The Not-So-Secret Confessions of the Caregiver

The Not-So-Secret Confessions of the Caregiver

One thing I readily accept after more than five years as a part-time caregiver for my father and 15 months as a full-time caregiver for my husband is that, try as we might, none of us are mind readers. This is especially true after a brain injury.

In an instant, the one person who used to know me better than I knew myself — my husband, TC — lost his ability to anticipate my needs and feelings. Tasked with getting himself healthy again, he no longer possessed the mental or physical energy to understand me in the way he used to. Losing this connection with the person I trusted most has been one of the most painful, isolating experiences of my life. As a caregiver, I know I’m not alone. 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.

If I could hand a brochure to the people in my life explaining what it’s like to care for someone with TBI, it would probably read something like this:

1. I didn’t sign up for this gig

Now, don’t get me wrong. That doesn’t mean I’m not willing to do the hard work. It doesn’t mean I won’t stick around or refuse to enjoy the happy moments ahead. It simply means I don’t have to love every moment of this experience. I’m entitled, now and then, to feel scared out of my mind or overwhelmingly sorry for myself. I promise that in time I’ll rise above these feelings, but please forgive me. I’m a caregiver, but I’m also human.


2. Brain injury is contagious

It should be clearly stated that my brain also stopped working the day my husband’s was attacked with a baseball bat. Shock and stress do crazy things to one’s brain, including obliterating one’s memory. I may make plans and forget them or promise to do something and then fail to do it. It’s not that I’m irresponsible or that I don’t care. I’m just juggling a plate of such epic proportions that it’s a wonder I remember to get dressed in the morning. So, if you notice my acting flaky, it’s probably a sign I could use some extra help.


Which leads me to a very relevant and important point:

3. I don’t always know how to ask for help

One of the problems in learning how to live day-by-day or even hour-by-hour is that you can’t always anticipate your own needs ahead of time. In the weeks after TC’s injury, I was overwhelmed with offers of support. Unfortunately, I didn’t know what I needed until five minutes before I needed it. I felt guilty calling people last minute, so I often just took care of things myself. For me, the most valuable offers of help have been the ones that free up time, my most valuable resource. I call these “no strings attached” offers. They don’t require me to do extra coordinating or to go out of my way or even to send a thank you note. These offers are wonderfully selfless, which, in themselves, are a gift to the guilt-ridden caregiver.


4. Taking care of myself is a group effort

I don’t know how many times I’ve been reminded over the past year to take care of myself. It’s excellent advice, really, but it took a good long time for me to give myself permission to do so. Ironically, when I did start returning to exercise, getting more sleep, and sneaking in a few minutes of relaxation here and there, it didn’t go over so well with a few of the folks who had been pushing this advice. For me, taking care of myself means giving myself permission not to return people’s phone calls or e-mails right away. It means learning to say “no” to some invitations and giving myself quiet space away from the world. To truly support a caregiver in his or her self-care, it’s critical to ease up on your expectations of this person. Doing so will lift the caregiver’s load enormously.


5. I’m not perfect and I sure wish there was a manual for this

There are a few small things I wish I’d done differently over the past year, but for the most part, I’m proud of all I’ve been able to hold together. Beyond helping TC in his recovery, my biggest goal has been to stay present as a mom. Every one of the million decisions I’ve made over the past year may not have been the right ones, but when I witness how well-adjusted and happy our son, Jack, continues to be, I can sleep easier at night. If there was a manual for how to handle TBI, my copy clearly got lost in the mail. All a caregiver can do is to try his or her best and ease up on the self-judgment.


6. Brain injury doesn’t go away

Trust me, I get it. Some people may be tired of hearing about our brain injury woes. Believe me when I say I wish those days were behind us. But even with a remarkable recovery like TC’s, there are lingering health concerns, psychological issues, and fears. Our life will never go back to the way it was, and neither will we. Over time friends and family will have to adjust to a new way of interacting with us. We hope you’ll like us for the new people we are, but we understand if you miss the old us. We miss us, too.


7. Making lemonade from lemons is an art form

Over the course of the past year I’ve fielded a few off-hand comments about our lives being “ruined.” I have to admit that word “ruined” stings a bit. Our lives are different now, but I refuse to accept the idea that brain injury is a life ruiner.  If anything, brain injury has provided us with the challenge of living better than we were before. Living better is a goal TC and I practice daily and it requires some serious mental stretching. We may not be able to put this attitude into action 24 hours a day, but it’s certainly what we’re working toward.


It’s easy for caregivers to bottle up their frustrations. With such a demanding role to fill, we are apt to put our own needs last. And as much as we sometimes wish others could read our minds or occasionally walk in our shoes and feel these demands themselves, our only real option is to stay honest with the people in our lives.

It’s my hope that in sharing our secret caregiver confessions, we can strengthen the lines of communication, benefiting everyone affected by brain injury.

Comments (121)

You might read the book “Miracle for Jen” to help find comfort and purpose in your new (sometimes awful) life. God can walk you through and bless each of you!

Wow...reading these words was like my thoughts on paper. Thanks for putting this out there!

Thank you for this post. Attention and awareness around caregiver issues is so important. My husband sustained his TBI in 2007, and the hope of a recovery, and our two young children were the glue that held me together. He never worked again, and putting my family first all the time drove me to a depression. Brain Injury is the loneliest club. The stress of the financial burdens may have been our final breaking point and we divorced after seven years into recovery. I know this isn’t a popular thing to talk about in this community - often I am ashamed - but it does happen. I didn’t want the kids to grow up watching us fight. We are on friendly terms and I still worry about him. He was finally awarded disability and is working towards finding stability. His family has stepped up to help him, finally. The kids, as they become teens, are learning what it means to have a dad with TBI. Sometimes the story is not inspirational. But it is real.

This was amazing...thank you...I feel slightly better not feeling alone in this...someone really gets it.
Thank you. This is how is was feeling today. The frustration, isolation... I sent this to all my family.
Sharing on my page like all your others, Abby. I hope they are read. We do not know who might be the next victim, but information must get out here. Thank you for the time you spend writing. You are a great one!
Such an important piece of writing. Thank you so much for sharing. :-)
Hoping that sharing your words will help those around me understand..it's not always by choice but always with love that we give care to our TBI survivor. Your words ring so true wether we like it or not .sending blessings of gratitude and strength as we all continue on our journeys.
My heart goes out to you and your family. I believe this scenario goes with any caregiver, regardless of the illness. This brought tears to my eyes as I can relate. Thank you so much for putting it out there. God Bless you, stay strong.
I am '3 months new' to caring for my loved one with TBI and your words helped me forgive myself after a particularly difficult day. THANK YOU
This was really well written!
Amen.
Thank you. . I wish I could hand this article to everyone we know.
Great post. Can definitely relate to some of this.
Perfectly stated! Thank you for sharing what so many caregivers feel but haven't the time to articulate.
Wise, wise words...you certainly have "been there" as have I. Great to know I am "normal" and not "alone". Thankyou. Love to have this actually made into a pamphlet that I could give to family and friends. With love. Ruth.
I have been saying for years that TBI is contagious! Glad to hear that I am not alone in that feeling!!
Thank you soooo much for sharing, Reading this felt like I was writing it myself. I now know I'm not alone with the way I feel and think, Thank you.
It will be helpful to show in brochure that TBI includes one who had a stroke and how it related to TBI. Then there my include items in your brochure. Either way - I will share on my FaceBook page encourage all care-givers for their advice. Thank you. Good advice is always helpful to all and finding out where is important.
This brought tears to my eyes !

I have TBI. After reading article, I have a better understanding about what is going on with my wife.

~DJ~

www.facebook.com/ptsdtbicte

Very well said! I couldn't agree with you more. It's like you wrote the thoughts in my head. Thank you!

Thank you for putting my sentiments on the paper for me.

I am a 19 months old caregiver for my husband who survived TBI from a car accident.  Just had the hardest new year ever....my husband is going through a moody emotional stage where he could hurt others unintentionally ( or could be intentionally)....repetitively asking for water, shower or moved back and forth from bed to wheelchair.....he is a tall big man, even with hoist, it is a big task....I am so drained emotionally and mentally.....i agree with TBI  is contagious....i have many vocabs disappeared from my brian....somedays I feel like I am the one with TBI cos i can't even finish my sentence for I can't find the right word.

 I also am very tired of explaining myself to his family ....so i just let it be....what they want to think it is none of my business, as long i know I am doing my best for my husband.....they tend to criticize of this and that being not good enough...but when asked to take care of my husband...they stay quiet, none of them dare to take him in to their home even for 1 day. So why are they so fast in judging my ways and decisions to care for my husband? 

sorry for rambling on .....i know you must have heard and experience similar situations .....

Again, thanking you for sharing your life and writing that article. 

Really made my day. Have a blessed 2014 everyone!

Well done sister. We just past (by one day) our two year mark of my husbands crash. You are skilled in your description of the feelings of a caregiver. Good job. Give yourself a hug for me. I will give myself one as well (if I can remember to do MY self care for the day). Una Stamus!
My husband and i were in a motorcycle wreck June 2013,my husband suffer TBI.I sometime feel like i am crazy,and feel alone all the time.I miss our life,and want i back. I have never been the decision maker and now i have to be. I will be talking to him and get no response back sometimes. I long for him to hold me and love me like before the wreck. I am sad all the time,and never know what he will say, most of the times he speaks in anger.I have had to have him picked and hospitalized one time,and that was the hardest thing i ever done.He sometimes speaks out about that and holds it in him the bitternes.I try to explain i just wanted him some help,but he says I'm the crazy one. I am so lonely and my family just doesn't get it.my mom thinks he does things on purpose,and my boys don't want to deal with it.My daughter and grandbabys live with us and he really hates my daughter always making remarks.Its so hard sometimes,and i was wondering does anyone else go through this or feel this way.
Thank you so much for writing this. It is so what I feel and have not been able to either put into words or, at times, even admit to myself how I am feeling and coping. My partner and I are into our 9th month since his accident and I feel we are still trying to find a formula that works ( an ongoing project I suspect).
Ah yes, we seem to always be in the process of accepting our 'new normal'.
Yes it is contagious. You start to have memory issues and word finding problems. It is call being mentally exhausted. The families don't understand and are very critical. The spouse is angry and resentful and in my case feels I'm in it for money. Seriously? What salary would be a reasonable compensation for 24 hr care? None!!
I so relate to all this. The question people ask more often is how's life going ? I said it's going just differently. I've tried putting myself in my husband' s place, honestly I myself would have lost it, most likely had given up if I was in his state, physically, mentally I'm happy to say he remembers a lot & loves me if not more today then he did before we got married. He was injured overseas 8/5/2011 severe TBI caused by a grenade blast, shrapnel went into his head/brain (Dr's weren't able to remove all shrapnel being it might cause more damage then good & felt it was safe to leave those small pieces of shrapnel in the area of his brain. Up till now he requires total assistance, his in a wheelchair, fed through a g-tube, I was blessed a week before Christmas he was not clearly but understandable said " I love you" I had been working with him about a few months on singing one of his favorite songs, I found out some TBI patients had regain speech through singing, ha ha I used to tell my husband before he got injured overseas that he couldn't sing because when he did it sounded as if he was talking through the song, hum isnt it ironic that this is how he is learning how to speak again through music/singing (I'm glad I tried this method with him) I anticipate when he is able to form sentences & can carry a conversation with me that to me will be my biggest accomplishment & reward through all of this. Yes I agree none of us caregivers sign up for this nor could have predicted our lifes based on the injuries of our spouses but I know its hard & challenging most times but I know my husband would have been tending to me, taking care of me probably better then I do :) My husband is an amazing person he inspires me with his outgoing spirit & personality & has hold on to his faith throigh it all. Oh I love how he sings now :) we learn to appreciate little things in life that before we didn't take into account & just him making small strives & progress are blessings & miracles to us. I thank God for being with us.
God I could swear this article was reading my mind....I am two years in caring for my husband who suffered an acquired brain injury following a cardiac arrest at the age of 55. While different from a traumatic brain injury the resulting day to day frustrations and challenges are much the same for the caregivers. Sadly my husband is not in a position to assist his own rehabilitation (although rehabilitation is not possible) as the areas that deal with motivation, initiation and executive functioning are irreparably damaged. As his caregiver I feel so isolated and lonely and it's a real relief to read that my feelings are so perfectly echoed by Abby's writing....
I am in the stage of trying to deal with all this. I am overwhelmed and scared. I cry a lot and my 5 kids are dealing with it as well. We are all tired. I am trying to take care of me. I just get so TIRED. We are 5 years out from his TBI and it hasn't gotten any easier, it is worse right now then ever. I am going to try to writing to see if that helps me. I thank you for this because I do feel so alone. My friends don't understand.....my best friend is the one hurting me most right now(my husband) I know he doesn't mean too. I keep looking for answers and haven't found them. I just know this article is everything I feel right now. I am hoping as I research thru this website I can find some things to help me. I miss my best friend, my love, my spouse. I miss all that used to be. I want my life back and I have to learn how to get thru. There isn't anything I can say that you haven't. The question I have is will it always be like this?
Thank you for writing this! I won't get into the details of my own story here, but I want to tell you how much this article means to me. After reading this I don't feel quite as alone and isolated as I have for the last 6 years. Thank you again!
43 years caregiver. Husband. Vietnam. Dealing with the VA has been the hardest. Then his family who had never gotten. I moved my husband out of the family about 20 years ago. Very hard but gave my a bit of a life. Do not give up your hopes dreams and career. I did and wish I had done more for me Find the new norm and make a life around it that works first for you then you will be able to deal with all that is to come My thought with all of you C
We would be delighted if you would join our brain injury forum as there are many families on there sharing their similar experiences. It would give others strength and hope to be in contact with you. Thanks for sharing your emotions with us - we are in the same place and understand fully. Our site is www.braininjurygroup.org.uk
love all these post knowing I am not alone!!I have been my bf caregiver since march 13 will be a yr this march since his drastic stroke and now has tbi and his unable to speak!I miss him being able to speak and do things its hard doing it alone his parents or friends come around or help!!!
Love knowing I am not alone! My bf had a major stroke March 7th, 2013 and had his skull removed to release pressure. He then got a brain infection, then blood infection, then had his skull put back in... so it has been a tough road. He is unable to speak and I am his caregiver 24/7. He knows has TBI. I miss us. I know it will never be how it was. It's a hard thing to do alone. Friends and his family do not help or come around
Thank you for sharing! Very we'll written & honest! It makes me feel better knowing I'm not alone!
Perfect! As a mother of a brain damaged 15 year old girl, this is pretty spot on as well....our lives will never be the same....but we keep going!
Honest. Thank you all for being a supporting community to each other. It helps!
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.
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

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