This is an article I wrote for the Care Connection Magazine. The Care Givers Ride
As a child, I would write in my diary, then as a young adult, I would fill the pages of decorated journals. All those adventures and emotions are now trashed.
However, I started writing once again, but now I call it journaling. I believe journaling is the voice we can use to travel into the caverns of our heart.
As caregivers, it is important to have a safe place to visit. We spend so much of our time providing for our loved ones— creating a safe place for them. We sometimes forget about “us.”
I would like to share several pages from my journal.
April 26 2004
“I love flipping through cooking magazines, day dreaming about the wonderful meals I am going to prepare. However, I know it is only a dream. I barely have time to get a batch of pancakes thrown on the griddle, before my duty as a caregiver pulls me in another direction.
May 7 2012
Two more flips of the calendar will greet me with my 63rd birthday. Billy is only 2 years older than I am. I lost the brother I knew in 1987.He cannot change the fact 25 years ago someone kicked him in the chest and the life he knew is forever gone. He struggles daily to accept his imprisonment. Remnants of bull riding and serving his country decorate his room and overshadow the tubes that hang from his distorted body.
I haven’t always been the care taker of Billy. It doesn’t seem that long ago I questioned Mom’s decision to bring her total care son home from the nursing home. Mom died a little over eight years ago. I now fill that role of primary care taker. Yes, friends and family warned me of burnout and reminded me “You have a life of your own”. My first thought was to run away. I just spent the last 6 months caring for my dying mother. I wanted nothing more to do with sickness and responsibility. I tried to convince myself Billy would be better in a nursing home. But, something tugged within, an invisible string running through me—binding love, duty, faith. It runs deeper than I can imagine, reasoning and logic hold no power over this force. I now know what unconditional love is all about. I had a choice to walk away and give the responsibility to someone else. To my surprise I chose the role of the caretaker. When I enter Bill’s room I escape the reality of my world. I leave my to do list on the kitchen table. Gunsmoke and I Love Lucy re-runs entertain us. We recall old childhood memories and laugh together. For a moment, Mom, Dad and our oldest brother dance in our laughter then quickly return only to a memory. I wish I could say I never grumble about the work and responsibility, but I can’t. This choice can’t be justified to the outside world nor does it need to be, it is a connection between brother and sister that has no boundaries. Bill’s slurred words, “thank you, thank you” warm my heart.
August 10 2014
December 18 2014
As I write Christmas cards to my friends, something is missing, for over ten years I always signed my cards, with Billy’s name also. This is the first year I cannot.
There is a going to be a lot of firsts for me this coming year, the first Christmas not buying “Big Red” or gathering in his room around his bed playing a silly word game.
Billy died sept 4th and his death has left a hole in my heart, a disjointed feeling. He was more than a brother he was an extension of me, you see I have been his voice for over ten years. I chose his clothes daily, his tv shows, the time his light would come on and the time his light would go off. My total care brother and I merged 27 years earlier when an accident left him total care.
That is where I am now, stepping into the emptiness. This pain and emptiness would be black if I didn’t have the light of Jesus to guide me through. Jesus mourned for his friend John, so I know nothing is wrong with mourning—my care giving ride has ended.
Compassion fatigue is often the silent pain caregivers carry deep within,