Wednesday, 6 January 2016

Care Partner Wednesday--"I'm still here."

I've been binge-watching old "The West Wing" shows lately, a series which ran from 1999-2006. I don't have a TV, so it's all new to me. This political drama gives us a fictional peek into the white house, the president and his top aides. I find it fascinating.

The episode that I can't stop thinking about, didn't take place at the White House. C.J. Cregg, the White House Press Secretary, is invited to speak at her high school reunion. She goes reluctantly, only because it will give her a chance to visit with her dad. When she gets to his Dayton, Ohio, house, she is shocked. Her step mother isn't there, the kitchen is a disaster, and her dad, who was an intelligent, high school math teacher, is obviously having trouble coping. It doesn't take long to realize he's developed Alzheimer's.

There are a few poignant moments as C.J. tries to wrap her head around what is happening, and to figure out how to help her fiercely independent father who, at the core of his being, is terrified. At one point he picks up a framed picture of C. J. as a young child and says, "I don't know who this is." The look of pain on C.J.'s face is one I've seen on other family members. I wanted to reach through the screen and hug her, assuring her that he knows his daughter, just not the little girl in the picture.

The most heartbreaking moment, for me, was when C.J. finds her step-mother, who has abandoned her father. The step-mother left because of the onset of the disease, and tries to justify her actions. "I didn't sign up for this," is the gist of her argument, and I begin to hate her at this point.

"Do you know the nickname for the disease?" she says to C.J. "The long good-bye."

I wanted to scream, "NOOOOOO!" and jump up and down and rant, but the dog was looking at me funny, so I am giving you the benefit of my thoughts.

I first heard the phrase, "the long good-bye" in a DVD called 20 Questions, 100 Answers, 6 Perspectives. It has apparently been used for some time to describe how Alzheimer's changes the person diagnosed with the disease and affects those who are close to them. The person who referred to the phrase was Richard Taylor, PhD, an immensely intelligent man who also happened to be diagnosed with Alzheimer's. His response was, "I'm still here. I'm still here." He didn't pretend that the disease hadn't changed him, and he talked candidly about the challenges of memory,  his emotions and of living with the disease. He talked about his family and friends, and what they were feeling. But at the end of it all, he said, "I'm still here."

What does "good-bye" imply?

  • something has ended
  • the fun is over
  • things will never be the same again
  • someone is leaving
A long good-bye suggests we take all these negative emotions and stretch them out over an uncertain (but inevitably long) period of time.

But..."I'm still here." Richard Taylor's voice cannot be ignored. While diagnosed with the disease, he wrote a book, spoke all over the world, wrote a blog, recorded on youtube and influenced care partners everywhere. He made a difference. His life was valuable and he lived every day of it until he died of cancer in July of 2015. 

Not everyone has the intelligence and the voice that Richard Taylor had. But everyone, no matter what their age, medical condition or cognitive status, is valuable. Everyone can contribute to the lives of others.

Everyone is still here, until they're not.

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