A global quandary: Writing illness, protecting dignity

A recent post from Liane prompted me to start writing about this question:

Towards the end of The Good Shufu’s story, My beloved father-in-law, whom I refer to among friends as “Shogun Senior,” begins seriously to decline physically due to Parkinson’s Syndrome. He’s relatively young–only 72–but the illness is brutal and his body, and then his mind, have started, literally, to wither.

Time, I learn, is a thief.

In Japan, the eldest son (known as chonan) and his wife inherit the responsibility for caring for aging parents. My husband T (known among my friends as Shogun Sama–what the Japanese called the North Korean dictator Kim Jong Il–b/c, like his father, he is incredibly stubborn, despite all his charm!) is chonan, and so we live right near Shogun Sr, and much of his daily care has fallen to me while we are waiting for him to move into the care house (what the Japanese call a nursing home).

To illustrate what a sweetie Shogun Sr., is: He barely speaks any English. A few weeks ago he fell and was on the floor, heartbreakingly, overnight. He couldn’t reach his phone, even though it was in his pocket, where we insist he keeps it at all times, since he has refused 24-hour care. When the morning helper-san (“respected helper,” or care worker) came in at 7:30 am, she couldn’t lift him alone, so she handed him the phone and he called me.

“To-ray-shee,” he said into the phone, pronouncing my name, Tracy, like all Japanese people do. “Es, o, es-u,” he said. SOS.

Anyway, I’ve struggled with how to write about Shogun Sr and my role taking care of him, sometimes in the way I would have imagined taking care of our baby, if it had been born. With a baby, though, you don’t have to worry so much about dignity when it comes to their physical needs or helplessness. With Shogun Sr., I want desperately to protect his dignity.

So: How do you write about the physical decline of someone you love, without compromising their dignity?

How do you write the truth and still honor them with the incredible respect they deserve, just for bearing their own decline?

Would love to know if anyone has struggled with this at all, and any answers you’ve come up with!

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4 thoughts on “A global quandary: Writing illness, protecting dignity

  1. Tracy, I’m so sorry to hear about your father-in-law. It’s heartbreaking when our parents and in-laws become so fragile. I haven’t written about this topic, but I highly recommend Claire Bidwell Smith’s beautiful memoir, “The Rules of Inheritance.” It just came out in paperback today, and is also on Kindle and other e-book formats. She writes about losing both parents before the age of 24. Her writing is beautiful and she describes the pain of loss in ways I haven’t read before. She was her father’s primary caregiver when she was in her early 20s. I’d love to hear what you think if you read it.

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  2. Hi Tracy, been meaning to reach out to you by e-mail, but saw your post and wanted to comment. While it is more of a memoir of someone who passed away, Joan Didion’s “The Year of Magical Thinking” does touch on her husband’s condition, which caused his death, and she delves into it with honesty, yet not in a way that dishonors him or his legacy. I also believe her most recent book deals with the death of her daughter Quintana (whose condition also comes up in “The Year of Magical Thinking”). Hope this helps!

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    1. Thanks, Jocelyn! So appreciate your thoughts. I’ve been scared to read Didion’s TYMT because I thought it might depress me too much, but I know that’s lame, so maybe now is the right time to tackle it. In general, she’s so incredible, isn’t she? Thanks again for weighing in, and sending you all my best!

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