Caregiver Repose


5:30 a.m. the alarm goes off to “Mad World”. A song of my truth. Snooze for seven minutes. Feet hit the floor. Let the dogs out. Feed the dogs. Put the coffee on. Get the coffee. Bring the coffee. A second cup is needed soon. Make breakfast. Bring it to the table. Clean up. Shower for two. Dress each of us. Make the bed. From beginning to end the morning before work takes two hours. ALS intrudes on our life. Always.

It’s sacrilegious to impede upon the first cup of coffee. The solitude of morning coffee is my definition of self-care. Silence is most appreciated. Before long the first cup is over and the second must be delivered to where he sits with his morning Joe. The disease has robbed him of his ability to carry anything heavy. My arms are often his arms. He can still get his cup to his lips. I leave his coffee with him and go back to the sanctuary of my morning place. It use to be the other way around. This man who is the love of my life use to be the happy bearer of the morning coffee.

My morning place is a corner of my home office. The walls are painted a lovely blue, not too dark, not too light, and not too baby blue, more like the sky on a cloudless summer day. Blue is my favorite color. It always has been. My large overstuffed chair for my quiet morning ritual sucks me into its depths.

During the warm weather I open the French doors before I settle in with coffee. I leave it open so I can hear the far off rooster crow for a while. I leave it open so I can feel the slight morning ocean breeze. I leave it open so I can smell the saltiness of low tide. I leave it open because it reminds me of life beyond the disease that is consuming us.

As the sun begins to rise I often see the striking reds and oranges streaking through the sky. The world feels perfect for a few moments. Coffee, fresh air, a new day ahead. Tranquility at it’s best.

Texts come in. Emails need attention. My online students need this and that. The sun is up. The desk to the right of me is beckoning. The treadmill across the room is silently calling my name. That’s it. Respite over. Until tomorrow.