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.

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[Note to reader: I wrote this to someone who shared feelings of guilt about not being there often enough during their best friend’s dying days. I hope it provides some relief to others who share the same feelings. – mjf]

Dear friend,

I wanted to write to you to express some thoughts about how you may be feeling about your loss, your dearest friend’s death.

You mentioned that when you saw your friend’s husband at the funeral that he came to you with a big hug saying how you were such a good friend to her. But you felt you didn’t seem to deserve that, in part because you seemed to feel guilty for not spending much time in person with her in the last year.

But I’m here to tell you that your friendship was felt and truly appreciated. This is based on my own experience, especially with some of my and Keith’s closest friends, ones who could not be there often in those three months.

There is a difference between friends who impose that friendship upon the other, and those – like you were to your friend – whose friendship was strong without imposition, regardless of the physical distance that separated you. Those small gifts you sent, the emails to her daughter or her husband, each and every one of those small moments were huge. For they carried with them the strength of years of sharing and love, support and understanding. They carried with them a gentleness that acknowledged that sometimes space is good, and emotional support is more than for the dying, it is for those who suffer the waiting.

I’m sure your friend – during any coherent moments in her last weeks and days – recognized that. I’m sure she could see it in the faces of her loved ones, that they were receiving the love of dear friends like you who helped buoy them from behind so they could face what was ahead for them.

Be thankful for the gift of friendship and love you shared with your dear friend. And continue to support her children and husband with the same gentle touch that you shared before. Let them know your pain, too. For it will remind them that the grief is not theirs alone, and the journey to healing is one borne with others who knew your friend in different ways. It is an awakening journey that allows them to see their loved one in a different light. It is a journey that will be different for each of you, but one that will be beautiful and painful nonetheless.

Be thankful knowing that your small touches even from a distance were probably more appreciated than all the impositions of personal space that those geographically closer may have been unable to avoid. As harsh as it may seem, there are times during this summer’s dying process that I wished others would have let us be. Email was so much easier… I could read it on my own time, cry a little when it touched a nerve, and close the letter. But a phone call was harder to ignore, though still possible. Text messages were easier. They didn’t require the power of speech, something that often eluded me for my voice would begin cracking from the pain of retelling some worry. But the occasional email, or the simple voicemail saying “I am thinking of you and I don’t expect you to call me back” was often enough. As harsh as it sounds, having someone there all the time was sometimes more stressful than being left alone. It is hard to say, really, how much is enough. I’m sure it’s different for others. But my little family found that the distraction of the doorbell, or the pressure of wanting to find something for another to do because you didn’t want them to feel their offer of help was unappreciated… it sometimes added more pressure to a stressed family rather than help relieve any.

So I share this thought with you, that you’ll lift any veils of guilt from your conscience about not being there more, especially in the end. They knew you were thinking of them. They knew they could call on you. And they knew you loved and cared for them deeply, and would share in their pain of losing someone. And just knowing how much you meant to your friend, and how you reached out with those simple and kind gestures, ones that were unimposing but probably always arriving at just the right time, those helped them ride out the last waves of an impossible storm. You were one of those precious life-rafts they could reach out to hold onto when the time came. And it did. That hug at the funeral said it all.

With warmest wishes and sincerity,
Mara

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