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Caregiving Reality

Not Scary

It was his turn at the front of the line. He was a fit man, by appearances in his late seventies or early eighties. With his baseball cap and neatly belted pants he embodied the country working man of a past generation, now faded and starting to fray in his twilight years. His face was different, but the way he carried himself reminded me of Grandpa, dead now these nearly nine years.

He set his copy of my book on the table, and spoke with a quiet simplicity. “Thank you for making it not scary,” he said, and looked at me as if he meant every last bit of those words with all of his heart.

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The path to many places is long and winding, and such it was to reach the Big Flats Community Center this crisp Saturday morning in late April. Not physically winding–it is nearly a straight shot up the highway, a little over an hour drive. But the metaphorical path to bringing this occasion into being was long.

This morning of April 21st started last year when a friend of mine who sells gutters for a living made a sale to a lady who–he learned in the course of conversation–was in the business of helping elderly people adapt their homes for aging in place. Sue was her name, and besides her consulting work she also held speaking events on this topic. Noting how her work and speaking overlapped with mine, my friend mentioned to her (and later to me) that the two of us ought to discuss possibly working together.

It was an odd connection, but I decided it wouldn’t hurt to follow up, so I emailed Sue. After a few exchanges it was agreed that attending one of her events was a good way for me to figure out if I thought we could work together–and she would view the video of one of my events, and read my book. So it was I ended up traveling to Chemung County and listening to one of her presentations. In the process I met agency facilitators for the Chemung County Office for the Aging, introduced myself, and let them know what I was doing. Afterward, I followed up by email.

Sue and I agreed that there was opportunity to work together, but neither of us had anything planned at that time and we left it that if either of us had something that seemed to fit, we would let the other know. So far that has been the end of it. But months later one of the ladies from the Chemung Office for the Aging who I had met at Sue’s event contacted me by email and said they were interested in having me speak for them. They said sometime in November, but later it was pushed into the new year.

I thought maybe it wouldn’t happen at all. Things come up, then disappear. But in the new year they did get back to me, and we had a date set for April. This all came to fruition a year after I first came to the Chemung Office for the Aging. A winding path indeed, from gutter sale to community center speaking event.

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The Chemung Office for the Aging used grant money to purchase a copy of my book for every attendee of the event. The old man slid his copy across the table toward me.

I nodded in response to his thanks for my presentation. “I try,” I said. “I hope people can see it that way. I don’t think it has to be terrifying,” I said, then add, “who should I sign book this for?”

“You can sign it for Ed. That’s me,” he said.

“Who are you caring for?” I ask. Sometimes this helps me know what other words to add if I know a bit of their story.

“Actually, it’s me,” he looks at me. “I’m the one. I’m in the early stages, but it’s coming.”

My world hiccups, the conversation jumping to an entirely different frame of reference. Often caregivers thank me for helping them see the disease better–more clearly, more in context, more hope filled. But rarely does someone with the disease come to an event, and even less often will one of them speak with me. I had presumed another caregiver stood thanking me, and now the raw confession told me I had spent the last hour and a half telling this man what his future held.

And he had said thank you.

“I’m not scared anymore,” he said again. “Thank you for the things you said. I don’t think it has to be bad.”

“No,” I agreed. “After what I went through with my grandpa, I think it is less scary than it was before for me. I feel–for myself–there are a lot worse ways to die.” The conversation felt at odd angles. We were talking about this man’s impending losses and eventual death, and he was being grateful to me. My emotions stirred, my heart wishing I could give him something–something more than what now felt like the pitiful amount I’ve given.

I hand him back my book.

He picks it up. “I want to read this. I want to learn, to understand what is coming. This book will be good.”

“It’s good you want to learn. It’s great!” My words feel feeble. I’m thinking simultaneously about how it is going to slip out of his mind and yet maybe some bit–somewhere–will stay, I hope. I’m wondering if he will even be able to finish my book. And I marvel at his attitude.

“We’re all given a life,” he says. “Something. Our own burden.”

I notice now how there is a hesitation in his speech, a small halting that a listener might not notice if they weren’t attentive, but I catch it.

“I just think this is mine,” he looks away. “And I’m going to live it. And it will be okay.”

I nod, and try to find words, fumbling things to say.

“Anyhow, thank you,” he finishes. We wish each other well, and he moves away and I must sign the book for the next person. I feel like I’ve been swept along prematurely, and I want to follow after the old man and–and–do something. Say something. Help him, be there for him in the years that are coming. But that’s not the way it works. He must walk on, and so must I. But I do hope I’ve given him something for his road, something he will be able to carry with him.

◊ ◊ ◊

A few more people down the line I have two elderly ladies standing in front of me. I think they might be sisters. They both clutch a copy of my book, standing side by side with a hint of tension in their shoulders, a weariness in their faces. The first hands me her book and says with the quickness of someone trying to force emotions back, “Make it out to Barb and Ed. That’s me and my husband. He has the disease. We’re going through this with him.”

I smile to myself as I sign her book. “I met your husband a few minutes ago,” I say. “I signed his book. We talked about his disease.”

“Oh! What did he say?”

The sisters look a mixture of surprised and curious.

“He said he isn’t afraid anymore. That it’s okay.”

“He said that?” Tears come to Barb’s eyes, a hand to her mouth. “Oh, you don’t know what that means to me. I can’t believe–He never talks about it–and we don’t know what he thinks. To hear that he said that–that alone makes today worth it. Thank you so much.”

We talk a little more, and I try to find encouraging words, but giving them her husband’s words is all they wanted. All they needed.

Afterward, the community center empties and I am alone with my wife and our baby boy. My wife tells me how everyone made a fuss about the baby, but one man in particular. This old man came up to her three our four times while she was holding our baby. She thought the man might have had Alzheimer’s, because each time he stopped he said the same exact thing–as if he didn’t realize he had come a previous time. He is a beautiful boy. Cherish the moments, he said. These are precious days, and they are gone so quickly.

It was Ed.

◊ ◊ ◊

Life is a winding road, and none of us knows what lies ahead. I don’t know if I will ever have another speaking event. Maybe that bright April morning will be the last time I speak to an audience, the last time I stand up and open my heart and my mouth about hardness and brokenness and love and worth and what life means. I don’t know. But what I do know is that I am glad to have heard those words: “Thank you for making it not scary.”

It is what I have wanted to give.

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