I hold on tightly, why are you disappearing?
January 12, 2017 § Leave a comment
I hold you close everyday, passionately caring about your well-being and yet you continue to disappear. In that embrace, I am fooled into thinking that you, my dear husband, are here with me. I feel your happiness when you arrive home, off the bus from a long day at the dementia care center. I want to hold on and never let you go. I know that you are leaving and it’s the dementia taking you on a trip with a one-way ticket.
Today you were especially quiet. I miss hearing your voice. You used to tell me funny anecdotes about your day and we would laugh together. Now I am glad when you tell me that your day was a good one and a few indecipherable words about a meal or activity. I just heard an NPR podcast by Dave Isay, founder of StoryCorps. It is too late for my loved one but maybe dear reader, not too late for you and the ones you hold close to preserve their stories.
I show my husband pictures of our life and reminisce. He asks me “when was that?” and sometimes he recognizes who is in the picture, maybe our parents or his brothers. I have scanned many of his childhood and family’s pictures but they do not prompt him to recall any specifics or identify who they are although he tries very hard and knows they are important to him. I try to help him whenever the familiar blank expression reappears. He loves the stories about his life. He is still here. He is listening.
When you receive a dementia diagnosis, it is so overwhelming. An uncertain future changes all plans.
We could have recorded our loving thoughts on each of our anniversaries, reminiscences of the day we married and for sure, he would have replayed those recordings many times. I would have recorded him telling me how he always got a seat on a crowded subway because he was slim and never shy to ask someone politely to move over. I would have recorded his memories of significant life events, bar mitzvah, receiving college degrees, shaving off a beard, being Dad to four children. All these memories are gone.
I’ll never know which memories he would have wanted to preserve. Maybe his grandchildren would have liked to get to know their Grandpa as a real person, hearing his voice, speaking his words and learning the value of listening and feeling connected. Sadly, it’s too late for us, just living in the moment is a challenge with no ability to recall or reflect.
StoryCorps even has a free app ready to record using your iphone. Founded in 2003 and with six Peabody awards, it’s new to me. In 2015, they were awarded the $1 million TED prize for a powerful idea solving the world’s most pressing problems.
It’s never too late to say I love you.