The Not-So-Secret Confessions of the Caregiver

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.

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.

Well written ,my son was struck by lighten almost 2yrs. Ago we take it day by day .

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!

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.

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

I have never heard it explained with such accuracy. Thank you for sharing.

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.

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".  ...so 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

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

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!

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.

Hello, and thank you...so 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...

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!!!

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.

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.

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

"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!

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.

Thank you. I have been looking for the right words to describe my feelings. You hit the nail on the head.

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.

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 yrs....im 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 talk...im 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 broken...so i pray and wonder why me...whom can i turn to...today 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....:(

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 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.

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.