It has been a fantastic study to see how my wife's brain works due to amnesia (1 Viewer)

[D-Day]

Very interested in this as well.  Thank you so much for sharing this story.  I don't mean to pry, but I doubt your marriage was absolutely perfect before all this (we all have struggles and challenges there I'm sure).  So when "recreating" everything, do you do so with both the good and the bad?  Or are you still at the "baby steps" part of the recreating? 

Like with my wife, we lost her father a few years ago to a short but horrible battle with cancer.  Would you just say he passed, or go over all the details of the situation?

Her father passed just a couple of years ago at age 92, and he had dementia.  Anything she asks, or if it comes up in conversation, I tell her.  I feel I need to do this so that she trusts me, without question.  As I stated earlier, we never fought.  I did tell her about the one time she was reaaally PO'd at me... I bought a 50" plasma when they were still pretty expensive.  She thought I spent too much (come on, I'm a FBG, I got the scratch).  She was finally coming around until I went to the eye doctor, got glasses for the first time and sat down to watch TV.  I should not have said "Hey honey.  You know what, I didn't need a HDTV, all I needed was glasses."  No dots for a while.   Now she laughs at the story.

 

[D-Day]

What does she do on a daily basis?  Also, she would be the greatest political candidate ever.  Plausible deniability and piles of " I don't recall" answers. 

Right now she reads, does some training such as simple math worksheets, word searches... things to exercise her mind.  Also is starting to sew small projects.  Now that the transplant is done, we are looking to build her up physically when she can.  She weighs 101 lbs when 120+ is normal for her (height 5"7)

As for the other part, remember all of the stupid, embarrassing things we did when we were younger.  All gone.  Clean slate.  No guilt, no remorse. Like a Westworld Host.

 

[Joe Summer]

What have the doctors said about her old memories ever returning?

 

[Epic Problem]

Have you worked with her with music from your past? Wedding song, kid's favorite songs from when they were little? The more and more I see or read on the subject, there is something about that skull sponge that seems to react well to it 

 

[McJose]

Sheesh, that's gotta be tough.  Best of luck, man.   Glad to see you've still get a laugh out of all of this though.

 

[D-Day]

What have the doctors said about her old memories ever returning?

They think she will get some of her memories back, but won't know for another 6 months or more.  They flat out said that she won't ever be who she was, won't be a CPA again.  Frankly, if this is the best she gets, I'm ok with it.  I hope she gets better though.

 

[Jayrod]

No worries.  Watching '50 First Dates' again was an eye opener to me.  That is a movie I think I will avoid having her watch.  

'The Vow' is even closer to what you guys are going through. 

 

[D-Day]

Have you worked with her with music from your past? Wedding song, kid's favorite songs from when they were little? The more and more I see or read on the subject, there is something about that skull sponge that seems to react well to it 

I was just coming to post about her knowing music.  She recognizes a lot of the music that she listened to in the past.  Doesn't remember any context though.  The doctor said that music is in a different area of the brain than what was damaged by the seizures.  She keeps saying, "I can remember the words of 'Tequila Makes Her Clothes Fall Off' but I can't remember the name of my kids".  This was early on, so she now knows the name of her kids.

 

[lardonastick]

Wow, thanks for sharing your story. You are an amazing partner. Best of luck going forward.

 

[Jayrod]

Wow, thanks for sharing your story. You are an amazing partner. Best of luck going forward.

This.

 

[Epic Problem]

I was just coming to post about her knowing music.  She recognizes a lot of the music that she listened to in the past.  Doesn't remember any context though.  The doctor said that music is in a different area of the brain than what was damaged by the seizures.  She keeps saying, "I can remember the words of 'Tequila Makes Her Clothes Fall Off' but I can't remember the name of my kids".  This was early on, so she now knows the name of her kids.

 

Keep up the positive attitude. I dread being in your shoes or putting my wife in the same situation as you are and, if ever faced with the scenario, hope to handle it with the same grace that you seem to be. Someone mentioned therapy, while probably not the worst idea, I understand its not for everyone. Worst case scenario, when it comes to yourself, you have us to vent to, laugh with, whatever helps. 

 

[D-Day]

'The Vow' is even closer to what you guys are going through. 

I have not seen the movie, but just watched the trailer.  Whoa, a lot of that looks familiar.  Good thing she doesn't remember dating any other guys.

 

[McJose]

They flat out said that she won't ever be who she was, won't be a CPA again. 

Is that so bad?  I mean maybe she can be something cool now.  Like working at Hot Topic.

 

[Kraft...]

I'm very envious of what a positive approach you have to these circumstances. Thanks so much for sharing and all the best to you and your family on this crazy journey. Positive vibes headed your way   

 

[D-Day]

Someone mentioned therapy, while probably not the worst idea, I understand its not for everyone. Worst case scenario, when it comes to yourself, you have us to vent to, laugh with, whatever helps. 

I started this thread to share something that I continue to find fascinating from many perspectives.  I try to imagine what she is thinking.  But since you opened the door to VENT, the one thing I would say is never tell someone "If you need anything, just ask."  Through this event, I have found who I can lean upon, and who is just BS'ing the world.  My wife and I have what I thought were good friends who are teachers and I have asked for their help.  I thought she needed help re-learning things - alphabet, find her basic reading level, math, writing... you know, school stuff.  I asked several if they could help with anything, help with a basic curriculum.  The only response I got was one telling me I needed something other than what I asked for.  Did she help with the solution she thought I should look for?  Nope.  The best I got was offers of cooking dinner for me at a time I was NEVER home to eat.  I was at the hospital for two straight months until 1-2 AM.  

So frankly, there is a bitterness towards some of her "friends".  So when you say "If you need anything..." make sure you are ready to drop everything and deliver, or find someone who will.  Don't waste 30 minutes of time that I don't have, as to why you can't help and how bad you feel.    I've asked and been disappointed by BS answers why someone can't help so many times, I've stopped asking other than those I already know I can count on. 

Venting done.

 

[Gawain]

I really don't have anything to hide from her except the amount of time I spend on the FFA, Clash of Clans, and Boom Beach.  We never fought. It has been a great marriage and partnership.  

I'm amazed by your dedication and patience. Really puts the minutiae of day-to-day life into perspective. I hope you keep this thread updated, would be great to hear the details of the journey going forward.  

 

[higgins]

 

[D-Day]

One thing I am on the watch for is when she says something, is it a past memory coming back, or is it something she has learned after the coma.  I tested her today while we were in the car if she knew what green, red, and yellow lights mean.  She did, even the joke that yellow means speed up.  I don't think we have discussed this at all, so I'm thinking old memory.  A few days ago, she was talking about primary colors.  I had not taught her about primary colors, or used the term 'primary colors'.  Thinking this was an old memory, she showed me where she learned about it in a coloring book that she was using.  So, that taught me to question further when I think it may be an old memory.

 

[Tom Skerritt]

Her father passed just a couple of years ago at age 92, and he had dementia.  Anything she asks, or if it comes up in conversation, I tell her.  I feel I need to do this so that she trusts me, without question.  As I stated earlier, we never fought.  I did tell her about the one time she was reaaally PO'd at me... I bought a 50" plasma when they were still pretty expensive.  She thought I spent too much (come on, I'm a FBG, I got the scratch).  She was finally coming around until I went to the eye doctor, got glasses for the first time and sat down to watch TV.  I should not have said "Hey honey.  You know what, I didn't need a HDTV, all I needed was glasses."  No dots for a while.   Now she laughs at the story.

Have you guys talked about sex? Is she interested in having sex at this point? In the future? How does she feel about it? Will it be like having sex with a new person for her?

 

[D-Day]

Have you guys talked about sex? Is she interested in having sex at this point? In the future? How does she feel about it? Will it be like having sex with a new person for her?

We have talked about sex, she is interested, but due to medical conditions, it has not happened.  I feel confident that this will go back to somewhat normal, and the upside is, since she doesn't remember anyone else, I'M THE BEST SEX SHE WILL EVER HAVE (poor girl).  

And to just get it out of the way, no, I will not be taking advantage of her lost memory.  "Come on honey, you always loved it when we brown dot".  

 

[Ray Barboni]

I don’t have a lot to say, except that I admire your strength and positivity through all of this. Keep it up.

Couple years back I happened across an interesting Radio lab episode (podcast).

Not a cure, or even a treatment - but it offers a bit of hope for some type of future “cure”.

https://itunes.apple.com/us/podcast/radiolab/id152249110?mt=2&i=1000378732771

From the description:

”Today, a startling new discovery: prodding the brain with light, a group of scientists got an unexpected surprise -- they were able to turn back on a part of the brain that had been shut down by Alzheimer’s disease. This new science is not a cure, and is far from a treatment, but it’s a finding so … simple, you won’t be able to shake it. Come join us for a lab visit, where we’ll meet some mice, stare at some light, and come face-to-face with the mystery of memory. We can promise you: by the end, you’ll never think the same way about Christmas lights again.”

 

[In The Zone]

Man, you are a rockstar. I love your attitude. Your wife is in great hands.

I wish you and your family all the best.

 

[Keerock]

Man, you are a rockstar. I love your attitude. Your wife is in great hands.

I wish you and your family all the best.

This x 1000

 

[Nathan R. Jessep]

Thanks for sharing. As others have said, you've taken a highly admirable approach and she's blessed to have you. 

Oh and OF COURSE she loves hugs. Hugs are awesome.  

 

[D-Day]

A recent example of where my wife needs prompting.  Asking her to name any state is difficult, but if I give her a city, then she does pretty well giving the state.  I give her Dallas, she says Texas.  Sometimes she will say the state, but then ask if it was really a state.  

Interestingly, when I prompted "Ann Arbor", she replied "She's a whore". *  GO BUCKS!  

*she did not really say that

 

[Epic Problem]

Interestingly, when I prompted "Ann Arbor", she replied "She's a whore". *  GO BUCKS!  

*she did not really say that

She'll get there with your help.

 

[D-Day]

At dinner tonight, I drop a Goldilocks reference on my wife.  Deer in headlights look.  "Do you know the story of Goldilocks?"  Nope.  So I start telling her about it, get all the way to Goldilocks breaking baby bear's chair, and then she pops up that NOW she remembers it.  Sometimes I get the feeling that she's messing with me.

Got to go check out the Schtick thread to see if she's posting stories there. 

 

[Beef Ravioli]

Got to go check out the Schtick thread to see if she's posting stories there. 

 

[Nigel]

You remind me of some character in a movie and how he would handle this, and I’d be watching thinking “no way could anyone handle it as cool as this guy”, but you’re a real dude. Stellar. 

 

[Clown Car]

Regarding the teacher friends not being able to help with your requests, may I recommend finding a homeschool parent?  We are just different. So recommending curricula or programs to help sharpen skills or build upon what she has may come easier. If you don’t know any I can suggest ways to find some in your area if you think it will help. 

Bless you and your family. 

 

[D-Day]

Curious, did you automatically show her affection like you did before or did you (are you) building back up to that? How did your wife respond the first time you held her hand or hugged her? 

After re-reading this, I answered before about her reaction.  I did and do show her affection--I think like before, but still due to physical issues, I am more cautious.  When she first woke up from the coma, and for several weeks after that, I thought she would just wake up one morning and BAM remember everything.  It wasn't until a test was done a couple of months later that the doctors confirmed that she will never get back to exactly who she was.  So when you think things are going to return to normal, you act normally.  I would hope I would have acted the same way even if I knew from day one that she would not remember our past life.

 

[D-Day]

Great stuff. Big kudos to you for working through this. Do you ever gloss over the past, or is it all unvarnished truth?

I was re-thinking this.  As for our lives before the coma, I haven't hid anything that she has asked about.  I did realize that I had glossed over some of what I and the family had gone through while she was in the hospital.  She asked more questions tonight about how her illness started.  That led into a discussion of how close she was to death on several occasions, how I had to call the family in twice to say their goodbyes, how I helped push her hospital bed from the OR to the ICU while a nurse was squeezing the ventilator bag (she thought that was a cool story, and I thought that one would freak her out.).

So we are telling her stories that I thought she wouldn't want to hear.  But since there are a lot of people around her that know what we went through, I thought it best to no longer keep any secrets.  

 

[D-Day]

We have been using scrabble tiles to work on spelling.  When I put the word in front of her, she can read it, and for about 80%, know what the word means.  Giving her the tiles, and having her spell the words on her own is still less than 50% accurate.  And we are keeping to basic 3 to 5 letter words, and teaching concepts such as using "s" for plural, and "ing" for action.

Still no improvement in remembering her past.  I am going to have her watch the Netflix specials "the 90's" to see if that sparks some memory of pop culture from back in the day.

 

[Godsbrother]

This is a fascinating story D-Day.   Thanks for sharing and please keep us updated.   

 

[D-Day]

Some new discoveries while talking to my wife this week.  

TV's:  She remembers them as the big box, square screen.  She is amazed at the screen size and that they are just panels.  She remembers getting cable TV, and being excited about that.  So, I'm trying to figure out what technologies we take for granted, that she is intimidated by, or "never seen before".  She has no idea what satellite TV is.  She does seem to get what streaming is, and grasping the internet.

She has not used a computer/laptop.  Too intimidating.  She does use an iphone and has shopped online with an iPad. So my wife has 40+ years of pent up shopping to do, and knows how to buy everything online -- I'm financially screwed now.  She doesn't express amazement and wonderment over the changes.  When we did our first facetime call, she gave a muted "oh wow", but seemed pretty accepting of it.  Perhaps just trying to fit in, or more of a Truman movie in that she just accepts the world around her?

Goldfish Crackers:  This use to be a go-to snack for her.  Never seen them, nor heard of them.  I bought a package for her--meh.

She LOVES heated seats in the car.  That was totally new to her.

She has a computerized sewing machine that she has re-learned how to use.  This took some time, but she is getting more comfortable with it.

She noticed how overweight people are.  I had to think back to the 70's, and I do think there are a lot more XXL sized people (yeah, I'm one of them).  

More to come as I notice.

 

[cosjobs]

We have been using scrabble tiles to work on spelling.  When I put the word in front of her, she can read it, and for about 80%, know what the word means.  Giving her the tiles, and having her spell the words on her own is still less than 50% accurate.  And we are keeping to basic 3 to 5 letter words, and teaching concepts such as using "s" for plural, and "ing" for action.

Do you have any extra time to do some mentoring in the Political Thread?

 

[D-Day]

Do you have any extra time to do some mentoring in the Political Thread?

Sure, only if I am trying to find something that makes what I have been dealing with my wife seem like a walk in the park. 

 

[bushdocda]

Holy wow, heading back to page 1 to continue. Best wishes to you and the family d-day.

 

[Psychopav]

Goldfish Crackers:  This use to be a go-to snack for her.  Never seen them, nor heard of them.  I bought a package for her--meh.

This completely blows my mind.  Did she not like them as much as the...thought...she liked them before?  Did something in her brain flip a switch?  How does this happen?

 

[Mrs. Rannous]

This completely blows my mind.  Did she not like them as much as the...thought...she liked them before?  Did something in her brain flip a switch?  How does this happen?

A change in her brain may have altered her sense of smell or taste.  That might do it.  Also, the emotional attachment to the snack may be gone.  That could make her just not care about it.  The brain is a strange place.

 

[Man of Constant Sorrow]

A truly amazing, inspiring and thought provoking thread D-Day.

I am sorry for your family's poor fortune in the illness, but am totally blown away with the heroic responses and attitudes. 
 

Thank you for sharing.

You are da man, and I send sincere wishes of good fortune going forward.

 

[D-Day]

This completely blows my mind.  Did she not like them as much as the...thought...she liked them before?  Did something in her brain flip a switch?  How does this happen?

Her eating has changed from before the coma, but also continues to evolve for various reasons.  She had always had a pretty healthy, balanced diet.  When she came out of the coma she craved chocolate, but that has subsided to pre-coma levels.  

Some of the changes in diet is probably due to her not remembering the existence of a certain food and/or my willingness or ability to make a certain food.  Yeah, I'm not cooking broccoli.  And I don't make the same dinner food as she did due to time and skill.  COMMERCIAL PLUG... I signed up for Hello Fresh a couple of weeks ago, and this is expanding our menu.  I'm learning to cook much more with this service.  

There are some physical reasons for the change in diet also.  With her medications, thrush had become an issue, and anything that is hard or crunchy has been avoided.  She has taken medication to relieve they symptoms, but she still holds onto the recent memories of eating X = mouth pain.  As I write this, she is very much looking for "cause and effect" issues in many areas of her life.  Perhaps due to having a void of life experiences.  

 

[D-Day]

Not memory related... my wife has been dealing with long bouts of hiccups.  I mean they are constant for days.  We have asked the doctors, and we don't have a good reason why this has been occurring, and no one is looking to run a scope down her throat at this time.  PRO TIP for the ladies, and those who love them.  When you have the hiccups, do not paint your nails.  You will end up painting your knuckles.  

 

[Sabertooth]

You are a saint D-Day.  

 

[AAABatteries]

Most of the time when I miss a thread around here I’m not disappointed but this is the rare exception.  Not only is it fascinating but heartwarming.  @D-Day - you are an amazing person and you have an inspiring story.  I hope for only the best for you, your wife and your kids. 

 

[D-Day]

My wife is doing exceptionally well physically since the liver transplant from early April.  Doing most things on her own, and able to go out walking 1/2 mile twice a day without feeling stressed.

Mentally is still the issue.  She is having trouble remembering the names of things.  We used Hot Dots flashcards (ages 3-6) with pictures of items, and you need to guess the first letter, matching starting and/or ending sounds.  The issue is that she is not recognizing WHAT the pictures are.  Lemon, bear, goat, and a crab are examples.

On the plus side, she was able to type -- not "hunt and peck," but actually type the alphabet on her laptop.  She was also able to type simple words that I would give her.  So my marketing degree is telling me that this skill is in a different part of the brain than memory.  Kind of like music, and tying her shoes.  So now I am trying to find skills that are somewhat automatic, like the typing.  

I was wondering about driving.  The skill may be automatic, but rules of the road and navigation are probably in memory.  I will update when I feel it is safe for her to begin to get behind the wheel.

 

[Binky The Doormat]

I can't remember D-Day, how closely are you working with mental health professionals to help guide you with her recovery?  Are they able to tell you what areas of the brain are damaged and what to work on and what to expect?  T&Ps for you guys and please keep us updated ...have to tell you, this is incredibly fanasinating.  

 

[Beef Ravioli]

My wife is doing exceptionally well physically since the liver transplant from early April.  Doing most things on her own, and able to go out walking 1/2 mile twice a day without feeling stressed.

Mentally is still the issue.  She is having trouble remembering the names of things.  We used Hot Dots flashcards (ages 3-6) with pictures of items, and you need to guess the first letter, matching starting and/or ending sounds.  The issue is that she is not recognizing WHAT the pictures are.  Lemon, bear, goat, and a crab are examples.

On the plus side, she was able to type -- not "hunt and peck," but actually type the alphabet on her laptop.  She was also able to type simple words that I would give her.  So my marketing degree is telling me that this skill is in a different part of the brain than memory.  Kind of like music, and tying her shoes.  So now I am trying to find skills that are somewhat automatic, like the typing.  

I was wondering about driving.  The skill may be automatic, but rules of the road and navigation are probably in memory.  I will update when I feel it is safe for her to begin to get behind the wheel.

May have already been answered but any newly discovered “talents” or new “likes” that used to be “hates”, etc? 

Exciting to hear the progress and thanks for sharing your story with us! 

 

[D-Day]

I can't remember D-Day, how closely are you working with mental health professionals to help guide you with her recovery?  Are they able to tell you what areas of the brain are damaged and what to work on and what to expect?  T&Ps for you guys and please keep us updated ...have to tell you, this is incredibly fanasinating.  

She has a neurologist that we saw in October, and did an evaluation in December. We did have in-home speech therapy for about 6 weeks, but they stopped and released her because they didn’t think they could help any more.  Since then, nothing. To be honest, we’ve had bigger fish to fry in just keeping her alive, and qualified for the liver transplant. She has an appointment with the neurologist coming up in July, and should get more guidance then, I hope.  

If anyone knows a specialist, I’m all ears.  I’ve been making this up on my own for a long time.  

 

[Binky The Doormat]

She has a neurologist that we saw in October, and did an evaluation in December. We did have in-home speech therapy for about 6 weeks, but they stopped and released her because they didn’t think they could help any more.  Since then, nothing. To be honest, we’ve had bigger fish to fry in just keeping her alive, and qualified for the liver transplant. She has an appointment with the neurologist coming up in July, and should get more guidance then, I hope.  

If anyone knows a specialist, I’m all ears.  I’ve been making this up on my own for a long time.  

will your insurance cover recovery rehab when she gets stronger?