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Anoxin Brain Injury

royal
  • By royal
  • Posted February 8, 2008 at 9:52 am · 21 replies
  • In Surviving SCA
  • Shared with the public
1 Recommendation

Hello Coleen

In response to your discussion of Feb.7th 2008............My husband is going through the same thing as your Father and I am trying to find others who have gone through the same thing.
With my husband...he has short term memory.....I have to repeat same thing over and over again.....He is still in hospital re-habilitating and so I have no idea how well he will cope when he gets home.
This diagnoses is very frustrating. It would help greatly if someone out there could help us understand this and give advise on how to deal with it.

Royal's wife "Aline"

Explore topics in this discussion:

Surgery Anoxic brain injury Sleep apnea Occupational therapy Physical therapy Pain Memory Speech therapy

21 replies

KauaiPie

My mom survived SCA and ABI five years ago. Although we were "warned" that her memory would not be the same, the neurologist could not provide much more information than that. We were also told that it could be as long as a year before we knew the extent of Mom's memory troubles and that recovery beyond that was uncertain.

Mom immediately proved them wrong. She was very nearly the person she was before losing oxygen to her brain...stubborn as ever. :) Her long-term memory was more or less intact, with a few minor glitches. Short-term, however, is another story. Mom doesn't remember things immediately after they happen for the most part. She'll ask the same question three or four times in a row and have no idea she's done so. Admittedly it's difficult for the rest of us to remain patient but we do gently let her know she's asked the same question within the last 30 seconds. The intriguing part was that she'd remember the answer two or three days down the road.

In my uninformed opinion (I'm nowhere near a professional!) Mom did NOT receive proper or thorough rehabilitation in any area after her SCA. Now, five years later, we're more confident that Mom is actually at a place in her recovery where evaluation might be beneficial. In other words, she understands better what has happened to her and she's more willing to make changes to make her life (and ours) easier. She used the excuse "I've never had to do that before!" when we tried to encourage her to make notes or use other aids. Like I said, stubborn.

Another interesting development is that Mom got a new kidney two weeks ago. She was in renal failure after being given a medication that pushed her kidneys over the edge two years ago. Her memory has been markedly better with a functioning kidney. The transplant surgeon said her memory might improve somewhat but the change has been amazing. Time will tell if it maintains the improvement. I don't know what other health issues your husband has or will develop, but it is curious that a good kidney could have such an impact on memory!

I guess this is my long-winded way of saying NEVER give up. You know your husband better than the doctors do. Patience is essential, but don't beat yourself up if you get tired. You're human. The best thing you can do to take care of your husband is to take care of yourself...and remember to laugh whenever you can! I know I'd never be able to deal with any of this if I lost my sense of humor.

terriwinget

Hi Aline,

I'm very sorry to hear about your husband. I know from my experience what a difficult time you are going through. I hope that my story will give you hope. :-) If you ever need to write or talk personally, my e-mail address is terri_winget@msn.com.

On September 29, 2007, my husband of 17 years and I were working out in the yard when he collapsed. I had NO idea what was happening because he's only 38 and has never had any health problems whatsoever. He struggled to breathe and I proceeded to give him CPR while the medics were on their way. When they got here, John was literally dead. He had no heartbeat, no pulse - nothing. They had to work on him for twenty minutes, which included shocking him four times. They were finally able to stabilize him enough to transport him to the hospital.

He had ventricular fibrillation. They put him into a medically induced coma while they treated him with hypothermia. After about 3 days, he woke up and was diagnosed with an anoxic brain injury. His had both short-term and long-term memory loss. He kept saying it was 1997 and thought that I was his girlfriend. Those are just a couple examples. It was heart breaking and I could tell by the looks on the doctors and nurses faces that the final outcome was a mystery. He was in the hospital for two weeks and it wasn't until the last couple of days that they decided to not put him into inpatient rehab (which I was very relieved about). When he came home, we used a program call Rehab Without Walls where the therapists come to your home several times a week. He had speech therapy, occupational therapy and physical therapy. They were wonderful and provided support to not only John, but myself as well. We don't have any family where we live so it was incredibly helpful to have that support.

During that time, I didn't think that John would ever be the same. He had not remembered a lot of our history together, what we had for dinner the night before and he was also very flat (no emotion).

BUT, I can tell you that once your husband comes home that is when the real healing will begin. Just remember that TIME is your best-friend. It's really important to take one day at a time.

On December 3rd, we were both able to return to work. He has a defibrillator...so hopefully if his heart goes into that rhythm again it won't be as bad. It wasn't until about 3 weeks ago that I could say officially that John is back 100%. He's the same person he was in September - caring, compassionate, thoughtful - and his memory is back. He doesn't remember September through November, but that is OKAY.

I understand how frustrating it can be. When I was doing my research on John's condition, I wasn't able to find any stories similar to ours that had this good of an outcome. I really hope this helps. I don't know the specifics with your husband...but remember to keep a sense of humor and keep HOPE. We all did a lot of laughing in the hospital when John was delirious saying all kinds of crazy things... He had even told his parents that I was dating a fireman that I had met 3 months prior! It was hard - but you have to laugh because otherwise...it would be a million times more difficult.

Most importantly, please remember to take care of yourself. Make sure that you get sleep. You will be your husband's best support.

One piece of advice that was given to me that was helpful... Don't think about what is going to happen tomorrow because you have no control over it. Only concentrate on today. Please let me know if you need anything.

XOXOXOX
Terri

royal

Dear Terri

You have helped me so much. I am sending you an e-mail.

Thanks so much
Aline

jimscahill

Aline: My SCA was in 1999. 14 minutes clinically and biologically dead. After a couple months I was declared "no heart AND no brain damage" by my doctors. As I read you request, what came to mind was a great explanatory email that is contained in the old Survivor Network system. I have it somewhere on file or print (gees, I remembered!!!) and it made me question my "Full" recovery. I promise you I will find it and reprint it here STAT! Good luck and take it one day at a time. Frustrating? Yes. Crushing some days? Yes. There will always be bad days, and the goal we have to maintain is to always, ALWAYS contain those bad moments or days in GOOD weeks!!! Hang in there, and I will be back. Jim Scahill, SCASurvivor

Debracay

Aline, I too have a husband in rehab with anoxic brain damage. In fact, we are in our second rehab. I am frustrated, to say the least. I wrote to Terri and she suggested I might communicate with you. Would that be okay with you? I would love to talk with you about all of this.
Thank you,
Debra

Leenie

Aline, I suffered a SCA 3/19/07 and I have anoxic brain injury. I'm doing much better now, I have had a lot of rehab and I take a lot of medications. And 4/8/08 I'm starting a new program at Kessler ins. called CRP. They say that this is really going to help. Do you know about this program? Has anyone taken this step? Thank You

craita

My father suffered a cardiac arresst followed by anoxic brain injury. Unfortunetly he cannot comunicate with me, it has been eight months sience this tragedy occured.
Do you know anybody who recovered after such a long time?

craita

Can anybody help me with some advice for my father?
After 8 months, he can only hear, smell, feel, taste and move his fingers and tows.
I cannot find a way to comunicate with him. He seems to be there but unable to control his body.

janee

I am so sorry about your Dad, Craita. What kind of rehab has he had. Sounds like you need a good speech therapist to help you with possible communication and physical therapy to try to keep muscle tone.
My husband had his SCA four years ago. He was down eight minutes. I am an RN and there was a paramedic and physician at the restaurant where he had his SCA, so he had the best CPR possible until the paramedics came and shocked him 5 times. At the 5 day point when he was awakened, he had a burst of knowing me and remembered an event just before he went down. But within 5 minutes, he had no idea of where he was, thought our son was a "cop,"etc. To make a long story short, he was in rehab for almost four weeks before sent home to oupatient rehab. He has had neuropsych testing , sleep study (he does not go into deep REM), and had every specialist I could think of. I had specialized as a cardiac nurse and thought if we could get his heart straightened out, his brain would follow. Unfortunately, it does not work that way. Each individual is different because the anoxic injury is diffuse and kills pathways altho new pathways are being built. He is very good at covering things that he has forgotten--long and short term, carries a palm pilot to keep lists, but is a totally different man then the man I married. His personality is flat, he lacks empathy, and is very egocentric and child like. I just wonder when we should allow natural death to occur. Maybe with the hypothermia they are using now, people will have better outcomes, but still can't help but think technology maybe has come too far.
As far as your Dad, I would try therapists to help. It has to be extremely frustrating for you, but the most important communication is perhaps comfort, massage, and telling him that you love him.

LovingMrThomas

Oh my gosh, your story sounds like mine. Thomas had his cardiac arrest on July 9th. He had a seizure first and then there he lay with no pulse or heart beat with his eyes semi-opened. I cried, screamed, etc. But I called 911 and remembered that CPR class. After about 3 minutes of compressions, the fire department worked on him. He too was schocked. My husband lie there lifeless. He was on that breathing machine for 3 days in SICU. None-the-less, he has had open-heart surgery with a 6 way bypass. and that great defibulator/pacer placed in himself. I knew that he was diagnoised with anoxia and global short-term memory loss, but what did all that mean. Thomas is angry all the time, loud and irrational. I love him to pieces -- but we've only been together for less than 2 years. we got engaged on New Years Eve, then we had a small ceremony right before the attack. Because we are scheduled to have our wedding on Valentines Day, we elected not to tell anyone we were married, now I have some of his family looking at me weird and disrespectful. I try to keep our secret just that at this point, because some days he wants to be with me and other days he hates me. I miss the man I fell in love with -- his kindness is gone, his humility is obsolete. What am I suppose to do? His corodac arteries or blocked 100% and 40%. How do I make this work, how can he regain who he was?
--so lost, but loving mrthomas

janee

Dear Loving Mr Thomas,

Your story is a sad one and much like mine. Neuropsych testing can be done over and over, but there is nothing that can test a persons personality change. I would strongly suggest that you take over the bills and check books to make sure that you are both financially safe then see an attorney (probably an elder attorney) to take care of both of you. You also need to change your will, power of health care, etc. Do not let your husband know that you are going cause it sounds like he is like mine, and gets very angry and controlling. You must make sure you are safe no matter what his family thinks--you see things that either they can't see or don't want to see.
If I had not been married for almost 25 years, I would get out. I too love my husband but this man is not my husband. It is so complicated but know I do understand. Get sleep too even if it means get a seperate bed. You can't think without sleep. Feel free to write me. Janee

terriwinget

HI Janee & LovingMrThomas,

I want to share with you my insight on the personality changes. BELIEVE ME, as much as I have forced positivity into myself during the past year - I can completely relate to both of you. It has been very difficult dealing with the changes (the anger, bad moods and controlling behavior). In fact, a few months ago, I told myself that if it didn't get better by 2009, I was going to leave!! I felt horrible for feeling that way, but it's really tough to live with someone who is grouchy all the time. There were many days when I just wanted to pack up my car and GO.

However, this is what has helped me cope. I imagine what John has gone through and how frustrating it must be to suddenly lose certain skills that once came so easy to him. He has a difficult time with planning, getting motivated, organizing and feeling like he has control over his life. He is not one to open up and share his "feelings," but he did finally (after about 8 months) admit to things not being right in his head. I honestly don't know how I would personally deal with losing some of those skills that I value so much. We tend to take those things for granted. John used to be crazy organized -- like all of his extension cords would be wrapped in perfect circles and hung on hangers in the garage. It wasn't until last month that he picked them up off the floor of the garage, untangled them and hung them back up like before. It also wasn't until recently that he mowed the yard in perfectly straight lines. :-)

There was a point when I wouldn't even go anywhere with him because he was so hateful and unpleasant. He wanted to argue about everything. If I would say, "We are going to Starbucks, then to Costco, then to the grocery store," he would say, "NO, we'll go to Costco, THEN to Starbucks, THEN to the grocery store!" If I said black - he'd say white. It has taken A LOT of patience and understanding to get through this. I believe the turning point was when I realized *why* he was grouchy all of the time. I am not saying that everything is wonderful and perfect now, but it has gotten significantly better with time. The positive changes seem to take forever, but when I think back and compare a few months to now - there are big changes.

It helps to give yourself hope by keeping a journal. This is how I know things are getting better. I can look back and see the things he said or did a couple of months ago...that I know he wouldn't say today. It's really hard for friends and family to understand, but this is a long process. I have found that it's miraculous the way John survived this whole thing, but it is not that simple and the after-effects will linger for quite some time. I agree 100% that family does not understand the challenges you face. From their perspective, they think that your husband is perfectly fine and back to "normal" because they don't see what you see. Unfortunately, that has caused great distance between me and John's family. I have a lot of resentment towards them. That is a challenge too because it can really make you feel alone and makes you want to scream. But, that's what we are here for. :-)

When you say, "some days he hates me," OMG - John's family was here a few months ago, his mom started to take a picture of us and I said to John, "Okay, pretend like you like me!" I would have NEVER felt compelled to say anything like that before. So, I totally know how you feel.

September 29th will be one year since John's incident. It has been a long one, but I feel like things are starting to get put back in place. In my last HAPPY post, I think I jinxed myself by saying that John was 100% back to himself!! Not the case, there was still some left-over stuff to deal with.

So, I hope this novel helps some!! Keep hope, keep us all posted & best wishes to both of you.

Terri

tarogers42

Hello Coleen,
My husband was just released a week ago from a neurology rehab and I am sorry to say it doesn't get any easier. My husband (Dennis) suffers from anoxic brain injury and it has been 11 months he has short term memory. My children and I have to repeat constantly to him and remind him just about every 30 minutes. The only advise I could give you is just be patient with him and love him. This has been the hardest thing for me to deal with and I am only 43 my husband is 51. I never thought it would happen to me. My children have been very strong for me which has helped me alot.

janee

Hi ladies,
It seems we all have so much in common. My husband has changed so much to the point that I think that he has become his Dad, who was a controlling AH. My husband's SCA was 4 years ago. He was so good to me and we truly had a good marriage. He now is very short with me, treats me as tho I don't know anything and I really don't think that he realizes that he has changed. Terri, I too keep a diary and yes, he has continued to get better even at this four year mark. I think alot of it has to do with his learning to cover for his diffuse anoxic injury where I never know what he does and doesn't remember. I question myself often as to whether some things even happened and my memory is just screwed up. I frequently talk to my children or 89 yo Mom to keep me intact. The first two years after the injury I just took it, then I decided that I was going to have to start standing up for myself or become a "verbally battered wife." Arguing with him does not help so I frequently will go into another room to vent with one of the dogs or my Mom who has been great--and lived with us since before this injury. My husband's sister does not get it at all so I avoid talking to her unless I must. I really must say that I would leave if not for our finances == difficult dividing and really confusing my husband. I know most of us emarry for life and certainly thru the good and bad, but is it fair that we have to be with this stranger who we mostly don't even like. I can't even imagine what these young people who are coming home with traumatic brain injury; there wives don't get it, the kids certainly don't understand, and the extended family must be so confused. I feel so bad for them.

To those of you with injury, please don't feel that I am talking to you. All brain injury is different, and I am sure most of you are not verbally abusive with your loved ones. Everyone is affected so differently.

Thanks for listening and trying to help, to you all. For those spouses and parents caring for those whos SCA was recent, I would strongly recommend and wish that I had taken photos thruout my husband's hospitalization and rehab. Perhaps it would have better helped him form a memory that it is up to us to provide. Also a diary.

LovingMrThomas

Thank you - ALL for helping me through this. Yesterday he got a new mood prescription. I have new hope again and then this morning he awakes as the beautiful man I fell in love with. By 3:00 pm, he started to make little comments to me - I would just tell him how much I loved him and ignore the little snippets. I take a shower come out and I don't know who he is, why he is acting the way he's acting. He's accusing me of other men,, accusing me of saying things I never said, and He's packing his things, calling his daughters, and ex-wife. I am finally fed up, yet so attached to him. His family sometimes makes moves for him without me and it leaves me confussed. Today his daughter and I made a choice to call 911 as he wandered the streets and then went into a bar. We agreed to have them take him to the hospital for a medical mental evaulation and then placed into a facility. As hard and painful as it seemed, this seemed wise because he's been leaving lately and when he is in his right state of mind and listens to the audio or videos he tells me that he needs to be in a "place" until he gets his head right.

Well, don't know if it's the right thing, but wouldn't you know it, his ex-wife shows up and takes him to check into a hotel on his own. Then has his 16 & 15 year old stay with him for the night. I was furious, but the officer said that there was nothing I could do, but suggest I get conservortorship over him. So great, my husband doesn't want to be with me and calls his ex-wife to pick him up, she takes control and leaves with my partially incompetent husband. I later calm down in hopes that she is just thinking she is doing the right thing, so I suppress any and all emotional concerns. I sit here in our bed going through an emotional rollercoaster and wonder if the sacrafices of my lack of parenting to my own children have been worth it as I reflect on the open house I attended tonight by myself.

It wasn't suppose to be this way. After making poor choices with Mr. Wrong, I finally found Mr. Right and now I wonder is this some cruel joke, or is God letting the devil has his way with me like Job, and if so, Why???

So lost, I suppose I should get some sleep. Thanks for your thoughts and words of encouragment. And thanks for letting me just get things off my mind and heart.

--loving mr. thomas

janee

LovingMrThomas,

I am so sorry that you are going thru this. You were definetly going in the right direction by trying to get your husband in a hospital. As we all know, alcohol is the worst thing post brain injury.
PLEASE see an attorney to get conservatorship so you can get him into a hospital. His teenage children can't understand what is going on and obviously is ex-wife is stupid. Your husband needs hospitalization and professionals who understand brain injury ASAP. Medication does not kick in immediately, it takes time, and rehab is so important.
Remember, those of us who have been thru SCA with a loved one are on yourside and do understand. Janee

LovingMrThomas

I can't stand the pain I'm feeling, the pressure of his family. I just believe they want me out of his life. They are going to put him in an apartment with his brother. They believe he does well -- as do I, but yet they don't see when he makes decisions that could injure himself. I don't think that they know that it really is seriously a 24 hour care issue. I can't fight them anymore -- I think I am just going to give up and let them handle him. That's what they would like and in his other state of mind, that is what he wants as well. so I bid my farewell!

terriwinget

Hi LovingMrThomas,

I am so sorry to hear the struggles you are facing. I'm not usually one to give people advice to leave their marriages, but I think (from what you have shared so far), that you are making the right decision. Although this is very understandably devastating for you - it seems wiser to endure your loss over the next few months and move on than to hang in there and possibly suffer even more for years to come. I love my husband dearly, but to be honest...if we were newlyweds and had his family interfering as much as Mr. Thomas', I don't think that I would stick around. That could lead to much regret down the road. We ALL know that life is very short and sometimes, you really must put yourself first. You can't force help on someone in that situation. Whatever you try to do, his family with undo.

So I say, YOU GO GIRL. Stand up tall and make today the first day of the rest of your life. So many opportunities lie ahead of you and there is no doubt that somewhere down the road, Mr. Right will come to you and then you can look back and feel comfortable in knowing that everything happens for a reason. You do NOT deserve any of this.

In your last post, I sense a little relief in your words?

LovingMrThomas

yeah, well guess what? He left the motel this morning. I went and spent the night with him because no one was going to be there. They said that he has been doing well. I stayed but let his ex-wife and daughter know that I had to leave at 6:30 am the next morning -- this was suppose to be my last night with him before I presented to them, just let me be until he ask for me (believing that they would not let that happen). I was text and assured that his other daughter would be there to give him the things he needed. That didn't happen and by 11:30, I was called to let me know that he had left and no one knows where he is. Of course they asked me why didn't I call, Oh, did we forget that I explained I had a commitment to my son this early morning. Of course not but I became everyones blame. I was furious!

You have to wonder if they want him gone, because I just think that a lot of things are strictly careless and maybe on purpose.

My love for him is far greater -- after about a three hour search from the time I was called and having the helicopters call out his name; he wandered exactly where I expected him and explained to them to look-- but of course I was belittled for that too. I received a call from his niece saying he wants you to pick him up. I have him now and hoped that the "pert team" would be able to evaulate him, but no pert team today. So, until he gets upset, I have him because there is no way he is going to last for the pert team to arrive on Thursday. And there is no way he is going to check himself in for evaluation. I anticipate the next time, but I just couldn't leave him when he declined to be with all those who are so sure that he doesn't want to be with me anymore. In fact he's been talking as though he is absolutely irritated by them. Go figure!!!

I am hoping that the Good Lord can have Mr. Thomas check himself in and be at peace. And we too can be at peace knowing he is okay.

Thank you for your words -- they were comforting as well as my eyes filled with tears.

I just wish I had the man I fell in love with back.

--Loving him, truly

janee

Can you take him to his cardiologist or internist to see if they will hospitalize him and then you can get a court order to keep him in for rehab.

If not, I too think that being newly weds and the family interference and lack of understanding and concern, maybe you should take the highroad. You must take care of yourself or you will both be nuts--and it sounds as tho you have no one to nurture you. We are on yourside and understand.

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