The unreal reality of my first Christmas without my sweet Dewey is behind me, while the vast expanse of a new year – the first full one – as his widow stretches before me. It’s hard to know where to look. As the trauma and grief ease ever so slightly I realize there is so much more to the story of our journey of these last six years. So much that I need to get down before it is gone. As I’ve talked to patient and supportive people about our journey and what I tried to do to help my sweetie, I have been encouraged to get the details down, so others might be helped. It seems I often did approach our journey differently, and that approach may have value. One friend, a Hospice Chaplain, said she changed the way she worked with dementia patients because of my stories and that it helped them, their families, and her, and that it has the power to help others. We will see.
Storytelling is a big deal here in NE Tennessee, and in the southern Appalachians. It is not only part of the culture, it is what has preserved the culture, what has presented that culture to the rest of the world, and endeared it to so many. The International Storytelling Center is 40 minutes from home. We found it the first summer we were here, and it became a part of our personal culture almost instantly. It became a part of our lives, introduced us to many friends, provided us with information, access, diversion and joy. Mr. Dewey said of our annual volunteer gig with the National Storytelling Festival that it was an opportunity to “recharge our batteries” every year, even as it exhausted us physically. And as LBD sank down over my sweetie, as the delusions gave way to hallucinations, as our realization of the havoc it wrought on him and in him sank over us both, storytelling became more important. Somewhere along the way, I realized that I could not keep him in this world, but had to join him in his. Storytelling made that possible.
I’ve mentioned some of the hallucinations – the ones we called Visitors – and how they were often just a benign presence for him. But there were others, and they became dominant in the last six months of his life. I have also mentioned that Mr. Dewey was a kind, sweet, gentle and generous soul, and that my greatest fear was the very real possibility, perhaps even likelihood, of losing that to LBD. It was a persistent shadow to me, just as Chucklebutt was to him.
One day, just about a year ago, it seemed the shadow had taken solid form. He started out churlish, impatient, dismissive of everything I did and said. By midday he was saying things like “I don’t know how you can live with yourself.” He told me I made him sick. He batted my arm away as I reached to touch his face. My heart broke. What had I done? “You know,” he said. But I didn’t. Everything I did made it worse. I begged him to tell me why he was mad, what I had done to make him so mad at me. I watched him sit strangely in his chair, walk awkwardly through rooms, or even refuse to move. Then I understood. I started asking him questions about what he was seeing, as his eyes scanned the floor constantly, and he reached out to pick things out of the air. “The Little People,” he said. “You’re hurting them.”
“Holy shit,” I thought. He is watching me stomp all over tiny little people. They were everywhere, it turned out. The floor was covered with them, thousands of them, and as I walked through the house, mindlessly, I was smashing them, kicking them across the room, into walls, under chairs, against the cabinets. Absolute carnage. Blood and body parts everywhere. And he was watching me do it. My knees buckled at the thought. I sat down next to him and did the only thing I could think to do: I put myself in his story.
“I’m so sorry, sweetie. I had no idea. I can’t see anyone. I did not know I was hurting anyone.” I was crying, realizing what he had seen. He started to cry; it hurt him so much to realize he had been angry at me for something I was unaware I was doing. It was so real to him, the floor covered with tiny humans, suffering, panicked, confused – very much like him, I’m sure. I stayed in the story with him.
“I can’t see them, sweetie. I can’t avoid them if I can’t see them. Can you communicate with them?” He said he thought he could. I asked him to try and tell these hundreds of people milling around everywhere that they needed to get out of my way so I wouldn’t hurt them, since I could not see them.
It made no sense to waste any energy trying to convince him that we were the only two people in the house. He had been watching this insanity all morning! Stay in his story. Work with his version of things. That’s what I thought. That’s the way I tried to approach his Visitors, all the hallucinations, the night terrors, Chucklebutt. Add them to the story. So that’s what I did.
It worked. He relaxed, stopped crying, told me he loved me, and was sorry he got so mad. Then he said he wanted to take a lie down, and see if he could convince these people to leave, or at least be careful around me. When he got up later, they were gone. He was no longer mad at me, or disgusted by my brutish actions. It was like it never happened. He had a vague idea that he had been angry with me, but didn’t remember why. That bothered him, so I told him it was okay, and that I loved him so very, very much.
The tiny people never came back. He had plenty of hallucinations, but not like that. But I always approached his hallucinations as part of his story, information to be worked into the narrative. To do otherwise felt like it would be just more violence, brutal, heartless, thoughtless violence. Neither of us ever did like that sort of story much.
Lewy, Dewey and me 