Caregiving, Death, and a Strange Uncle

Strange Uncle Ralph
Death is viewed with the anathema of a strange relative. Getty

We view death with the same anathema as the strange uncle who comes uninvited to a family gathering. Despite everyone’s assurance nobody told Uncle Ralph about the event, there he is in all his glory, wearing a plaid mothball smelling jacket, a striped shirt, and lime green pants. He sits in the middle of the room waiting for a simple hello but receives the same amount of attention given to an unappetizing bowl of bean dip.

Treating Death as an Uninvited Guest

Just as the uninvited relative makes us uncomfortable, so does death. But unlike the occasional visit from our embarrassing relative, death is pervasive in our daily lives.  When I was younger, I thought of death as something affecting “other people.” Now it rubs elbows with me as I watch friends my age die and know the time I have left is less than the time I have lived.

For many people, death stealthily arrives in the form of a loved one’s chronic illness which we hope isn’t progressive, but fear it is. You see glimpses of it as a loved one’s abilities diminish and realize the person you knew before the illness is not the same person for whom you are caring.  

It confronts you when hearing of a friend’s terminal diagnosis and your response is “I’m so sorry,” knowing she needs more than words. And when we are honored by being asked to help a loved one or friend on their final journey, we are often unsure how to transform our compassion into helpful behaviors.

Pushing Death Away

The more we push death away, the less we are prepared when a friend or relative becomes critically ill, and we assume caregiving responsibilities. Tibetans have a saying, “Lean into the sharp points of life to get over your fears.” Few things in life are as sharp as death.

Many people assume Eastern societies (e.g., Taiwan, Japan, South Korea, etc.) are more advanced than the west because of a long history of accepting death as a part of living.

During trips to Taiwan, Japan, South Korea, and Thailand I found the anxiety about death prevalent despite a Buddhist tradition.

Caregiving and Death

Much has been written about how caregiving results in the questioning of values. Less on how caregiving changes one’s perspective on death.  A woman caring for her daughter with ALS (Lou Gehrig’s Disease) refused to acknowledge the terminal nature of the illness until her daughter’s death was imminent.  The mother’s fear of death prevented her from having the type of conversations her daughter pleaded with her to have. Her fear was so great, it prevented her from doing things that would have eased her daughter’s death.

When I counsel caregivers I emphasize even if their loved one’s condition is not progressive or terminal, think of it as if it was. Assuming the worst often allows us to create a valuable learning experience. For example, if you believed your husband had only months to live, how would the conversations with him differ? Would your list of “important things” change?

  Would you evaluate his words differently?

Confronting the possibility of death early in caregiving can change how you approach the responsibility and what your loved one experiences. You don’t have to run towards death to learn how to accept it. But pretending it’s not on the horizon can lead to needless anxiety.

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