Recently, a dear friend whose husband had died a few months prior said she had difficulty attending church because at some point during the service, her tears would overflow. She and her husband had always attended church together, and she was finding the sadness of sitting alone to be overwhelming. Her grief was completely understandable; her husband was gone.
There’s another kind of grief that’s less acknowledged by our culture, a grief that occurs when one knows someone is declining, but the length of their remaining days is unknown. The label for this emotional state can be termed “anticipatory grief.” In a study manual by Barbara Rubel, “Loss, Grief, and Bereavement,” she defines it as a grief reaction “related to an impending loss; including mourning, coping, interaction, planning, and psychosocial reorganization before a death.”
On a recent Sunday, I had an experience similar to that of my friend. After communion, the tears flowed, but the reasons were different. My spouse is alive; why should I be crying? He suffers from a chronic lung disease (no cure) and has exceeded the number of years projected with his diagnosis. He now wears oxygen 24/7, and his outings are limited to short trips to the store or anywhere seating is close at hand. Some days seem almost like “the old days”; at other times, he and I experience a sense of impending doom. Because he sees new limitations on almost a daily basis, the necessity of his coping with what lies ahead is far more poignant than mine.
Anticipatory grief may arise not only when someone is within days of dying, but also when someone receives a terminal diagnosis for which there may be very little treatment, or even for a chronic illness that’s a new diagnosis. Note that Rubel’s definition includes not only mourning and coping, but also interaction and planning.
So how do we cope when we know someone is going to die? There are some practical ways. Some people may want to join a support group, talk to their minister, or talk with other family members and friends. My husband has the goal of trying to do one outing per day, even if it means we go to the store and he sits in the car. A few weeks ago, we explored some local sites and even went on a ride on the Jacksonville monorail, but some days even that is too difficult. If someone can get out of the house, even sitting in the driveway to watch neighbors, dogs, and babies or resting on a back porch is therapeutic.
Planning can help the caregiver and the person with the illness feel a sense of control. Some people like to go ahead and plan a funeral; also working to ensure finances are in order can keep anxiety at bay. Because I was from a large family, my mother sent a list of family heirlooms to all six adult children and asked each person for their top three choices. These “heirlooms” included jewelry, furniture, china, and pictures. Mom compiled the list and even put the person’s name on the back of some of the items. She then sent it out to all of us. Her goal was that no one would argue about family belongings after her death. No one did.
Most of all, spending time together is the best way to cope with anticipatory grief. At a family gathering or birthday (in person or via video call), just internally acknowledging that we are together now can bring a sense of peace.
My husband and I have talked a lot about dying. It’s probably tough for him being married to a retired hospice nurse. We have cried together, but have laughed even more. Most days we don’t talk about dying at all because, and especially in light of COVID, he has said and I have said, “We want to live.”
The final part of Rubel’s definition, psychological reorganization, may involve a lot of changes within an individual’s or family’s structure. Perhaps the spouse always took out the garbage or changed the batteries in the smoke detector and is no longer able to do so. Perhaps the grandmother used to shop for all the grandchildren’s birthday or holiday presents and is no longer able to do so. These changes require a shift in thinking. Maybe helping the grandmother choose gifts online or finding a way to do family gifts instead of individual gifts can ease these transitions while still giving a person choices to make.
Long ago, a moment occurred with my father when I realized he could no longer save me if I were drowning in the ocean. All my life, he had been the strong one. I had felt safe and protected. Then came the time when I knew if we were in the ocean, I would have to save him. Looking at someone with new eyes brings sadness, but acknowledging the cycle of life helps us to accept what is. It allows us the opportunity to become more compassionate and kind instead of impatient and frustrated.
Other changes can occur, such as realizing that one’s financial situation may be reduced after the loved one’s death, or that some social situations will be altered, such as holiday events no longer occurring in the family home or even in the same city. These thoughts can also create more anxiety about what’s to come, so that staying focused on the day-to-day, living in the present, becomes the goal.
When I asked my husband if he had anything else on his bucket list, he said, “Just love me.” What a freeing remark as we both try to live each day discovering beauty and joy.