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 (120)

Thank you, I read that with my mouth open... I'm still not sure exactly how I feel most of the time... I'm still numb & in shock... my partner (43) had a brain surgery go horribly wrong he remains in a minimally conscious state he has been like this for 2 years 3 months now. I feel alone altho I have some good friends but ppl even good friends and family go on with their lives feeling like they leave you behind. It makes me feel stuck sometimes. My partners family have not visited him or supported him or me it feels like theyve cut the ties and left us to float away.... a long way away. I love him so much I miss him so much just to hear his voice again would be a blessing..... I will take care of him for the rest of his life. What that means for my life well that remains to be seen.. it is a process that cant be rushed or predicted.
Thank you...I needed a good cry and you gave it to me. I think this is one thing you forgot. "A Cry" . I don't do it a lot, but when I do, I usually feel better afterwards. I suppose it's a pity feel sorry for me cry...but dealing with my husband and the repeated questions, anger outburst's and making sure he's taken care of...I do deserve this cry. Thank you.
Thank you for your candid reflection of your life with TC. My boyfriend was attacked at work and has long term issues. I love this man more than words can say, I have felt the same sting from my sister who doesn't understand the challenges of loving someone with a TBI. We deal with sensory input issues, neuro fatigue, time management issues and his avoidance of touch when he is over stimulated from work. I can't say it's easy for me, but as a nurse I am really trying to understand and support him all I can. This is difficult when my sister, whom I stay with when I'm in town says things out of ignorance. (I'm a traveling nurse and my sister and boyfriend live in the same town.) I have told her some of his issues not all because he is a private man and trusts me to keep much of his issues close. My sister just sees that he is late for our meetings and that all we do is text we never speak on the phone. She also doesn't understand why he becomes easily overwhelmed with certain situations. This being said, I love this man and will not walk away from him, I did that once when we were young and I missed him like a part of myself, never again....SH
Wow thank you so much for this post
Very helpful to me personally, thank you so much for this article.
I am so impressed by many of the stories I have read here, and what a lot of you are handling. We are 25 years post severe TBI, and I still don't get it. Some times my husband functions so well, and then he does something so out there I can't believe it. However compared to what many of you are dealing with Mike looks like Einstein. Like most of you I have become a parent and handle almost everything.I feel so badly because I get stressed and frustrated when he glitches. He has very little problem solving ability, short term memory issues, and aphasia.I wish there were ways to help him compensate for that. Often with friends in conversations, he says things that are totally irrelevant, and though the people are well aware he's had a head injury, I get embarrassed. I feel like such a bitch sometimes. As we mosey down the road into old age, I am aware that he is at increased risk for Alzheimer disease, and I find myself thinking "Great, so I get to handle that too" like it's his fault. I know so much on an intellectual level, but on an emotional level, it's hard for me to handle. I feel so selfish, I know he can't help the things he does, and I know he realizes he isn't the same person, yet he deals with that everyday. To anyone starting this journey I will tell you to stay in a rehab program as long as the professionals tell you its needed. Mike seemed so together and wanted to get back to work, so I gave in to him. Big mistake. Unable to work and fired down the road just as the ADA came into effect, however, that was not really much help. I also feel that if your loved one is acting out and refusing treatment, it may become necessary for you to leave so that they realize you can't do it and you mean it. I was packed to leave when Mike was an alcoholic, and the only reason I didn't go was he agreed to rehab. Unfortunately only 50% of marriages make it post head injury. Everyone close to this situation-adults and children are affected by and you must do what is best for you and those you love. Be strong
This page is always open on my tab to remind myself I am not alone, and gives me the strength to get through today and the next day. It never gets easier, but we can certainly try to make the best of what we have. Thank you for this perfectly articulated reflection of being a caregiver.
Let me just say,your story was very informational. I am married to a 56 year old male. Who suffered a TBI when he was 17. I knew about the TBI when we got married. Did not realize how much it would impact our lives.
Thank you for this article, my husband suffered a TBI in 2014 during a hijacking. It gives me strength to know that I'm not alone. I had to become a mother and a father to a 2 year old and 4 year old, it was not easy until my sister moved in with us to help with the kids and at least now I'd say my life is getting back to normal.
Thank you for your story. My husband's TBI was before I met him. So I have not had the long haul you have but your statement "I did not sign up for this" hit home I would say I did not realize how much TBI affected the survivor and spouse.
Since my wife's TBI a little over 2 1/2 years ago at the age of 41 there hasn't been 1 day I recall that I have not drank at least 12 beers to a case a day. It's just easier. I still take care for her 100% and love her 100%. There is just no sexual desire from her since. We have been together 24 years and both kids have since moved out leaving me alone. I know the drinking isn't good for my health but it's all I can do to stay sane.
My husband had a vehicle accident April 18, 2016. His face and forehead took the entire impact. He went to a Band-Aid station type of hospital, who did several CT scans. They told us all about all of the fractured bones, and the air pockets on his brain, and SENT US HOME THAT DAY!! He was off for 6 weeks, the ENT told him he could go back in 2. We have visited this same ENT since then, who we have told, that my husband has changed, he can no longer smell, taste, SLEEP (oh how I wish he could sleep) and over the past 3 months, he has changed in personality...SOMETIMES. The ENT assured us that he would see a neurologist. We are still waiting for that referral, since APRIL! Husband gets up EVERY morning yelling at me for the smallest of things. Last month, he began yelling and ran at me and hit me in the face. I work in a professional setting and had to take the rest of the week off to allow my swelling to go down. Once it happened, I stayed away from him for a few hours. I walked 5 miles. He spent the next day crying and apologizing and telling me he didn't realize what he was doing, until after it happened. I know this, and knew something was terribly wrong, other than just sinus and forehead fractures. We finally saw a different ENT today, This is the first time I have heard the term TBI. When I also heard the words, "I was surprised after seeing your scans that you are actually coherent," and "PERMANENT", I fell apart. He will always be like this? How to I avoid triggering his anger, how do I cope with the terrible things he says to me, when I know it isn't him, but the TBI? It still hurts, the things he says, even though he apologizes after the fact. He requested that I not "make a big deal about this with the family" "they don't have to be burdened with this" He even made off jokes, in the ENT's office that I could no longer hold him responsible for being a jerk, when he is, cause it's TBI. I know he is trying to make light of it, and internally he is ripped apart, but I don't know what to do, our attorney mentioned a possible neuropsychological, but their clinic also has the title "behavioral" I am so scared as to what his reaction will be if I even attempt to suggest it. I don't know what to do, but to keep quiet and take his outbursts, and keep away from him when he acts as though he would be violent. What do I do? I will not leave my husband, I love him unconditionally. I am just lost on how to help him, and us get through this.
My husband's recovery was good. He is mobile and independent. My biggest problem is the indifference and the inability to provide any emotional empathy. If you ignore someone that means you are aware of them and have made a conscious choice to ignore them. Indifference means I don't register to him. It's very hard for me. Do others go through this? How do you handle it?
Without telling my whole story--I believe there are similarities in all of our situations. What is so hard for me is being physically exhausted by this 24/7 caregiver job. We all have to grieve for the life we used to have. I miss the man I married. Because of his stroke, the man who used to be my lover has become my child. But it is wonderful to know that there are others who understand how hard it is!
Wow your list of 7 things you would tell people is so right on. I feel as though you could read my thoughts... thanks for sharing
Thank you all for sharing. For 6 years I have doted on my wife. Any question or problem presented I have jumped on immediately, anything she wants to do I stop what I am doing to help her or take her somewhere. She is about 85% the person she once was. She is very strong and determined (stubborn). She works full time and struggles with tasks that were once easy for her. I go to bed alot of nights scared that the event (aneurysm, stroke) will happen again. She was in the hospital for 6 weeks between ICU and not. I lived at the "Mark Preece Family House" just down from the hospital for this time.I have currently taken 6 weeks off of work due to stress from all sides. I am now just beginning to take time for myself and enjoy life. I do the best I can and I am just learning this is all I can do. Usually its the guilt and fear of allowing time for me that makes me question whether I am a good person or not. I am so afraid to go live life incase I am not with her if there is another aneurysm/stroke. One day at a time. I am beginning to take care of me and finding she is supportive and okay when I return home.
My husband was hit by a semi-retired on a major highway over 20 years ago. He was unresponsive and brought to a local hospital. He had many fractures and a severe tbi. After 9 days in a coma he began the process of rehab. He did not know me or his parents but always knew our children​. He has permanent memory loss. He is now ehibiting a lot of anger and agitation. We argue all the time and he has even hit me. I really don't know what to do anymore. He sees a multitude of physicians but no one for his TBI. What can I do???

By no means am I a professional, but I felt the need to answer your plea. anyway Get him to a doctor ASAP. I had brain surgery about 4 years ago (a benign tumor removed) and I know that any brain injury can change your actions. Fortunately, the only after effects I've experienced are increased agitation at times and a sensitivity to high pitched noises. He needs to be checked by a professional as he is probably not able to control his behavior and it probably bothers him as much as it does you. There may be medications he can take to help control his anger. Or there may be exercises he can do. Ignoring this problem could be dangerous. My prayers are with you.

Well done for sharing your innermost thoughts and fears. It is indeed a solitary experience that we did not sign up for and mourning the loss of the person you loved and shared your life with, does not go away. But what choice do we have? We either stay and fight every day or walk away. I could not do that and leave my husband of 44 years to be looked after by strangers in some sort of home. I am blessed to have wonderful family and friends who rally around me in times of need. But each day without him is tragic and sad. He would not want to be this way, but I have to believe, if we keep fighting and working, he will regain some of his life again and be almost the same. Right now he is progressing but we still have a long way to go. It is good to know I am not alone and your excellent piece give great comfort. I wish you and your husband great health and recovery

This was really well written!


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