No Words for His Grief | Lewy Body Dementia Association LBDA

No Words for His Grief

by Ginnie Horst Burkholder

Outside my window the sun shines its October brightness on a scantily clad maple tree that has shown off its fall color for each of the twenty-five years I have lived here. Change is in the air. The bright and colorful leaves that still cling to the branches show hues that I know will soon be gone, and then the leaves will fall to the ground and become part of an eternal cycle. The eternal cycle carries on, reminding us that life has its way, and death and change are part of living.

For many years, Nelson’s mother was our last living parent. While he was still living at home, he started asking to call her each week. From the nursing home these calls were not as easy to make, but they continued to be important to him. When her death was imminent, I began preparing him for what was to come. I was afraid when the time came he would ask to go to the out-of-state funeral. I was unsure if this would be in his best interests. She was buried a week ago at the age of ninety-eight. When I told him about her death, we talked briefly and he said little.  I didn’t detect any emotion and so I steered him toward the patio. He asked for a tissue and blew his nose, but I attributed that to a cold I suspected he might be getting.

The day of her funeral was a perfect warm and balmy fall day here. Without mentioning the funeral, I took Nelson from the nursing home for a snail’s pace drive through the nearby Beech Nature Preserve. His thirsty gaze seemed to drink in the fall colors. I knew his alertness took energy, and I was prepared for him to lose focus and fall asleep early on. But it didn’t happen. He maintained alertness as we drove back to the nursing home. Then I was sure he would fall asleep at lunch, but he didn’t. We called our daughter. He stayed awake. We called our son. He stayed awake and even chuckled. Then he was ready for a nap.

After a few days, Nelson asked me how his sister-in-law Betty was doing. Nelson’s brother and his wife Betty had moved Nelson’s mother into their home and had taken care of her for several years before her death. I told him we would find out. But something stirred in my awareness, and I started to wonder about what Nelson was really asking. Was Betty’s well-being the real object of his question?

A few more fall days went by, with my attention focused on a broken lawn mower, a computer issue, and a stray kitten trying desperately to adopt me. But in moments of attention to that inner voice, I began to feel I needed to talk to Nelson about how he was doing.

I watched for the opportunity. It came as I read him an email from Betty saying she was doing okay, but there was a big hole left behind by his mother’s absence. I finished reading and looked over at Nelson where he sat next to me in his chair.  He turned toward the baby doll that I held in my lap. To him that doll is so very real. “You know, I love you very much. You know that don’t you?” he said, his face pouring love into hers. I watched and tried to know what he was feeling. I asked him then how he was doing with his mother’s death.

He began to cry, and for the next few minutes we held each other and cried, the baby between us, and then I began to talk. “Life is hard sometimes. We didn’t plan that it would be this way. But I want you to know I love you very much.” I kept talking about pain, sadness, life, expectations, faith, and his reality. I reminded him that the mess in the bathroom that morning wasn’t his fault. I wondered if anything I was saying was what he needed to hear, and so I asked, “Is this helping or making it worse?”

“Oh, yes,” he said, his inflection appreciative but the words unintelligible.

“It helps?” I asked. He nodded.

During the remainder of this experience it slowly dawned on me. His feelings of loss and grief needed expression. With his inability to verbalize, he had little option to give voice to his losses, and hence he could experience little motion toward acceptance and peace. He was going to need me to do the verbalization.

After a time of naming his losses for him, followed by bursts of sadness and tears, I began to recite the Twenty-third Psalm, and he joined in. I began to sing, “Children of the Heavenly Father.” He joined in again, and we sang several old familiar songs together.  We were having our own little memorial service.

I had brought a notebook I put together of the songs we had been singing together the last few weeks. I pulled it out of my bag and showed it to him. The mood turned lighter as we sang each one, including “Bill Grogan’s Goat.” It’s a great song for him because he can sing the echo.

I read him the words to a song I had recently heard with which I identified in so many ways. I thought it might validate some of his feelings as well. It was Brandi Carlile’s “The Story.”

“All of these lines across my face/Tell you the story of who I am/So many stories of where I’ve been/And how I got to where I am/But these stories don’t mean anything/When you’ve got no one to tell them to.”

I thought of his inability to tell his stories – happy or sad – and how in spite of his great efforts, others often can’t understand him. I thought of the lines that have formed on my face during the past twenty years. I thought of the empty house where no one waits to hear my story at the end of the day.

We did some nursery school songs with the doll babies, and then he stood up and headed toward the door of his room. His interest had moved to something else. He was done grieving and mourning for now. I was no longer needed. I could tell by his demeanor, his expression, and his response to, “Is it okay if I leave now?” I was relieved.

I left the building after my visit with Nelson, and halfway to the car I found myself barely able to move forward as I leaned into a strong cold wind that promised more change. It feels like I do a lot of leaning into the wind these days. But change comes with life; life comes with change. And when we accept that, we are pretty much ready for leaning into anything.

© 2011 Ginnie Horst Burkholder

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