The Grief Before the Grief
Blessing or Burden? Understanding Anticipatory Grief
A Lifetime to Prepare
Merrell and her daughter Lucy had essentially lived in the hospital since Lucy’s birth 19 years prior. Lucy had a rare and complex medical condition and she was not expected to live past early childhood. She perplexed doctors by living to adulthood. Lucy’s hospital room felt more like a teenager’s bedroom and was adorned with pink pillows and unicorn stuffed animals. She liked to make paint-by-number posters, usually of animals and tape them to the walls. She gave me one she made of kittens that were neon green and orange.
Merrell celebrated every birthday Lucy had as a bonus year. She confided in me that while she couldn’t imagine life without Lucy, she had been preparing for her death everyday since she was born. When it was clear that Lucy wasn’t going to see her twentieth birthday as her health was declining rapidly, Lucy and Merrell made peace with what was coming.
I was with them when Lucy died. Merrell shocked the rest of the staff by letting go of Lucy’s hand and saying “Ok, that’s it. She’s not here anymore” and left her room. I walked her out of the hospital and came back to the floor to check on the nurses. They were irate at Merrell’s lack of visible mourning. “How could she just leave her like that?”
It is true that many families have the opposite response. Some families stay for a long time in the room after a loved one dies. I’m often called to be the one to help them leave. They are typically overwhelmed in the moment and don’t even realize how many hours may have passed.
Merrell, however, had been anticipating this moment for over 19 years. “I knew that I would be here when she died. I’ve known that all along.” She told me later how she went to a bereavement group for parents whose children had died and couldn’t relate to the other parents. “They lost a child in a horrific accident or it was sudden. It’s different because I knew for her whole life this is how it was going to end.” While Merrell had years to prepare, it didn't remove the pain of loss. Instead, it allowed her to integrate that grief throughout Lucy’s life, shaping her way of letting go. Merrell loved Lucy and was a devoted mother. She just knew this tragic reality was coming. She had been anticipatorily grieving Lucy for her whole life.
Blessing & Burden
Anticipatory Grief is the preparation for a change or a loss that is about to take place. It involves all the thoughts, feelings and experiences one goes through when change is clear and inevitable.
In some ways anticipatory grief can be both a blessing and a burden.
Even the experts are mixed on whether anticipatory grief ultimately helps or hinders us. Some say that it can allow for preparation and meaning-making in advance. There can be healing in saying intentional goodbyes and having some closure. Others view it as an unnecessary additional emotional state that doesn’t lessen the grief afterwards. I think both can be true and largely depend on the loss and the individual anticipating it and how they are coping.
It is a rare gift to know that the end is near. There can be a potential for beauty that is not available in the traumatic, sudden deaths that catch us completely off guard. I’ve been around countless bedsides where families tell the dying how much they love them and what they mean to them. Additionally, there is research that shows a reduction in rates of depression and PTSD when loved ones have the time (and support) to witness the medical decline of a patient in the ICU.
I’ve watched others in this state be overcome with helplessness. If they know their loved one is about to die, they respond with any attempt to exert control over the situation. For others, it might be a time of hypervigilance and extreme stress. Even though there is a certain outcome that will occur, there is still so much unknown about what exactly that will look like in the moment.
Sometimes anticipating the loss or change might feel worse than the thing itself. For instance, many grievers dread holidays, birthdays and the anniversary of the death of their loved one. And for some, the anxiety leading up to the date on the calendar proves more difficult than the actual day. Is that because they already metabolized those feelings and prepared themselves? Or would it have been the same without the emotional yo-yoing that anticipatory grief can bring?
Grief is Not Just About Death
If you’ve been reading these posts for a while, you know that I hold the controversial opinion that all change brings about loss and all loss brings grief. So we are all grieving something at any time. If that equation isn’t quite adding up for you, you can read more here:
If we follow that logic, then as we anticipate loss and change in our life (even positive change) we are all anticipating some sort of grief right now.
Here are some examples of everyday things that we anticipatorily grieve:
End of School Year
Parents know that at the end of the school year, children’s behavior goes off the rail a bit. I’ve seen patterns of my own kids acting out more (let it be known, they are not angels to begin with). Much of this is due to excitement about all that summer holds, but I also think it is anticipating the change and not knowing how to verbalize that as such. This past year, it was more pronounced for my second grader as he spent the last 6 weeks of school crying at bedtime because he was going to miss his teacher. Never mind that his teacher goes to our church and he would definitely see him again – my son was anticipatorily grieving the end of second grade and being in his class.
End of a Vacation/Weekend
A therapist once told me that couples tend to fight right before a vacation and/or at the tail end of it. They are anticipating leaving their homes for travel and then having a similar reaction when the vacation is ending and they are about to return home. In some ways that change into and out of vacation mode is anticipatory grief at play.
Similarly, many people reference the “Sunday Scaries” or sadness at the weekend ending and dread for the upcoming week. We are upset that our time off or rest/restoration is coming to an end (likely before we are ready) and do not want to move into the next day(s) of the week and all that brings with it.
Change of Leadership
I don’t need to remind you that the U.S. is on the verge of a divisive election and anxiety is high. People are worried about what the future will hold. The reality is that either outcome will be a change. Therefore, the whole process is tinged with anticipatory grief. As a country, we may be holding this grief altogether and coping in different ways.
Our Own Mortality
Every time I look in the mirror, there are new wrinkles laugh lines on my face and more gray sparkly strands of hair. (And I know those of you older than me will say, this is nothing, just wait!) Whether it is through visible signs/symptoms of getting older or the world changing around us – we have moments where we are confronted with the finitude of our own lives.
This can be both overwhelming and liberating. To read more about acknowledging your mortality, read:
Ongoing Decline
The dynamic of anticipatory grief is pronounced when you or your loved one is suffering from any sort of functional loss over time. Families of patients with dementia refer to “the loss before the loss” meaning the gradual changes in personality, memory and abilities that their loved one goes through over the course of years. Sometimes that anticipatory grief is harder than the eventual death itself.
Climate Change
Another universal anticipatory grief that we are all experiencing is the destruction of our planet. Our grief is manifesting in different ways. Some of us are in complete denial with our heads in the sand. Some of us have thrown up our hands in resignation. Others are trying to focus on what limited things we can control in our tiny spheres. Others are sounding the alarm and calling for greater action. Whether you feel propelled to act or advocate or hide and deny – all of those are grief responses. You may have seen this article recently which speaks about chaplains helping people with eco-grief.
Whether anticipatory grief feels like a heavy burden or offers a quiet blessing depends on how we approach it. To engage in the blessing, it may help to think about the following:
If we are able to be more present in the moment, it can lead us toward gratitude.
We can honor the pain while also seeking out the joy.
We have the opportunity of creating meaningful moments.
It is a complex balance of multiple emotions all at once.
We must care for ourselves in the midst of our grief.
Anticipatory grief is an unavoidable, complex response to love, loss and the passage of time. And we are all going through it right now, together.
A Blessing for Anticipatory Grief
Hold me tenderly in this fragile moment,
Suspended between the already and the not yet.
Let me sink into the weight of today,
And rest, despite the mystery of tomorrow.
Ground me in the truth that control is not mine.
Teach me to breathe deeply, to feel fully,
And to trust that I am never truly alone—
Even in this vast, unknowing inevitability.
Six years ago, my husband of fifty one years died after fifteen years of muscle deterioration. We knew what it was and how it would end for eleven of those fifteen years. We built our lives around keeping him active and talking often about how we felt about where we were in the process of letting go. We both worked a portion of that time, lived among the people we loved and took care of each other. Communication each day was primary. We worked through many issues.
I never thought of the phrase anticipatory grief, but it describes my experience (our experience). Yes, it made it less stressful to accept the finality of life ending and there is gratitude in my heart for that.
I had anticipatory grief with both parents. I found it to be a time of richness and meaningfulness as we spoke about so many things. And those moments then carried me at and after their deaths. Still miss them…