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.