Letter to My Wife's Family

An Anonymous Caregiver
BrainLine
Letter to My Wife's Family

A long-time caregiver writes an honest plea for help and support.

Dear family of my injured wife,

One of the classic problems for people with a serious brain injury and the people who take care of them is a shrinking support system. Once the immediate crisis is over, family and friends slowly disappear. I’ve found countless examples of this in my research, and it’s been a problem for your sister, J, and me, her husband. Recently, I was asked to write an article about this issue, suggesting ways to get extended family members more involved in the care of the survivor. As I wrote this article, I realized I had yet to follow my own recommendations, which are (1) to clearly explain, with details, why you need help, and (2) to specify what types of help you need.

There are many reasons why extended family members don’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with the survivor — her impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives.

When the person with the brain injury is high-functioning, like J, the extended family may see no need for help. She’s out of medical treatment. She walks, talks, and looks “normal.” She may even drive a car. Therefore, her recovery must be complete. So, why do you need help caring for her? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering her. Let her stand on her own two feet. She doesn’t need help. She’s just lazy and irresponsible.”

In my article, I wrote that before giving up on the family, caregivers should try to educate their relatives about brain injury, in general, and about their loved one’s specific impairments. For many observers, a brain injury truly is invisible. They fail to see the full spectrum of physical, cognitive, emotional, behavioral, social, and/or communication symptoms that people with TBI and their caregivers deal with every day. It’s likely that only the principal caregiver recognizes that their loved one works diligently to appear “normal” to others. Only the caregiver sees her at her worst, at her most vulnerable. Consequently, those who don’t interact with the survivor often may honestly see no need for help.

The extended family may also not understand how much time and energy caregivers spend helping people who live with a brain injury. They may not see how much people with TBI depend on their caregivers. They may not see the sacrifices caregivers make to help their loved ones enjoy better lives.

To caregivers, I wrote, “This is no time to be proud. It’s a time for a frank discussion of how your lack of help is harming both you and your loved one. You also may suggest that if your health fails, the full caregiving burden will fall on the extended family.”

So, I will not be proud. Below, I’ll try to explain why we need help, why I cannot care for J by myself, and how you can help.

Research shows that being the primary caregiver for someone who lives with a serious brain injury is debilitating to that person’s health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. To remain healthy, every caregiver needs some respite from his caregiving responsibilities. A tired caregiver is a poor caregiver.

We can no longer ask for help from those friends who gave us a week of their time to help with J’s rehabilitation. Since our moves from Boston and then from D.C., we’ve lost touch with them. Local friends help with small things, at times, but we really don’t know anyone well enough in our new community to ask for help with the big things. Frankly, I just haven’t had the energy to make new friends. One of my sisters comes once or twice a year and I can always count on my older sister, too. And I’ve tried to be able count on you. I’m particularly concerned about what would happen to J if I should die first.

My health has been steadily declining over the past twenty years and the demands of caring for J have contributed to this decline. I’m tired. I’m so used to minimizing my chronic pain to others that I rarely admit the truth, even to myself. I’m exhausted. I’ve dramatically cut back on my work. I turn down most requests for articles or blog contributions, and I turn down all invitations to speak at conferences. I don’t have the energy to write another book. I wake up exhausted. I go to sleep exhausted. I regularly drag myself to the pool and the gym. I’m able to gradually increase how long I can swim and how much weight I can lift, but the exercises have not given me any more energy. I’m often even too tired to read, my primary diversion.

J recognizes my pain and exhaustion, but the part of her brain that translates this knowledge into action is gone. She rarely offers to help me, and when I ask she usually complains that she has so many of her own things to do. I’ve mostly stopped asking. When I hurt, she hurts more. When I’m tired, she is more tired. Sometimes we talk about this. Sometimes, when I’m particularly upset, we fight about it. But, it’s not going to change.

I’m easily upset these days. I lose patience with J, even over the little things: trying to get her out of the house on time, her obsessive-compulsive behavior, her interrupting or not listening when I speak, her forgetfulness, and the fact that she is easily distracted.

I’m not only exhausted physically, emotionally, and intellectually, but I’ve also developed compassion fatigue, which Wikipedia defines as a condition characterized by a gradual lessening of compassion over time. It’s common among trauma victims and individuals who work directly with trauma victims. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, and a pervasive negative attitude.

That’s me. You can imagine that when I feel this way, I’m not a great caregiver. And this is how I feel these days. It’s been a long time since I’ve had a break and I badly need one now. I also need regular breaks in the future.

Our life is only going to become more difficult as we age. J is a prime candidate for dementia and/or Alzheimer’s. She’s been having balance difficulties lately and has fallen a few times. With her osteoporosis, our future certainly will include some bone fractures. There’s mounting evidence that brain injuries are accompanied by a variety of other medical problems and should be treated as a chronic condition with new symptoms appearing as survivors age.

J has become a different person because of her brain injury. She’s not the woman I fell in love with. You’ve all spent some time with her and have seen many of her impairments. But you’ve never seen the full extent of J’s disability. You’ve never seen her explode with anger. You’ve never been deprived because of her selfishness. J and I have lost the equal partnership of a marriage. There’s now an element of father-daughter in our relationship. In some ways, J is like a ten-year-old, so caught up in her own life she’s oblivious to what’s happening to those who care for her. But, unlike the 10-year-old who will grow up and learn to see her parents in a different light, in this respect, J will remain ten years old.

I still love J very much. This message is not an ultimatum. I will willingly take care of J for the rest of my life. If I don’t get more help, I’ll somehow manage. But I don’t understand your reluctance to help. I don’t know if it’s the family culture, a lack of compassion, or such a focus on your own lives that you’re unable to see our difficulties.

Over the years, when asked by you for help, we’ve always responded favorably, with our time, our money, and/or a temporary place to live. At times, when we’ve seen a need, we offered assistance without being asked. For the past few years, I’ve hoped that at least one of you would call and offer to visit for a week, or to invite J to do something with you so I could get a break.

J is also surprised and saddened by your lack of involvement in her life and her care. At times, she fears that you no longer like or love her because of her brain injury. When we need help, her first reaction is to call one of my sisters. J has become reluctant to ask for your help because she now expects to hear reasons why you can’t or won’t help.

From a distance, our life probably doesn’t seem that difficult to you. We don’t have to earn a paycheck. We have all this free time. We have money in the bank. What’s the problem? Well, there’s a reason we can’t work. Believe me, there are few things as frustrating as having time, but not the energy nor the freedom from pain to use that time in an enjoyable or productive way. For years now, I’ve been using much of my limited energy to care for J and write about brain injury. The energy to write has disappeared. I’d like there to be more to my life than just caring for J.

How can you help? I need a respite break of at least seven nights every nine months. If all five of you participate, this means giving us a week of your time just once every 45 months.

Please help me set up a schedule now so everyone knows well in advance when their time to help will come. I need you, and J needs you.

Thanks for giving this serious consideration.

Your favorite brother-in-law, G.

Written exclusively for BrainLine by Garry Prowe, author of Successfully Surviving a Brain Injury: A Family Guidebook.

Posted on BrainLine May 5, 2011.

Comments (26)

I am also husband to a Brain Injury Survivor and now 2.5 years into this journey. My wife suffered from an anoxic, hypoxia insult to her brain after 15 minutes of lack of sufficient oxygen in the hospital. She was to be discharged the next day.

Much of what I read here is excactly what I am going through now. My inlaws still believe she will come back and if I say anything to the contrary, well they say I’m throwing in the towel. I am told that my attitude is negative and compared to a family friend and cancer survivor who never gave up. They have no idea what I do each day and why I am unable to work.

Someone here commented that they long for a call asking how I am holding up. That will never happen to me either although I’d love to hear that from anyone. I will always be the reason they are distant and unsupportive. Even her mother said I was an asshole at a family reunion. Imagine that, I take such awesome care of her daughter and have that said in front of you?

The brother who lives the closest doesn’t even respond when I explain details of a drs visit or rehabilitation appointment. Our friends stopped calling and never really came over after she came home. When people ask how she is all they really want to hear is she is doing well and getting better.

Our children were all beginning college or graduating from high school through all this. I had hoped that at least the girls would have stepped up to help their mother but they all were wanting me to help them instead. They were disappointed that they didn’t get the needed support at such a critical time in their life so it all fell apart. They have all moved out of the house, some still close by in school. When they do come over they just want to snuggle with mom or take her out to play. I was portrayed as the dad who went nuts and abandoned them. It was a convenient reason to tell people why they are not helping at home I think.

I always thought that’s why people stay away as gossip is spread but now I believe it’s mostly because they feel uncomfortable being around my wife now that she is so different. The honest people have said that to me and that she was so full of life and happy and now cries a lot and it’s difficult for them.

I’m learning how to let things go for the first time in my life. It’s not as easy as it sounds at least for me. I am doing the best job I can and at the same time, I miss my wife more than I could ever write. I know she grieves for her loss as well. The dreams of our future are gone and that is hard to accept so we take it one day at a time and can't look too far in the future because it’s very hard for me.

I feel my mental health is precarious, mostly I have to put on the best face I can for my wife each day. I do always know tomorrow is a new day and we are having more good ones than bad now. But it’s just us, she looks at me sometimes and thanks me for helping her and it fills my heart.

I am lucky and don’t get the angry spells I read about although I think that would be better once in a while versus the tears all the time. I’m told by dr that usually people with her disability cause no problem’s so they get the least attention if there is no one to advocate for them. But I’m really good at being her advocate, something no one in the family will see as nobody else goes to her appointments.

I too hear that I’m coddling her and she can do this without me statements. I sure wish it were true.

No man wants to not work, I believe. It’s hard to feel like a man in front of others who know I’m not working but they’ll never know that. I was at the high point of my career and a dream job when this happened and had to walk away from it all. But at the end of the day, I know that I’m excactly where I should be, as my wife would for me as well.

They say that there is a special place in heaven for caregivers. I like to feel that I’m already blessed with a new perspective on life. An outlook on life that I don’t think I’d have if it wasn’t for this. God Bless you all.

My wife of 26 years of age at the time had a AVM rupture. It’s been 2 and a half years and everyone who we thought we were close to is gone. No one helps me, I never have any time for myself, I’m physically and mentally drained, I don’t know how much I can take. My wife is not the same person any more but like you I vow to take care of her for the rest of her life or how ever long I make it. My health is quickly deteriorating I’m still young but loving like this will take it toll on me. But no one cares and no one will ever care.

I am my husband's caregiver. His TBI happened 5 years ago, he was kicked in the head by a horse. Since then he has had 11 brain surgeries, a hip replacement, he was in a coma for almost 5 months (a year after his TBI) he's had multiple brain infections. His last surgery was in May 2014. They removed his bone flap (right side of the skull) and cleaned the infection he had, I stopped working 5 years ago to take care of him (24/7) he is not able to walk or function on his own he needs a lot of care, I don't get any breaks!! But sometimes is better this way, I have experienced criticism, judging, negativity etc. From extended family so I rather deal by myself than with the help of negative people.
This is soo true. I know exactly where this guy is coming from. Asking for help for yaself to have a break is a hard thing to do but as carers if we want to continue we need regular breaks. Caring for someone with a TBI is one of the hardest jobs in the world. The unpredictable behavior. The lack of thought and sensitivity of your family member slowly kills u inside. All over the world we need more respite homes for TBI patients. My son is 23 and if I need respite the only place he can go is a rest home with the oldies. Not a safe thing if he wakes up volatile or in a bad mood. I agree that we all need to help not just the main spouse or parent. Take care life is short.

Shortly after my husband's auto accident and subsequent TBI, I read this letter. It was 2013. Here it is again, and it touched me deeply then and again, of course now. He explains our caregiving/spousal situation so beautifully. Thank you for reminding me, as today, I too, at 6:10 a.m. wake up another day feeling exhausted. T

hank you Gary and I wish you Miracles,

Deborah Brooks,
deborah@thepainterofbeauty.com

Thank you for this. It scares me, but thank you. I have only been caring for my husband in this way since December, 2013. That is when he was operated on for a brain aneurysm. But, it was deeper and larger than they thought. And now he has another in the same place. He has not recovered from the operation. He is not the same. He is here. I know he is doing so much better than other folks. He is just not going to be the same. I am the one at the helm now. We are in our middle 60's and things are not going to get easier. But in my trying to keep things calm and on schedule I am wearing down. Yet, he does not want anyone to help out. We got this he tells our children. We don't got this I tell him. This honesty scares me because I know I am more tired than I have ever been. And more stressed.

In 1981, at age 22, I survived the first of 9 VP shunt brain surgeries, a result of a serious brain injury I sustained during the 81 Super Bowl season. Since that original injury and subsequent first brain surgery a few months later, I've battled through major short-term memory issues, poor judgment, anger management issues and multiple gran mal seizures nearly my entire adult life. This journey has given me a different perspective than most regarding impacts to caregivers. Especially considering the fact that by the grace of God I still function fairly well.

What I have seen for decades, is what I call "The Ripple Effect". One of the first slides in my powerpoint presentation is a quote from me in 1984, "A traumatic brain injury is like throwing a rock in a pond. The ripple effect as to the number of people impacted is huge."

Those of us traumatic brain injury survivors either accept and deal with our injuries or are too depilated to even recognize we have a problem. I suffer from both. Unfortunately for my loved ones around me, they have no support.

I'd rant and vent, and feel better getting it off my chest, while wife carried my burden I'd just dumped on her.

If I'm running errands or doing work and my wife reminds me not to forget something, it's like walking into a minefield as she says. I may take her reminder calmly if I'd forgotten (which I usually had done), or if I had remembered I might explode on her to quit nagging me.

It's a no-win situation for the caregiver or loved one.

The worse part is many of us look and sound normal. As the article states, after the first few weeks or months, support slowly erodes away.

But the pressure continues to build for the caregivers.

I don't know anyone who enjoys asking for help, so please take this to heart. If you know of someone who is dealing with a traumatic brain injury survivor, and I have a very close friend caring for his totally incapacitated brain-damaged daughter, please don't make them ask for help. A simple phone call to check in, drop off a dinner on occasion, or better yet, spotting them a couple of hours to go to the gym, or a day or two so they can recharge their batteries will do wonders.

I have always said, my brain injury is much worse on my family than on me.

Just ask my wife of nearly 19 years and mother of my children. We're going through a divorce as we speak, as the pressure has been too much for her.

www.thevisgergroup.org

George

Hi George,

I'm sorry to hear you're going through a divorce. I too suffer from frontal temporal lobe dementia from all the years bagging my head with that dreadful football helmet. When I was first diagnosed my friends and family reached out with open arms. Now after a couple of years, I'm left alone to deal with my issues. I turned to drugs and alcohol to self-medicate my loneliness, anger outbursts and pain. Needless to say, that made things worse. I live in a sober house now and though I am drug-free I still have my issues to deal with on my own. I get tired easily and it's hard to reach out. I find it very difficult to explain my condition to people that are not close to me. They just don't understand or don't want to help or comprehend what I am telling them. I'm left to deal with my TBI all alone. I'm afraid as it gets worse, which is inevitable, I will be in some assisted living home run by the state all alone. This is my true hell and I'm scared every day.

Scott R

I am just so tired. I'm tired of feeling stressed out. My feet hurt from walking on eggshells and my stomach is tired from being tied up in knots. My husband sustained his brain injury in a car accident almost 15 year ago. Our daughter was 1 1/2 years old. Many years I have suffered through his anger. I have tried everything (read books about tbi, joined a support group, was very patient, was the best caregiver I could ever possibly be) but this many years later I am still hurting and I am still stressed out. I am sad because I wanted to have another child but I couldn't bring another child into the world with a father who was so angry. If he was like this when I first met him I would have never given him the time of day. My heart breaks that my child is an only child. My heart breaks that I cannot share my life with the person I fell in love with. He "died" the day of the accident and what emerged was somebody else. It's the anger and that crazy look in his eyes that moves me closer to just leaving him, something I never thought I would ever do. He is high-functioning (can drive, works, etc.). I once read a book about a family's experience with tbi (Where is the Mango Princess). The author was fantastic. She was very educated, patient, took care of her tbi husband and they really seemed like if there was a couple who would make it through a tbi injury it would be them. Sadly, 5 years after the accident that caused the husband to have a tbi they got divorced. Is this where I am headed? It makes me cry. This is not how I saw my life going. I hate tbi. No good came out of it. Why did this have to happen? Tbi came and destroyed our lives and for no good purpose or reason.
I am currently going through a divorce after 7 years after my husbands accident. I don't have the time to go into everything but at the time of his accident, I had a 5 year old and a 1.5 year old. Lived in a different state with no other support system. It has affected me and I am not able to function as I use too. I've had to quit several jobs because I can't handle the stress. My husband is getting back on his feet and is not there for me. He is using my now pstd condition against to try and get custody of our kids. His family only judge me and does not understand the reason I have had to do the things I have over the years. Had I of not done them, I don't think he would be as well as he is today. He tells me to quit living in the past but the past has effected me. I am trying to move own and adjust. He has never thanked me for all I have done. Actually I don't need a thank you. Just understanding!
How helpful to read this post and many of the comments. We are very early in. Almost 6 months. My husband had a "very severe" TBI, but has made a "good recovery". He presents well, is high functioning. Is trying to put it all behind him. If he has any insight, he's in denial. Very few, including, him and especially his own mother and siblings, see me as a caregiver. He no longer needs constant supervision, and is going to work, but he is not the same. Self centered, moody, irritable, little things make him angrier than I've ever seen. Subtly hyperverbal at times. Slower to complete tasks, hard to transition to the next activity, slower reaction time and awareness of traffic. Constant feedback from brief encounters validate his self perception that he's back to normal. A visit to a support group validated to him (by experiencing others with more obvious impairments) that he is "fine". All exhausting to me, and very few outside can (or choose) to see.
Thank you for your honesty. Husband, Wife, Mother, Father, Child, Sibling and survivor should read this!

I am reading your article and my wife has TBI. It's so EASY to care for her, simple... I just endure the yelling at me, the accusations that I cheat and ... I AM kidding. It's a nightmare. I have a painful rare disease, too. So I became despondent last year. She repeats mean statements like "you were suicidal!" BLAH blah blah. Over & over & over. One has to be an effing tough son of a Beyoncé... Because you die inside over & over. Just yesterday I finally remembered & blogged about the earlier times. When there was peace. She picked that day to read it and yelled at me all last night. I have been suicidal because there ARE others who can step in and she has tried to hit me. Obviously, I am not the most mature but I am committed to her and not thru a marriage paper. All I have been doing is enduring. She was terribly pushy before the accident. I exhort people to be their best because if you lose your brain, you will be stuck. So you do not have the will after a TBI (in cases) to apologize, do dishes, avoid throwing away bills, debit cards... You rely on another to save you, over and over. You may claim to be pretty, continue to gossip and you should PRAY your hubby/servant knows when you need to go to ER, can tell if your 30-day pads are working, know when to not say a word when you scream at him. Today I am bitter. A year from now, no way. So this is an embittered man who has done this (while chronically sick) for 10 years and I am SO trapped. I am 40. She is forty something. Thank you for the article James T. Templeton

I'm sorry you're experiencing what you're going through. As a person with TBI, Pit Tumor, PTSD, ADD, BiPolar and probably stuff that has yet to reveal itself. I can't help but notice the consistent reference as "caregiver". I do not know your exact situation but this I do know from my own life experience with my family and my wife. I am not trying to find fault in your ordeal. But please take notice as to the last two words in that paragraph. "My Wife", I did not say "my nurse" or "my caretaker". I said my wife because that means there is love, emotions, and feelings of being a couple, lovers and friends. The later or "nurse & caretaker" there may still be love and compassion but not on the same level as a wife. For me, that has created a wedge, a separation and almost like an inherited unwritten divorce between us. The extended family sees this also. This hurts the family and the person I am. I'm sorry to say this so frankly but it's the truth from the other side. If you consider yourself as a caretaker I am assuming that your wife is bedridden, can't hold a job, unable to do for herself 24/7 365 days a year. Therefore you must take care of her entirely. But I hope this isn't the case and you can read the next part. It will help if you take it to heart and understand it. If she is not bedridden and exists in life as someone who can contribute to society and to a marriage and at times has periods that she can't do those things. You must be able to shift gears from Loving Husband to Caretaker and back. Fluidly and without faulting your wife. I know in my case this hasn't happened. I hit a rough patch 2 years ago and she shifted into caretaker mode and never came back. I'm sure she feels she has - I love her with all I have - I am at fault for putting the burden on her but her inability to shift back to being my wife, lover and princess has caused her to be super critical of me and never allowing me to be her husband again. This has created serious arguments and fights. Tearing us apart and splitting the families. I love her - don't think I could ever leave her - I don't want to leave her - I can't imagine my life without her. But for you, I will say this: Be careful and rethink things, you are running the risk of losing her. For me, I would rather be with my caretaker and live and die in my miserable depressive life than imagine it without her. She may not be able to show me the love I need but I do love her. At times I feel selfish, I have considered leaving - if pushed to the edge I may. But not for me, for her. So she can find happiness and possibly live the rest of her life without the headache of having to take care of me. If I'm off base on your situation. I am sorry. But if it helps you I am happy. Someone can benefit from the eyes from the other side.

Thank you for sharing. Your words feel like my own and ironically were a year ago when at my counselor's encouragement I sent a plea out to my husbands 9 siblings for help. My husband is 9 years out from a partially resected frontal brain tumor. He has lost his job and like so many here have said "appears normal" but nothing is the same really. He is a mental teenager at his best. The lies, mood swings, unreliability etc have irreparably damaged our marriage. The only upside is that I feel I owe these people NOTHING; when he passes one day there will be only a small private service for the kids and Ii-the ones who have been there every painful step of the way.
I wasn't even looking for this and stumbled across it. I work at one of the best brain injury hospitals in the world, Craig hospital in Colorado. I understand where you are coming from...
You wrote MY story....... wow. I cried when I read this and I don't cry anymore. As a caregiver to a TBI patient who looks Normal, I understand 100% what you are living with. We become beasts of burden, exhausted and disconnected. Those who were there at first fade away over time.
Thanks for putting our story into words. We are 11yrs post TBI and I still long for a phone call from one of my in/laws....."how are you holding up, Amy?" or...."do you mind if we take Joe on a mini road trip so you can have time to yourself?" or..."how has the aftermath of the TBI affected our sweet grandchildren??" but nope....zero/ zilch and it's really starting to take a toll on my physical and mental health.
Got to keep trying and looking up and do best we can
Oh my ...this is my life. I would never be able to put this to paper. My two biggest supporters have both passed away and I have an overwhelming dread of what will happen to us in our old age. It's interesting that a lot of other comments mention the selfishness of the injured person though they are high functioning and the angry outbursts. Its been 12 yrs and I'm just worn out.
Wow, you nailed it. I just need to figure out how I can share this with our kids.

Your post brings tears to my eyes... I too was left to care for a brain injury survivor with absolutely no help, what so ever. In the first months I fed, bathed, changed and dressed my boyfriend. (40 years old) He progressed but there were always challenges. I was, at times, his PT, OT, SP and nurse, not to mention girlfriend, but that came last. I begged his family for help, his parents are still fairly young. I begged him to ask his teenage son to help us. No one helped. A year and a half ago he started abusing his meds and drinking. I contacted his parents again but got no help. Much later, they did agree to take him for 5 days. They brought him back to my house after 24 hours telling me they just couldn't do it. I desperately needed a break. One morning, the following week, I held my head under the water in the bathtub in hopes that I could just stay there. That is what my life had become. Needless to say, I am no longer caregiving. I couldn't do it any more. It was a hard decision but at some point I had to find a way to enjoy my life and that of my 12 year old daughter. The piece I didn't mention was the abuse I put up with. He would keep me awake all night yelling at me. He would get drunk and say some really hurtful and awful things to me and then I would have to pick him up off the floor when he inevitably fell. When he started threatening me, I decided it was time to end it. I have since had to file a restraining order and press charges for some of the things he has done to me in the wake of me breaking up with him. I have wondered if I had gotten the help I needed, if maybe I could have handled it. Maybe if someone other than myself saw his behavior, maybe with their help, we couldn't find him some help or talk him into therapy. I don't know if it would have made a difference or not but I imagine I would have been a much nicer caregiver if I had just gotten a break.

I am J. I got my brain injury when I was 36 and my son 8 months. He never knew the old me. Because I had so many other injuries, for almost 2 years of rehab, learning how to talk again and use a fork, I had people around. After that I was on my own too. I have no one to ask for help because they all live too far away. I can ask my son and he's more than happy to help but he's 24 and needs his own life. I used to have friends but they don't come around because of my mood swings. If I wasn't so afraid of the pain, I would just leave. I work hard all day trying to accomplish just one thing but it's useless. I still drive and have found that putting a note on the steering wheel helps me remember where I'm going. My original doctor passed and finding a doctor who understands TBI's is impossible. So, I stay home, remain in mental and physical pain. Oh well, the people in the car that almost killed me are living fine. The lawyers left me high and dry because they don't understand brain injuries. I got nothing to help my future care and the people who did this to me are having fun and could care less about what they did to me and my life. Thank you

This is well written and still very relevant even though it's from 2011. I am a TBI survivor who has no family to help, no friends to assist, no organization to contribute, no spouse. For those of you who are caregivers to a survivor, know that you have angels wings, even though almost no one recognizes it, especially the one you care for daily! Bless you!

I am in the same boat struggling on my own after a TBI after being extremely independent in every way. It's difficult for people to understand what TBI survivors
go through even your own family. They don't see any physical injuries so they assume you must be fine. They have their own lives to live. I would give anything to have my life back.

Thank you for your article and honesty. My husband was only 32 years old when a brain aneurysm burst. It was the 70's and things were so different. At first we had family and friends support, but gradually they went on with their own lives. We had a 1 year old and 7 year old. Honestly, I think some friends were apprehensive about a brain surgery patient. My health, attitude and parenting skills were sadly affected. I had to go to work full time to support us. Fast forward 40 years later, and I receive a call from my son-in-law that my daughter has a brain aneurysm. I was on a plane in no time, staying for months taking care of my granddaughter, daughter and son-in-law. My husband has passed, I miss him terribly. My life became a caregiver, mother, full time worker, caretaker of the house and yard until the children were old enough to mow etc. I am finally getting social with old friends, and doing volunteer work. If I get too happy, survivors guilt sets in....my husband LOVED life. He accepted his lot in life with grace and humor, but he didn't grasp how depressed, overworked, overtired I had become.That being said, I will alway be grateful he was in our lives!