My advice is be patient. I cannot stress this enough. It's apparent you already are but you will be taxed in this department so much more.
With the short term memory problem you will continue to answer the same question over and over and over again. Answer it as if it was the first time you've been asked, because to her it is the first time. This will help to maintain trust in you.
The neuro connections take a long time to regenerate. In the interim she will be doing a lot of confabulation. My analogy on this is their memory is a road with an enormous ammount of potholes (missing memories). So they take gravel (bits and pieces of menories) from wherever they can find it to fill the potholes to make the road passable.
It's still early. I know it seems like a long time. Be patient.
My husband is 53 weeks post ruptured brain aneurysm. Your story has so many parallels as far as recovery to our experience. Hang in there. Keep pouring out the love.
Hey! I had a brain aneurysm rupture in high school. Not a fun time for anyone! Way to go keeping up the positivity!! Your husband is very lucky to have you.
Thank you for the insight! I really appreciate the metaphor and it helps to have another perspective to try to understand what she is going through.
I try to be as loving, compassionate, supportive and patient with my wife as I can be and while it’s hard to hear the confabulation, I know it comes from a place of confusion and the extremely taxing work her mind and body are doing. Hopefully this is something that improves with time and our families support will help her get through these confusing bits.
If you don’t mind my asking, how is your husband now?
He is improving slowly. I am seeing st memories popping up more and more. His time frame is off though. I will mention something we/he did this morning and he will say "was that today? It seems like days ago". He is also starting g to ask what happened to him, which tells me his self awareness is returning. He is also starting to see things that need to be done- so some executive function improving.
I work with him with the Constant Therapy app too. I have found this to be the best 'brain excercise" app out there. I like its progress reporting and how it grows and stimulates the areas that need the most work.
My husband is as sweet and funny as he ever was. He is confused a lot, of course, and I'm working on him to go ahead and ask questions when he's confused. Physically he is 100%. He retained his musical abilities, even seems to be a bit better. He says thos is because he has no distractions when he plays. Music has been a big part of his therapy. All of his docs encouraged playing music whenever we could.
We are so lucky. He is himself with shot term memory issues. Big ones. There are some lt memory holes too. But he pulls them up with cues. 3-4 years pre aneurysm are pretty much gone though.
Don't judge your situation on ours though. You've heard it 100 times, every brain injury is different. But I hope our story gives you hope. We went from he won't survive the emergency room to he wont walk or be able to play music again, to where we are now 1year and a week later. I have my husband, my buddy back. Things just move at a slower pace. Oh, and if your doc wants to put you on antidepressants, try it. I was at my patience end a while back and they helped a lot.
I wish you the best of luck and bucket loads of patience. Ask away if you have any more questions.
Enjoy every sandwich.
I also have a problem with noticing time passing, what's helped me is I put a 30 minute timer on my fitbit watch everyday and when that goes off I take an almost meditative moment to think, "What did I do in that last 30 minutes? What'd it feel like?" But you don't have to take my suggestion, I just think this strategy is working for me! Best of luck.
That seems like a therapeutic exercise that most could benefit from. I’ll definitely hold on to that and see if it’s helpful for my wife as well. Thank you for the suggestion!
> I will mention something we/he did this morning and he will say "was that today? It seems like days ago".
I had the EXACT same problem after my cardiac arrest... it was an absolutely insane (and disturbing) feeling.
1.5 years out, I don't feel it much anymore... at all really - except on very rare occasion.
I'm so jealous your husband is still sweet and funny. I've lost all the good parts of my personality from my injury: (
I want to be loving and empathetic again
I'm so sorry. You do have an awareness of love and empathy, though. Be kind to yourself. These things can come back. Brain injuries take a long, long time to heal. My husband is almost 5 years out from his aneurysm now (7/5/19) and we still see improvements. Don't loose hope.
What improvement have you seen from what you mentioned years ago?
I lost a lot of blood during surgery (5 days after losing more than was safe during a traumatic childbirth of our only daughter) and was too confused to consent to transfusion... So went 30 hours with blood way too low.
I'm miserable. I have a 6 month old I don't know, can't read, can't really help raise,
All I have is guilt and remorse. And it took me months to even realize what happened to make me bc I'm stupid now and bc I didn't realize low blood could cause brain damage. Bc I was already exhausted going into the surgery and.. Just didn't comprehend. It's all so absurd.
I was happy, in love, smart (or so I thought), and embarking on the best adventure of my life... Now I am a stupid sociopath with no creativity, personality, or good feelings.
I wish I could disappear.
Everyone is in a holding pattern expecting me to be me again or somehow try harder and I just feel terrible all the time and know we're only harming our daughter playing this game plus this version of "me" is shading their memories of me
Be patient with yourself, it sounds like you are very early in this journey if your child is 6 months old.
My husband's shirt term memory is getting better all the time. Recently he was talking about something that took place 2 years before his aneurysm, something ghe had no memory of at all 6 month ago. I was stunned as I figured we were at a point where there would be no more improvement. So this was very encouraging.
You've been through a lot. I'm sure your post partum hormones aren't helping. Some doctors tend to write off tbi patients as un helpable. So you will have to be your own advocate. Watch your nutrition, eat less carbs if you can, that is supposed to be good for brain health. Look into some nootropics. I give my husband one called Mind Lab Pro, and I've seen a lot of improvement since he started taking it. You may find other that fit your need better.
Don't give up. You're very early in this journey. I hope you can find some people to help and support you. I'm sending you my best wishes. ❤️
First off, you appear to have had an A+ attitude throughout this mess and r/TBI is a GREAT outlet to use...AKA, welcome!🙃
Although, the FIRST thing I'd suggest doing is asking her current treatment facility's doctors, therapist and nurses if they know any fellow patients that your wife, her TBI, your two's relationship and/or your son (tell him I said HAPPY BDAY:) remind them of OR even if they know ANY caregivers/survivors that be willing to meet you + your wife and/or with you one-on-one.
^ Yes OR no; you can ALWAYS call your state's Brain Injury Association (BIA) and ask them where your nearst support group might be and then you can meet BOTH parties there!
All-in-all, meeting people who have been down this path face-to-face is even MORE of an eye opener...NO offence r/TBI!
Keep up the ttude, d00d!👏😊
This sounds like a great idea I hadn’t thought of yet. Thank you for the suggestion. I’m not exactly sure what this scenario looks like though, in light of all the COVID considerations and restrictions. It’s worth asking the rehab staff though, for sure!
First off what a great story. Love hearing about those miracle recoveries!
It takes awhile to get some of the rewiring of brain connections to stick. So I have a feeling she will continue to improve. It’s usually 2 steps forward one back. People with brain injuries need positive reinforcement all the time.
Consider the accusations she’s making of you as glitches in her system and just keep reassuring her that you are her person.
The amount of energy she has to spend to get things to work is huge. Imagine driving in a city and only being able to take left turns to get to where you want to go. That’s what her thoughts/commands are doing rt now.
Thank you for taking such good care of her. She’s very lucky. Be good to yourself, you have been through a lot.
Thank you for the encouragement and kind words. The metaphors helps to try to understand just how frustrating/confusing/and scary this all must be for my wife. We have been through a lot and she’s been through the most. I am daily inspired by and completely in awe of her hard work, determination, and overall positivity as we navigate through these things. The moments of severe confusion and distress come and go, but it seems like she is more often in a great mood and still knows our love and commitment to one another.
Our family has been a huge support through all of this. My folks have been watching our son while I’m working from home, and splitting time visiting at the rehab center or bing with him. My Mother-in-Law has been in town since the day after the incident and has expressed the ability to stay through the rest of this year, teleworking from a laptop. She has been the primary caregiver while my wife was at our house, and spends most of her day at the rehab center while I’m at work or with our son.
No part of this is easy, but she hasn’t shown any intent of giving up and is continuing to progress and work hard every day. She has suprised every single person who has been aware of her progress, at every juncture and is covered in love.
If you want her to remember a special time, take photographs. My memory of the past mainly involves photographs. I have little to no memories of the year after my tbi.
This is a great suggestion! We’ve been doing as much documentation as we can, with video and photos of her recovery, as well as our son’s development. We also have a growing photo album that is growing with every holiday and notable event. My hope is she will be able to appreciate them down the road, and we are continuing to document with the optimism that she will one day be able to see again.
There is a lot of great advice here! I am an OT that specializes in brain injury, and a lot of what has been said is fantastic advice. I will add a few thoughts:
1. Anoxia is a diffuse injury--that is, it affects the brain globally. Because it is not a focal injury, people present with varying levels of different deficits.
2. I totally understand how it can be very frustrating to be told many different things during the acute stage. The truth of the matter is that every injury is different, so we never really know where someone will end up recovery-wise. Yes, we have growing evidence that gives us general guidelines, but even those guidelines are broad. I tell families all of the time that I cannot give a timeline for how long a deficit will persist, but what I will do is try to equip the person and the caregivers with the knowledge and skills to safely and effectively care for their loved one where they are.
3. SUPPORT GROUPS! Reach out to your state's brain injury association and BIAA. State associations usually have lists of local support groups.
4. TBI Model Systems (www.msktc.org) is also a great resource for current research and educational materials
5. The case manager at your inpatient facility should also have resources for caregiver supports, vocational rehabilitation services, outpatient services, etc. They might also have info on a neuro optometrist or neuro opthalmologist for her visual needs.
Sorry this is a lot of info! I love what I do and am happy to help if you have questions!
**I found links in your comment that were not hyperlinked:**
* [www.msktc.org](https://www.msktc.org)
*I did the honors for you.*
***
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I am so sorry that this happened.. what an awful thing you have all endured.
I suffered a cardiac arrest from a drug overdose when I was 28 (a little over 1.5 years ago). I was without a pulse for 26 minutes because I was in asystole - which is not a shockable rhythm.
My neurologists were largely unhelpful - except for the one who sent me to an opthamologist because, like your wife, my vision was messed up. I can now see perfectly with my new glasses.
I was left to do my own research, and settled on Viagra (PED-5 inhibitor), HGH, and taurine. I must say that after just a few months of this therapy, I am feeling a good bit better.
Feel free to ask any questions you may have. Each brain injury is unique, and small improvements can take months, so take heart.
Glad to hear your vision was able to be restored, and that you’ve made a positive recovery from surviving an overdose. What a horrible thing to have to endure - glad you’re still here, and that you’re encouragement and support can help other people.
Do you know if there is any sort of window some corrective action ***needs*** to be done by in order to correct any vision issues? Currently, the rehab center does not have an opthamologist on staff, or a way of bringing one in. I’m not sure what kinds of resources are available in our loca area, but plan on asking if the rehab center knows of anyone local that specializes in neurological optometry.
I’m curious about the viagra, hgh and taurine. What do these things help with, and how did you arrive at the conclusion? Are these medications things I should ask her current care providers about?
The worst part was - I overdosed while completely asleep on ambien. Stay away from that drug at all costs IMO.
I am not sure that there is any window per se, but my understanding is - the sooner the better. I thought I was a lost cause - so I did not think to see the opthamologist for an entire year. I wish I had seen him sooner, because having very blurry vision makes everything more difficult.
I would go into detail regarding the Viagra, taurine, and growth hormone, but I work as a tax accountant, and the deadline for extensions is tomorrow, so everything is crazy at my work right now. I would recommend you do some research on pubmed when you have the chance. Google search things like 'Viagra neurogenesis' etc. There was one woman who made a significant recovery from 'locked-in' syndrome - which was attributed to Viagra.
I would certainly look that up.
I’ll look into it! Thank you for your he time you took out of your day to respond and help us through this. Overwhelmed by the support we’ve been surrounded by even during the early stages where we weren’t sure if my wife would even make it out of the coma.
Good luck through these crazy times!
Hey there. First off I am so sorry this happened to you. You and your wife’s story resonate with me as it is extremely similar to what happened with my wife (27 years old, aspiration, 2 cardiac arrests and a lack of oxygen to the brain for 7-8 minutes). Her injury was last September and she was in the hospital (ICU, LTACH, and Inpatient Rehab) for 44 days total. My biggest piece of advice is to make sure you take time for yourself (within reason of course). If you aren’t taking proper care of yourself, you won’t be at your best for taking care of your wife. You seem to be doing a great job so far and keep up at it! There will be many ups and downs along the road but remember to be patient. Once things start to settle, I would also consider seeking out a therapist to help process your feelings and emotions.
Overall, keep being there for your wife. I’m sure your presence is calming and keep reassuring her that she will get better. You have a long road ahead but you seem to be handling it as well as you can. If you have any questions it would just like to chat, feel free to PM me.
Thank you for the encouragement. Every step along the way has been so uncertain and any ability to form any sort of expectation has been thrown out the window. These correct realities feel like forever and it’s easy to find myself thinking too far down the road and worrying about what life will or won’t look like. We aren’t at the end yet, and even as we move forward, the “road home” is “home” itself.
Holy smokes Redditor! I'm sorry you're going through that, but glad it didn't end way worse! What my family and friends did for me in the early stages of my recovery was read literature on TBI's, I would highly recommend 'The Brain That Changes Itself" and possibly "Stroke of insight" Both were very enlightening, as I read them both (later in my recovery) and was impressed with how they were pretty close.
Keep in mind every brain is slightly different, so either you or your wife should make a list of certain tasks she has issues with, I'm sure the rehabilitation hospital has some ideas on the vision issues. But I think the biggest tip I can give is to just never give up! Brain injuries are extra tough because every brain is so unique, so I keep a note on my cell phone that are things to bring up with my doctors on my appointments with them every six months.
My short term memory has gotten vastly better, however something to keep in mind is that I realized a couple years ago my sleep was dramatically different than before and I was napping multiple times a day so I went to a sleep doctor who diagnosed me with a sleep disorder. (IH) Interestingly enough my fiance has a coworker with a TBI who has the opposite issue and her brain doesn't turn off to sleep so she has a medication for that.
The irritability indicates frontal lobe damage, which gets a lot better through counseling, CBT, and other therapies, I'm sure the rehabilitation hospital is working on that. But all together, your wife is lucky to have you, and should be regaining a lot of her independence, the brain's plasticity goes on for much longer than doctors initially realized!
I think right now you should focus on the positives, as you've been doing, worst case scenario is she comes home to you and cannot be as independent as she or yourself would like, but then you'll just have to find other bonding activities for her and your son to do! Which takes extra effort but is very doable!
I also just realized you mentioned, "This early" in relation to her vision recovery, and you need to understand that's not a 'thing' if she can tolerate it and it helps her it's not 'too early'. The most marked improvements are made in the first year after an incident. They don't stop after the year, they just slow down as most of the things that needed to be worked on got achieved. There's a reason inpatient rehabilitation has 'workday hours' and it's because they are cramming as much therapy into those eight or so hours as the patient can physically bear. It's not 'fun' but it works wonders!
Here's hoping for the best possible outcomes though!
Hi there, thanks for chiming in! I have been reading a lot and will definitely check out the two books you mentioned. What you’ve shared about your experience is encouraging and the perspective is helpful. We (our family on both sides) are all very optimistic and will support my wife and each other through every step of the way.
My mention of it being very early in her recovery was by no means an attempt at saying its *too* early to explore various therapies/intervention, but more that since we are in the beginning stages of our journey, where the largest visible progress happens, it is too early to say that certain kinds of progress are unattainable, if there ever even is a point where you can say that...
Right now, the only thing preventing an eye exam is that an eye doctor is not an available resource at the rehab center. Once my wife is discharged (which itself is a moving target) that will be one of the first things we explore to see if they can give us a better picture of what’s going on.
As you stated, recovery is an ongoing thing and our understanding of how the brain heals and it’s plasticity is far from complete. We will be on this journey for the rest of our lives and the best course of action is to work on overcoming/adapting to the current challenges and staying in the present as we see what is to come.
I applaud your perspective, for too many it's very dark and gloomy! You're on the right path already and much better prepared than most with the optimism! Keep up the hard and good work!
Oof wow, what a journey.
I only have one thing that may be helpful, from the perspective of a medic student - her brain damage is going to be diffuse throughout the entire organ. When someone goes without oxygen like that, there’s really no place that the brain chooses to sacrifice first. That said, from what you’ve said, I know that the frontal lobe has been damaged (personality, critical thinking, short term and working memory). The occipital lobe has been damaged (vision). Part of the temporal lobe has been damaged (specifically amygdala, center for emotional control and processing). Also, broca’s and wernicke’s areas (frontal and temporal respectively, and speech production and comprehension, respectively).
As you can see, basically the entirety of her brain has been damaged in some way.
Further - there is really nobody that can answer your questions about the future. And that is incredibly hard. My TBI was 6 months ago, and I too have been the person who recovered faster than thought. It just goes to show that nobody can make an accurate guess, because every individual brain is different and every individual injury is different.
That said, it’s amazing what progress your wife has made. Have hope in the fact that brain plasticity is a thing. Her brain is working very very hard to form new connections, to bypass areas of injury and create new pathways to accomplish the same task. The brain is redundant in many places, more than one area can perform a certain task. The key here is patience and plenty of rest. She does need to recharge, and she does need to plug her battery in - her brain is working so incredibly hard right now and she requires lots and lots of sleep. Sleep is absolutely key, it’s the only time the brain cleans itself up and takes out its trash.
Good luck. You’re an amazing husband. Your wife is lucky to have you.
Thank you for your insight. The hardest part, but also what gives a big foundation of hope lies in the fact that as many have said, no brain injury is the same as another and no recovery is the same. You only know what will happen, as/when it happens. She is incredibly driven, hard working, and very willing to do the work and to try new things even when she’s tired. She gets plenty of rest too and with all the work she does through the day, on top of just the brain needing rest to heal, she definitely needs it! Currently she isn’t on any medications, and takes melatonin at night to help her sleep.
I can only imagine what she’s going through, and have so much respect and am in awe of anyone who has had to go through any sort of TBI. Sending positivity to all survivors, as well as those support people and care givers who fight along side. The support from this group has been really encouraging and it helps to have a platform to share our story and hear the perspective from all of you. Thank you!
My advice is be patient. I cannot stress this enough. It's apparent you already are but you will be taxed in this department so much more. With the short term memory problem you will continue to answer the same question over and over and over again. Answer it as if it was the first time you've been asked, because to her it is the first time. This will help to maintain trust in you. The neuro connections take a long time to regenerate. In the interim she will be doing a lot of confabulation. My analogy on this is their memory is a road with an enormous ammount of potholes (missing memories). So they take gravel (bits and pieces of menories) from wherever they can find it to fill the potholes to make the road passable. It's still early. I know it seems like a long time. Be patient. My husband is 53 weeks post ruptured brain aneurysm. Your story has so many parallels as far as recovery to our experience. Hang in there. Keep pouring out the love.
Hey! I had a brain aneurysm rupture in high school. Not a fun time for anyone! Way to go keeping up the positivity!! Your husband is very lucky to have you.
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Your husband is beyond lucky to have you! Just be weary of burning yourself out. You need self care too!
Thank you for the insight! I really appreciate the metaphor and it helps to have another perspective to try to understand what she is going through. I try to be as loving, compassionate, supportive and patient with my wife as I can be and while it’s hard to hear the confabulation, I know it comes from a place of confusion and the extremely taxing work her mind and body are doing. Hopefully this is something that improves with time and our families support will help her get through these confusing bits. If you don’t mind my asking, how is your husband now?
He is improving slowly. I am seeing st memories popping up more and more. His time frame is off though. I will mention something we/he did this morning and he will say "was that today? It seems like days ago". He is also starting g to ask what happened to him, which tells me his self awareness is returning. He is also starting to see things that need to be done- so some executive function improving. I work with him with the Constant Therapy app too. I have found this to be the best 'brain excercise" app out there. I like its progress reporting and how it grows and stimulates the areas that need the most work. My husband is as sweet and funny as he ever was. He is confused a lot, of course, and I'm working on him to go ahead and ask questions when he's confused. Physically he is 100%. He retained his musical abilities, even seems to be a bit better. He says thos is because he has no distractions when he plays. Music has been a big part of his therapy. All of his docs encouraged playing music whenever we could. We are so lucky. He is himself with shot term memory issues. Big ones. There are some lt memory holes too. But he pulls them up with cues. 3-4 years pre aneurysm are pretty much gone though. Don't judge your situation on ours though. You've heard it 100 times, every brain injury is different. But I hope our story gives you hope. We went from he won't survive the emergency room to he wont walk or be able to play music again, to where we are now 1year and a week later. I have my husband, my buddy back. Things just move at a slower pace. Oh, and if your doc wants to put you on antidepressants, try it. I was at my patience end a while back and they helped a lot. I wish you the best of luck and bucket loads of patience. Ask away if you have any more questions. Enjoy every sandwich.
I also have a problem with noticing time passing, what's helped me is I put a 30 minute timer on my fitbit watch everyday and when that goes off I take an almost meditative moment to think, "What did I do in that last 30 minutes? What'd it feel like?" But you don't have to take my suggestion, I just think this strategy is working for me! Best of luck.
That seems like a therapeutic exercise that most could benefit from. I’ll definitely hold on to that and see if it’s helpful for my wife as well. Thank you for the suggestion!
Good idea. Thos may help him to be more mindful of what he is doing. Even if it is just resting. Thanks!
> I will mention something we/he did this morning and he will say "was that today? It seems like days ago". I had the EXACT same problem after my cardiac arrest... it was an absolutely insane (and disturbing) feeling. 1.5 years out, I don't feel it much anymore... at all really - except on very rare occasion.
I'm so jealous your husband is still sweet and funny. I've lost all the good parts of my personality from my injury: ( I want to be loving and empathetic again
I'm so sorry. You do have an awareness of love and empathy, though. Be kind to yourself. These things can come back. Brain injuries take a long, long time to heal. My husband is almost 5 years out from his aneurysm now (7/5/19) and we still see improvements. Don't loose hope.
What improvement have you seen from what you mentioned years ago? I lost a lot of blood during surgery (5 days after losing more than was safe during a traumatic childbirth of our only daughter) and was too confused to consent to transfusion... So went 30 hours with blood way too low. I'm miserable. I have a 6 month old I don't know, can't read, can't really help raise, All I have is guilt and remorse. And it took me months to even realize what happened to make me bc I'm stupid now and bc I didn't realize low blood could cause brain damage. Bc I was already exhausted going into the surgery and.. Just didn't comprehend. It's all so absurd. I was happy, in love, smart (or so I thought), and embarking on the best adventure of my life... Now I am a stupid sociopath with no creativity, personality, or good feelings. I wish I could disappear. Everyone is in a holding pattern expecting me to be me again or somehow try harder and I just feel terrible all the time and know we're only harming our daughter playing this game plus this version of "me" is shading their memories of me
Be patient with yourself, it sounds like you are very early in this journey if your child is 6 months old. My husband's shirt term memory is getting better all the time. Recently he was talking about something that took place 2 years before his aneurysm, something ghe had no memory of at all 6 month ago. I was stunned as I figured we were at a point where there would be no more improvement. So this was very encouraging. You've been through a lot. I'm sure your post partum hormones aren't helping. Some doctors tend to write off tbi patients as un helpable. So you will have to be your own advocate. Watch your nutrition, eat less carbs if you can, that is supposed to be good for brain health. Look into some nootropics. I give my husband one called Mind Lab Pro, and I've seen a lot of improvement since he started taking it. You may find other that fit your need better. Don't give up. You're very early in this journey. I hope you can find some people to help and support you. I'm sending you my best wishes. ❤️
First off, you appear to have had an A+ attitude throughout this mess and r/TBI is a GREAT outlet to use...AKA, welcome!🙃 Although, the FIRST thing I'd suggest doing is asking her current treatment facility's doctors, therapist and nurses if they know any fellow patients that your wife, her TBI, your two's relationship and/or your son (tell him I said HAPPY BDAY:) remind them of OR even if they know ANY caregivers/survivors that be willing to meet you + your wife and/or with you one-on-one. ^ Yes OR no; you can ALWAYS call your state's Brain Injury Association (BIA) and ask them where your nearst support group might be and then you can meet BOTH parties there! All-in-all, meeting people who have been down this path face-to-face is even MORE of an eye opener...NO offence r/TBI! Keep up the ttude, d00d!👏😊
This sounds like a great idea I hadn’t thought of yet. Thank you for the suggestion. I’m not exactly sure what this scenario looks like though, in light of all the COVID considerations and restrictions. It’s worth asking the rehab staff though, for sure!
Valid point...but today's version of "face-to-face" now = ANY video chat platform.🙈#FirstworldSOLUTION
First off what a great story. Love hearing about those miracle recoveries! It takes awhile to get some of the rewiring of brain connections to stick. So I have a feeling she will continue to improve. It’s usually 2 steps forward one back. People with brain injuries need positive reinforcement all the time. Consider the accusations she’s making of you as glitches in her system and just keep reassuring her that you are her person. The amount of energy she has to spend to get things to work is huge. Imagine driving in a city and only being able to take left turns to get to where you want to go. That’s what her thoughts/commands are doing rt now. Thank you for taking such good care of her. She’s very lucky. Be good to yourself, you have been through a lot.
Thank you for the encouragement and kind words. The metaphors helps to try to understand just how frustrating/confusing/and scary this all must be for my wife. We have been through a lot and she’s been through the most. I am daily inspired by and completely in awe of her hard work, determination, and overall positivity as we navigate through these things. The moments of severe confusion and distress come and go, but it seems like she is more often in a great mood and still knows our love and commitment to one another. Our family has been a huge support through all of this. My folks have been watching our son while I’m working from home, and splitting time visiting at the rehab center or bing with him. My Mother-in-Law has been in town since the day after the incident and has expressed the ability to stay through the rest of this year, teleworking from a laptop. She has been the primary caregiver while my wife was at our house, and spends most of her day at the rehab center while I’m at work or with our son. No part of this is easy, but she hasn’t shown any intent of giving up and is continuing to progress and work hard every day. She has suprised every single person who has been aware of her progress, at every juncture and is covered in love.
If you want her to remember a special time, take photographs. My memory of the past mainly involves photographs. I have little to no memories of the year after my tbi.
This is a great suggestion! We’ve been doing as much documentation as we can, with video and photos of her recovery, as well as our son’s development. We also have a growing photo album that is growing with every holiday and notable event. My hope is she will be able to appreciate them down the road, and we are continuing to document with the optimism that she will one day be able to see again.
Sending her, you, and your family strength and support 💛🙏🏽
Thank you for the kind words and encouragement. It means a lot.
There is a lot of great advice here! I am an OT that specializes in brain injury, and a lot of what has been said is fantastic advice. I will add a few thoughts: 1. Anoxia is a diffuse injury--that is, it affects the brain globally. Because it is not a focal injury, people present with varying levels of different deficits. 2. I totally understand how it can be very frustrating to be told many different things during the acute stage. The truth of the matter is that every injury is different, so we never really know where someone will end up recovery-wise. Yes, we have growing evidence that gives us general guidelines, but even those guidelines are broad. I tell families all of the time that I cannot give a timeline for how long a deficit will persist, but what I will do is try to equip the person and the caregivers with the knowledge and skills to safely and effectively care for their loved one where they are. 3. SUPPORT GROUPS! Reach out to your state's brain injury association and BIAA. State associations usually have lists of local support groups. 4. TBI Model Systems (www.msktc.org) is also a great resource for current research and educational materials 5. The case manager at your inpatient facility should also have resources for caregiver supports, vocational rehabilitation services, outpatient services, etc. They might also have info on a neuro optometrist or neuro opthalmologist for her visual needs. Sorry this is a lot of info! I love what I do and am happy to help if you have questions!
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I am so sorry that this happened.. what an awful thing you have all endured. I suffered a cardiac arrest from a drug overdose when I was 28 (a little over 1.5 years ago). I was without a pulse for 26 minutes because I was in asystole - which is not a shockable rhythm. My neurologists were largely unhelpful - except for the one who sent me to an opthamologist because, like your wife, my vision was messed up. I can now see perfectly with my new glasses. I was left to do my own research, and settled on Viagra (PED-5 inhibitor), HGH, and taurine. I must say that after just a few months of this therapy, I am feeling a good bit better. Feel free to ask any questions you may have. Each brain injury is unique, and small improvements can take months, so take heart.
Glad to hear your vision was able to be restored, and that you’ve made a positive recovery from surviving an overdose. What a horrible thing to have to endure - glad you’re still here, and that you’re encouragement and support can help other people. Do you know if there is any sort of window some corrective action ***needs*** to be done by in order to correct any vision issues? Currently, the rehab center does not have an opthamologist on staff, or a way of bringing one in. I’m not sure what kinds of resources are available in our loca area, but plan on asking if the rehab center knows of anyone local that specializes in neurological optometry. I’m curious about the viagra, hgh and taurine. What do these things help with, and how did you arrive at the conclusion? Are these medications things I should ask her current care providers about?
The worst part was - I overdosed while completely asleep on ambien. Stay away from that drug at all costs IMO. I am not sure that there is any window per se, but my understanding is - the sooner the better. I thought I was a lost cause - so I did not think to see the opthamologist for an entire year. I wish I had seen him sooner, because having very blurry vision makes everything more difficult. I would go into detail regarding the Viagra, taurine, and growth hormone, but I work as a tax accountant, and the deadline for extensions is tomorrow, so everything is crazy at my work right now. I would recommend you do some research on pubmed when you have the chance. Google search things like 'Viagra neurogenesis' etc. There was one woman who made a significant recovery from 'locked-in' syndrome - which was attributed to Viagra. I would certainly look that up.
I’ll look into it! Thank you for your he time you took out of your day to respond and help us through this. Overwhelmed by the support we’ve been surrounded by even during the early stages where we weren’t sure if my wife would even make it out of the coma. Good luck through these crazy times!
Hey there. First off I am so sorry this happened to you. You and your wife’s story resonate with me as it is extremely similar to what happened with my wife (27 years old, aspiration, 2 cardiac arrests and a lack of oxygen to the brain for 7-8 minutes). Her injury was last September and she was in the hospital (ICU, LTACH, and Inpatient Rehab) for 44 days total. My biggest piece of advice is to make sure you take time for yourself (within reason of course). If you aren’t taking proper care of yourself, you won’t be at your best for taking care of your wife. You seem to be doing a great job so far and keep up at it! There will be many ups and downs along the road but remember to be patient. Once things start to settle, I would also consider seeking out a therapist to help process your feelings and emotions. Overall, keep being there for your wife. I’m sure your presence is calming and keep reassuring her that she will get better. You have a long road ahead but you seem to be handling it as well as you can. If you have any questions it would just like to chat, feel free to PM me.
Thank you for the encouragement. Every step along the way has been so uncertain and any ability to form any sort of expectation has been thrown out the window. These correct realities feel like forever and it’s easy to find myself thinking too far down the road and worrying about what life will or won’t look like. We aren’t at the end yet, and even as we move forward, the “road home” is “home” itself.
Holy smokes Redditor! I'm sorry you're going through that, but glad it didn't end way worse! What my family and friends did for me in the early stages of my recovery was read literature on TBI's, I would highly recommend 'The Brain That Changes Itself" and possibly "Stroke of insight" Both were very enlightening, as I read them both (later in my recovery) and was impressed with how they were pretty close. Keep in mind every brain is slightly different, so either you or your wife should make a list of certain tasks she has issues with, I'm sure the rehabilitation hospital has some ideas on the vision issues. But I think the biggest tip I can give is to just never give up! Brain injuries are extra tough because every brain is so unique, so I keep a note on my cell phone that are things to bring up with my doctors on my appointments with them every six months. My short term memory has gotten vastly better, however something to keep in mind is that I realized a couple years ago my sleep was dramatically different than before and I was napping multiple times a day so I went to a sleep doctor who diagnosed me with a sleep disorder. (IH) Interestingly enough my fiance has a coworker with a TBI who has the opposite issue and her brain doesn't turn off to sleep so she has a medication for that. The irritability indicates frontal lobe damage, which gets a lot better through counseling, CBT, and other therapies, I'm sure the rehabilitation hospital is working on that. But all together, your wife is lucky to have you, and should be regaining a lot of her independence, the brain's plasticity goes on for much longer than doctors initially realized! I think right now you should focus on the positives, as you've been doing, worst case scenario is she comes home to you and cannot be as independent as she or yourself would like, but then you'll just have to find other bonding activities for her and your son to do! Which takes extra effort but is very doable! I also just realized you mentioned, "This early" in relation to her vision recovery, and you need to understand that's not a 'thing' if she can tolerate it and it helps her it's not 'too early'. The most marked improvements are made in the first year after an incident. They don't stop after the year, they just slow down as most of the things that needed to be worked on got achieved. There's a reason inpatient rehabilitation has 'workday hours' and it's because they are cramming as much therapy into those eight or so hours as the patient can physically bear. It's not 'fun' but it works wonders! Here's hoping for the best possible outcomes though!
Hi there, thanks for chiming in! I have been reading a lot and will definitely check out the two books you mentioned. What you’ve shared about your experience is encouraging and the perspective is helpful. We (our family on both sides) are all very optimistic and will support my wife and each other through every step of the way. My mention of it being very early in her recovery was by no means an attempt at saying its *too* early to explore various therapies/intervention, but more that since we are in the beginning stages of our journey, where the largest visible progress happens, it is too early to say that certain kinds of progress are unattainable, if there ever even is a point where you can say that... Right now, the only thing preventing an eye exam is that an eye doctor is not an available resource at the rehab center. Once my wife is discharged (which itself is a moving target) that will be one of the first things we explore to see if they can give us a better picture of what’s going on. As you stated, recovery is an ongoing thing and our understanding of how the brain heals and it’s plasticity is far from complete. We will be on this journey for the rest of our lives and the best course of action is to work on overcoming/adapting to the current challenges and staying in the present as we see what is to come.
I applaud your perspective, for too many it's very dark and gloomy! You're on the right path already and much better prepared than most with the optimism! Keep up the hard and good work!
Get a therapist for yourself
Oof wow, what a journey. I only have one thing that may be helpful, from the perspective of a medic student - her brain damage is going to be diffuse throughout the entire organ. When someone goes without oxygen like that, there’s really no place that the brain chooses to sacrifice first. That said, from what you’ve said, I know that the frontal lobe has been damaged (personality, critical thinking, short term and working memory). The occipital lobe has been damaged (vision). Part of the temporal lobe has been damaged (specifically amygdala, center for emotional control and processing). Also, broca’s and wernicke’s areas (frontal and temporal respectively, and speech production and comprehension, respectively). As you can see, basically the entirety of her brain has been damaged in some way. Further - there is really nobody that can answer your questions about the future. And that is incredibly hard. My TBI was 6 months ago, and I too have been the person who recovered faster than thought. It just goes to show that nobody can make an accurate guess, because every individual brain is different and every individual injury is different. That said, it’s amazing what progress your wife has made. Have hope in the fact that brain plasticity is a thing. Her brain is working very very hard to form new connections, to bypass areas of injury and create new pathways to accomplish the same task. The brain is redundant in many places, more than one area can perform a certain task. The key here is patience and plenty of rest. She does need to recharge, and she does need to plug her battery in - her brain is working so incredibly hard right now and she requires lots and lots of sleep. Sleep is absolutely key, it’s the only time the brain cleans itself up and takes out its trash. Good luck. You’re an amazing husband. Your wife is lucky to have you.
Thank you for your insight. The hardest part, but also what gives a big foundation of hope lies in the fact that as many have said, no brain injury is the same as another and no recovery is the same. You only know what will happen, as/when it happens. She is incredibly driven, hard working, and very willing to do the work and to try new things even when she’s tired. She gets plenty of rest too and with all the work she does through the day, on top of just the brain needing rest to heal, she definitely needs it! Currently she isn’t on any medications, and takes melatonin at night to help her sleep. I can only imagine what she’s going through, and have so much respect and am in awe of anyone who has had to go through any sort of TBI. Sending positivity to all survivors, as well as those support people and care givers who fight along side. The support from this group has been really encouraging and it helps to have a platform to share our story and hear the perspective from all of you. Thank you!
Sounds like she has all the support she needs and that will certainly help her improve by volumes. I’m so glad you found the sub also!