Mara Jevera Fulmer's Blog

When a terrible disease ravages someone you love, the mourning process begins long before they finally pass on. Kübler-Ross (1969), in her study on death and dying, described five stages of grief including denial, anger, bargaining, depression, and acceptance. But Kübler-Ross was initially focusing on those who were dying, and not so much on those who were dealing with personal loss of any great significance, which she later came to recognize.

These stages are not linear, either, and can occur in any order, if at all. Women tend to experience all five stages more than men. They can be cyclical, too, with two or more occurring in an almost extreme emotional roller coaster. For both the dying and the loved one, getting to the point of acceptance does not always happen at the same time. The dying often reaches the stage of acceptance before their loved ones. But if and when both reach the point of acceptance, where communication and reflection can be experienced, a more dignified death can be found.

I’d add a couple of additional stages, or at least notable elements, to the stages of pre (and post) grieving. That includes fighting to maintain control of the details in their lives. The opposite is the disruptive feeling of vulnerability when control is lost which can lead to related stages of despair and anger.

Another related stage involves trying to make order in one’s life. Especially when the world around you seems to be in chaos, small efforts to create order can take on an outsized importance. Cleaning out cupboards, putting away old records, sorting through old photos, are just a few example of how the person facing loss may attempt to build a sense of order in a life that seems otherwise out of control.

Recently, I heard this statement made by someone who is facing the inevitable loss of his longtime spouse who is in the late stages of Alzheimer’s disease. I’ve paraphrased it per my own cloudy memory.

I feel like I’m in a carnival outhouse sitting out in a field, and the circus is packing up to leave without me.

While he didn’t elaborate, he was trying to express his feelings regarding the situation he found himself in now. I’ve been thinking about this and cannot help but connect it to my own experiences and ruminations.

First and foremost, there is the overwhelming feeling of vulnerability, of literally having your pants down in a crisis, or a formidable change that is going on around you. You’re stuck. It is hard to move forward without first finishing the primary business at hand. Panic sets in and it is hard to make decisions. Yet you’re also worried about being left behind, and by the act of moving to a new location – mentally, emotionally, and physically – and the unknown that comes with that. But even more so, it is a fear of being left behind by the ominously fast progression of a disease that robs you of the one you love, again mentally, emotionally, and physically.

The carnival/circus represents fetes of apparent magic, gravity-defying acts, seemingly impossible, often nonsensical, frightening in their dangerous distortions of human entertainment, and the funhouse mirrors that twist and distort our vision of reality.

The world around you no longer makes sense and you feel vulnerable, scared, afraid of being left behind, fearing for your loved one and a future you cannot envision without them. It literally scares the shit out of you… And yet you know you have to keep moving to survive. Because that’s your role here.

Of course, the circus could also represent your loved one, the person who was the highlight of your life, with which you shared the literal stage of life, it’s bright lights, music, the comedy and drama of a life fully shared. Either way, it all seems so unfair.

Anger rushes forward. Anger at what fate has thrown you, your loved one, the cruelty of the disease. There is no preferred or better way to die of a disease. Cancer kills the body slowly while eating away at the person. Alzheimers eats away the person while leaving the body to deteriorate at a slower rate, until the parts of the brain that operate the body begin to lose their synaptic connections.

Either way, these diseases are cruel – to the loved one who suffers them, and to the lover who must endure the pain of watching, of frustrating efforts to try and overcome the diseases’ manifestations, the cruel teases of normalcy and strength that suddenly appear and then, as a wisp in the winds, they disappear to the mists that hid the light in their eyes.

Whether you want to or not, you are, and will be… the survivor. The one who will carry the stories forward until they can be shared fully with a new generation. You will be needed by others who will benefit from your wisdom, humor, insights borne of long experience. The fates have determined that your place is here…in this world…where you are still needed.

The journey along side the dying of a loved one is dark and painful. But it also has its moments to be cherished. The fleeting glimpse of a smile, a flash of humor, the small gestures that show you are still connected to this loved one. You have been chosen for the honor of being beside them on this journey to the end of this life. You, however, will stay behind, their partner only until the gates of passage open to the other side. Until death do you part.

It sucks. It hurts so badly, the pain is physical, palpable. Breath… breath… You are still alive. And they will always be with you, and waiting on the other side to greet you when your turn comes, naturally, when the fates determine it to be so. In the meantime, treasure each moment with your loved one as a gift. Soon enough, there will be only memories that you will hold onto tightly, then share with others when the right time comes.