Moms Columns & Blogs

Robbed of a good ending

‘Is she dead yet?” well-meaning friends ask me.

OK, they don't really say it quite that way. What they're more likely to say is: “How is your mother?” But I understand.

My mom has Alzheimer's and is at the end stage. Here's what that means: she doesn't eat (except through a feeding tube), doesn't walk, talk, recognize family or do anything in a purposeful way. She has bouts with aspiration pneumonia and is frequently dosed with antibiotics. Although occasionally she'll respond to stimuli, more often it's like she's in a coma with her eyes open.

If I sound bitter, I suppose I am, because this is truly no way to live or to die. And yet, she lingers on.

Last December, she had a severe case of pneumonia, and for a while, it was touch and go. My sister and her family came into town. I was at the hospital constantly, looking for some kind of sign that would indicate progress.

“What was her white count today?” was always my first question when I entered the ER at Wake Med. Back then, a palliative care doctor spoke to me in a consoling way, suggesting that we make some end of life decisions. It wasn't killing my mother, he said, to refuse to medicate, feed or hydrate her.But we could not. It just didn't seem right. But sometimes, sometimes, I wonder if that was the right course. The medical interventions prolong my mother's life, but, in her case, they do not add any quality to it.

This comes to mind as I read an article about how Sen. Ted Kennedy spent his last months. Knowing he had an incurable brain tumor, he spent time doing what he loved. Sailing on the Nantucket Sound. Eating dinner with the Kennedy clan at their house in Hyannis Port. Laughing and singing. Watching his favorite James Bond movies.One report said that even days before his death, he was chowing down his favorite combination of butter crunch and mocha chip ice cream.

Obviously, my mom's Alzheimer's is different from Kennedy's cancer. In my mom's case, it crept on her like an attacker from behind. Before she knew what was happening, she was too far along its path to be able to make end of life plans. She didn't get a chance to decide how to spend her last days. Or what flavor of ice cream she'd enjoy.

As I sit here with her in the hospital while yet another illness requires medicines that will help her linger but not thrive, I feel guilty.She didn't get to create what Kennedy termed a “good ending.” And now, it's too late.