Grieving Someone with Dementia: When Loss Comes More Than Once
- Heather Marriatori, PhD
- 6 minutes ago
- 6 min read
By Heather Marriatori, PhD, Licensed Psychologist
There is a particular kind of exhaustion that comes from grieving someone who is still alive. If you have watched a parent, spouse, or sibling disappear into dementia - their memories dissolving, their personality shifting, their eyes sometimes looking at you as though you are a stranger - you already know this exhaustion intimately. And if you have then lost that person to death, you may have been surprised to find that the grief did not arrive as expected. Perhaps it came quietly, or in a rush, or tangled up with relief, or not at all for a long time. Perhaps well-meaning friends said, "At least you had time to prepare," and you didn't know how to explain that there is no preparing for this.
The First Loss: Ambiguous Grief
In the 1970s, family therapist Pauline Boss introduced the concept of ambiguous loss - a loss that occurs without the clarity of a definitive ending. Dementia is one of its most profound expressions. The person you love is present in body but increasingly absent in the ways that defined your relationship: their humor, their memories of you, their sense of self, their ability to offer comfort or recognition.
You grieve, but there is no funeral. No socially sanctioned period of mourning. No casseroles left on the doorstep. Others may not recognize your grief at all, because the person is still here. You may not fully recognize it yourself. Instead, you learn to carry it alongside everything else - the caregiving appointments, the insurance calls, the difficult conversations with siblings, the slow renegotiation of who this person is to you now.
This grief is often disenfranchised - a term coined by grief researcher Kenneth Doka to describe grief that society does not acknowledge or support. You may have felt pressure to stay strong, to focus on their care, to be grateful for the time you still have. And so, the grief accumulates, unprocessed, in the margins of your days.
Over months or years, you may mourn many things in succession: the loss of the relationship as it was; the loss of the future you anticipated together; the loss of being known by them - of them holding the shared history of your life; the loss of their role as parent, partner, or confidant even as they remain physically present; and the loss of your own identity as their child or spouse, as it existed in reciprocal relationship with them. Each of these is a real loss. Each deserves to be named.
The Complicated Space Between
For many caregivers and family members, there is a long middle period - sometimes years - that exists between the person they knew and the person's eventual death. This space is psychologically complex in ways that are rarely discussed openly.
Some people describe a gradual acceptance, a kind of ongoing adaptation that allows them to find meaning and connection in new ways. Others describe a persistent, low-grade grief that they cannot shake. Many describe profound ambivalence: loving the person who is here while simultaneously mourning the person who is gone, feeling tenderness and exhaustion in the same breath, sometimes feeling - and then feeling ashamed of feeling - a quiet wish for it to be over.
That wish, when it arises, is not a sign of failure or of insufficient love. It is a sign of being human under enormous strain. It is often an expression of compassion - a longing for the suffering to end, for your loved one and for yourself. It can be held with honesty and self-compassion rather than shame.
When Death Finally Comes
When a person with dementia dies, the people who loved them often encounter a grief that surprises them in its complexity.
The relief is real. Relief that they are no longer suffering. Relief that the caregiving has ended. Relief, sometimes, at the restoration of your own life. This relief is not a betrayal. It is a natural response to the end of a long and painful ordeal, and it can coexist fully with deep love and grief.
The grief is also real - and it may be delayed. Many people find that the emotions they were unable to fully feel during the years of ambiguous loss begin to surface only after the death. Old memories return with unexpected vividness. The person you knew before the illness - their laugh, their handwriting, the way they said your name - may come flooding back, and with them, a grief that feels both ancient and brand new.
This is sometimes called re-grief: mourning not just the death, but all the earlier losses that were never fully processed. The diagnosis. The moment they stopped recognizing you. The last coherent conversation. The birthday they forgot. Each of these may now arrive as its own wave.
The grief may also feel "wrong" in ways that are hard to name. You may find yourself grieving someone who, in many ways, had already been gone for years. You may feel robbed of a "normal" grief - one with a clear before and after, one that others can more easily understand. You may struggle to locate the loss in time: Are you grieving now? Were you grieving then? Were you ever not grieving?
All of this is a legitimate grief experience. It simply doesn't follow the scripts we are given.
Toward Integration
The goal of grief is not to "get over" the loss, but to integrate it - to find a way to carry it that allows you to remain fully present in your own life. For those who have experienced dementia-related loss, this integration often involves several layers of work.
Giving the earlier losses their due. Many people find it helpful to explicitly acknowledge the losses that occurred before the death - to name them, mark them, grieve them as the real losses they were. This might happen in therapy, in journaling, in ritual, or in conversation with others who witnessed the journey.
Reconstructing who they were. The long illness can overshadow memory. There is healing in deliberately remembering the person before dementia - in looking at old photographs, telling old stories, returning to shared places. Grief researchers call this "continuing bonds": the understanding that our relationship with someone we love does not end at their death but transforms.
Making sense of the caregiving years. For those who were primary caregivers, processing the death often involves making meaning of that long, difficult season: What did it cost? What did it give? What were you unable to do that you wish you had? What did you discover you were capable of? These questions deserve space.
Allowing the complicated emotions to exist. Relief, guilt, anger, love, sadness, gratitude - these may all be present at once, and they may shift from week to week. The work is not to resolve the complexity, but to hold it with increasing gentleness toward yourself.
A Note to Those Still in the Middle
If your loved one is still living with dementia, please know this: the grief you are feeling now is real. You do not have to wait for a death certificate to be allowed to mourn. Your losses are legitimate. Your exhaustion is legitimate. Seeking support now - through therapy, a caregiver support group, or trusted relationships - is not giving up. It is taking care of yourself in the way that a long, hard passage requires.
When to Seek Support
Grief after dementia loss can become complicated - particularly when it has been disenfranchised or delayed for years. Consider reaching out to a therapist if you are experiencing prolonged difficulty functioning in daily life, persistent feelings of guilt or numbness, a sense of being stuck in the grief, depression or increased use of alcohol or substances, or a feeling that your grief is somehow illegitimate or wrong.
You don't have to grieve in ways that fit other people's timelines or expectations. There is room for grief that is complex, layered, and slow - because that is often the truest kind.
If you are navigating grieving someone with dementia and would like support, HM Psychological Services offers individual therapy for grief and loss. Contact us at (619) 500-4637 (CA) or (952) 260-1670Â (MN).
References
Boss, P. (1999). Ambiguous Loss: Learning to Live with Unresolved Grief. Harvard University Press.
Doka, K. J. (Ed.). (2002). Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice.Research Press.
Worden, J. W. (2018). Grief Counseling and Grief Therapy (5th ed.). Springer.
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