I dread the day when I will no longer be able to be on the road making speeches and listening to people. I dread the loss of stories. Everywhere I go. I hear the stories of grief. Most of what I know about grief comes from these wonderful stories gathered over twenty-five years of touring and listening. We all approach grief in our own way so every story is somehow different and full of meaning. Sometimes one phrase can lead to tremendous insights.
A great example of one phrase setting off a world of new insights happened a few months ago. The city where I was speaking had experienced a rash of sudden, unusually tragic deaths. These ranged from teen suicides to murder to perfectly well people being struck down by cancer in what seemed like far too short of a time. The sponsor asked me if I would meet with a small group of these families in the afternoon before the presentation. I agreed, although I really did not expect them to attend since, in most cases, the grief was far too recent for much public exposure. To our amazement, several families came and I hope the meeting was meaningful to them. I learned more than they did and more than I can relate in these short blogs.
Just as we were preparing to leave the meeting a woman said, “I feel like I have two stories to tell and can only find a place to tell one of them. I need to tell the story of my husband’s death and I am able to do so. I also need to tell the story of his dying. I need someone to hear what is was like to see him go from a healthy person on the ski slopes in January to being dead in April. To explain feelings I kept bottled inside because my pain was nothing compared to his feelings and his need. Now all that seems to be past and no one asks about it so the story just lies there untold.”
Her simple statement opens up the whole world of the caregiver walking with a loved one through a terminal illness. The caregiver hurts too. The caregiver is lonely too. The caregiver gets tired and angry and feels rejected but must put those things aside and give themselves to care. When friends call they talk about the loved one and the disease, rarely does anyone respond to all of the things going on in the caregiver. Oh, Someone might say a word of sympathy in passing, but there is rarely a chance for conversation or sharing beyond that passing shot.
Care giving is a trap. The caregiver hurts, but thinks they are being selfish if they notice the hurts themselves much less expresses them to others. “How can I think of me right now? My problems are nothing compared to my loved one who is suffering and dying.”
Often the caregiver has a daily crisis of faith, while living through a constant stream of people talking about God and prayer and healing, and comfort. In some cases the caregiver can’t find any of that but must act like all is well in that area as well.
Too often the end result is several months of swallowed feelings and questions that then get passed over as we move from the dying to the grieving. The woman is right. There are at least two stories to tell and we need to find some way to tell them.
Some will think it not healthy to go back and dwell on the past, but we need someone to hear and understand how we felt, what we thought, what made us angry, what gave us peace, who we loved to see coming, who we dreaded to see coming and why. Being understood gives a sense of acceptance and helps us feel like we are normal. Feelings we thought might not be right can now feel acceptable. Angers we carried can now be exposed and understood.
If you are reading this after being a caregiver in a long term illness, I hope you can find someone who will hear that other story.
Copyright Doug Manning of In-Sight Books, Inc. Doug’s books, CDs and DVDs are available at www.insightbooks.com. Post originally published on Doug’s Blog at The Care Community www.thecarecommunity.com.
Updated: August 21, 2015