The Emotional Challenges of End-of-Life Family Caregivers

There were clear signs during her last two weeks of life that my mother's long decline from vascular dementia was ending. She had been slowly losing physical functioning for the previous year, but she now seemed to be falling apart all at once. She could no longer hold a fork to feed herself. Her face sagged, so she was almost unrecognizable. When she tried to speak, she couldn't find even common words. Though I had spent many years as a psychologist helping family caregivers anticipate the deaths of their loved ones, I couldn't or wouldn't grasp what was happening to my mother. I'm sure I wasn't emotionally ready. We see what we want or only what we can handle.

I would have hoped the health care professionals at her nursing home would have gently clued me in, but her nurse practitioner seemed as puzzled as I was. She ordered tests for a urinary tract infection and a physical therapy reevaluation without realizing my mother's death was near.

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And then I received a call from the nursing home while I was on a business trip five hours away that my mother was “actively dying.” I drove as fast as I could across the state to get there before my mother passed. During that long ride, I rehearsed to myself the things I wanted to say to her but had long put off: I love you. I'm sorry we argued so much. Thank you for all you did for me. Goodbye.

By the time I arrived in her room, she was still alive and breathing heavily, but her eyes were closed. She had lost consciousness and was barely responsive. I said in a loud voice what I needed to say, trying to reach her, but, to my everlasting regret, have never been sure she heard or understood me.

Family caregivers are faced with many tasks as the receivers of their care get close to the end of their lives — keeping them comfortable and free of pain, providing reassurance and sometimes allaying fears. But with the limited time available, caregivers should also think of their own needs. Even if they are afraid to think about death or worry about upsetting the person who's dying, they should attempt to have the conversations they've always wanted to have, and to ask the questions they've always wondered about. Missing that chance now will only make them sorry later.

How can family caregivers sensitively approach these end-of-life challenges? Here are some ideas.