I have been walking with a family through the long process of a terminal illness. Brain cancer is slowly taking the life of their twenty-one year old son. The process is long, the pain intense and the battle to control the pain has become a full time job for the entire family. Their situation touched the hospice workers so deeply they asked me if I would be willing to meet with the family and perhaps talk with the young man about his dying. His condition did not allow me to converse with him, but I did set up a series of meetings with the family which consisted of his father, mother, and two sisters. 

I had a twofold purpose for the meetings. First, I wanted to help the family build a safe environment for the son so he could talk with them about his dying. People usually know they are dying and most want to and need to talk about the process openly and honestly. Most of the time, families are convinced that the patient will give up and die as soon as they know they are terminal and spend the last days avoiding the subject at all cost. The loved one then faces a lonely death with no one to talk with. This family was very responsive to the idea of openness and honesty during the brief spans of consciousness the son experienced between the medication for pain. 

The other purpose was to deal with the feelings within the family as they walked through this experience. I think it takes a family to grieve a loss and the sooner the family can begin to open to one another the better they will be able to deal with their grieving. We started a family group before the death and pledged to continue meeting afterwards.

One of the first things I heard from each member of the family was that they felt like they had already done a great deal of their grieving and that as soon as the ordeal was over they would be much better. The wait and the “not knowing what will happen next” seemed to them to be much worse than the grief they would face after the death. 

The frustration and pain of such an ordeal certainly qualifies as grief. The loss is right in front of their eyes every moment of every day. They must watch him die by degrees and grieve the loss of each small step. The day he lost the ability to feed himself. The day he could no longer get out of bed. The day he could no longer control this bodily functions. All of those are losses to be grieved. By the time I arrived on the scene they felt like they had already done all the grieving that could be done. They called it preemptive grief and they were right in that they had gone through a lot of grief. They were not right in their belief that their grieving was taken care of before the death. 

It is hard to believe, but the death will be a shock to the family. No matter how long the suffering nor how many times a family prays for the ordeal to be over, death is still a shock. The loss becomes physical and real. The reality and finality of the loss gradually begins to dawn and the grief changes, of course, but it does not take long for us to discover that the grieving is far from already done.

Their grief may be delayed. Quite often, after a long term illness, the family is too exhausted to grieve. They are drained dry emotionally, and are left feeling flat and detached. That can leave them feeling guilty for not feeling as bad as they thought they should. When my father died, I did not feel anything at all. I felt guilty and wondered when I stopped loving him and could not understand my lack of feelings. It took me eight months and then I woke up one night grieving the loss and facing the long journey of grief, delayed by the long term care, but certainly not done preemptively before the death occurred.

In time the shock will wear off and they will begin discovering the depths of their loss. We do not know what we have lost until we lose it. It is almost like we have to inventory the loss before we can grieve it. Every day we think of something else they meant to us, something else we wanted to do with them, something we wish we had said to them. This inventorying is the beginning of the journey of grief after the loss, and is a necessary part of the healing this family will need. 

This family has walked through so many emotional upheavals and had so many hopes elevated and then dashed, while watching an only son suffer each step of the way toward death. It would seem that they should never have to grieve again, but that assumes that grief is something that is bad for us. Grieving is nature’s way of healing a broken heart. It is not something to be avoided at all cost. It is the outlet for feelings that must not be ignored or buried. It certainly can begin long before the death occurs, but it can only be completed when the loss is real and the inventory done.

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