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The Paradox of Anticipatory Grief

August 31, 2022 Sara K Schneider

It’s an impossible ask. How do you both love someone and grieve them while they’re still here, either physically or mentally (or both)?

This is the paradox of anticipatory grief, what you feel when:

  • You know your child is going to die at some point of the illness with which she was born, but somehow she manages to hang on. You don’t know why you can’t protect her from what the treatments, as well as the disease, are doing to her or how you’ll manage when she’s gone.
  • Your stepfather who adopted and loved you is losing the mental sharpness he always drew on to put you in the wrong during arguments. You’d rather have the him you remember than the softened personality that early dementia has given him.
  • You miss your career in financial services but you couldn’t hand the woman who raised you to a stranger’s care, especially when the cancer has advanced and weakened her. Yet you can’t help missing the variety and social contact of the life you were living before and wonder if you’ll be able to pick up where you left off. At night sometimes, even though you want your old life back, you know it will be entirely different without your mother to check in with at the end of a long day.
  • You live far away from your best buddy, who now has a life-limiting disease. Though you fly out as often as pandemic conditions make seem reasonable, you recognize, accurately, that every time you fly out again after these meaningful weekends together could be your last opportunity to see him. And that it’s unlikely you’ll make that trip together to Alaska now.

 

If Anticipatory Grief is Real, Why Haven’t I Heard About It Before?

 

Even most hospices haven’t come to terms with what it means to serve family members experiencing anticipatory grief.

  • For one, this kind of grief is messy! It deals with living relationships (ack!)
  • It’s not a great fit with the way hospice psychosocial staffs are organized in before-death and after-death teams. Dealing with it effectively requires additional staff resources and allocations to an already-stretched budget.
  • And it can take hold in all kinds of situations besides the relatively immediate end of life—from dementia care to cancer treatments to borrowed time with a child who was predicted to die two years ago.

Yet public awareness of anticipatory grief is growing, and it appears to me to be coming from the growing national focus on family caregivers and the need to address the overwhelm they experience.

I predict you’ll only hear more about it, as our population ages, with generations of fewer caregivers adopting a greater share of the burden of care for their elders, and as we live longer with diseases that in the past might have killed us.

The Sweetness of Now

It wasn’t long ago that I was thinking about my own aging and mortality and felt a rush of anxiety.

“Not enough time left! Too much still to get done.”

And then it came to me with the surprising power of one of those realizations that may even have come before: No amount of time you’ve been granted on Earth is enough, if you’re not using each day you have to live. In effect, you will have already lost — now —the life you were so afraid of losing at some point in the future.

It is the same in loving someone you are already losing. (As beings who die, we are always already losing each other and yet are called to love anyway.) Though you are losing them now, you must love them now.

And the best thing to do, perhaps, is to live the relationship, both as it is, and with the sweetness of its long depth, now, as fully as possible.

 

The Celebration of Relationship: 100 Days with Tata

As a portrayal of a beautiful celebration of love in the midst of grief, I want to recommend to you the film 100 Days with Tata, a beautiful treatment of the relationship between actor-singer Miguel Ángel Muñoz and Luisa Cantero, the 95-year-old great-great-aunt who helped raised him. During the pandemic, Muñoz moves in to take care of her and becomes more aware of her declining mental as well as physical function, as well as of the debilitating effects of caregiving in general, much less during a pandemic in a tiny apartment. It’s in Spanish (with English subtitles) on Netflix.

The film has been called a love letter to the woman he called Tata and to the shared zaniness, expressiveness, and affection of their lifelong relationship. Muñoz celebrates Tata as the most important person in his life, even making a daily Instagram show with her to give encouragement to others during the pandemic while keeping her as mentally bright and playful as possible. Privately for the camera, he shares his grief, restlessness, frustration, and fear that are not in conflict with — but simply beside — everything he has with his Tata.

Where the Conversation is Going

Though it has been used in many other contexts since then, THE HUMAN JOURNEY was developed as a response to families’ needs when they know loss is on its way.
 
It’s not unusual in these situations for each member to dissolve into their own grief and pain, making care, medical decision-making, and mutual support more difficult.
 
Very gently, THJ opens each person to expressing what is important to them, flexibly adopting each other’s perspectives, and finding meaning in their challenging circumstances.

We are changing the conversation around anticipatory grief. 
 
Join us for one of our upcoming trainings to do a world of good.

Looking forward to supporting you in your embrace of others!

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