Rebecca St. John: Between duty and daughterhood: Anticipatory grief in parent care

Caring for a parent isn’t just a responsibility. It’s a role reversal that rewrites everything you understand about family, strength and yourself.

I believed I’d step into that role without hesitation or doubt. Of course I could do it. After all, they had carried me through the chaos of childhood — the terrible twos, the dramatic threes and that unforgettable trip to the ER after I tumbled off the swing set. We came home hours later to cold meatloaf and a melted Jell-O mold sliding across the table, but they handled it all with patience and care. Back then, they were the steady ones. I never considered what it would feel like when it was my turn to hold everything together.

In 2015, I began to understand just how difficult and consuming this role would become. My mom underwent a positron emission tomography scan and memory and cognitive tests. I spent long stretches alone in waiting rooms, trying to stay composed while she completed the evaluations. Even then, I remember being torn. The lawyer in me wanted clarity, facts and certainty about what was happening. The daughter in me was already bracing for an answer I didn’t want to hear. When she finally returned, she looked tired beyond physical exhaustion as if something essential had shifted out of reach. Her doctor confirmed what I feared: My mom had Alzheimer’s. She understood. I pulled her close and said, “We can do this. It will be OK.” The words came instinctively, but even as I said them, the lawyer in me noticed how imprecise they were, how they reached for comfort instead of certainty. It felt like the first time I’d ever spoken to my mom without fully knowing how to hold both truth and protection at once.

What struck me most in that moment was its permanence for me and its impermanence for her. It was a memory that would stay with me but was destined to slip away from her. The irony is impossible to ignore. That moment marked the beginning of my journey as a caregiver, one shaped by grief I didn’t have a name for. It was quiet, persistent sorrow that lived alongside day-to-day responsibilities, growing even as my mom was still with me.

I wouldn’t learn the term “anticipatory grief” until seven years after her death, when I studied under grieving expert David Kessler. By then, I understood that what I’d carried all along was the grief of losing someone in slow motion, mourning each small goodbye long before the final one arrived. Kessler teaches that when someone you love is dying, your heart doesn’t wait to break. And if you’re a caregiver, that grief often stays hidden, quietly unfolding behind the scenes as you continue to show up, hold everything together and care for others — even while your inner world is shifting in ways few people ever see.

After her diagnosis, my mom moved in with my husband and me. It was an adjustment for all of us. In truth, it was hardest for her. Our home, our routines, the small, familiar rhythms of daily life were suddenly different. What I didn’t understand yet was how disorienting the role reversal would be. I’d always gone to my mom for advice. But after her diagnosis, I kept reaching for that same comfort and finding it gone. There were moments I would instinctively turn to her for guidance, only to remember she could no longer give it. I was caring for her, but I was also grieving the loss of the person I used to lean on most.

One of my worries was Bella, our 65-pound redbone coonhound. Growing up, my mom never allowed us to have a dog. She’d never had one as an adult. Before her symptoms began, she kept a polite distance from Bella, despite Bella’s gentle nature and unwavering determination to befriend every person who walked through our door.

But when my mom moved in, something changed. It was as if Bella instinctively understood that my mom needed her. She stayed close, becoming a steady, comforting presence at her side. And just as naturally, my mom leaned into that companionship, placing a soft hand on Bella’s head. In Bella, she found a quiet reassurance. Watching them together, I saw connections I never could have anticipated but that brought me real joy.

My mom and I settled into a nightly routine of going for a walk and talking about whatever was on her mind. Often, she wanted to hear about my day, holding onto ordinary threads of conversation that still felt familiar. We planted a flower garden together, too. But one season, the morning after we had carefully set everything in place, I found the beds empty, every flower pulled from the ground. When I gently asked if she changed her mind about where we planted them, she looked at me with confusion and said there hadn’t been any flowers there. In that moment, I chose to step into her reality instead of pulling her into mine. I nodded, let it be and carried on. Later, alone, I cried — not just for her loss, but for mine. It felt like grieving a shared memory that already slipped away for her and was beginning to fade for me.

One of the hardest conversations I had with my mom after her diagnosis came when she asked me, almost desperately, not to let her die in a nursing home. I remember wanting to take that fear away. But I also remember the immediate tension in me, the way my training as a lawyer wouldn’t let me settle for words that were anything less than true, even when truth felt fragile. So, I chose my words carefully. I said, “I will do everything I can to keep you here with me for as long as possible.” It was honest, but it also reflected what I could and couldn’t promise. Even now, I replay that moment reflecting on what I said and what I left unsaid.

Later, when her symptoms made it unsafe for her to stay with us, I moved her into a nearby memory care unit. The lawyer in me understood it as a necessary decision grounded in safety and duty. The daughter in me experienced it differently. I hadn’t promised her she’d never go to a place like that, but I knew what she’d heard in my voice, what she’d taken to heart. I kept her safe, but I also had to live with the space between what I could ethically promise, what I could practically do and what she believed I meant.

The day came when the care facility called to tell me that we should come because they expected she would pass away that day. My sister and I went. My mom remained with us through the day and into the night, silent but present. We took turns sitting with her, sharing her twin bed at times so she was never alone. She stabilized, although she was entirely non-verbal and still, so we eventually went home to rest. Later, I returned, and as I arrived in the parking lot the nurse’s station called to tell me she had died. I have held onto the belief that she waited until we weren’t there to witness her final moment, that she chose a quiet exit on her own terms. The lawyer in me knows what can and cannot be proven. The daughter in me reaches for something gentler to live with.

For a long time, I didn’t have language for what I was experiencing. I only knew the constant weight of it, the exhaustion of holding someone I loved while slowly losing them in pieces. If you’re living in that space now, as a caregiver or if you are feeling the strain of anticipatory grief, you don’t have to name it perfectly to deserve support. There are resources available that can help you find your footing.

For lawyers and judges, the Judges and Lawyers Assistance Program offers confidential support. Contact JLAP at [email protected] or at 317-833-0370 for assistance. For anyone navigating grief in any form, David Kessler’s grief resources at grief.com can be a place to begin.•

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St. John is an Indiana lawyer and clinical case manager for JLAP.