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Living in the Moments: End-of-Life Conversations with a Person in Denial

By Kelly Kiernan Largey, 09/06/2021

My husband was not a planner. The first Valentine’s Day we were together he hadn’t ordered flowers ahead of time and was stunned when florists were sold out that day. Ever resourceful, if also a bit brash, he tried to buy the flowers a co-worker had received, reasoning that she had already enjoyed them and might want to make a few bucks. She didn’t. I did not get flowers that day, but I did get a good laugh at his expense for years afterwards.

My husband’s extreme spontaneity worked because I was the organized yin to his messy yang. But when I reached out to a lawyer to help with our estate plan, my husband was annoyed. Even though he was in hospice care at the time, he didn’t want to talk about the possibility of his death.

My husband used denial as a coping mechanism from the moment he was diagnosed with aggressive prostate cancer at age 39. He knew about the Kübler-Ross model for the five stages of grief (denial, anger, bargaining, depression, acceptance), but never moved off stage one.

I, on the other hand, lived in the stark light of reality and needed to plan. Once we understood his prognosis, I dove head-first into my own coping mechanism by having all the conversations I could, with anyone willing to talk, to help me navigate his care and my own emotions. Mostly, I used conversations to pretend I had control over what was colossally uncontrollable.

Denial was my husband’s powerful ally and he found he couldn’t un-friend it. He refused to discuss his wishes for his last days or his funeral arrangements. He turned away when I wanted desperately to tell him how grateful I was for the life we had built together.

While we never had a true end-of-life conversation, we shared many meaningful moments in his last days. In our haphazard and piecemeal way, we were able to address the four things that Dr. Ira Byock says matter most at the end of our lives: love, gratitude, contrition and forgiveness.

My husband had a sharp wit, so the best way to reach him was humor. For example, he was a white-knuckled flyer and we joked about all the places he could go if he didn’t fear crashing, which led us to shared gratitude for our travels together. When we laughed about our gangly teenagers piling on his small hospital bed, he told me how deeply he loved them and that being their father was his proudest accomplishment. When he wisecracked that I would have a swinging social life when no longer burdened by his care, he laughed but made me cry, giving us a chance to forgive each other for the things we wished we hadn’t said over the years.

I think anyone would agree that it’s important to listen to and honor a dying person’s wishes. But if your dying loved one’s wish is that their imminent death not be acknowledged, is there a way to honor that wish without denying your own reality? My experience showed me that it’s possible to find meaningful moments with a person in denial by connecting in a way that is comfortable to them. My husband was most comfortable with humor, which gave him space for denial while coaxing him towards serious conversations. Giving him the gift of denial cost me the opportunity for the meaningful good-bye I wanted, and I am at peace with the tradeoff.

Death can feel steeped in failure and loss: treatments fail; we lose our loved one. Despite your best efforts, you may not be able to have the meaningful end-of-life conversation you want with someone you love. Instead of seeing this as a loss, perhaps you can frame it as a gift to your loved one and a sign that you understood what mattered most to them.

I wished for something different at my husband’s death, but it was his death, not mine. When it’s my turn, I have an advance care plan. I will talk to my family about love, gratitude, contrition and forgiveness. And I plan to be surrounded by flowers.

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2 Responses

  1. Amy Blumenthal says:

    What a beautiful, insightful and moving piece. Thank you for sharing this and for making me cry.

  2. Pam Singer says:

    So helpful, so loving, and sacrificial!

    I hope I am so humble and brave in dealing with my denying Dad!

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