Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?

By Idelle Winer

I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.

But first, how did Brian finally tell me that he had ALS? From 2005 to 2007, I observed a slow but steady decline in the use of his right hand. Brian had trouble signing his name, cutting his food, and tying his tie for work and often asked me for assistance. Of course, I suspected that Brian had ALS but did not confront him. (I preferred a state of denial.)

One Sunday in May 2007, we were in the family room, waiting for the arrival of our daughter Leah’s friend Lauren, who planned to store some belongings in our basement over the summer. Just before the doorbell rung, Brian blurted out that his possible diagnosis of ALS had been confirmed. He was concerned that he would be unable to help Lauren move her belongings into the basement and needed to create a credible cover story.

The story we concocted was that Brian fell on our driveway over the winter, resulting in an injury to his right hand. To make the fall appear realistic, he previously purchased a hand brace to cover most of his right hand and fingers and disguise the muscle wasting that was apparent without the brace. (The photo of Brian in my first post shows the brace on his right hand.) Family, friends, and professional colleagues believed this story, allowing us to keep our secret for a few more months, even from our daughter Leah. Brian finally told Leah in July 2007, which was the only time I saw him show emotion about his diagnosis.

leahbrian2
Brian and Leah, May 2009. Last photo of Brian.

After the truth came out, we had our first home visit from Beth Barrett from the ALS Association. Beth’s compassion, knowledge, and support were indispensable to our family’s ability to cope with the many challenges of the disease. We had a true partner and friend in Beth, someone we could rely on.

How specifically did hope manifest for Brian? I think that Brian found peace in knowing his ultimate fate; in other words, having a terminal illness like ALS set him free from the false hope of recovery. His acceptance also provided a model for us, and we took his lead regarding how to respond and think about his diagnosis.

How does hope manifest for your family and loved one? Please share your story in Caregiver Confidential. Let’s continue the conversation.

For more information and resources about ALS, please visit alsa-stl.org.  You can read more about Idelle and Brian’s journey here.

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