When Grief Gets Complicated

It was a rough-hewn box secured with 4 large screws. The receptionist asked if I wanted help to open the box but I quickly refused. I wanted only to run, to carry this box and its contents away and there were no thoughts beyond that. I hefted the surprisingly heavy box and left.

The weight of the contents made my arms leaden. Not because it was so heavy. No, because the emotions were beginning to pull me under. The familiar fingers of grief closed around my heart and I felt the dread of being overwhelmed. I made it to the car before the sob escaped. I laid my head on the steering wheel and waited for the tears but, as usual, they never came. They remained, stuck within.

Complicated Grief Defined

Grief is termed complicated when it extends past the typical period of normal grief. Though ‘normal’ is a terrible term to attach to grief, it helps to identify when unresolved grief becomes a serious condition.  The DSM describes Complicated Grief or Prolonged Grief Disorder as “persistent longing or yearning and/or preoccupation with the deceased accompanied by at least 3 of 8 additional symptoms that include disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness or difficulty engaging in ongoing life.”

When adapting to a loss there are three key parts: 1) accepting the reality, including the finality and consequences of the loss, 2) reconfiguring the internalized relationship with the deceased person to incorporate this reality, and 3) envisioning ways to move forward with a sense of purpose and meaning and possibilities for happiness.

Complicated grief occurs when something interferes with adaptation. When this happens acute grief can persist for very long periods of time. A person with complicated grief feels intense emotional pain. They can’t stop feeling like their loved one might somehow reappear and they don’t see a pathway forward.  A future without their loved one seems forever dismal and unappealing.

My Journey Through Complicated Grief

I was diagnosed with Complicated Grief in December of 2020, 9 months after the death of my husband. This journey of grief has been a long one.

It began in 2008 when my husband was diagnosed with Spino-cerebellar Ataxia (SCA). Our children were 2 years old and 9 months old when our lives changed so completely. SCA is a genetic, neurological disease that progresses slowly and ends in premature death. It was a disease we knew. My husband’s brother has suffered for over 20 years with the disease and his mother had died at 35 years old, possibly from the same condition.

We knew some of what the disease would take from us. We knew, but from the moment we left the neurologist’s office, my husband made it clear that we would never discuss it. I still wonder if that was a gift he was trying to give me. Later, I knew that denial was the predominant reason for our lack of communication. I never had to share his grief, his depression, his fear. He did not share those with me if he ever allowed himself to feel them. I did not have to carry those things but I had to shoulder my own without leaning on him. It was lonely and painful but our focus was our children. They kept us centered on building memories.

For 7 years I walked away from my dream of being a stay-at-home mom and homeschooling our kids. I took a teaching job in an isolated location and I managed. There was no time for grief with 2 children under 3, a full-time job, and a husband who was slowly losing his motor skills, hearing, executive functioning, and emotional control. There was only time to manage, to cope.

Some moments along the way, I felt the loss deeply. The first time he had to be hospitalized, the first time he used a walker, and the first time he lashed out at the kids in anger. They were snippets of grief and loss along the way. I wish grief could be collected up and accounted for. I’d suffered those moments already, they should have been credited to my grief account. Subtracted somehow.

In 2012 I moved my husband to an apartment in a housing block not far from us. He was no longer safe around the children. I had arrived home from work to find him gripping my daughter around the neck. He was angry with her for picking up the cat by the neck and wanted to teach her a lesson. He did not even register her terror or her tears. My gentle, compassionate, tender husband was disappearing and being replaced by an unreasonable, explosive, and violent man.

We lived together but apart for almost a year. Then, the strain was too much and I had to place him in a long-term care facility. That was easier but also so much harder. Every visit ended with his pleas to come home and it felt like I broke his heart each time we left him there. He also managed to escape the facility multiple times, making his way to the bus station with the idea of leaving town. The facility often called to say that he escaped again. I would drive around town trying to find him and then have to convince him to return.

Eventually, my husband had to be transferred to a locked ward in order to keep him safe. That loss was incredibly painful. Guilt was mixed with loss and loneliness. I recall feeling overwhelmed by grief at that time. I thought it was appropriate to mourn the man who was no longer within, even as he was physically still with us.

The years after that were focused on my young children, managing life as a single parent, and trying to maintain a relationship between my children and their father. Then, in 2015 I was offered a teaching position in Beijing China and I made the decision to go overseas. It was so incredibly hard to leave my husband behind. His dementia was progressing rapidly and he could no longer walk with a walker. He slept for much of the day and each time we visited, he pleaded to come home with us. It was agonizing.

For close to 5 years my children and I thrived in China. They were able to attend prestigious International schools while I was finally able to earn enough money as a teacher to claw our way out of debt. We traveled and learned so many things during that time. Each summer we returned home and spent time with my husband, wondering if that would be our last visit.

In March of 2020, my husband passed away. The news hit me like a Mack truck! I can’t even explain how violently I reacted to news that I had been expecting for years. It swallowed me whole. The pandemic had only recently begun and I was faced with the impossible choice of returning to Canada and losing my job or staying in China and facing my grief without family support. I chose to stay. My husband was cremated. There was no memorial. No funeral. No way to say a final goodbye.

And that is where I became stuck. I’m still stuck.

More than a year after his death, collecting his ashes, I feel undone. Complicated grief requires support. It is grief that is not simply resolved with time. “Time heals all wounds” does not apply.

A New Way to View Grief

I appreciate the way grief is described in this video. As I have waited anxiously for my grief to lessen, to quiet within, I can now see things differently. To make grief smaller, my life must grow around it. Perhaps that is how I got stuck in the first place. Perhaps I cradled my grief and refused to look outwards. Now I am trying to push at the boundaries of my life while acknowledging the grief. I have a long way yet to go but I feel that I am stepping outside the circle of my grief.