When I go to gatherings or parties and people ask me what I do for a living, I sometimes hesitate. "I am a hospice chaplain" can kill a conversation (pun intended). People look at me with sadness as if they feel sorry for me and most will respond with a soft voice, "That must be so hard." And try as I might, no matter how much I try to communicate the joy and beauty in my work, most people won't get it and it is hard to recover what may have otherwise have been a really cool conversation.
Don't get me wrong, my work can be really hard. But it can also be really sweet and beautiful.
I have a patient that we'll call Luther. Luther has Huntington's disease. While I still do not understand everything about the disease, I do know it is a hereditary brain disorder that is degenerative and painful to watch the slow decline of a once thriving person. Luther is young by all accounts--under 60--but is unable to walk and talk. I've known him for almost two years, but have been visiting him consistently for about six months. When I first started visiting with him, he was in a net bed for safety. His Huntington's is characterized by uncontrollable movements (chorea) and it was not safe for him to be in a regular bed. In his decline, his chorea movements have lessened so he is in a regular bed. During our visits I sit with him, play music for him, watch TV with him, and pray with him. Although he cannot talk, he can comprehend and communicates quite well through facial expressions, gestures, and guttural sounds. Sometimes he engages with me. Most times he does not.
A few weeks ago, I was visiting with Luther and his aide was feeding him lunch, and I noticed that he wasn't eating the savory foods, but relished in the sweets--thickened cranberry juice, coke, and apple sauce. I made a comment about it and the aide shared with me that when he was verbal and more active that he kept a stash of candy in his room. "He loves candy and sweets," she said. Skittles were his favorite. I joked with him, "Luther, I didn't know you like sweets. I love sweets. Let me see what I can bring for you.There is a Rita's right down the street." He smiled. After the visit, I called his nurse (as hospice practitioners, we work very closely together for the care of our patients) and asked her if I could bring him Rita's. I didn't want to bring anything that would cause him to choke. She confirmed that I could and that it would be a lovely treat for him.
On my way to visit him last week I picked up a Sweedish Fish flavored water ice from Rita's. I figured if he loved candy that this would be a good choice. When I arrived, I checked in with the staff nurse to confirm that he could have it. She exclaimed, "Oh, he would love that chaplain!" I went to his room he was laying down with his hands folded across his chest staring at the ceiling. I greeted him, showed him the bag, and told him what I brought for him. His face lit up like a Christmas tree. It took a few minutes to get settled--to raise his bed and secure a towel to lay across his neck and chest area. Once settled, I fed him spoonful after spoonful of the sweet treat. I fed him slowly taking care to assure that he wouldn't choke. Sometimes it was too slow and he would grunt for more. As I fed him, he looked directly in my eyes and smiled. It was the first time in all of my visits that I had seen him experience such pleasure. All the while, I'm talking with him about the sweetness of life, and God, even when we find ourselves in difficult situations and circumstances. When he finished, I asked for a high five and he gave me one and then another. We sat quietly for a while after watching television. The smile never left his face. Before leaving, I asked if he wanted more Rita's when I visit again and he nodded. I then asked if he wanted to pray. He reach his hand across to mine, and we prayed:
Dear God, thank you for your presence in our lives. Thank you for being sweet and good to us, even in the midst of difficult circumstances. Thank you for this moment of sharing and togetherness. Bless and keep Luther, that he may experience sweetness even as he nears the end of his days. And when the time comes, and you call him home, may he rest in your sweet presence forevermore. In Jesus name, Amen.
Luther grunted something that sounded like amen, released my hand and folded his hands back across his chest in sweet satisfaction. Moments like these, when I taste and see the goodness of God with my patients and their families, are the one's I wish I could share at cocktail parties. But the conversations never get that far...