He was sitting on the edge of his bed. He was so thin I had a hard time believing that he had the strength to sit. His cheekbones jutted out, he had long hair that hung in loose strands around his face. His eyes were piercing when he had the strength to open them. I introduced myself and asked if he was up for a visit. He looked at me with these intense eyes and said, "What exactly would that entail?" I immediately liked him. I explained why I was a hospice volunteer (because my husband had died in this hospice in 2013 and I had a soft spot in my heart for it) and wanted to know if there was anything he had on his mind that he wanted to talk about. Just then the nurse came in to retrieve his lunch menu card. He hadn't filled it out yet. The nurse seemed surprised and said something to the effect of "Let's go". Matt who was pretty heavily medicated and weak took the piece of paper and a pen in hand very slowly and said to himself, "Come on Matt, suck it up!" He said it a few times. I offered to be his scribe and he roared "I don't need you to do that!!" He also mumbled repeatedly "Be patient with me." I did nothing but listen and listen really hard because he spoke very softly and it was clear there would be no repeating anything. Sometimes there were full minutes between his sentences. He finished his menu and we talked for about ten minutes. I ventured that it was curious that the nurse had been in such a hurry but had not come back to get it. I said this in a laughing way and he laughed too. He went on to say how everyone was incompetent. And we laughed and he complained about everything. I could feel love pouring thru me for him. He was erascible and witty and lovable. I don't mean that in a patronizing way. I mean it in a way where I was connecting with him on a human to human level despite our different circumstances. We talked about his high school and recurrent dreams that he had been having. I ventured that he must have been his own boss. He was surprised at that and said "I have always been my own boss." I laughed and said I couldn't imagine him being anyone's subordinate. He went on to tell me that both his parents had died by the time he was 17. He had spent an entire life time fending for himself. I wondered aloud how it must be hard to be taken care of now.
Finally his food came. He had a very hard time swallowing his first bite. This is common in hospice. The day where you can no longer eat food. You don't have the saliva and the swallowing ability to get the job done. I gently offered that he could have a smoothie instead. He looked up at me thru his hair and said, "And that's supposed to make me feel better?" More bittersweet laughter. He slowly lifted his plate and motioned that I should take it and put it in the far corner of the room. I said, "Are we banishing the food?" He said "Yes". He went on to pick up other things and I could tell whether they needed to be banished or put away. Most of the time. I got into some trouble with the salt and pepper. They had a special spot on a chair. Eventually he started falling asleep. I said I would go visit other patients and come say goodbye before my shift ended. He said, "No,no, no its ok." and then fell asleep. I went and did my rounds and came back towards the end of my shift. He was sitting on the edge of his bed with his hands folded on his table. He said, "I don't know when you work again but I have a feeling this is going to be the last time I see you." I said, "I think you are right." He crossed himself and knocked wood. After some silence he said, "I'm so pissed. I'm so pissed. I'm so angry." I asked if this was a new feeling. He said that it had started a few days before. It coincided with when he arrived at hospice. I asked if it was ok that he was angry or did he wish that he wasn't? After some silence he said, "I wish I wasn't." I said, "I'm so sorry but I understand why you are." He lifted his head and looked straight at me and said, "YOU understand nothing." And it felt like a giant, heavy and permanent garage door slammed shut between us. And he was right. The audacity of a living person saying that they know what dying is like is monumental. And isolating. He waved me off. I asked if we could shake hands. He said no (because he was OCD and not crazy about germs) but offered a fist bump instead. I felt horrible. Jangly. I left and the stafff were treating me like I had done such a good job at getting him to laugh and interact, but I felt a big heavy lump inside that I couldn't outrun. I debated whether I should disturb him again but felt like I had to. So I popped my head in and said, "Matt?" He looked up and I said, "I'm sorry." He nodded and waved me off again.
I will never ever again say "I understand" to someone in a situation that I can't understand, As an end of life doula I frequently feel like I am walking across a field full of landmines. And sometimes the only way to know what they look like is to step on them. That is one I will never step on again. Thank you Matt. It was a pleasure to know you.
I am a trained end-of-life doula. I provide guidance and support for individuals and families during the end-of-life process.