How to Cope When Ambiguous Loss and Long-Distance Care Meet

​ In September of 2022, my mother lost consciousness as a result of a brain stroke, and she remains in a persistent vegetative state. To her immediate family members—my father, sister, and I—Pauline Boss’s concept of ambiguous loss [1] is an apt one during this time; there is a sense of psychological weariness due to lack of closure, and a frustration for not being able to make visible progress in the grieving process (Boss, 2007; Virant, 2021)

Then there is also the fact that my mother is located in South Korea, whereas her two adult children—my sister and I—reside in the United States. Thus, caring for her has been a logistical and emotional challenge.

My sister and I have taken turns flying to Korea to be with our parents, but that has required us to be away from our own lives, including our own families, in the U.S. (my recent visit was for three months). In spirit, we would like to visit her at the hospital, in person, as frequently as possible; in practice, the literal thousands of miles between us serve as a legitimate barrier to such visits. Plus, there are other outcomes (e.g., figuring out a different medical system) associated with caring for sick family members across the ocean.

It feels like a cruel, heart-wrenching version of a long-distance relationship. And I know that there are many in our global society who also experience the heartache of caring for loved ones in vegetative states, across international borders.

What might one do in situations like this, when both ambiguous loss and long-distance care come into play?

Here are a few suggestions:

1. Rely on technology to see your loved ones if you cannot be there in person. What the pandemic has given us is the widespread ability and willingness to connect across geographic distances using technology. Do you have a person (e.g., caregiver) who can facilitate virtual communication between you and your sick family member? For my sister and I, we rely on our father, who is on the ground in Korea, to regularly FaceTime with my mother. It can become a scheduling challenge given the time differences, but it can be done.

2. There is a popular saying in Korean that can be roughly understood as, “Even a sheet of paper is better if carried with others.” It’s the simple but powerful idea that leaning on other people who can provide support during a small or big personal crisis is beneficial. Specifically, when the physical distance between you and your ill family member is so great that there is an emotional vacuum, are there any people that are in your vicinity who can provide some form of emotional support? Also, are there those on the ground, near the family member, that can provide logistical support? For example, having someone who can provide information about how the healthcare system might work in a different culture is a tangible form of aid.

3. Don’t expect that others still fully grasp the depth and complexity of your grieving process. You might even hear well-intentioned but misguided sentiments like, “At least [your family member] is still alive. That’s something to be thankful for.” Others might express confusion over how long it’s taking you to “get over it.”

Know that your emotions are legitimate. Know that the invalidation of your grief by others is a shared experience among those who experience ambiguous loss. And if possible, surround yourself with folks who understand that your grieving is valid.

Be kind to yourself. Accept your limits as a human being. There is only so much that you can do, especially when you are confronted with the realities of being so far from your loved ones, in addition to the uncertainties of the illness that seems to take a different turn each day. Self-compassion says that it is important to recognize that your limitations are also part of who you are (Neff, 2011). Similarly, religion emphasizes the recognition of our own finiteness and how this can help us rely on a higher power, especially during difficult times.

4. You are not being selfish by engaging in self-care. It is easy to feel guilty, especially if you are having to navigate two different contexts: your current setting, and the other one that includes your loved one. You might experience pangs of guilt whenever you are reminded of your family member who is bedridden. You might be especially prone to these moments of guilt whenever you are doing “normal” things in your immediate surroundings, such as doing something “fun.”

Know that it is possible to live in this tension of grieving but also enjoy your immediate surroundings. This living in two or more different realities—indeed, ambiguous living—does not mean that you are not doing your part in loving and caring for your family member.

[1] I am grateful to my colleague and friend Dr. Julie Pusztai for introducing me to this term.