On Dementia, Witness, and the Grief No One Names
by Robert Drake
There is a particular kind of grief that has no funeral.
No casseroles arrive. No one sends flowers. The person you are grieving is still alive — still breathing, still present in the room, sometimes still laughing at something only they can see. Sometimes crying for no apparent reason. Their hands are the same hands you have held for decades. Their face, in dim light, is still the face you have loved for decades.
But the witness you have loved and lived with for so long is gone.
— — —
In an earlier essay I wrote about what we lose when someone we love dies — that beyond the person themselves, we lose the witness they carried — a validating and authenticating partner in key memories. The one who remembered us young, who held the chapters of our life that no one else inhabited, who could say: “yes, that happened, I was there, I remember you then.” When that person dies, those chapters lose their only other custodian.
Dementia does something more disorienting still.
It takes the witness while leaving the body behind, still breathing.
— — —
I have sat with many families navigating dementia — in hospice, in palliative care, with friends, in the long middle years before hospice becomes relevant. What I observe, consistently, is a grief that is real, constant, and almost completely unsanctioned.
The person is still alive, so your grief is premature, right? So we feel that our grief should be managed, reframed, redirected toward gratitude for the time remaining. The caregiver who breaks down is gently reminded that their loved one is still here.
But that is precisely the problem. They are here. And the witness is not.
The spouse of fifty years sits across the table from someone who no longer remembers their wedding. The adult child visits a parent who no longer knows their name. I visit an old friend in the memory care unit and walk endless hallways, turning around at each barrier and just trying to be of some company — a reminder of what he surely must remember… right? The sibling speaks to someone who once shared their childhood bedroom and now inhabits a present moment with no past attached to it. The shared history — the decades of ordinary days that constituted a life together, that constituted your life as witnessed by this person — is gone from their side of the relationship.
You remember everything. They remember nothing, or fragments, triggered by a song, or a version of the past that no longer includes you in the way you actually existed together.
You are carrying the shared life alone. And they are sitting right there. Just sitting.
— — —
This is what I mean by the continuous presence of absence. It is not the clean break of death, which at least grants us permission to mourn. It is something relentless and without resolution — a grief that must be lived inside the ongoing relationship, a loss that cannot be named as loss because the person has not yet gone. Naming it as loss just doesn’t seem fair. But this is not fair.
Dementia caregivers are among the most isolated people I know. Not because they lack support — many have family, some have professional help — but because the grief they are living with does not have a name that others recognize. They are not yet bereaved. They are not yet widowed or orphaned. The social scripts for loss do not apply to them. And so they carry it alone, often for years, in the company of the very person they are grieving.
That is a particular kind of loneliness. It does not announce itself. It accumulates — daily, in small moments. The moment you reach for a shared memory and find that it is no longer shared. The moment you make a joke that once would have had you both in stitches falls into vacancy, into a vacuum — a void. The moment you realize that the person who knew you best, who held the longest record of who you have been across a lifetime, is no longer able to hold it.
You become, progressively, the last witness to your own shared history.
— — —
There is a clinical term — anticipatory grief — that captures some of this. You are grieving a death that has not yet happened, kind of mourning it forward. This is real, and it is well-documented, and it is still not adequately acknowledged in most caregiving contexts.
But the dementia experience extends beyond anticipatory grief into something I find harder to name. It is not only that you are grieving a future death — a future catastrophic loss. It is that you are experiencing, in the present, the loss of a relationship that has already ended in every meaningful way while the physical presence of the person continues.
I want to call this ontological loneliness — and I mean the word ontological precisely, not as decoration. In philosophical terms, ontology is the study of being — of what it means to exist, to be real, to be present in the world. Ontological loneliness is not the loneliness of circumstance, not the loneliness of an empty house or a silent phone. It is loneliness at the level of existence itself. A solitude that lives not in your calendar schedule or your social life but in the deep structure of your being — in the fact that you are present to someone who can no longer be fully present to you.
We are, at our core, relational creatures. We come into being in relationship — as relationship. We understand ourselves through being known by others. The philosopher Martin Buber spoke of the I-Thou relationship — the encounter between two full subjects, each genuinely present to the other, each capable of being changed by the meeting of hearts or minds. What dementia does, slowly and without mercy, is convert that I-Thou encounter into something closer to I-It. Not because the person with dementia becomes an object — they do not, they remain fully human, fully deserving of dignity and love, and you treat them with that dignity. But the reciprocity that makes genuine encounter possible — the capacity to be witnessed and to witness in return — has dissolved on one side, leaving you alone.
You are present to someone who cannot be fully present to you. You are known by someone who no longer knows you. You reach toward them and something reaches back, but it is no longer the same someone. The mutuality that once constituted the relationship — the shared thread that ran between two people across decades — is now held entirely by you. Sometimes you hold it with your fingertips, sometimes with the entire force of your love and will.
That is what I mean by ontological loneliness. It is not a feeling, exactly, though it produces feelings. It is a condition of being. A structural solitude that no amount of company or support fully addresses, because what is missing is not people — it is the specific person who made you real to yourself in a particular way, and the relationship that once allowed you to be genuinely known, felt, seen, understood, touched.
— — —
For those reading this from inside a dementia caregiving relationship: what you are experiencing is grief. Real grief, and it is not pathological. The fact that your person is still alive does not make it less real. The fact that others cannot see it — cannot recognize what has been lost while the body remains — does not make it less real.
You are mourning your witness. You are mourning the shared history that once lived between two people and now lives only in you. You are mourning the version of yourself that only this person knew — the you from the beginning, from before, from the years that accumulated into a life together.
That grief deserves to be named. It deserves to be witnessed — even if the person who once witnessed you best can no longer do so — can no longer say your name when they look at you.
— — —
For those of us who work in hospice, palliative care, social work, chaplaincy — this is worth holding as we sit with families in the long middle years of dementia. The caregiver who seems fine, who is managing, who says they are okay — may be carrying a grief so continuous and so unsanctioned that they have simply stopped expecting anyone to recognize it. Even when they are not utterly exhausted.
So — ask about it. Name it. Sit with it. Do not rush to reframe it or redirect it toward what remains. The grief is real. The loss is real. The witness is gone, even if the funeral is still years away.
What is being lived is one of the hardest things a human being can be asked to carry: the presence, in absence, of the person they love — the absence of the relationship that person once made possible.
— — —
I have no resolution to offer you. The witness does not return. The shared history does not reconstitute itself. What I have found — in my own life, and in the lives of the people I have been honored to accompany — is that naming this grief is itself a form of care and a form of respect. I have learned that refusing to look away from it, refusing to fold it silently into the general weight of caregiving, is its own form of faithfulness.
To grieve the witness — to name what has been lost while the person lives — is not a betrayal of them. It is an act of honesty about what love costs across a long life, and what it means to remain present to someone who can no longer remain fully present to you.
And sometimes, that is just the only faithfulness left available to us. To remain. To remember. To honor what was shared.
Robert Drake is an interfaith clinical chaplain, end-of-life educator, death doula, and grief counselor with over twenty years of experience in hospice, palliative care, pediatric oncology, emergency medicine, and medical aid in dying. He serves as volunteer Director of Spiritual Care Education for the Academy of Aid in Dying Medicine and works with individuals and families throughout the Pacific Northwest through Drake Living & Dying Design. He can be reached at Robert@DrakeLDD.com or Support@DrakeLDD.com.