The road narrows, the woods close in on our journey towards the end of dementia and the mileposts come more quickly….
WE WERE TALKING one night, Connie and I.
She was in her chair, I in mine by the window in her memory care unit. Talking is hard these days as she struggles with the combination of memory loss and speech aphasia, which makes it hard for her to string words together.
We were talking about family. She started to say something, then stopped and looked over at me.
“Our son’s wife….” she said. “You know, his wife….”
“Diane?” I asked.
“Yes.”
Then, “our granddaughter….”
“Sam, Samantha,” I said.
Yes.
It is hard, in a moment like that, to keep emotions off your face and out of your voice. This has been going on for the past couple of weeks when some family members come up, or old friends. It is not that she has forgotten them, but the names don’t come.
Dementia has mileposts on the way to the end of the world and this is one of them. It is one that makes you not want to see the next one, but it’s there and then, you come to it.
I walked into the unit last night and stopped to talk with the night nurse and an aide.
“Connie was just out a few minutes ago,” the nurse said. “She is going to be very happy to see you. She said ‘My husband will be here soon.’”
There was a pause.
“She was a bit confused. She asked us “My husband, oh what is his name?”
“Rich, I told her,” said the nurse.
I stood there. I had known this was a moment that would come and so I tried to take it in stride and told the nurse “well, at least she still knows who I am and that I am coming.”
“Yes,” he said.
I went into her unit and gave her my nightly hug and a kiss, told her I loved her and asked her how her day went and we talked.
When I left I tried to tell myself that a name is just a label and it doesn’t matter all that much, but of course it does.
You learn early on when dementia comes to someone you love that you are on a dead-end road and you feel the pavement getting rougher, the woods closing in until the road turns to gravel, then dirt, and then….
You want to tell yourself there is still time left and we are not at the end yet, and we are not. But the talking you do with yourself seems more filled with white lies.
What to do? Continue to hug, to kiss, to say “I love you.” Do the things that need no name. It is all you can do, for her and you.
Then, when I get home, I listen to a song we first heard together years ago back in Vermont. We were sitting on our deck on a quiet Saturday night and as the lyrics went out into the night we held hands and both of us went beyond speech. It was our song and would be forever and beyond, come what may.
Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].