The New Grief: Handling Prolonged Care
My husband and I are currently watching the TV show “Outlander,” about a WWII nurse who time-travels to the 18th century, and brings life-saving surgeries and techniques to people who otherwise would not have survived their illnesses. Often, characters who do die could have been saved had they lived in modernity. While watching with 21st century perspective this of course is its own tragedy, there’s also an air of simplicity. When we did not yet have the tools to prolong death, we did not experience the pain of prolonged anticipatory grief.
In their 2011 book, Saying Goodbye: How Families Can Find Renewal Through Loss, Dr. Barbara Okun and Dr. Joseph Nowinski identify what they termed the “new grief,” a protracted experience of anticipatory grief brought on by the life-prolonging advances in medical care. When a person is diagnosed with a terminal condition, no longer do they and their family necessarily immediately accept the diagnosis, but rather enlist the awesome power of modern medicine to treat it. Indeed, it is often a physician’s imperative to attempt to do so.
Okun and Nowinski outline five new stages of grief from the perspective of this drawn-out mourning: Crisis, Unity, Upheaval, Resolution, and Renewal. The upheaval phase is perhaps the most challenging for families anticipating loss. It is in this phase that a dying person may experience remission or relief from symptoms, though the disease still commands background attention in everyone’s mind. Just because the fear and grief are no longer at the forefront of the family’s behavior, doesn’t mean that those emotions are not consuming attention and experience. Put another way—when feelings are not front and center, it’s easier to bury them. This can lead to complications of healing down the road.
What can we do to take care of ourselves—and each other—when experiencing this new grief?
Take things slowly. Grieving is circular. When someone is dying, we may find ourselves alternating between terror and acceptance; between feeling okay and feeling completely overwhelmed. Let the emotions come. Try not to rush through either feeling—you need not feel guilty for feeling okay, and you need not feel frustrated or ungrateful when you’re feeling down. It’s all part of the process.
Be mindful. Remember, even in the moments of feeling okay, that the background noise of illness is real. Set aside time during your day—even five minutes—to sit and ruminate on your feelings. When you create dedicated time to pay attention to that background noise, it’s less likely to blindside you when you’re not ready.
Talk about it! When someone dies or is ill, it is human nature to want to tiptoe around the loss, for fear that it may bring up unwarranted emotions. But just as we can move through our feelings by integrating rather than ignoring them, we can work through this new grief by addressing it. Giving the person experiencing the illness an opportunity to share their feelings not only may help them process, but also allows the loved one to get their fears out in the open. When we name something, we release the unknown, and better absorb it back into our control.
Working with a grief coach or death doula is a profound way to integrate new grief into your healing process, so you may face the moment of loss with a deeper sense of sacredness in the journey. It is when we address our challenges and our fears that we are able to integrate them as tools for our healing.