While it’s been many years since DH died, I often think back to our life together. DH was curious and brilliant, had a thirst for knowledge and a passion for disseminating it. But he could also be introverted, and at times, conversation was hard. Especially when it was something difficult – a confrontation, a disagreement, or something with finality.
When we bought our house together in 2008, we immediately bought life insurance so that gawdferbid something happened to either of us, neither of us would have to leave our home. That was a smart decision.
And then when he was diagnosed and on the advice of an excellent eldercare attourney friend, we had our wills and advanced medical directives (AMD) drawn up. When it was time to complete the paperwork detailing what DH would want to happen if things turned for the worst, he was already quite ill. I was afraid to make his days worse by insisting – the attention it would take to complete the paperwork was an uphill battle to begin with, let alone the content. However, it was a necessary conversation. I was so afraid that he would get worse and I wouldn’t know what he wanted and would make the wrong decision, and he would be angry and resentful at what might be his final hours.
Finally, one afternoon when he was awake, I sat down beside him and asked him each question, wrote down the answers and had him sign it. I remember he was sullen about the whole thing, often giving little more than nods or headshakes with the occasional commentary. After it was complete, he read over it and signed it. My fear is that if we didn’t pay now with a fight, I would be left paying later with the pain of doubts.
What I didn’t realize was as hard as having that conversation was, having to say the words to execute it would be even harder. In DH’s final days, he had a moment where there was a specific question of what to do should it come to X (leaving out the details here, as truthfully it was hard enough to live it, and I don’t think I have it in me to repeat it). He surprised me by affirming to his doctor something different than what the AMD had stated. I worried that he would disagree with all of it, but he assured me that it wasn’t the case – what we had was fine.
The next day, a different issue related to that AMD came up. I found myself unable to articulate the words that affirmed where the line would be crossed into palliative care. And fortunately, the document was there. I weakly said to the doctor “He has an AMD – please see what it says there.”
I wish we had that conversation before he had ever been diagnosed. I wish I had the fight with him that would keep him up and make him answer the whole thing himself, so I never had doubts that kept me up about whether I had coerced him in any way towards his answers.
My brilliant cousin wrote this story for the Philadelphia Inquirer (I’m fortunate to know many brilliant minds), and I wish I had known back then to follow her lead. I plan to do this with other members of my family, and I hope you will too.