Together Again | Lewy Body Dementia Association LBDA

Together Again

by Ginnie Horst Burkholder

The day at the nursing home started out discombobulated. I lost my car keys on the way into Nelson’s room where I discovered it looked like moving day. All the books were off his shelves. Blankets were balled up. It happens now and then. I’m never sure if he really is preparing to move out or just doing busy work. I think it may have been busy work today because his first words to me were, “Wait ‘til you see the barn!”

“What barn?” I asked.

“The red one.” He looked significantly out the window. There is no red barn there, but we have one at home. He used to go down the hill to the barn to move things around and regain some sense of control when life got too far out of his management capabilities.

“Hmm…” I said, as I continued to look for my keys and reorder the room.

When it registered with him that I had lost my keys, he began helping me look. This was possibly a good thing. When he lived at home, occasionally he would find something for me. He has endless patience for searching. But when he started digging through my carryall bag with my lunch and everything else I bring for the visit, I distracted him. I had already looked there. I didn't want my bag turned into a jumble. I retraced my steps to Lowe’s parking lot where I park at a distance for the exercise, but the keys were not there. Finally I found them at the nursing home’s main desk where someone had turned them in.

Back in his room I was ready to decipher his mood and ascertain his interest during the time before lunch. He seemed restless; I couldn't get a take on what we should do. It seemed as if he didn't need me. He wandered out into the hall. Then I noticed his clothes were wet. We did a change, and he seemed to settle down.

Lunch came and I, not him, had more minor mishaps – spilled food in my bag, spilled water on the floor. I just couldn't get things to gel.

After lunch when everything was in order, I got ready to leave. He lay down on his bed and seemed content, but his eyes were open and he seemed reluctant to see me go. “Do you want me to stay a little longer?”

He blinked his eyes. That means, “yes,” when it is too much effort to speak.

I took my coat off and had him scoot over a bit in the bed. I lay perched on the edge beside him, one arm under his neck.

“What do you do when you’re not here?” This came out slow and halting.

I repeated to make sure I'd heard him correctly, and he affirmed that I had.

I told him, “Mostly mundane things.” I listed paying the bills, doctor visits, and other routine tasks. Then I remembered I had been reading old letters we wrote to each other before we were married. I was relishing those early days of our relationship all over again. I missed that Nelson – the one who would poke fun at me in one sentence and appreciate me in the next. I told him about reading the letters, and then I said, “When I'm not here I miss you.”

After a pause, I added, “It's not how we planned it would be, is it?”

“No.” His voice was quiet as usual.

“But it's what we got, so we make the best of it.” I spoke with a mixture of sadness and acceptance.

“Yes,” he whispered.

It was then I remembered a joke told by “Pop” that I had relayed to Nelson in one of my letters. On this day – some forty-seven years later – I told him the joke again.

A man went into his refrigerator and found a rabbit. He asked the rabbit what it was doing there.

“I'm resting,” said the rabbit. “Isn't this a Westinghouse?”

Nelson laughed heartily and I laughed with him, comforted by the observation that he seemed to get the joke, and the knowledge that once in a great while we can still find common ground, share a common experience, and reclaim our sense of belonging together. My dear child husband. I love you.

© 2012 Ginnie Horst Burkholder

To e-mail Ginnie about this story, click here.