The disease keeps moving, whether I am aware or not. Whether I accept it or not. That is its nature.
Its gradual movement creates an illusion of stillness: like the subtle changes in daylight that go unnoticed until suddenly (it seems) it is dusk…or like fog rolling across a lake until the water is covered and the shoreline invisible.
So it is with Dale’s latest changes.
Suddenly (it seems) he is sleeping more hours than he is awake; content to sit because standing and walking are challenges; leaving food items on his plate that he once ate with pleasure.
This transition feels shocking to me, despite the length of our journey and all the signs along the way. As I look back, I can see dusk approaching…the fog rolling in. I can see the gradual movement to where we are now.
But still, my whole being responds: How can this be? How can it be that our daily walks together have ended? How can it be that Dale is no longer my dinner-and-a-movie partner each evening? How can this be?
As I inch towards acceptance, I look up to see that there are guides along our way: hospice CNAs who bathe Dale with skill and compassion; chaplains who sit with us, pray with us; caregivers who bring smiles, experience, and helping hands; fellow travelers who know this place well and listen with deep understanding; friends and family who express love in myriad ways, lifting our hearts and assuring us that we are not alone.
And still, Dale is here…in his smiles and laughter, in moments of recognition and connection, even amid periods of intense confusion and long hours of needed rest. Still. Here.
“Still is still moving to me
And it’s hard to explain how I feel
It won’t go in words but I know that it’s real
I can be moving or I can be still
But still is still moving me
Still is still moving to me.”
From Dale’s favorite Willie Nelson song: “Still Is Still Moving To Me”