Every Patient's Advocate

My Daughters’ Grief — End-of-Life Decisions, Advanced Directives

Word came from my daughters this morning that their father has died. David died of a lethal combination of lupus, high blood pressure and alcoholism at the age of 59.

Yes, he was my ex-husband. Divorced 20 years ago in 1988, there are 800+ miles between where I live and where he lived, miles put between us intentionally, in 1993, to keep my girls safe. We had been married for 16 years. His second wife was smart enough to leave after four.

David had his first stroke at the age of 43, during his second marriage, and was disabled for the rest of his life. His health rode the roller coaster, with additional strokes and other difficulties over the years.

Now that my daughters, Becca and Ashley, are young adults (31 and 25), I have had no contact with him directly in more than ten years. Yet he has still been very much a part of my life, because he spent those intervening years making life difficult for his daughters. As their mom, I have lent a shoulder, and provided an ear. I have tried to hold my tongue when appropriate, and I have interfered only once that I can remember. And believe me, it was warranted.

David was selfish his entire life. As far as he was concerned, the world revolved around him, and if he got a small hint that it didn’t — then he would take steps to reorient his world so it would. I lost track of how many Christmases and other holidays were interrupted because “the end was near.”

Why do I share this with you today? Because, after wreaking havoc in my daughters’ lives for all these years, he also committed the ultimate difficultly for them — he left no instructions about what to do at the end of his life. No DNR, no living will.

Ashley was his medical proxy. He trusted her to make decisions for his health. Even then, he only made that assignment because his providers insisted on it. BUT, he wouldn’t talk to her about the end of his life — he left her to make all those difficult end-of-life decisions. Until the very end, she had no idea what kinds of decisions to make. Did he want breathing machines? A feeding tube? Should be be resuscitated?

Not having had discussions with his daughters to make those decisions easier for them to make was, in my opinion, the ultimate selfish act. The stress, the grief, the gut-grinding heartache about whether or not they were following his wishes created an emotional agony that will be his legacy.

And that’s why I share this personal post with you — because I hope YOU will understand the importance of making end-of-life decisions, called advanced directives, for yourself. Putting your wishes into writing, and discussing them with your family, is so important.

And NOT making your wishes known is just plain self-centered and selfish.

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