I don’t mean to be a downer, but, does anyone else ever think about what’s coming? I can’t seem to stop myself from thinking about the funeral, what people will say, what it will feel like to be there. I think about what my life will be like after… what will this house be like, what kind of echoes will ring through it? It hurts so bad that I can hardly breathe. Who will make my morning tea?
— Ellen, 58, caring for husband with pancreatic cancer
Anticipatory grief is the work of grieving losses that are approaching, even as a loved one endures. More than a mere foreshadowing of the grief that comes with bereavement, it is its own distinct emotional process -- a "feeling forward" into the grief-to-come when faced with the actual loss.
Most long-term caregivers I have worked with have experienced this in some ways; many, through these kinds of "mental rehearsals," finding themselves thinking about how they would cope or feel at a given moment if their loved one was no longer here.
This kind of grief can be a crucial element in support of a sense of personal control in the midst of a frightening, sad, and emotionally chaotic time. Although it is often mistaken for negative attitude, pessimism, or lack of faith, it is a natural and healthy human emotional process. It takes nothing away from the hope for a full recovery, but it allows caregivers the mental and emotional space needed to explore and to foster their own ability to endure.
And, while this kind of emotional work does not eliminate the need to grieve after a loss, it may prompt caregivers to attend to the practical preparations that may otherwise feel too precipitous to face. A "plan for the worst, hope for the best" outlook can drive choices like making wills and getting affairs in order, learning what one needs to know to maintain a certain way of life, with or without that loved one. It does not equal "giving-up" -- it is not being "unfaithful" but a practical and wise way to honor the notion of future, in all of its distinct possibilities.
Caregivers working through anticipatory grief have a deep need for the support and understanding of the medical team. Very often, there is no one else in their sphere who grasps the significance of their thoughts, musings, anger, fear, worry, sorrow. When a person is bereaved, others "understand," they seek to comfort and support, but when caregivers openly grieve, they are typically met with less supportive responses. They are "quieted" by family and friends who tell them to "just be thankful it isn't worse" or "just be grateful for what you do have," or who suggest that it is somehow wrong or "tempting fate" to feel the pain of grief before a loved one’s actual death.
Healthcare professionals who allow caregivers to express these intense and often disturbing thoughts and feelings are not only directly supportive but potentially helpful in opening doors to deeper communication and mutual aid between caregivers and their patients.