The Not-So-Secret Confessions of the Caregiver

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Thank you! I hope people from these support groups, medical teams and the people paying for the treatment read this. After 3 years not looking after myself and having almost zero support I had to make the decision to walk away, it was literally killing me. Friends abandon you after the first few months, you fight every step of the way and other people dictate when you can go out and when you have to be back by, I've told my family not to care for me if something happens god forbid, but to put me in a home. I wish you all the best for the future, you're 100 percent right that there is no going back to what you had before, the only way is forwards and I hope you make it!
I am a caregiver. What I miss the most is just a small amount of "me" time here & there to go out with my grown daughter. She lost spending time with her mom when my husband acquired his brain injury. He is visually impaired plus cognitively challenged. He is alone while I work full time. It is hard to leave him alone even more for me to go have fun. I do wish family could read my mind and invite him to do things to give me free time.

I’m a 58 year old woman been taking care of my husband. And I’m tired stress and need some me time . But don’t have my family or his to give me relief. And every other weekend I take care of my mama and him at the same time

Beautifully written! 7 years out. Tired of not having someone who can care about me rather than my always taking care of him. It is what it is I'm afraid.
Great job Abby! After 11 1/2 years of TBI caregiving for my husband (& father of 2), this is a great compilation of so many aspects of my life. Thank you for wrapping it up in a neat little package!!
Well written ,my son was struck by lighten almost 2yrs. Ago we take it day by day .
Very well written! You definitely hit the nail on the head. Thank you!!
Extraordinary! I can relate. I am caregiver to my wife who sustained a traumatic brain injury just over 4 years ago. Abby describes every moment of pain and terror in wonderful detail!
You worded it perfectly. Its been 8 yrs since my sons TBI and Im just now learning how to take care of myself. Its so important to find me time and believe me its very difficult. Thank you.
Thank you. I am not only the one with the acquired brain injury from a car accident, yet I still have to be not only my caregiver but the head of our family. My husband was diagnosed Asperger's and we have 4 children. I even still taught for 8 years after my injury and the last 4 were the hardest. I cannot do it all by myself and so everything is crumbling around me, my family and my home. There isn't any family to help and no one gets my invisible disability.
Thank you! You are so well spoken and now I know how to help our friend better! Prayers to you and your family .
So well written! We're new with an "acquired" brain injury and I'm really just beginning to learn! Wow- is all I can say! So helpful to read these many "exact" feelings that I'm not the only one feeling like this as a caregiver! Thank you!! Please, keep writing!! Xoxo
So well said!
I have never heard it explained with such accuracy. Thank you for sharing.
Caregivers are a different breed of people. We endure beyond the daily routine. I take care of my father for 10 years now. He's 93 and my boyfriend who is 63 has early onset of Alzheimer's and I do what I can for him. I appreciate the fact that you are honest enough to say...We don't always have to like it even though we are willing to go to the end with it. Blessings!
Three of my six children have a TBI from a snowmobile. Ther service and the passing out at work. My experience with them has helped me with the older people of the community buy putting my name on the caregiver list at our hospital here in town.
Though my husband "only" had brain tumors and not a full-blow TBI, it still is a TBI of sorts. Your words and thoughts echo everything I ever experienced in his 16-month ordeal and how others treated me, those that I thought were my friends. Thank you for verbalizing these thoughts and reassuring me that I really am not crazy!

Excellent job describing "life after a TBI" for the family.  My daughter is a teen, so many days I try to decide...TBI or teen girl?  It's hard to describe to those around me, who automatically say "teen girl". many uncertainties. 

I found the TBI to be "contagious", as well.  (Did I remember to pay the bill, turn off the lights, call the dr back?)  ;)

love to you all.

-Autumn Olson

Perfectly stated and exactly how I feel! THANK YOU for making me feel like we're understood by someone!
I was a caregiver for my husband whom I had been married to for 45 years. Unfortunately he was diagnosed with a Glio-blastoma brain tumor! Out of all the things I read nothing compared to what I read here-so accurate!! Is totally the way it is! Thankyou
Thank you for eloquently expressing life as it is post TBI for the care giver.
Very well put. I have a family member with a brain injury, and professionally I work with families affected by brain injury every day. This was a good reality check for me as a professional. Thanks for the perspective!
I really needed this today to know once again, I am not alone in how I feel.
You may not be a mind reader, but you have read my heart. I am five weeks into this journey and am grateful to read that I am not alone in my emotions. Bless you and your family.
This so resonated with me and is exactly what I needed to communicate to people - 2 years on - what we are going through, why they havent seen us, how we live, why we dont return calls or forget birthdays, etc etc etc.
Hello, and thank many of your thoughts resonated with me. I have been caring for my ill wife now for about 10 years. I missed out on our 30's and am now missing out on our 40's. She has MS, and while she is mentally alert, over the years, I think she has decided that I am the bad guy. The loneliness is the hardest thing to take, and while I try to go to the gym on a regular basis to get some "me" time, it just doesn't happen regularly enough. I'm just flat out too exhausted to even go. We have become quite the hermits, and have no friends anymore. Getting her out of the house is nearly impossible with the effort it takes, and she fears being far from a bathroom. The only people I get to see or interact with are those customers that I still have with my business, which is our only source of income. I have also recently realized that I nearly recoil in horror if anyone even so much as touches my arm. I'm just not used to human contact anymore. It's sad, but it's hard to look forward to the future. I'm glad that we only have one teenager left to turn 18, and then some of the pressure will be off...I can so relate with the loneliness. I sometimes wonder if anyone even knows we're alive anymore...God Bless...
Wow! This is the first time that I have heard "real" feelings and realities of caring for someone with a TBI. I am 18 months in and it has been a world of change and unreal expectations. My bf of 16 yrs was hit as a pedestrian and is physically altered as well as the brain stem damaged. The hospital and rehab center made him feel like he was going to be fixed given some hard rehab work. This just made me feel crazy because I had watched him everyday very closely for a months in the hospital. I miss what was and it is hard to not know what is real for his recovery and what will not recover. Thanks so much for everyone sharing. I have found it is sometimes a minute by minute lifestyle. Good Luck to all!
The realization that I'm not alone in this... is precious to me!!! Thank you so much for your help in making be realize that its okay to be human, feel unsure at times and get overwhelmed... that its okay to ask for help &&& seek help. You have no idea how much I've felt alone lately in dealing with all of this but to know I have somewhere to go that will help me get through this. It means the world!!! Thank you for all of your post!!!
Thank you. I AM not alone. Even when I think I am, I will think of all of you
My husband of nearly 40 years suffered a Brain bleed on May 7 and now has severe aphasia and cognitive/personality problems. Your blog has been a source of comfort to me as I negotiate this path. Thank you for sharing your thoughts that echo our feelings so well. God bless you on your journey.
I just adore your writing. You find the perfect words to capture all of my feelings. Apparently we have some friends in common and I've been meaning to reach out to you. Thank you for continuing to share.
Thank you for taking the time to put this all in writing. I'm dealing with not one but two patients recovering from a motorcycle accident. My daughter, 16, has a mTBI that is lingering on and one, presenting one challenge after another, while my fiance lot his leg and suffered multiple broken bones in the same accident (He was driving). I'm balancing care giving of a recent amputee, and mTBI patient with working a full time job, and often time feel like I'm on the brink of losing my sanity. I really appreciate your article and you sharing your deepest feelings. I was browsing this site today after another frustrating day of watching my daughters headaches severely impact her life. Thanks for this site being here, I'm grateful her TBI is on the mild side, but none the less, like is described here, it has changed everything about her, and reading your article, while moving me to tears, also helped so much. THanks.
Thank you so much for these words! my wife of 2 months has had a TBI for 4 months now, although not diagnosed until recently. Since the time she had this incident, life has been pure hell. Our home has become a silent , dark cave where everyone talks in whispers and walks on eggshells. Her personality has totally reversed and now she is convinced that I am to blame and can't be trusted. She is convinced our marriage is over and there is nothing I can really do about it. Your writings have put me at ease as now I see that I am truely not alone and my situation is not unique. God bless you
Yoi have identified everything we have seen in our daughter's life when her husband suffered a brain injury 6 years ago. It has affected both extended families and it is here to stay. We all need friendly reminders of what they go through on a daily basis and that we are not alone! Thanks! Mary T. , Louisville, KY
My husband had a bicycling accident this past April (almost 5 months ago). He sustained TBI moderate to severe. He is relatively young (53) and an athlete which helped in his healing. But life is not the same. He is different and although for the first two months I was strong and present, today I feel very unkind and angry. I get angry with him and know that I am angry with the injury itself and the changes it has brought to our family. I feel I am not helping the whole process of healing. Sometimes I want to leave the marriage but know that isn't an option. I mostly feel alone even if I have a big family and lots of support. I have trouble finding the love I had before.

"Although many of us rarely get a moment to ourselves, we often feel as though we’re living a life sentence of solitary confinement. We wish people could see beyond the brave exterior. We wish we could better articulate our own needs. We wish everyone in our support system were capable of understanding the tough choices we’ve been forced to make. But at the end of day, we’re simply too tired to explain ourselves."

I am a 16 year care giver survivor and when I read your paragraph above it totally broke my heart.....its the story of my life!  We had only been married for 8 years and had a daughter that was 3 and one that was 10 weeks old when my husband was diagnosed with a thematic mass which in layman's terms is a very slow growing inoperable brain tumor that eventually stopped the flow of fluid from his brain which caused adult onset hydrocephalus which lead to 10 surgeries from complications with a shunt that had to be installed to relieve the pressure of fluid.  We have lived through the effects of a TBI everyday and it has been a grueling experience that I will probably never be able to totally verbalize. It is the most isolating experience ever, yet your always under a microscope, constantly being judged by everyone for every choice you make.  I have earned the T-shirt that says "don't judge until you have walked a mile in my shoes".  I have had to make the most difficult choices over the past 16 years and I am sure they were not always the right choices but I did the best with what I had to at that moment.  

I literally sacrificed my own life trying to make our "family life" as "normal" as possible for my daughters. I never wanted to let my daughters see beyond the "brave exterior" while all along a small piece of me keeps dying inside. Even though our daughters lived under the same roof they have very different feelings about choices I have had to make and continue to have to make and I can just pray that someday they will understand.

If your just starting this journey surround yourself with a support network that truly understands TBI  because if not it will become the most lonely, isolating, "life sentence of solitary confinement" that you can ever imagine. You will suffer in silence every day. Friends and family will eventually flee because it is a way to complicated and overwhelming situation to deal with long term.  16 years later I have never been more alone or so afraid.  At 45 I am crushed, hopeless and defeated and I know as his mental health continues to decline, the hardest choices still lie ahead and my strength is gone.

God Bless!

My son fell 13 feet on his head over 3 years ago. I was told to pull the plug. He had finished 4 years of college and turned 23 in the ICU. I could not do it. I fought with doctors for 12 months while he slowly regained consciousness. They kept trying to stick him in a nursing home. I wish I could take care of my son. I had to quit work just to fight with others to give him the proper care he needs as it is more than I can provide. He can talk, read, write, use a computer, feed himself and do a host of other things, but he is still confined to a wheelchair and is using diapers. Most basic body care is more than he can master. I need support to help me get him to the next level but it is very hard to find. The best thing anyone told me was to find out who was inside my son's body and to help him communicate with the world. I am so glad I did not give up and that I saw the intelligence in those bright blue eyes when he could not speak or even whisper. He is different but a more loving guy I couldn't find. Thanks for all your words.
Brain surgery for aneurysm in our case, going on six years now. 98% the man I've always known, 2% a complete stranger, sometimes a scary one. Constant irritability, lashes out to me verbally, is great with everyone else. Like living with a 16 year old boy, irrational, can't see the big picture, most recent issue is arguing with him over making medical decisions for himself-- he doesn't have good judgment, but legally is fully autonomous... Depressing, looking ahead, no hope in sight, can't leave the marriage (who would take care of him?). Feeling desperate and like life is just passing me by. His health issues take all my time and energy, used to enjoy art and socializing with friends, that;s all gone now. Depressed. Why isn't there an online support group somewhere for us??? Thanks for telling it like it is.
I'm so tired, I only wish it could be over. I'm 46 and I have taken care of my wife and children for 13 years. My wife became a quadraplegic thru a car accident. Just tired of meeting everyone expectations , including mine. Don't want to hurt no one, though I feel like I care the least fore is me. Wonder if a little selfishness is good.
Thank you. I have been looking for the right words to describe my feelings. You hit the nail on the head.
Thank you for your sharing. After 3 years, I really understand how important it is for me, as caregiver, to take care of myself.
Written so wonderfully. Thank you for sharing. I wish I would have reached out for a support group months ago. This is not something to go through alone and now I get that. I can't do everything for my husband (tbi from snowmobile accident) and our 3 kids. I needed to learn to ask for help. I do wonder how I remember to get dressed in the morning and make it to work on time.
Well done Abby. You speak for so many of us who endure the trauma as a TBI caregiver. The loneliness, and lack of empathy are difficult to tolerate, but I try to remember that what ever we are experiencing, it is much worse for our loved one for whom we are caring. We learn to enjoy the little things, ignore distractions and negativity, and try to remain open to new possibilities. We never know who may bring some sunshine on a dark day unless we open the shades. After a new friend shared the "Welcome to Holland" poem with me, I began to see things in a new light. No te rajas.
im at the end of my rope ...and so i decided to google it...and im glad i did...ive been doing it all for 2 alone with my husband ..have no children and spend my days ....tryin to reach him....but i cant....and ppl r rude...selfish and demanding...ive lost so called friends...becus i cant in the middle of something or i simply dont want to...ive trashed my body mind and soul...tryin to do it all...and in the end he dont realize he is i pray and wonder why me...whom can i turn i thought maybe there is a support group for me...because im losing this fight..and if i drop dead who will care for him the way i can....just another wife drowning in this pool of housework and broken dreams....:(
Hi Everyone, I am new here,however I have been working with TBI for the past 12 years just never so close to home. On September 22nd 2014 my fiance, aka the first boy who ever kissed me was in a motorcycle accident he arrived in a coma and we were told he was not going to live. The Surgeon saw him move the left side of his body and said if this was my son I would do surgery STAT off he went. After 5 of I swear the longest hours of my life he was out of surgery with a post CT scan that did not show any bleeding now the waiting begins. They removed the right side of his skull in order to allow his brain to swell while inserting a drain to control the pressure I found myself watching the ICU monitors more than I was watching the love of my life due to the fact he could not tell me what was going on. After 5 days of heavy sedation a CT scan was performed and his sedation was stopped the Drs indicated they would need to see purposeful movement within 72 hrs well as he began to respond by what we thought was purposeful squeezing of the hand was nothing more than posturing (which we had no idea what posturing was) a kick in the stomach was the best way to describe it. No purposeful movement indicated to the Drs that we should think about what he would want because he will never live off the vent,open his eyes or make any sort of meaningful recovery. We are a week in and hearing that there is no hope I refuse to accept we are going to keep moving forward 7 days was far to early in my mind to make any sort of determination the way I saw and and still do see it is the only thing in this lifetime that is permanent is death and I was not hearing of it this early in the game. We are starting week six of recovery tomorrow we have purposeful movement, tracking, eye contact and following of command at times. Despite all of the emotions good bad and indifferent we cannot go back and I have already fallen in love with what is sure to be a new "US" .
I have been caring for my husband for 14 years. He now suffers with TBI from a car accident. It can be very stressful on both of us. A lot of friends and family don't realize just how bad it can get. They look at my husband and cannot see any physical impairments so they just assume he must be fine. They don't realize that the mental impairments are much worse. They aren't with him when he gets upset because he can't remember his kids growing up, or watching him get upset because he walks around the house several times because he can't remember what he got up for. They don't see him get irritated when they are talking about things that happened when they were growing up and no matter how many times they ask him, he can't remember any of it. They aren't with him when he gets upset over little things that used to not bother him at all. They aren't the ones trying to calm him because he worries about what is going to happen in the future and if this is just going to get worse. I know they don't mean anything by it but I hope that friends and family of someone with TBI take the time to educate themselves a little and realize that this doesn't go away after the accident. This is a lifelong illness and it takes a lifelong commitment to deal with it.
My husband had a hemorrhagic stroke 3 years ago and while most days I do ok, today I really, really missed the husband who did more with his day than read the paper and play computer solitaire. The husband who would spend his whole day outside taking care of the yard and doing DIY projects; not the one who doesn't notice there are leaves to be raked unless it's on his to-do list for 3 days in a row. People are nice and they politely listen but don't get it. Or they tell me how well he's doing and how lucky I am. Reading the article and all of your comments unleashed a flood of tears, but helped me feel less alone in this journey. Just so tired of being the driver of everything. Thanks for being here and sharing.
My husband suffered a fall down a staircase and hit a concrete wall at the bottom. He lost conciousness for over an hour. He had what is considered a “moderate to severe” TBI with a subdural hematoma. He originally refused any help from doctors (left the hospital AMA) but after two weeks of being home, he sunk into a deep depression and couldn’t get out of bed to go to work. He went to the ER at our local hospital and they prescribed him Lexapro (an SSRI anti-depressant). That seemed to help but it caused increased anxiety and sleeplessness. So he went back and they prescribed him Ambien and propranalol. After a month, the Ambien stopped working and it just made him do weird things at night but he couldn’t sleep. He was miserable and exhausted and still trying to work 50+ hours per week. He started abusing alcohol to help him sleep and because he felt like he was going crazy all the time. The alcohol numbed it I guess. After 7 months, it got so bad, I had to call the police to our house because he was scaring me and the children. I locked my bedroom door but he would just break it open and torment us. I went to his boss and told him what was going on and they put him on a leave of absence. He was required by work to see a neurologist and psychologist. The neurologist wanted him to switch from Lexapro to Lamictal and to quit taking the Ambien altogether. The Lamictal gave him a terrible rash and headaches so he couldn’t take it. It was too hard for him to get off the Lexapro. He did quit taking the Ambien though. We put him on a schedule and very slowly weaned him off the Lexapro over 3 months. About a week after he stopped taking everything, he had a severe depression/anger episode. It was so bad that I almost left him. He did improve for about two weeks and now he seems to have regressed again. The doctors originally let him go back to work 10 hours/week, then 20 hours/week and now 30 hours/week. I do not think he can realistically handle more but he absolutely insists he wants to go back to work full time. Even at 30 hours/week, he usually misses at least 1-2 days of work per week due to extreme fatique and anxiety. All he can handle at work is sitting at his desk and doing the bare minimum of effort. When he is home, he doesn’t get out of bed and he just snaps at me and the kids for everything. My children are small so I feel so overwhelmed just with what I have to do for them; now I have to do everything my husband used to help with because he can’t do anything for himself. He is grumpy all the time and makes messes and makes the kids cry and some days I’m not sure how I’m going to make it one more day like this. The psychologist says if it was up to him, my husband should take a medical retirement and be on disability, but my husband refuses anything other than going back to work full-time. It just isn’t realistic and I’m worried he will lose his job and we will lose everything.
Thank you so much. It's nice to know that the frustrations and guilt I feel are normal and ok to feel. My husband has TBI from a military related injury and now has seizures and early onset dementia. Lately I have felt more like a caregiver and less of a wife. And I don't know how to fix that. Right now I feel like a mother of 4 instead of just 3. Thanks for reminding me it's ok not to be superwoman and to feel lost and scared. I am only 32 and this is not what I expected my future to be.
I cannot begin to thank you enough for this article. My husband was in a terrible motorcycle accident several years ago and the doctors never once told me he had a brain injury. Not even a concussion! I guess since it wasn't life threatening it wasn't important. He was rear ended by a motorcycle then when he tried to get off the road after being thrown from his motorcycle, he was ran over by a different motorcyclist. As you can imagine he sustained an enormous amount of injuries. Nonetheless about 2 months after his back and limbs were healed and he was managing good on his own he began acting seriously different. He was not the man I married 6 years prior to this. He got so angry one time he acted out violently and almost hurt his mother at which time I promptly took him to the doctor. He was referred to a neurologist. With him being a veteran and diagnosed with PTSD she saw him for a year and because she couldn't find anything visibly wrong and she told him he should consider see a psychologist and she couldn't help him any more and left us dumbfounded and not knowing where to turn. Two years later I still find myself trying to find answers and any kind of help possible and this article was a great help. It's extremely nice to know that we are not alone...which is the most debilitating problem loneliness and no one else understanding what each minute of each hour of each day is like living with this life changing injury. Just when I think I am in the acceptance stage I find myself returning to the anger stage against those people who caused this injury. Because of everyone here, our lives are somewhat easier.