What Would Help You Do What's Difficult?

Denise

What Would Help You Do What's Difficult?

Denise
This week's New York magazine is out with a cover story like no other. In the article, "A Life Worth Ending," Michael Wolff details the last years of his mother's life, which he describes as a "horror show." "What I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive," he writes. "Who can accept such suffering—who can so conscientiously facilitate it?" (Feel free to add your story to the article's comments section.)

When his mother was 84 and suffering from dementia, the author and his siblings consented to her open heart surgery. He writes:

"My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, ­Herzog-like notes, to anyone who might listen—but of course who listens to a woman who scribbles such notes?"


The operation successfully repaired his mother's heart but, as Wolff writes, "left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in free fall."

I wondered, as I read the article, why health care professionals suggest treatment, like open heart surgery, in situations like this. And, Wolff writes, "It did not once occur to us to say: 'You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?'"

This morning, after I tweeted a link to the article, I enjoyed a Twitter discussion with @OldbillyRogers (our Old Billy) and a Twitter follower who cares for his wife (@Profmicro). Both Old Billy and @Profmicro wrote about the difficulty of end-of-life decisions. "It is hard to make these decisions in the moment," @Profmicro tweeted.

It is. It's torturous. It's heart-wrenching. It's guilt-inducing. And, more and more, it's inevitable.

So, I wonder, what would help you make these difficult decisions? What could change so that others, like Wolff, don't regret decisions they face when presented with treatment options during the stress of hospitalizations? I guess what I'm really wondering is: How can we make it easier for you to say what can be so hard to say but is just what your caree wants you to say? How can we help you say "No"?

(Note: We'll talk more about this article during a new segment of Your Caregiving Journey talk show called Hot Topics, which debuts next Wednesday (May 30) at 8 p.m. ET (7 p.m. CT, 5 p.m. PT). Every-other-Wednesday, I'll be joined by a panel of family caregivers (ejourneys, Jane, Richard and Bette) to discuss news and current events related to caregiving. I think a discussion of this article is a great way to kick off our new show. You can join in the conversation in our chat room or by calling in during the show to share your opinions.)