The Gift of Anticipatory Grief

It was a beautiful day in mid-October when my husband looked at me funny and asked if I was OK. I replied, “I think so, why?” And he said, “Your face looks a bit yellow, especially around your eyes.”

To the average person this might not be seen as a peculiar comment but coming from my color-blind husband who sees green grass as red, this was earth shattering. And he was right, I was jaundiced.

Following an initial consultation with my primary care physician, I was hospitalized. After a series of tests and many chats with lots of specialists, I was diagnosed with a rare disease called Mirizzi Syndrome. Apparently Mirizzi Syndrome is fully described in medical textbooks but not often seen “in the wild.” As a result, I was visited and examined by many student doctors.

I was scheduled for gall bladder surgery, but not right away. Not until my older son and daughter-in-law got married a few weeks hence.

And so, although I brought along the worry and dread of major abdominal surgery, and the possibility of seriously bad news related to my pancreas, I did my best to be a gracious Mother of the Groom, and I succeeded with support from my family and friends. The wedding was beautiful, and all went well.

Mixed in with the joy of welcoming my first “Chosen Child” to our family, and several days before the long-awaited pathology report finally arrived, worry and dread, characteristics of Anticipatory Grief had started to set in. I became prone to outbursts of spontaneous crying, losing my cool at the smallest provocation, staying up late and then oversleeping.

In working with a client, I would have recognized these symptoms as fear, pure and simple. Fear of the unknown. Fear of treatment options. Fear of treatment side effects. Fear of loss. Fear of pain. Fear of failure. And quite possibly fear of death. It was inevitable, it was obvious, it was even sensible, considering the circumstances. But steeped in my own anxiety, I could only act it out.

My gallbladder surgery was successful, and the results were better than expected. I was left with a hideous scar and some new and unusual “internal plumbing” changes, but otherwise I was awarded a clean bill of health. I was lucky.

My only job post-surgery was to be patient with the healing process. I accomplished that task. My fears disappeared.

Unfortunately, and especially as we grow older, many of us have heard of, or been handed ourselves, a diagnosis of a terminal illness. And with that notification everything changes. A special kind of grief begins.

It is called Anticipatory Grief and is described by grief experts as “the grief that comes before a death.” And we know from experience that a grief that comes before death is different than the grief we suffer once someone dies. A specific and often cruel characteristic of anticipatory grief is that no one can accurately predict how long it will last or what it will entail.

What we do know, however, either from personal experience, or from witnessing or hearing of the suffering of a loved one, is that when a life-threatening diagnosis such as cancer, ALS, or one of the several forms of dementia is received, life as we knew it before that pronouncement is no more. And these changes affect everyone involved, including the patient, loving family and friends, and the primary caretaker.

Using Alzheimer’s disease as an example, it is typical for the victim to gradually lose his or her ability to understand, function fully, and communicate clearly. This process can take many years and sadly up until a certain point even the patient can recognize their decline. “I’m losing my mind.”, “I wish I was dead.” are two commonly reported wails expressed by an Alzheimer’s sufferer in the early stages of this hideous disease.

When considering the concept of anticipatory grief, I would like to propose that the fear and grief that comes along with a serious diagnosis ending in death can be a gift.

In the early stages while communication is still viable, an opportunity to express desires and wishes exists. Long before hospice care is needed, and while safety measures are still maintained, you and your loved one and your extended family can take advantage of Anticipatory Grief.

Sometime after the initial shock of the terminal prognosis has worn off, it appears that some families attempt to create an opportunity to have a serious and sensitive conversation about the final wishes of an Alzheimer’s patient.

One such example that a client shared was that when her beloved Aunt was diagnosed with Alzheimer’s Disease, together she and her aunt made plans for a family gathering at which the aunt could speak clearly and directly to each member in attendance.

When Auntie died several years later, more than one family members shared laughter and tears about the party that their aunt hosted when she was first diagnosed.

It most likely seems counter-intuitive and maybe even insensitive to refer to Anticipatory Grief as a “gift.” How can that even be considered when grief of all types is the result of loss. And while final loss is also in fact the result of Anticipatory Grief, juxtaposed is the real potential to listen to and hear the wishes, desires, fears, and regrets of everyone involved, even the person dying.

Imagine what it would be like to have the courage to ask and not guess what the dying might desire. One can imagine that over the course of an intimate relationship, a conversation may have taken place in which one or the other may have made ordinary last requests like, “I want a closed casket.” or “I want to be cremated.”

And while these requests may have been sincere and valid during a casual family dinner, when the diagnosis is announced things might look different from everyone’s perspective.

In my experience as a therapist, I have learned that being able to clearly ask for what is wished for and be granted it, or to open a discussion of a particular cultural tradition that may appear outdated to some, but important to others unexpectedly becomes allowed, then the feelings of being heard and understood become more solid.

There are times when traditions may be misunderstood, or rendered silly by members of different generations, and conflict results.

In thinking about how so-called traditions can sometimes take on a life of their own and in turn yield unwarranted significance, I am reminded of a classic story of a grandmother loping off the butt end of the Easter ham. “Because my grandmother did it this way” was the most prevalent response among older family members when asked about this preparation by someone younger. “It’s tradition.”

At the conclusion of this fable, it is revealed that the pan in which the ham was to be baked was too small and it became necessary to lop off the butt end.

When considering traditions, a mutually respectful conversation about family practices and how they came to be can be a gift to all involved. A deeper understanding of why certain things are carried out in particular ways becomes educational for everyone. And if there is a tradition like the “Easter Ham,” there might be an opportunity to share ideas about how things can be different, or how they stay the same.

The period of Anticipatory Grief, when thinking about the death of a loved one, might be a time to create a new tradition in honor of the dying. A yearly trip to a special place. A special ritual marking important days. A special meal. A special song.

Newly created traditions, made with and for the dying can become a source of comfort to the bereaved.

Very early in my career, I met a client, named Louis, who had a significant impact on how I learned to do my job. He was a middle-aged man with a terminal cancer diagnosis. Although he was desolate to think that he had only months to live, and was devastated by the thought of leaving his wife and kids, when he came to my office, he was quite content to share the story of a recent visit he had with his longtime friend, Tim.

Instead of the usual frivolous banter that so often filled these visits, this time Tim mustered the courage to ask his dying friend about what he was experiencing. What does cancer feel like? How do you cope with the pain? What was it like to think about the immediacy of death, about leaving his family and friends and missing out on milestone events?

So many of us are hesitant to speak deeply or to listen closely to our dying loved ones because we don’t want to remind them of the reality of their situation. We don’t want to add to their pain.

My client assured me that he was not reminded of his situation, because he never forgot it. He was grateful to be able to share his thoughts and feelings with his close friend, and he let him know that. And in addition, Tim was able to share his sadness with Louis, and to express his love for him.

As expected, Tim was devastated when Louis died. I trust as he grieves, the memory of that special conversation comes to mind when he thinks of his friend, Louis.

Eventually Anticipatory Grief comes to an end as death is near. Very often this occurs while family and loved ones are holding vigil in a hospice setting.

A dedicated adult son was encouraging his beloved father to finally let go. He tearfully recounted this story. I got very close and whispered in my father’s ear. Having heard these stories growing up I said, “Dad, all your boy cousins are gathered at Nana’s kitchen table, enjoying her wonderful cookies, and they are waiting for you to arrive.”

This beloved son was rewarded with a single tear that rolled down his dad’s cheek.

A colleague of mine states it this way “When communication ends grief begins.” Using this time before communication begins to wane can become a gift to oneself of comforting memories. What a beautiful and simple way to make lasting memories that may become comforting when our loved one has breathed his last.

And with the expansion of mutual understanding comes the ability to cope with the loss of a loved with a more open heart, and to not be caught up in the memories of miscommunications and potentially bad feelings.