When Taylor’s injury initially occurred, and in the first years following, I had little awareness of the continuous toll his traumatic brain injury would take on our lives, our family, and myself. I had no concept of the fallout that would occur in my own mind and remained naïve to the fact that I would face the task of rebuilding many things, including my own inner strength and the restructuring of my belief system.
My security in the future was replaced with a palpable panic and fear. Joy in simple things was exchanged with an undercurrent of silent sadness. There was also a knowing within each moment of every day that life had changed. I began to recognize my heart wasn’t the only thing broken by what happened to Taylor. Parts of my spirit had also been crushed.
I often remembered a day from my adolescence when my father took me exploring in Matthews, Virginia. Matthews is a place of simplicity—natural beaches, people moving with unhurried pace and ideal sunsets. Throughout life, my father brought us to the water, but this day was special because it was just the two of us. It was early summer, and while the air was warm, the water was chilly. My dad drove to a remote place off Highway 17 to show me a spot he’d previously discovered.
Our final destination was a small sandbar. To reach the bar, we would have to go through the water. The water reached my dad’s mid-torso, but for me, it was deeper. The water was colder than I preferred so my dad put me on his back. I lifted our belongings up over my head so they wouldn't get wet. My dad’s back felt like the safest place in the world. As a teenager those moments were rare.
Sometimes when I am feeling afraid of the future, I remember that day. I breathe the memory in and trust that on the other side of the deep water that we currently face, there is something good. Being afraid of tomorrow sucks. I know I can't live there. But fear of the unknown is something I struggle with.
How do caregivers put down the thoughts keeping us awake at night? How do we calm ourselves after hitting ongoing brick walls of managing this person we love and their daily needs? How do we make peace with the plateaus, while pushing our loved ones and ourselves to see beyond the diagnosis?
These ideas have helped me to explore the path to some peace of mind.
Push the Clouds Aside
In caregiving, there are periods of time when each day feels difficult. In late Spring, I realized I was viewing life through a gray lens. My brain was not in the best place. One of the gifts I offered myself in reflecting on the day with my dad was recreating a space of sunshine and security. Even if only for a few minutes I returned to the sanctuary of that moment. Remembering cleared some of the panic in the forefront of my thoughts. Panic was replaced with something brighter, less gray…more yellow.
As caregivers, we must practice letting the sunshine in. If you are in the midst of a hard day or week, journey back in your mind, or perhaps pull out some photos of a happier time. Dwell there for a bit.
Appreciate That You Are Enough
I recently read these words, “For today think about all that you are instead of all that you are not.” There are times I feel like I am drowning in caregiving duties. The endless appointments, scheduling issues, money management, medications to keep straight, and the reminder to keep up with what has worked in the past while staying near to the cutting edge of the future. It can all feel like too much. Then add the list of cooking healthy meals, doing the laundry, going to work, and fitting in your own self-care. It is easy to fall into the trap of feeling inadequate. Sometimes, the voice in our own head screams, “KEEP UP! KEEP UP!” Some days, keeping up will be impossible. Allow yourself time to simply be.
Be still. Be present. Be enough. Right where you are.
This is a phrase I internally roll my eyes at. Perhaps you do as well. Why is self-care mentioned in countless caregiving articles? Because self-care is critical.
I used to cringe when someone asked, “ How are you practicing self-care?” I also got defensive. But in truth, the wise, compassionate folks who share our journey know that this is important stuff. So as a reminder, from someone who does understand, self-care is NOT selfish. You are worth the time, effort, and energy involved in loving yourself. There need not be an ounce of guilt involved in implementing self-care.
Finally, Explore Realistic Expectations
What you are doing is hard. Don’t expect it to be easy. Instead, gear up for the reality of what you are facing. I become disappointed when I don’t realistically examine my capabilities within our situation. Instead of expecting myself to suddenly transform, I set sensible standards.
For example, I am not a morning person. Becoming a caregiver didn’t make me one.
Morning expectations now require that I stay calm, practice patience, and don’t come undone over little things.
In learning how to manage the small, we become better equipped to manage the large. True story: Rome really wasn’t built in a day. And a well-rounded caregiver doesn’t just come into being because a trauma occurred. Becoming is a process, a transformation. Allow yourself the privilege of the journey. While the person you care for is still becoming, so are you. I have a feeling you are both pretty amazing. Give yourself credit. Know you are not alone. And whenever possible take a pause to dip your toes in the sand, climb a real mountain, take a nap, or binge watch your favorite Netflix series. You are worth it all.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Kay replied on Permalink
Thanks for your post. We as caregivers of someone with TBI don't usually cut ourselves a break,,,,,,we deserve it though....