I have read and compiled more than fifteen thousand dementia caregiving tips.
Over the past few years I have collected them, sorted them, and studied them for the work I am doing. Tips for bathing. Tips for sundowning. Tips for the question that comes around again every four minutes.
Somewhere in the middle of all that reading I noticed something. Underneath so many of those tips, holding them up, is one thing that never gets an entry of its own. I have started calling it “being there.”
Here is what I mean.
One night, I was in my easy chair with my tablet on my lap and the TV going. It was dark outside. I looked up and there was Gail, outside on the deck, looking in at me through the window with a scared expression on her face.
I got up and walked outside.
“Honey, what’s wrong?”
She said, “I don’t know where I am, or who you are, or who I am.”
I had no tip for that. There is no technique that fixes a woman standing on her own deck, losing her own name.
So I put my arms around her and said, “Come on inside. I’m here. Let’s figure this out together.”
That was all of it.
We stood there a minute and then we went in. After a while the fear went out of her shoulders and Gail came back, and the moment passed the way those moments do.
I have thought about it a lot since.
What Gail needed from me out there was not information. It was not a redirection strategy or a validation technique. What she needed was somebody steady walking out the door toward her.
There is a lounge chair in our bedroom. I sit in it and work while Gail sleeps, because I know that when she wakes up she needs to see me.
Not the whiteboard I put at the foot of the bed telling her where I am.
Me.
To be honest, I don’t know if I do that for her or for me.
Most of us carry a quiet fear that we are not doing enough, that there is a better answer out there we have not found yet. I carried that fear a long time.
You will not know everything. Nobody does, and the disease keeps changing the questions faster than anyone can answer them.
What you can do, every single day, is be there.
Be the steady thing when nothing else makes sense.
On the hard days it is the whole job.
You are doing more than you think.
Gregg
Get a letter like this every Tuesday.
