When you're grieving someone who's still here
For years, a friend who is a licensed therapist kept telling me to read Ambiguous Loss by Pauline Boss. He'd listened to me describe what I was living through with my mother, the sadness that pervaded, the way I couldn't seem to say yes to anything, living in the in-between since the pandemic hit in 2020. There's a name for this, he said, read the book. I procured my copy, which wasn't widely available, I might add, and now I'm finally reading it.
My mother is still alive and aging in place, in the home she's been living in since the late 1980s. This has always been her wish, to live out her years here. I'm a mere twenty feet away in a house separated by another house. I'm in and out to do various errands, but I don't often sit and just exist with her. I don't ask the questions I want to ask before she dies, because the asking feels like acknowledging the inevitable truth — that she won't be here forever and will be gone, these days, sooner rather than later.
The woman who used to pick up my son from school, who spent the day doing various chores like grocery shopping or keeping the sidewalk clean, that person is gone. Ever since her knees gave out and limited her mobility and a pandemic forced her inside. I've been grieving her ever since, while she too is grieving the loss of independence, the mounting losses of friends and relatives she has managed to outlive.
Grieving when someone is gone is hard enough. People give you space for it, but it still feels like the world is moving on while you're sitting still, ruminating with sadness and regret. But the pre-grieving is even harder because somehow you're not supposed to be grieving at all.
If you're caring for a parent or spouse who is still physically present but no longer who they were, you may be experiencing something similar. Understanding what's happening won't make the grief go away, but it can make you feel less alone in it.
You've probably heard of anticipatory grief
Anticipatory grief is the experience of mourning before a death actually occurs, the grief that begins when someone you love receives a terminal diagnosis or enters a decline you know will end in their death. You're grieving what you're anticipating.
Anticipatory grief is real and common for caregivers. Research suggests that somewhere between 47% and 80% of dementia caregivers experience it. The grief can begin once the loved one is diagnosed. You'll ask, What will my life be like without this person? What will happen to them? What will happen to me? But anticipatory grief doesn't fully capture what many caregivers are living through because you're not just grieving what's coming, you're grieving what you've already lost, what's already gone.
Ambiguous loss may be the more precise term
Pauline Boss, a family therapist and researcher, coined the term "ambiguous loss" in the 1970s to describe a kind of grief that has no resolution. She identified two types.
The first is physical absence with psychological presence. This is the grief of families whose loved ones are missing, soldiers who never came home, people lost to disasters or abductions. The person is gone, but there's no body, so there's no confirmation or closure. The family holds them present in their minds while living with their physical absence.
The second type is psychological absence with physical presence. The person is here, but the person you knew is gone. Their memory, their personality, their ability to connect with you the way they once did. They are both here and not here at the same time.
Boss developed this framework partly through her work with families affected by dementia, and it describes the experience with painful accuracy. You are caring for someone who is physically present but psychologically absent. You feel alone because in many ways you are. For many caregivers, it's as if there's a stranger in the house.
What makes this grief different
Grief after a death, as devastating as it is, is concrete, tangible. There is a loss and markers of that loss, like a funeral that marks the transition to the afterlife. The rituals make the loss legible to the world around you.
Ambiguous loss has no clear beginning and no end. It's ongoing and progressive, evolving over months or years as the person you love continues to change. Each new decline in capacity, each shift in personality, can feel like a small death. You grieve, and then you grieve again, and the person is still there, still needing care, and the grief doesn't resolve because the loss keeps happening.
This is also what researchers call disenfranchised grief, losses that aren't socially recognized. Because your loved one is still alive, others may not understand why you're grieving. You may not fully understand it yourself. You might feel guilty for mourning someone who's sitting across from you at the dinner table. You might end up chastising yourself as if something is wrong with you for feeling this way.
Nothing is wrong with you. This chronic sense of grief is a normal response to an ambiguous loss.
The suspended animation
What I wasn't prepared for, and what I don't see discussed much, is how ambiguous loss affects your ability to live your own life.
A friend in London asks when I'm going to visit. Friends leave a placeholder for me in some far-flung summer vacation plans. I look at job boards and wonder how I could ever return to a high-paced work culture. I get invited to things, opportunities arrive, and I find myself saying no to almost everything. Many have stopped asking because they know the pre-filled answer is no. I can't seem to plan for a future when the present won't resolve.
How do you book a flight when you don't know what will happen next week? How do you commit to a new job when your availability is hostage to a situation you can't predict? The timeline is unknowable, so every decision that requires projecting yourself into the future feels impossible to make. You end up frozen, living in a kind of suspended animation, waiting for something to change while also dreading the change when it comes.
This is the living state I can best describe: a sad haze sits like a layer of film on every experience and colors my day. And underneath it, the fear that when the layer of haze lifts, when the anticipation of grief turns into grief itself, I won't remember how to live any other way.
What closure actually means and doesn't
One of the most useful things I took from Boss's work is her insistence that closure is not the goal. She wrote a follow-up during the pandemic called The Myth of Closure, where she points out that the pressure to find closure after a loss is often counterproductive, and that for ambiguous losses, closure may not be possible at all.
I think this is an important point. The idea that grief is something to get through and get over with. I am susceptible to this feeling, trained as I am to knock things off my to-do list with expediency. Boss reframes this entirely. The goal is not to resolve the ambiguity but to learn to live with it, to build what she calls resilience in the face of ongoing uncertainty.
She offers guidelines for doing this. Finding meaning. Adjusting your expectations. Discovering new hope. Revising your sense of who's in your family and what roles people play. None of this is easy, and she doesn't pretend it is. But the framework itself is a kind of permission. You don't have to fix this. You don't have to feel better. You just have to find a way to keep going. In 2022 she sat down with the American Psychological Association to discuss this book; it's a helpful summary I recommend.
Sitting with it
Naming the experience helps. Understanding that what you're feeling has been studied, written about, and shared by millions of other caregivers doesn't make the grief smaller, but it makes you feel less alone in it. You're not losing your mind and you're not weak. You're responding normally to a difficult situation.
Support groups help, if you can find one that fits. I have been attending one since winter and have found it unexpectedly helpful to be in a room with other people who understand what it's like to grieve someone who's still alive. It's different from talking to friends who care about you but don't quite get it. Caregiver support groups exist specifically for this, and many are free. Mine is offered by the local YMCA.
Letting go of the idea that you should be over this by now helps, because there is no timeline. The loss is ongoing. The grief is ongoing. That's not a failure; that's just what this is.
And maybe most importantly: the guilt is a liar. If you feel sadness, if you feel anger, if you sometimes wish it would just be over, that doesn't mean you love the person less. It means you're human and you're tired and this is hard. Those feelings can coexist with loving your person.
Frequently asked questions
What's the difference between anticipatory grief and ambiguous loss?
Anticipatory grief is mourning a death that hasn't happened yet. Ambiguous loss is mourning a loss that has no clear resolution, often because the person is still physically present but psychologically changed. For dementia caregivers, both are usually happening at the same time.
Is it normal to grieve someone who's still alive?
Yes. Research suggests that 47% to 80% of dementia caregivers experience pre-death grief. This is a normal response to the losses you're experiencing, not a sign that something is wrong with you.
How do I explain this to people who don't understand?
You might say: "I'm losing them in pieces, not all at once. Each change is a loss I have to grieve, and there's no end point. It's exhausting in a way that's hard to explain unless you've been through it."
Should I see a therapist?
If you have access to one, it can help, especially a therapist familiar with caregiver grief or ambiguous loss. But therapy isn't the only path. Support groups, reading, and simply naming what you're going through can also make a difference.
Will I feel better after they're gone?
Grief after death is different from grief during caregiving, but it's not necessarily easier. Some caregivers experience relief; some experience a new wave of grief; many experience both. There's no single answer, and whatever you feel will be valid.
Resources
Pauline Boss's work on ambiguous loss
- ambiguousloss.com — Dr. Boss's website with resources and information
- Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief (Jossey-Bass, 2011)
- The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change (W.W. Norton, 2022)
Meaning & Hope Institute A nonprofit that offers Dr. Boss's Finding Meaning and Hope discussion series for dementia caregivers, a free 10-week peer-led program.
Caregiver Action Network Resources and support for family caregivers across all conditions and situations.
The Caregiving Years Training Academy Founded by Denise Brown, who has been supporting family caregivers since 1990 and was one of the earliest pioneers in the field. Her work includes training programs, books, and a weekly Substack on the caregiving experience.
Caregiver support groups Many hospitals, Area Agencies on Aging, and disease-specific organizations (like the Alzheimer's Association) offer free caregiver support groups, both in person and online. Your local Department of Aging can help you find one.
Caring in the Middle helps sandwich generation caregivers figure out what they're dealing with and what to do next. If this article was useful to you, take our 5-question quiz to get personalized recommendations for your situation.