IT DOESN’T GET ANY BETTER THAN THIS

   Photo by Wheels

It was dark with a  bit of early light peeking under the window covering.   The cat leapt from his position at the foot of the bed, stirring me to awareness.  Wheels gets the middle of the bed by design. I sleep in a three foot corridor on one side of the bed.  Such a narrow space ensures that knees and elbows at least will touch – again by design. If he moves because of discomfort or need, I will awaken immediately.  It is far better than any other sleeping arrangement we’ve tried over the past four years.  It does help that he sleeps soundly  now — most of the time.  So I, too, sleep soundly and awaken somewhat rested.

This morning our arms are touching at the elbows.  He is breathing evenly so I am surprised when he pulls my arm closer to him and moves his head toward me on the pillow.  We touch heads, shoulders, arms – him half asleep and me wide awake.  We both enjoy the warm moments.  The thought crosses my mind:  It doesn’t get any better than this.

Immediately followed by the explicit knowledge that  “it” will never get better than this.

There will be other fleeting moments of happiness, love and all that is good.  But they will be fleeting moments.  Because “it” is always there – hovering, waiting, and relentless.   Living grief with flashes of hope.  Hope that is not false, but certainly always temporary.

The awareness of  such loss is called  “anticipatory grief”  or “ambiguous grief”.  Naming it does not help.  All one can do is let it wash over, experience it for the moment.  And then move on.

These posts are for those who live with similar situations.  Diseases that take over the life of  entire families, that consume every waking moment, that create immense uncertainty for the here and now, not mention any future. Caretakers that were thrust into a role they do not want and certainly, are not prepared to do. Especially when the diagnosis is a form of dementia.

I don’t want this to be  sad or poor-me or negative in any way.  But to be realistic, we have to acknowledge the breadth and width of “it” – whatever that is.  This space is about living with hope and positive, but reasonable, expectations.

And, yes, we have gone back to the neurologist who told us not to come back because there was no hope.  His PA sees Wheels on a regular basis and has provided invaluable help.  There is more information being gathered about the disease.  I have struggled with new aspects of the disease that appear without warning – but my struggle can enlighten your struggle.  People need community to grow and flourish.  You are welcome here, no matter what the “it” is in your life.

Charlene Vance