What I Learned from Alice: Myths and Misconceptions about the Five Stages of Grieving

Marbelhead pathcrop (2)Over the past 30 years, the work of Elizabeth Kubler Ross and the Five Stages of Grief have been widely misunderstood and misapplied. Her five stages outlined as denial, anger, bargaining, depression and acceptance are often interpreted as benchmarks we need to “work through,” hurdles to clear, or goals to accomplish. Sadly this goal-oriented approach has caused many people to believe they can measure their “progress” through grief while undergoing the painful ups and downs of raw emotions. But too often, these expectations lead to guilt and shame if that “progress” fails us somehow.

As if grief itself wasn’t difficult enough, many people have actually judged themselves for not going through their grief the “right” way. And worse, many people have mistakenly believed that if they successfully” worked through” all five stages, then they should have “gotten over” their grief. But the truth is, we never completely “get over” grief, even though we do somehow learn to live with loss.

In short, grief is a very unique and individual experience. Some of us might stay in denial for 10 years as we plow through one crisis after another, and find out later that we are going through the “old” anger or depression from a loss decades ago. And this is okay—the way it has worked best for our life’s circumstances. Should we judge ourselves for not being able to grieve the “right” way just because we aren’t ready to face the powerful emotions of this process?

In my work as a rehabilitation counselor for 20 years, I particularly remember one person, Alice, in 1994 who taught me a profound lesson about grief and death. Oddly enough, I learned the most about grief from a 65 year old dying woman who had no time left for grieving. Indeed, Alice was given two months to live after a huge fast-growing tumor was found right next to her heart. I was her counselor at a hospital, and it was my job to somehow (according to the request of her physicians) help her with her “anticipatory grief.” Her daughter was already grieving, and welcomed my offers of comfort and acknowledgement of her mother’s horrific situation. But Alice’s daughter warned me, “She’s not facing it, she is totally refusing to face it.”

When I stepped into Alice’s room to say hello and introduce my services as a counselor, Alice snapped, “Don’t you dare talk to me about (she hissed sarcastically) my feelings—I just want to have a few good weeks—so don’t spoil it. In fact, you can just forget about me unless you can make me laugh or keep me entertained! That’s all I want.”

I was blown away, but I wore my professional smile and empathically nodded. Of course, inside my calculating brain I was “diagnosing” her stage of grief as denial bordering on anger. Yes, sure, I could just humor her and play the game, so she could get to trust me, but hopefully, at some point, I could help her “grief process.”

Over the next few days, with the help of a chaplain who played a guitar and sang folk songs, I joined in the singing and clapping and observed Alice fully engaged and “entertained.” Her daughter hovered around the bed, pretending to be happy with the chaplain, looking back at me for signs of “Now it’s time for you to talk to my mother…” But I never did that “talk” with her. Instead, we laughed, sang, got goofy, watched stupid reality shows, swooned over David Duchovny on the X-Files, ate ice cream, painted toe nails, read Peanuts comics. Alice died just one hour after her last X-Files episode.

I was shocked, but I marveled at Alice’s amazing sense of what she needed before she died. I believe Alice knew, deep down in her bones, and in her soul, that her time left on earth was utterly too short to do any “grieving.” I was amazed at Alice’s strength and certainty that she must “entertain” herself right up to her last breath. I am so glad I listened to her, and followed her lead to do the “right” thing by her standards! Fortunately, her daughter was also heartened that her mother was comfortable, and had a voice in her care for her final weeks. And to be honest, to this day, when I am with any other person facing grief or destruction, devastation, or death, I let them show me how to join them in their own way of coping.

We all have a unique, personal wisdom that guides us, often coming from our body sense, our gut, our instincts. The five stages of grief might not apply to someone with just a few weeks left to live. The five stages of grief might not apply to a 10 year old who lost his father after losing his friend a month before that. Or to a 30 year old woman raising two kids on her own with three jobs. We all go through the stages unevenly, and not even in the “right” order. It might be denial, then depression, then anger and not reaching acceptance for three decades. But all the while, every day we are handling each curve ball of unpredictable life events coming our way, in our own way.

Thank you, Alice, for teaching me to step into the present moment, out of my expectations of your grieving process, to the realities of your grief without time to grieve. Yes, Alice, you “worked through” your denial stage very brilliantly. Denial is a beautiful thing, I’ve discovered, and if I ever have to leave my life as quickly as you did, I hope I can enjoy it as much.

valVal Walker, MS, is the author of The Art of Comforting:  What to Say and Do for People in Distress(Penguin, 2010), and a Nautilus Book Award Gold Medalist in 2011. The Art of Comforting was listed as recommended reading by the Boston Public Health Commission’s Guide for Survivors of the Marathon Bombing. Val’s articles have appeared in Whole Living Magazine, AARP Bulletin, Coping with Cancer Magazine, and other national publications. Formerly a rehabilitation counselor, she now works as an activities specialist leading groups for seniors with Alzheimer’s, and other groups with disabilities. To learn more about Val you can visit her website,The Art of Comforting.

But I’m Not Ready Yet…

Peter
Peter Darr Paul, 1938

It began with some unanswered emails. My 82-year-old uncle, Peter, was moving to a new apartment in a senior living facility. We were the only family members living on the West Coast and we kept in touch at least monthly. We had spoken of meeting for lunch that month and it was my turn to treat him at his favorite downtown restaurant, Southpark. I emailed and followed up with email, but didn’t call because I didn’t have his new number. All I could figure was he didn’t have his computer set up at his new place. I should have known that this was not like him but it really never occurred to me that he was having trouble getting settled – he was so capable, among the smartest people I’ve ever known: educated at MIT and owner of a Manhattan architectural firm.

When I finally did get in touch with him another month later, Peter didn’t want to go to Southpark. He wanted to stay close to his new apartment, to eat in the senior living facility restaurant and show me the layout of the whole building. Okay, this seemed reasonable but left me feeling a little uneasy. He seemed so tired – he needed to rest as he walked me around the facility. He was a little disheveled, too. Still, I chalked it up to the move – obviously exhausting to someone in his 80’s.

It’s amazing the allowances we will make in our mind when we don’t want to face reality or the inevitable.

Throughout January I didn’t hear from my uncle. Somewhat unusual but I knew there were so many activities at the senior living facility that he could be getting involved in. It wasn’t until early February when my father and cousin started raising alarms and asking around if anyone else noticed how much Peter was repeating himself during phone conversations. I went to visit him immediately.

peter wedding day
Peter and Patricia Paul on their wedding day, December 3, 1955.

His tiny studio apartment was in desperate need of cleaning and tidying – though this was not especially different from his other apartments. He always had lots of projects in progress and spread out as he worked on them. But he still seemed so tired as if he would not have the energy to clean if he wanted to. I was far more alarmed by the idea that he might also not be cooking for himself. If he didn’t have the energy to clean he probably didn’t have the energy to fix meals either.
He said he couldn’t get his email to work, or his TV or his garbage disposal. When I told him I would contact facility maintenance, he said he didn’t want to bother them and that they had already tried and some other confusing statements that when I look back I realize were his efforts to hide his own confusion and failing capacity. Looking back I should have seen how much the dementia was already setting in. But I just couldn’t imagine that this brilliant man couldn’t suddenly figure out how to turn on a garbage disposal. I simply took the situation as a very proud man who did not want to have to ask for or receive help.

The next time I went to visit him two weeks later, I got to his apartment and the front desk informed me he had been taken that morning to the hospital – he had fallen and he was “confused.”

I rushed to the hospital and spent four hours there as he waited for and was seen by doctors. Even though he knew who I was, it was about the only thing he knew that was correct. He couldn’t tell me how he had fallen or how he had gotten to the hospital or how long he’d been there. When the doctors examined him he told them the year was 1932. As they asked him other questions about his life and basic facts – all answers he got wrong – I felt an inner panic rising. A disbelief that this could be happening. I had to bite my tongue to not help him answer simple questions about how many children he had. The doctor had to rely on me to verify the truth of his answers about our family. I felt like such a traitor when I had to tell the doctors when he was incorrect about something – as if I was being disrespectful to my uncle.

This played out several more times over the next two months as new doctors saw Peter and each time he was admitted to the hospital. Each time I silently coached his answers in my head. Each time I cringed at every wrong answer – the year, the city we lived in, the names of his children. Each time I felt compelled to defend my uncle with each doctor, telling them how educated and accomplished he was. More than one doctor assured me that they could tell that he must have been very intelligent because he was very good at trying to hide his rapidly progressing dementia – and he probably had been hiding it for a while.

This is when I looked back and realized how many signs I should have seen but just couldn’t make that leap from brilliant man to elderly uncle in need of help as he grew more and more confused. There was only so much the doctors could explain; much was not known about the whys and how longs and especially the how much longer. But his failing mental capacities and inability to take care of himself (for how long??) definitely impacted his physical health – further complicated by a long-standing heart problem that required medication.

Peter Paul
Peter Paul photographed in 2003 by his daughter, Suzanne Sease.

Once hospice nursing care had been established at a new room in the medical wing of the senior living facility, all that was left for me to do was visit my uncle as often as I could, to make sure he was receiving care, to bring him my familiar face, to talk to him and to bring him the love of all the family. His children had all visited but had gone back to their homes – of course because we didn’t know how long he had. His heart issue was stabilized and he was receiving excellent nursing care. I settled in to a schedule of visiting during my lunch hour at work and often on Sundays. I got to know the nurses. They also called me if anything happened – like a fall – just to report in. I didn’t realize until later how much this stage of waiting and watching kept me on edge. There was never good news, only a progressively worse status to get used to.

Those two and half months went so fast – and yet in slow motion. I barely got the chance to acknowledge to myself that this was a reality I was going to have to accept. I never got a chance to get used to the fact that we wouldn’t be meeting up for lunch ever again. (It was still my turn to treat him at Southpark.) We wouldn’t be discussing books and politics any more. (And this upcoming election would have been hours of entertaining discussions). He and I would never go to the ballet again. I never had the chance to go to the symphony with him like he had wanted.

He grew more tired and less interested and less there with each visit. On the last day I saw him, he was more alert than he had been. We had one last meaningful conversation that I will always hold precious in my memories.

I was going to visit him just a few days later on that Sunday. Saturday morning I had such a strong urge to somehow find childcare so I could visit him that day. But I didn’t. By that afternoon hospice called to tell me he had passed away suddenly. And there it was – the end.

Suddenly, slowly over many months, trying to prepare for the inevitable, totally shocked by the news. A blur of well-wishers and sympathy. And paperwork and protocol. And sitting with his body as we waited for the young men from the mortuary. The young night nurse who asked for a moment to say good-bye, genuine grief. Everyone so courteous and professional. One last visit to the senior center’s chapel (on the altar a cross, a menorah, a Buddha statue – and my favorite – a Gerbera daisy in a coffee cup). One last look out at the night-time view from the seventh floor of the senior center of our shared West Coast city. I am still missing my uncle, my friend.

To read more about Peter Paul you can visit his Stories Between tribute page here.

AmyPaulUPDATEDAmy Paul is a West Coast transplant who grew up in Baltimore but settled in Portland, Oregon, after a cross-country adventure with her now husband, Jason. She earned her Master’s Degree in English and is a marketing manager for a large commercial contractor – a career that keeps her connected to the “built environment” community to which her Uncle Peter introduced her. Amy and Jason have two sons, Gus and Rex.