only the way a desperate mother could. To shorten this story considerably, Mike was taken to the large city hospital.

    Mike's attempt at suicide left him with an anoxic brain injury. He has no control over his body. Everything must be done for him and I mean everything except breathing. Sometimes breathing is done for him also. He requires 24 hour around the clock care.

    We took care of him in our home with the assistance of nurses for 8.5 years. Then it became painfully clear we weren't capable mentally or physically of managing his healthcare any longer. His healthcare had become too intense and too demanding over the years. His health I had to face it had been deteriorated over the years and he needed more expert care.

    Mike now resides in a skilled home in another county about 80 miles away.

    I miss him every day.

  • Dear Dever,

    My sincerest apologies for not replying to your message, I am so sorry but I did not receive notification of your post & as my own health has not been great I have not visited this site for some time so was unaware that you had replied until today when I received notification that somebody else had posted.

    I wonder how things are with you now? I send my warmest thoughts to you.

    Kindest regards,

    Sandra

  • my dad is in this state for 9 years now and its been hell for me too! I am actually looking for support groups now to speak to others who relate and understand.

  • Hello IfrahAden,

    I am so sorry to hear about your dad. The situation we find ourselves in is very difficult for other people to understand.

    Have you heard of braininjuryisbig.org.uk ? A great site to find support from other people whose loved ones have suffered a severe brain injury.

    Sending hugs,

    Sandra

  • Sandra, I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good. :(

  • Apologies for slow reply. I am sorry to hear about your nephew. I suggest that you contact braininjuryisbig.org.uk

    Thinking of you

  • Hi Sandra. I am so sorry to hear about your son. My daughter is nearly 30, has 2 children and was taken ill 2 years ago. They put it down as encephalitis but they haven't got a diagnosis. They induced coma and has not come round since. She now is in a vegetative state. It is heart breaking. I feel completely and utterly broken. I miss her so much. I would like to join your support group. Does anyone know of someone who recovered from vegetative state ? What sort of stimulation would you suggest ? What sort of changes should I be looking out for ? Any advice will be welcome. I feel so lonely !!!

  • I am so sorry to hear about your daughter. Sorry for the delay in replying. Have you heard of braininjuryisbig.org.uk They are a great support group. Thinking of you.

  • Thank you Sandra. Yes I had heard about braininjuryisbig. but somehow I was hoping to communicate with someone whose loved one is in the same position to probably compare improvements (or not). I am still hoping ??!!

  • I have a Facebook page called Persistent Vegetative State Awareness. If you are on Facebook I am happy to connect with you there. Stay strong.

  • My son is minimally conscious for 2 years- he is 28

    He suffered a devastating stroke because of hydrocephalus

    I'd like to connect with people who are living with this kind of tragedy.

  • Hi. I am so sorry to hear about your son. Have you heard of braininjuryisbig.org.uk They are a great support group. Thinking of you.

  • I still have a Facebook page called Persistent Vegetative State Awareness.

  • This post is almost 5 years old but I hope you still read this.

    I am so sorry to hear about your son. Has his condition improved? are the any developments?

    I stumbled upon this because of the most unfortunate situation.

    My dad (my step-dad, but I call him my dad) had a heart attack almost five months ago and he was left in a PVS.

    These past months have been hell on earth. I never knew someone could be this sad. I also never knew I could be this strong. Honestly, I wish I didn't have to be this strong.

    It feels like the world is against us. The company he used to work at stopped helping us, his ex-wife is making out life miserable, his family doesn't support us (it's like we were his only family). Everyone's life keeps moving forward, but ours feels like it stopped.

    It has been just me, my mom (his wife), my baby sister (his 10 month old baby) and my fiancé. We have been relying on each other and I am very lucky to have them in this situation, but there is such a huge piece of our family missing.

    Me and my mom have read everything there is to read about neuroplasticiy and reviving dead brain-cells, but we keep hitting dead ends. It feels horrible. We don't know where to turn to or what to do.

    I know this is wrong, according to his doctors, but we still have hope that he'll come back to us. I mean, we can't just accept this. We can't just move on and leave him in the past. He is not dead. Where there is life there is hope. Right?!

    I used to believe in God, but sometimes it's so hard to have faith! Like, is He freaking kidding me? Why would He put us through something like that?

    We feel so broken inside. And I honestly don't wish this upon anyone, but it would be great to talk to someone going through the same. If you are going through this, I want you to know you don't deserve this and I am here if you ever want to talk.

    Trish

  • Hi Trish, so sorry to hear about your dad. It's a really awful situation to be in and I feel for you all. Last month was the 15th anniversary of my son's TBI and it hit me like a brick!!! He is still in PVS and there are times when I am not strong at all but I am his voice and will continue to be there for him as long as I can. I have a Facebook page called Persistent Vegetative State Awareness if you would like to connect with me there? Stay strong and know that I understand your pain. Sandra x

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