Anticipatory Grief: A Very Long Goodbye

Written about a year before my mother passed at 97 years old.  Her last book, Things I Know to be True, has since been self-published by her family.
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A Very Long Goodbye

Anticipatory grief is a new concept for me, though it’s been around for a long time.  There’s a page dedicated to anticipatory grief in Mom’s Hospice binder. The binder sits on the kitchen table along with inhalers, medications, Ana’s notes about Mom’s care, and a calendar recording who’s relieving who and when.  When I was growing up, nothing was allowed to rest long on that table except African violets and a pretty tablecloth in one shade of blue or another.  Mom’s DNR is posted on the refrigerator next to photos of her grand and great-grandchildren —to ensure that emergency personnel know what to do and what not to do.

When Mom’s primary doctor first proposed that it might be time for hospice, without questions or hesitation, she said “No.”  When her doctor asked again, she answered firmly, “I don’t feel like I’m dying.”  The subject was broached yet again because that’s what happens when a patient requires frequent trips to the emergency room due to falls or difficulty breathing.

I believe it was the fourth time that she accepted.  She was seeing a respiratory specialist. This doctor suggested it — not as an exit-from-life plan, but as a strategy for having the emergency room come to her– cutting out the arduous ride to the hospital and the 6-10 hour wait time until release or admission to the hospital.

When the previous doctor pointed out this advantage, Mom responded, “Oh, I don’t mind going to the ER.”  Funny thing about Mom, she sometimes tells the most absurd and obvious of lies.   We who call her on it are frequently and openly amused.  She’s fun to tease.  Love to see her smirk and look to the side.  It’s a sure sign that she’s still in there.

I picture all the chapters of her life building to this one last chapter.

And of course, there are dozens of more chapters, too numerous to list.

Bobbie, Barbara, Barb, my mother — they’re all still in there,  The shell is deteriorating, but the substance is intact.

From her description of the pivotal conversation about hospice, I can see that what really convinced her wasn’t avoiding the revolving door to the emergency room, it was that THIS doctor looked her right in the eye, made her feel heard and valued, and was in no apparent hurry at all.  A sense of invisibility, of being a faceless piece being moved around the medical board, will always cause Mom to resist.  I share — I think most of us share — the need to feel that I am still the author of my story.

This brings us back to anticipatory grief.

The meaning is obvious.  It’s the process of grieving the loss of someone who is still physically and sometimes — as in Mom’s case — still mentally present, but for whom the days are literally numbered.

That number may be hours or days, months, or even years, but the illusion that death is far, far off (which we all entertain as long as we can) — that illusion is gone.  Some life process is deteriorating, some condition is progressing towards an inevitable end, and no matter how pharmaceutically effective we are at slowing the slide towards the final breath, it’s coming.

When someone we love is on the slide, it can be breathtakingly fast or agonizing slow and painful.  There are often twists and turns in the slide, where the first one slows down and regains some ground, and then the slide gets steeper and it’s almost like a freefall.

I’m sure I’m not the only family member who has thought many times, as I have, “Okay, she probably won’t come back from THIS”? Mom has literally fallen on her face, fractured ribs, broken hips, suffered various SLOW healing wounds, gotten pneumonia, undergone gallbladder surgery – all in the past few years.  She has justly earned the nickname THE AMAZING REBOUNDING WOMAN.

When Mom finally consented to meet her hospice nurse, Jeff, she loved him at first sight.  Mom’s always been a direct woman but there’s growing evidence that this character trait is on the ascent.  She looked him in the eye and asked, “So I’m not going to get better?”

My heart weeps for this painfully honest and therefore incredibly respectful conversation.

I read about the symptoms of anticipatory grief. These include loss of sleep, fatigue, forgetfulness, anger, sadness, even isolation, and depression in some cases.  I would add sudden weepiness with two distinct triggers:

*A memory — like the time I called Mom about visiting her on Mother’s Day only to learn she was marching in San Francisco that day with M. A. D. D.(Mothers Against Drunk Drivers).  What better way to celebrate Mother’s Day than solidarity with other mothers!

*Support flooding in from friends and family. Navigating this together, we sometimes lean in weariness but there’s someone right there to catch us before we fall.  I’m still awed by the solidarity.

It sounds like anticipatory grief has a whole lot in common with post-death grief, right?

Oh, but there’s more!

Quoting from a website called WYG (What’s Your Grief?):

We are aware of the looming death and accepting it will come, which can bring overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of a person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity, and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When I think of Mom, whose cognition is still mostly intact, one major loss is the dimming down of her usually spunky – even contentious — personality. Now when she lets out a command or a correction, we’re all somehow relieved rather than annoyed or offended.

Another loss is that she’s so tethered — to her walker, to her reclining chair, to her oxygen and her inhalers.  Her long hikes in the Sierras, her lifelong explorations to exotic destinations all over the globe are irrefutably over.  She always said she needed something to look forward to, some trip to anticipate. She still asks Ana when she’s going to take her to Fiji, but I believe she’s just entertaining the fantasy.

I suppose it could be argued that she’s about to embark on the ultimate adventure, but let’s face it, there will be no slide show and no postcards, and her life is peppered with uncertainty, not anticipation.

There are symptoms of anticipatory grief that I’m not suffering.  I don’t feel anger or depression.  It’s clear though that this rollercoaster makes it harder to relax into the present and feel untethered joy right now.  Harder for Mom, too.  She, too, is grieving the losses.  She wants to jump up from her chair and make pancakes and sausages for us, swim a few laps, and move the couch herself!  She wants to plan a trip, go out to lunch without oxygen, go to the bathroom without an escort, take a really deep breath.  She rarely gets depressed, but she does get angry sometimes.  She’s always found limitations maddening.