These days I’ve been bearing witness to the depth, dignity, and great sadness of my wife’s response to her mother’s long dying. It reminds me of my own feelings as my mother descended into dementia, how I oscillated between anticipatory grief, wishing it could be easier for her, and keeping a safe emotional distance for myself. While I miss her, I accept that she is gone. She lived a good life. She loved and she was beloved. Most of all, she had such great spirit, which I was privileged to share. The only part of that experience that I regret was the distance that I seemed to require.
Distance is baked into the American way of dying. We have been warehousing the elderly for decades now, distancing ourselves by placing great numbers of them into assisted care and nursing homes. With our shrinking families and two-job couples, we often lack the resources to do otherwise. Who can work an eight hour day, take care of children, have some fun and still care for an elderly or dying person.
When we are not with our aging parents, we want them to be safe and well cared for, so much so, it seems, that we are willing to sacrifice their wish for dignity, independence, and well being for safety and for keeping them off of our hands. It isn’t that we don’t love them but they press the limits of our own capacity to deal with their infirmity, their memory loss, their neediness, their moods, and what feels like their concern for small and “petty” things. This is especially true for men, who are happy trying to solve problems but not so much to hold their elders or to simply be there.
The institutions and professionals pick up this message. They too emphasize safety over well being, convenience over the independence of residents. It’s so much easier to dress people than to wait on their own efforts. There is a shrinking pool of doctors who seek out geriatrics. It’s neither a sexy nor a well-paying specialty. And being a very good geriatrician demands much more social and emotional intelligence and commitment than many can give.
In our rush to make the last years as convenient as possible, we have lost sight of the aging person’s deepest needs for meaning and a sense of agency. Atul Gawande’s beautifully written book, Being Mortal, tells us that:
“The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need.”
The need for companionship and love, as well as the search for meaning and engagement doesn’t die during very old age. Purpose may take different forms, like getting dressed yourself, taking care of a plant or an animal, hanging out with grandchildren, and, if you are lucky, still having something interesting, maybe wise, to say to younger people. The spark that makes them human may dim but it is not extinguished. It has the potential to light our own lives.
Those who study the end of life focus mostly on the experience of the elderly, but it is the living who may be most affected by the diminishment and dying of loved ones. We live on with our own feelings—loss, relief, loneliness, anger, confusion, helplessness. We, the living, are inextricably bound to the decline of our elders.
When we contemplate what another’s dying means for us, we experience our own fears, anxieties, hopes. “I hope I have a lot longer… my mother lived to ninety; that should help… What is that pain in my legs, my chest, my head; maybe I should get it checked out…but I don’t want to.” These experiences are not just in our imagination. The death of our loved ones makes us particularly aware of all the ways that we are dying ourselves.
Is this a pessimistic view? I don’t think so. I think that cutting ourselves off from the elderly and the dying is a form of cutting ourselves from ourselves, from the deep feelings of vulnerability and mortality that are there from the start. Bruno Bettelheim argued that children benefited from the scariest fairy tales because the themes reflected their inner lives. Reading the tales and experiencing them in dreams gave the children an opportunity to work out their own fearful and violent creations. Keeping fears at a distance limited their ability to handle difficulties in life.
I think the same is true for death and dying. By permitting ourselves the intimacy with our aging friends and parents, we also tear down walls within ourselves. The intimacy within, that ease with ourselves, with all of our feelings, then facilitates our connection to the important people who surround our lives.
A while after my mother died, I took a very long and introspective walk. I looked head on at the roiling and rollicking activity within. I acknowledged the sense of loss and confusion I felt, the fear of a future with no parent alive, the relief that her suffering was done. Tears filled my eyes, feeling strange as I walked alone in a forest that was dappled with sunlight. Then my mind quieted, and I had this thought: I’m comfortable with this person; I sympathize with him and I like him. He is my friend. I believe that this is what letting my mother’s dying into my heart gave to me.
In traditional societies, the connection with the dead is almost as important as with the living. I don’t foresee that approach returning in contemporary societies, but we do need a sense of the continuity in our lives. We are intermediaries between our parents, our children, and our grandchildren. With the ideas and values that have mattered to us. With the deep connection to those we love, past and present. That love is at the center of our being and comes closest to marking our immortality. We need to open our hearts to it.
Barry Dym 