One month ago I began the process of caring for my brother soon after he was discharged from the rehab hospital. We were sent home with an illegible handwritten triplicate copy of his medication instructions and follow up appointments that we were responsible for setting up. I took on a different kind of role with my brother than I ever had before. I was still his sister, but I was also his caregiver. I was responsible for helping him to remember medications, giving him messages from friends and family, and counting out his vitamins. I cooked for him, I cleaned the bathroom, I picked up pieces of paper and bandages that had fallen on the floor that he could not reach. I did his laundry and I made phone calls. I faxed necessary paperwork and I made a calendar of his many appointments with several different specialists. My mom and dad worked full time as well. They were at the apartment a lot of the time, helping with transportation and coordination and they were also running around, filling prescriptions and grocery shopping. We had no idea that it would take all three of us working constantly to fulfill my brother's needs...no one at the hospital talked to us about discharge planning. No one sat down with us and made a list of some things to expect. It took two weeks before in home nursing care and physical therapy started. My brother went from having physical therapy three times a day in the hospital to zero times a day at home. He began to feel like he wasn't making progress and it was difficult at first to get on a good schedule of sleeping and eating. The final week of my stay seemed to lend the most consistency. It took three weeks, though for everything to settle out and I don't think any of us were prepared for it.
My brother kept a positive attitude. There were times of frustration for both of us. I think we both wanted to feel that our perspectives and positions were understood. My brother often wanted to "just get out of the chair and walk" but he knew he couldn't. It was a test of patience. It was a test of perseverance. It was a test of communication and of understanding. I think all of us endured the hardships and became closer. I think all of us gained a fuller perspective on each other's experience.
Many nights I was inflicted with bad dreams. I often couldn't remember the exact content, but they definitely related to my brother and the pain he was enduring. I often woke up at 2 or 3 in the morning and didn't go back to sleep until 5 or 6. As time went on, the nightmares faded and I was on automatic pilot. Friends and family told me how nice it was of me to make the choice to stay with my brother. I don't think "nice" has anything to do with it. I love my brother. I almost lost my brother. Being there was a given. People have asked me how it feels to be back. I must admit, I don't know. I hardly knew my feelings while I was in San Diego last month. Now, the experience seems almost far away and distant. I feel disconnected from it, but I also never felt that connected to it. I was both fully present and fully absent. I do know that since being back, I become quickly angered and the anger eventually gives way to tears. I feel like a child. I'm walking down the street with Brodie and Brodie won't drink water. I'm worried about his transition to coming to live with me. I don't know if he's dehydrated. The pace is too slow for me. I'm too hot in my jacket. I'm thirsty and I didn't bring water for myself, just the dog. I feel like punching something. I'm overwhelmed by feelings of anger, sadness, and loss. I picture my brother. I feel the depth of his pain and I feel like I'm going to lose it. I know I want Brodie to drink to prove that I can care for something, to prove that if you just exercise and drink water and eat good food, you will be ok. But life doesn't work that way and the more I worry that he's not drinking, the more he refuses to drink. It's a lesson in letting go. It's a lesson in ridding myself of guilt, thinking that I somehow have more control over life's circumstances than I really do.
So, I'm back at home in South Pasadena. I'm back to my life at work. I'm enjoying early morning walks with Brodie. I'm fostering my relationship, which has been seriously neglected in the past couple of months. I am feeling my feelings for the first time in several weeks. I feel grateful everyday for the many blessings I have received. I make it my intention to notice the daily blessings...the gentle breeze, the chirping of birds, the clouds and the rain, the sun and all of its warmth, my friends and my family, a sense of hope. It feels good to be back in a familiar place where the houses and trees and shops are all where they were before and even though so much has changed, from the outside, not a soul could tell.