Kubler-Ross’s stages

Popular culture has accepted Kubler-Ross’s Five Stages of Grief as truth. Studies done since her book, On Death and Dying, was published have poked lots of holes in the idea, but people still think of it as reality. It serves as the base for how lots of people deal with the loss of a loved one. But the model doesn’t really deal with how people deal with a death after it happens. It tries to deal with what a person confronting a serious or fatal illness goes through, stage by stage.

…always act out of love. 

She based her ideas on her observations of people who knew they were facing a fatal injury or illness. I suspect that patients go through something like what she describes in coming to terms with their own death before it happens. I suspect spousal caregivers go through something similar while their loved one still lives.

It’s pre-death–not post

But after six years of living with the loss of Jane–and talking to many other widows and widowers–the five stages concept operates as a comforting myth for those who have not experienced the loss of a spouse. It has little bearing on the reality of our lives after a husband or wife stops breathing. Even after we’ve accepted the death as real, it still hurts like Hell.

…people still think of it as reality.

But it is a useful thing for caregivers to understand on two levels. First, the patient does go through much of what the theory states. Where they stand in that process influences their attitude and how they deal with things. And we, as caregivers, go through those stages not only with the patient, but in our own minds as well. The problem is, we don’t often go through them at the same pace. That can create frustration on both sides.

Stage 1: Denial

Jane and I were both in denial for a long time. She wanted to believe her shortness of breath and loss of stamina can as the result of her slow recovery after the flu. I believed that, too. But we remained in denial even after her diagnosis with NET cancer. We accepted the rosiest version of things until the condition of her heart shattered all of our illusions.

…it still hurts like Hell.

And yet, part of me remained in denial until the day before she died. We need to understand the constant overlap of all the stages. Just because we get angry doesn’t mean we’ve left denial behind. Even when we reach the last stage, acceptance, traces of all the other stages remain. Death may resolve all of this for the patient. We can’t know that. But it doesn’t resolve everything for the caregiver. It compounds the issue with the bitter emotions of actual loss. But that is a topic for another day.

Problems denial creates

Denial can slow access to treatment. Because we kept coming up with what seemed reasonable reasons for what Jane experienced in the months after her battle with the H1N1 virus, we didn’t really worry about putting off seeing her doctor. Jane felt under pressure to make up the ground she had lost with her AP biology students. Pressure always gave her increased diarrhea and insomnia.

…the condition of her heart shattered all of our illusions.

A diagnosis six months earlier likely would not have meant much in terms of longterm prognosis in Jane’s case. But with a different cancer, it might have. I’ve seen many others put off dealing with symptoms to their detriment. Denial creates a kind of deadly inertia both patients and caregivers need to fight. I still wonder if we had gone for the heart surgery earlier if it might have made a difference–though I’ve been told multiple times it would not have. Denial of the seriousness of her heart condition did convince us that waiting would be OK.

Stage 2: Anger

Of the five stages, anger may be the hardest one to deal with. Anger is a blind emotion and causes us to lash out at those closest to us. I was quick to anger as a child. It made me so violent I considered myself a danger to both others and myself. I sublimate anger constantly and try to direct it in useful directions when I have to let it out. But the depth of anger is sometimes too great to control and it leaks out in unintended ways. I hurt people with some frequency when Jane was sick–and for a long time afterward. I cut people with my words without knowing it until someone pointed it out.

Denial can slow access to treatment.

Somehow, I managed to largely keep my anger in check where Jane was concerned. But I made clear from the outset that she could use me as a target for her anger at will–and that I wouldn’t return her anger with anger of my own directed at her. I used a kind of sleight-of-mind for that. I discovered that if I took the blame and apologized, even if I had done nothing wrong, it eased her anger. And I convinced myself that, much of the time, it was the cancer I was talking to and not the woman I loved. Not that I didn’t sometimes giver her cause for anger–and it horrified and angered me every time it happened.

Stage 3: Bargaining

I don’t know what kinds of bargains Jane made–or tried to make. I suspect part of her willingness to let her doctors study her was part of one of those bargains. Jane did not like strangers poking and prodding her under the best of circumstances. I know the scientist in her would not, however, have allowed her to do otherwise than she did. And our conversations showed me clearly what she wanted.

Anger is a blind emotion…

I do know I went into bargaining mode pretty quickly once we had a diagnosis. From my reading, I knew just how much trouble lay ahead of us. I knew we had one of the best oncologists in one of the best cancer centers in the world working with us. I knew we had access to the best cardiologists and surgeons in the world. But I also knew we needed miracles stacked on miracles.

Bargaining scars

I believe in higher powers, But we haven’t spoken since Jane died. A chunk of the anger I stored during Jane’s struggle rages in their general direction. To tell the truth, though, most of it gets aimed at me. I failed her. That failure places me in a special kind of Hell. My efforts did nothing but stretch out her suffering. My bargains didn’t work.

…we needed miracles stacked on miracles.

You can’t bargain with mindless cancers. You can’t bargain with mindless death. Consciously and intellectually, I know that. But emotionally… For caregivers, the emotional scars those bargains leave behind are significant. Losing them feels like a personal failure we should have found a way to avoid. That we didn’t scalds our souls. But that, again, comes after they die, not before.

Stage 4: Depression

Depression takes many forms–and caregivers, wrapped in their own anger and depression and the daily duties of the work, may not always see it in the patient when it arrives. And it comes and goes for them the same way the other stages do for both of us. I remember Jane’s reaction when I told her I wanted to take an extended leave from work to stay home with her first semester.

You can’t bargain with mindless cancers.

“Why? So we can sit here and stare at each other?” she said. Her voice was angry, but her words told me she was already depressed. Yet a week later, after our first trip to Dana-Farber, she was enormously upbeat and positive. A week later, she was screaming at me in a fast food parking lot. Honestly, I often didn’t know who I would be talking to from one minute to the next. Part of that had to do with her fluctuating serotonin levels. With a NET cancer patient, you can’t always be sure where the emotions come from. It complicates everything. But she also had the very real depression that goes with dealing with a fatal illness, especially in its late stages.

Roots and complications

For either individual, the illness shatters all the plans you’ve made together. It destroys all your hopes and dreams for the future. If all that didn’t depress you, outsiders would question your sanity or your commitment to each other.

It complicates everything.

Some people self-medicate under these circumstances. Jane and I, never heavy drinkers in anyone’s mind, essentially stopped drinking all together after her prognosis became clear. We both knew alcohol for the depressant it is. It would only make things worse. We both knew we needed clear heads for what we faced–and that any drug–even something prescribed–would hurt our ability to function rationally when we needed to.

Stage 5: Accepting death

Eventually, the patient accepts the reality of their own death. I suspect they get there earlier than caregivers do. Part of that is the need for the caregiver to stay positive no matter how long the odds are. I even managed to put a positive spin on telling Jane we were out of options and that in the morning we would take her off all the machines that were helping keep her alive. I think she was annoyed that she woke up for us to tell her what she already knew.

 It would only make things worse.

Caregivers need to stay aware of when the patient reaches the point of acceptance, even if the caregiver hasn’t arrived there yet. Patient acceptance creates subtle changes in the dynamic between patient and caregiver. You have to be able o look at the big picture in terms of what you know that they may not in terms of options and where they are in their care. But their needs and wishes need to guide you. The two things can create a real tension between you.

The end

I screwed this up. Jane told me two nights before she died that, despite her condition, she wanted to go home. I knew she was frustrated with the pace of her recovery. I knew she was tired of bed pans and feeding tubes and having others change her bedclothes. And I thought that was all this was. We’d been here before.

Caregivers need to stay aware…

But she could feel the end coming in ways I could not. She wanted to die at home, in her own bed, in our own room. By the time I knew what was going on, it was too late for her to do anything but die in that hospital bed. On the other hand, she might have lingered longer at home than there–and she wanted life over.

Lessons from the stages

The lesson for today, then, is this: Pay attention, both to what you and the patient are feeling at any given moment. Listen to what they are saying and what they are not saying. Know that you are not necessarily going to be in the same emotional stage at any given time. You need to give that due consideration in whatever you do.

…she wanted to go home…

My last, best, advice on this topic is always act out of love. Then, even if you make mistakes, you’ll have a better shot at living with yourself afterward. It still won’t be easy–but it’s all that has kept me even remotely sane since.