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 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.
From Mom’s 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 Mom felt he was in no apparent hurry at all. I asked about this because Mom and I have had many conversations about her growing invisibility as she ages, and to a lesser degree, mine. Where it has never happened is with her Mexican housekeeper, her Salvadorean gardener or her Cambodian nail care specialist. This cultural discrepancy is invisible until you cross the line. What is the line? It varies, but by Mom’s age, many people are talking down to you, talking around you, or looking right through you. I was so thankful that this doctor, whatever his heritage, took the time to see Mom and make her feel seen.
A sense of invisibility, of being a faceless piece being moved around the medical board, will always cause Mom to resist. For years, she “fired” primary care doctors who said these words, “Well, Barbara, at your age…” I share -- I think most of us share -- the need to feel that I am still the author of my story.
Here are a few chapter previews in the story Mom has authored to date, a few versions of Mom that add up to who she is -- so far.
*Little Bobbie Roberts who slammed it over the fence before they knew to question girls in Little League…
*Barb Mauk who attended the very first Plenary Session of the United Nations by special invitation of the United Press Corps and never brings it up…
*Barbara Mauk who stood by the minister’s side to confront church matrons protesting an exchange with the Black church in Marin City...
*Barb Mauk who built a successful court reporting business, wrote a book and volunteered for over twenty year at Guide Dogs for the Blind, hiked to Lake Aloha in Desolation Wilderness in her 60s and traveled the world, even though Dad was done with travel on May 8, 1945 when Germany surrendered unconditionally.
*My mother, who, in her early nineties, joined other neighbors to fight to get Aleno back to his wife and infant daughter. Aleno, a South American refugee, kneels by my mom’s chair, holds her hand and strokes her hair back from her face every time before he starts to prune her trees, mow her lawn and water her flowers.
And of course, there dozens more chapters and versions of Mom, too numerous to list and undoubtedly many unknown to me.
Bobbie, Barbara, Barb, my mother -- they’re all still in there, The shell is deteriorating, but the substance is intact and still cumulative.
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 --someone who is also 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 first one slows down and regains some ground, and then the slide gets steeper and it’s almost like freefall.
I’m sure I’m not the only family member who has struggled for acceptance, thinking as I have so many times, “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 BOUNCE-BACK 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?”
Jeff: “You WILL recover from the pneumonia. You’ll feel better than you do right now, but your lungs won’t stop getting weaker.”
Mom: “That’s what I’m afraid of -- not being able to breathe.”
Jeff: “That’s why I’m here. I’m not going to let that happen.”
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 can bring me to tears these days-- 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 showing solidarity with other mothers?
*Support flooding in from friends and family causes me to spill over at times. Navigating this together, we sometimes lean in weariness but there’s someone right there to catch us before we fall.
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 an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of 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 symptoms 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.
Often but not always, it’s a girl child who is the culturally designated caregiver for aging parents. Once again, I never forget how fortunate I am that both my brothers, their wives, and my sweet husband, commit just as much, and often more, time, energy and emotion to helping Mom make what they call her “transition.” Add four grandsons and three granddaughters, three magical great grandkids, and all Mom’s “adopted children” -- Brian, an old flame of mine, Bonita who cleans for Mom, Aleno, the pool guy whose name escapes me -- all adopted by Mom --not to mention Mom’s sister/friends who are still active in the world - Sally, Patty, Karla, Martha and Peggy. When I ask Mom, “What are you grateful for today?” as I often do, she says, “Oh, I’m so grateful that I’m surrounding by people I love, who love me.” She is painfully aware this has not been true for most of her friends.
Although my brothers, sisters-in-law and my husband Lee share the load of relieving Mom’s caregiver Ana on weekends, we each experience the overwhelming exhaustion that comes with just two to five days a month of caring for Mom. It makes me wonder how Ana gives such attentive and compassionate care for five or six days running, often without a break. Our excellent guide in this journey, Ana explains we’re so tired because our emotions are on hyper-alert. She explains that although she loves Mom too, she doesn’t feel the same losses, both current and anticipatory.
It’s far from what I’d call mastery, but in recent years I have gotten quite good at silencing fretful thoughts in the middle of the night. But lately I’ve relapsed and my squirrelly wee-hours brain has been working overtime, seriously compromising my sleep quotient, not to mention contributing to the clenched muscles in my neck and shoulders. This, too, is characteristic of anticipatory grief. And minimal sleep has led inevitably to forgetfulness, distractibility and emotions way closer to the surface than I usually let them get. Keeping a tight rein on emotions is unequivocally one way I’m my mother’s daughter.
This is probably why I fear Mom’s fear at the end. Her grip on those emotional reins may loosen, allowing panic to take over. I know that hospice has a strategy for that, and some might say being in touch with one’s feelings is a good thing, but I fear it anyway. Mom remembers that her twin sister Kay struggled at the end, and I know she’s haunted by that. When we were all standing around Dad’s final bed at the hospital, and the doctor was recommending unhooking him from life support and letting him go, I intuited that Mom’s hesitation had to do with just that; she couldn’t face watching him desperately gasp for a last breath. I asked what to expect, the doctor reassured Mom, and Dad passed peacefully without another breath, without another heartbeat.
Mom always said she wanted to go “with her boots on,” suddenly and unexpectedly while living life to the fullest, optimally on a hike somewhere up high where she could see far. It hasn’t turned out that way, but I see now that she still has reasons to be here. She’s pushing through to her best end in her own way.
Back story: Mom has been unfailingly dedicated to those she loves, but most of her life she has also been unapologetically controlling and judgemental. There have been multiple women pass through my life who remind me of Mom. I call them “women with sharp corners.” I love and admire many of these women, but I’m careful to keep my boundaries in place around them.
Growing up and all the way into middle age, I was painfully aware of what I didn’t get from Mom. Approval, encouragement, hugs… When I was about 40, I had given up on ever winning Mom’s approval. We hadn’t spoken for months when I sat down one day and told her I needed to hear that she loves me even if she doesn’t approve of my choices. She replied, “I can’t do that” This was not because she didn’t in fact love me, but because her cultural blueprint is non-demonstrative, and because she needed to control more than comfort. For her, proclaiming her love translated as endorsement of my choices in life.
Mom’s transformation to a much more loving and tolerant woman was not quick, but our relationship healed suddenly and somewhat miraculously. One day I woke up and realized that with unconditional love, someone has to go first. I started telling Mom I loved her, and began washing the dog, pulling her garbage can out, moving the couch AGAIN, calling her now and then… NOT because I was trying to finally win her approval, but just because I love her. Everything changed that day. I have no illusions that I get the credit for this epiphany. It was too sudden and too clear for me to be the source. Wherever it came from, it feels to me that this was also when Mom began to change. Mom hugged when prompted. Mom expressed love and gratitude without being prompted. Mom praised more and criticized less.
Mom’s metamorphosis into a gentler, kinder person didn’t happen all at once. Long after all friction was gone from our mother-child relationship, I frequently “rescripted” her when I heard her bark something like “Move the couch over there. No! Turn it a little more this way!” Without emotion, I would say, “What you mean, Mom, is ‘I’d be so grateful if you would move the coach over there for me -- if your back is feeling okay…. THANK you!’” Or, she’ll be critical of a friend or family member, and I remind her -- “But you love (whomever)” and she would relent and respond, “Yes, I do.”
These rescripting moments - which I also used with my adolescent children - are extremely rare now. It’s like Mom’s having a final growth spurt on the inside even as her outer self shrinks and weakens.
About five years ago my wise husband encouraged me to initiate a regular schedule with Mom. Mom was first starting to fail but she could still enjoy a ride in the car. I began scooping her up for “explores” every Tuesday. Her friends started saying, “It’s Tuesday; must be Suz’ Day.” For a year or two before she was too weak to go, we headed out to the ocean or to the top of Mt. Tam or navigated obscure back roads in Forest Knolls or Napa. We appreciated every vista and talked about every topic. We worked on a list of life lessons Mom wants to share with all her progeny. It’s been an honor to witness what it looks like to reach and expand into the nineth decade of life.
Even before she began to mellow, I began to compile a list of what invaluable assets I have received from my mother. A sense of thrift and order. Always being on time. A commitment to exercise. Foremost among the attributes I credit to Mom is backbone. Like Mom, I’ve always trusted I could do hard things. A few examples: She started a business from scratch. So did I. She traveled extensively. To a slightly lesser degree, so did I. I remember the day she decided to move a bag of cement at 80 something years of age! I relocated an entire wine cellar of 500 plus cases at age 50 something -- a dozen cement steps involved. It’s not always good for the back to have Mom -- or Dad’s -- work ethic. My brothers can confirm this! Still, taking satisfaction in doing difficult and adventuresome things is also evident in the generation following ours, and I believe this will be an invaluable familial trait that will persist through the generations.
Mom has always supported causes she believes in, not just with money but with her presence and her voice. She certainly deserves credit for the sense of purpose and love of accomplishment that drives me, and I see this in my brothers too, but in them it’s tempered with more of Dad’s gentleness than I internalized.
Mom’s family has always been her primary cause. Her love of travel and her passion for her business never outranked us. We always knew she’d drop anything for us. She still would if she could. Dedication to family -- rack another legacy up for Mom.
I never miss a chance to tell Mom that it’s impressive and inspiring to see her expanding and growing at 96 years old. Even with the accelerating loss of control, her attitude and the quality of her relationships are still hers to enhance. I applaud it everytime I witness how she can now offer love without conditions and say thank you without reminders.
Does experiencing anticipatory grief mean that one won’t grieve after the loved one dies? The experts say there are no rules with grieving. My husband, Lee, said that he had said been saying goodbye to his much-loved mom who suffered from Alzheimer’s for so long that when she had a stroke and died, she’d been silent for so long that he didn’t have much grieving left to do, and he returned to work the very next day. My daughter Mayme tells me she was a little surprised when she burst into uncontrollable sobs when her paternal grandmother died, even though for many months her Baci had recognized her only as “the nice girl who cuts my hair”.
We’re all navigating a very long good-bye with Mom. The difference is that although Mom has moments of confusion, she’s still growing, she’s still giving, she’s still celebrating her family, she’s still spending time with her friends, she’s still cheering on her favorite team. I believe that few of us will be finished grieving when Mom’s end comes. Mom has always been and still is the anchor keeping our family from drifting too far apart. Sometimes -- many times the pull has felt like constraint. Still, after she departs, I know I’ll feel adrift in the world for awhile. In her decline, Mom has brought us all much closer. New patterns will emerge in the family tapestry when she’s gone, but now I know with certainty that it won’t unravel.
Writing this I’m realizing that we are all living one of Mom’s most powerful legacies right now. Mom saw her twin sister and Dad out of this world, putting in multiple years of care and anticipatory grief. She grieves still.
And now it’s our turn.
Susan is a published writer and motivational speaker with 30 years of experience, dedicated to guiding people to a life of financial invincibility and peace of mind.