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Discussion:
Spouse wonders what it is like
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I am the spouse of a brain injury survivor who is 6 months post injury. He is still in therapy and confused at times, but he continues to improve.

What is it like? I feel like I should mourn the old hubby that is gone, but I don't think he really is. And if he feels like he is the same person and has the same experiences and memories, why should I mourn him? He is not gone and needs me to love him the way he is right now, right? For some reason I feel guilty for doing that...like I am dishonoring his pre-injury self or something.

Also, for those of you who have recovered from severe injuries, what are your memories of the first part of your recovery like? My hubby gets confused and has trouble processing information. As his cognition improves, how will he view these times?
Posted on 04/22/09, 06:13 pm
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Reply #1 - 04/23/09  10:03am
" I am a brain injury survior, I am 9 month into recovery on the 25th of this month.

You asked what it is like, but that to me raises more questions before I could answer that in completly.

When I realized what was going on, it felt like I had just gone to sleep and woke up in an unfamiliar place. I have no memory of the accident and very little of what happened in the next 8 weeks. I do remember everything that happened prior to the accident up until half of the day of the accident.

I very much long for the old me to return because I don't know who I am right now. By that I mean I don't understand everything I am going through. I know who I am, but I have major personality differences. Let me explain a little more. Pre injury I was very much a people pleaser, I would do anything, say anything to make people feel good or take care of any problem(s). I cared very much about others happiness.

Post injury, I say what I used to only think to myself. I never know what will come out of my mouth. Somebody took away the "filters" I had refined. I smile and tease less now.

I still love the people I loved, I knew the whole time I was out of it who was there and where in the room they were. I still like to do the same things as before.

I am sure my husband misses some of the changes, but he likes some of them as well. He has been wonderful through it all! I really don't know what I would do with out his support.

I too get confused or processing information. It is getting better, and I have found perseption or my perseption is off. I have also learned to ask questions if I am having trouble in one of these aspects.

How your husband will view his recovery no one can really answer, but I can tell you that I have heard just how awful I was to the hospital staff and many silly or embarrassing stories. How do I view them or things I have caught myself doing wrong? I usually laugh about it, or I get embarrased and sometimes I even cry because I don't have the control of myself that I used to not because of what I did. Life is full of making mistakes and it is what you do to learn from those who make us who we are.

This site will be an awesome tool for both of you as he continues the journey of recovery. There are a lot of people who have the information you will be looking for along the way.

Don't forget to take care of yourself along the way! God bless you both!!! "
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Reply #2 - 04/23/09  10:25am
" Timing is everything, isn't it? I just addressed "what it's like" on my brain injury blog at
http://karaswanson.wordpress.com/

I hope you can find some good stuff there. I just posted it last night. Maybe it was meant for you. :) "
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Reply #3 - 04/23/09  12:18pm
" Thanks Kara...I needed that! "
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Reply #4 - 04/25/09  8:12am
" now, you have to know what is it meant by "memory"
http://www.tbiguide.com/memory.html

but since you say he is improving, you don't 100% care about medical doctors, because things may get different than what they say

since as I see he is improving, this is wonderful
do you know this, your need makes change to the world around you
I mean don't let go, keep your faith he'll get better "
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Reply #5 - 04/25/09  10:19pm
" my husband was in a severe car accident 2006. He doesnt remeber it, in a coma for 2andhalf monthes, came out of it. came home and did not baby him. he is cooking,cleaning,working. doing very will today. "
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Reply #6 - 05/01/09  2:57pm
" The best story i ever read about a caretaker was about an older couple in a Sunday "Parade" magazine a year or so ago. It was about surviving brain injury. His wife was quoted as saying, despite memory loss, etc that her job was to treat him with the respect he earned in his life before injury. She was protective of that side of him which I argue is the REAL him. "
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Reply #7 - 05/02/09  7:15am
" Nice testimony about the couple, hmyers512.

From Parade Magazine archives:


An injury irrevocably altered their marriage—but not their love
Caring For A Loved One
By Alix Kates Shulman
published: 11/23/2008


Four years ago, my husband Scott fell 9 feet from our sleeping loft, suffering a traumatic brain injury that changed our lives forever. From that day on, he did not know the month, season, or century. He was unable to find his way home from down the block. His short-term memory and ability to reason were so damaged that he could not remember anything that happened since his fall and could never again be left alone. Suddenly the marriage we had built on independence, equality, and mutual support was radically transformed.

We fell in love in 1950, when I was just out of high school and he was in college. After a summer romance, we married other people, raised families, built careers—but we never forgot each other. When we were in our 50s and our marriages had ended, he looked me up again, and the dormant spark instantly ignited. Since then, the decades we’ve lived together have been the most fulfilling of my life.

People who assume that our lives since the accident must be tragic and miserable are wrong. Despite the many daily difficulties that we contend with, secure in our love, we are mostly content. Maybe it’s the reward of rising to the challenge, maybe it’s the pleasure of making another person happy, but with the help of a few basic principles, so far I’ve managed to fill both of our lives with satisfactions. Here’s what I’ve learned.

ACKNOWLEDGE YOUR NEEDS My contentment did not come quickly. Under the illusion that my husband would heal, I was in crisis mode for the entire first year, devoting myself exclusively to his care and dropping everything else, including my writing career. Convinced that devotion could cure him, I felt I could offer no less. But as it gradually became clear that his impairment was permanent, I had to change my goal from healing him to creating for us as satisfying a life as possible.

I knew that to succeed I had to be honest about what each of us needed in our lives in order to thrive. What he needed was a lot of time with me; what I needed was to write again. So I hired a graduate student to be my husband’s companion for a few hours every day, leaving me plenty of time for him and also for myself.

ACCEPT My husband’s disability makes it impossible for him to control his emotions. Often, when he feels frustrated or threatened, he’ll curse and shout and sometimes throw things. This disinhibition, as doctors call it, is often a symptom of brain disease, whether from injury or Alzheimer’s.

When you feel you are under attack, it’s hard not to react, but I know that reacting will upset him more. Truly accepting my husband’s agitation as beyond his control enables me to remain calm. I’ve learned from experience that resistance can make things worse, while understanding dissipates resentment and makes things better.

ADAPT There are many tasks that my husband can no longer do. Since his injury destroyed his ability to make decisions or plans, his work life is over. He needs help dressing and shaving. He can’t track the plot of a movie or read a book with comprehension, because he can’t remember the previous scene or paragraph. He can’t use the TV remote, find the right key to open our door, or boil water for tea. He also does irritating things—like following me from room to room and repeating the same question a dozen times. But since I know he cannot help these typical behaviors of the brain-impaired, I use imagination to adapt my behavior to his abilities. I read Scott poems that are short enough to understand. When we watch a movie on TV, I join him in the moment, the only time frame left to him, taking pleasure in what’s happening on the screen. When his boredom or frustration threatens to erupt, I put on music, and we dance. The world is so full of possibilities that you can choose the ones which please you both.

RESPECT THE PERSON People ask me why I don’t put my husband in a nursing home or hire someone to care for him round-the-clock and get on with my life. They don’t realize that he is a major part of my life and that we want to stay together. (The costs also would be astronomical.) I dispute the people who say dementia alters the personality, destroying the self. Behind his often-alarming symptoms, my husband’s self is intact. Most of the time he is the same gentle, loving man I married. Perhaps one day I will no longer be able to care for him. When that day arrives, I will do my best to see that his new caregivers respect him as much as I do.

LOVE He tells me a dozen times a day how much he loves me, and he thanks me for sticking by him. This makes me as happy as he claims that I make him. Love is a continuous feedback loop: It can make the most onerous tasks rewarding, as many a parent will confirm. When we walk through the neighborhood holding hands or share a frozen yogurt in the park, I forget the terror I felt when I thought I’d lost him or the difficulty I have in finding patient caregivers. And though I often fall short of my ideal, trying to keep him safe and happy has given my life a new, vitalizing purpose.

I’m certainly not suggesting that the rewards of love can excuse society’s scandalous failure to support—financially and otherwise—the huge army of family caregivers who work for nothing and even impoverish themselves to care for their loved ones. But love, life’s great natural sweetener, can ease the way to embracing whatever you are called upon to do and accepting whatever lies in store.

Alix Kates Shulman has written 12 books, including “Memoirs of an Ex-Prom Queen.” Her latest is the memoir “To Love What Is: A Marriage Transformed.” "
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Reply #8 - 05/02/09  10:52pm
" My life change 10/7/06 when I fell down a flight of stairs; the result being a TBI. I've come to look at my life as before the accident and after.

I was in a coma for days, when I woke up things were still foggy. My memory loss is hit or miss.I don't remember anyone explaining my injury to me or how I got it. I know that I wanted out of the hospital PDQ. I somehow knew that I was in one piece. I don't remember anything. I was in the hospital for a month, but that's a blur too.

My personality hasn't changed ~ so my friends and family tell me. I can tell you this; I now know life can turn on a dime. I appreciate the little things more and will drop everything for my kids.

Sporty is right on the money when she says take care of you. I know I wasn't the easiest to get along with at first. I was frustrated and angry. Remember you count too! hugs to you ~ kim "
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Reply #9 - 05/03/09  2:39am
" Yes, you do have to take care of yourself. It can be tough at times. If you need help, ask for it. That is...... what family and friends are for. If you have questions, ask your doctor or us on here. We live " it " and understand what it is like. "
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Reply #10 - 05/09/09  1:29am
" Well, what is it like to be a tbi survivor is not easy to summarized. For me (each person is different) survival is painful when you look into the eyes of a spouse as she weeps saying, "Where is my husband? I want my husband back. Please, doctor what else can you give him to bring him back?"

And is extremely painful to watch your marriage fall apart, knowing full well I would give my right arm to be as I was before and find yourself alone with no one to stand by your side.

The best thing for you is to love and love unconditionally. Be supportive, and stay close, openminded and caring. That is above all the greatest thing you can ever do! "

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