Ambiguous Loss and Dementia: When Your Parent Is Here and Gone at the Same Time

GRIEF AND CAREGIVING • July 25, 2026

The Cardigan She No Longer Knows

Marjorie stands in the doorway of her mother’s room on a Sunday afternoon, holding a cardigan her mother has worn every winter for as long as she can remember, and watches her mother turn it over in her hands like an object that fell out of the sky. “Whose is this,” her mother asks, not upset, only curious, the way you might ask about a stranger’s coat left on a chair. She says it’s hers, and her mother nods politely and sets it down, already looking past it toward the window.

Marjorie is a composite drawn from patterns across many clients, not one real person, though the specific ache of that Sunday, a familiar object gone unfamiliar in her mother’s hands, will be recognizable to many daughters who love a parent with dementia. She runs a regional sales division, negotiates seven figure contracts without breaking a sweat, and drives forty minutes to her mother’s care home every week with a to do list still open on her phone. Nobody has died. And yet she grieves, in a way she has no good language for, every time she visits.

In my work with clients caring for a parent with dementia, I hear a version of this same disorientation constantly: the person you love is sitting right in front of you, breathing, sometimes smiling, and you are grieving her anyway, because so much of who she was has already gone quiet. There is no funeral for this, and no card that says sorry for the loss of your mother’s memory of your childhood. The grief has nowhere to be witnessed, so it tends to live in the body instead, in exhaustion that sleep does not touch and a low grade sadness that follows a woman back into her car in the parking lot.

This post is about naming what Marjorie is standing inside: a loss that has no clean edges, no single day to mark, and no ritual built for it. If you are the daughter driving to a memory care facility on your lunch break, or the one taking calls from a parent who no longer remembers making them, this is not a diagnosis and it is not a label for you or your family. It is a description of a real, common experience that deserves plain language rather than silence. You may also find it useful to read about what relational trauma actually is and about the particular weight of people pleasing as a trauma response, since both often surface for women trying to be endlessly available to a parent who can no longer meet them halfway.

What Ambiguous Loss Actually Is

Most grief has a shape. Someone dies, people gather, there is a service, there is a date on a stone, and slowly, unevenly, life reorganizes itself around the absence. Ambiguous loss does not follow that shape. It describes a loss that has no clear resolution because the person is physically present but psychologically changed or absent, or, in other situations, physically gone but still psychologically present in the lives of the people who loved them. Dementia caregiving sits squarely inside the first version of that pattern.

What makes ambiguous loss so disorienting is not the sadness itself, which is familiar, but the lack of a fixed point to grieve toward. A daughter cannot mourn her mother’s memory the way she would mourn her mother, because her mother is still there, still eating breakfast, still occasionally laughing at the television. The mind keeps looking for an ending so it can begin the next chapter, and dementia keeps refusing to provide one.

This is not a fringe experience. A large and largely unseen population of adult daughters lives with some version of it every week, caring for a parent whose memory, personality, or recognition has thinned in ways that make ordinary visits feel like small repeated goodbyes. Research examining the experience of informal caregivers for people with dementia found that caregiver stress and reduced quality of life are common and measurable, not incidental side effects of the caregiving role but a central feature of it (PMID 41099975). The exhaustion Marjorie feels after a visit where nothing dramatic happened is not a personal failing. It is a predictable cost of loving someone through this particular kind of loss.

Nobody prepares a daughter for the fact that this grief will not resolve on any set schedule. It does not move in stages toward acceptance the way loss after a death sometimes does, because the person has not finished leaving. She might be more present next Tuesday than she was today. She might not. A daughter is left recalibrating her expectations almost every visit, with no way to plan for which version of her mother she will find.

Why Dementia Is Ambiguous Loss in Its Purest Form

Of all the situations that produce ambiguous loss, dementia may be the clearest example, because it delivers both halves of the paradox inside a single relationship, often inside a single conversation. The body persists. The voice is the same voice. The hands are the same hands that once braided a daughter’s hair or steadied a bicycle seat. And the person who animated that body, the one who remembers the bicycle at all, is receding in pieces that do not return.

This differs from anticipatory grief after a terminal diagnosis with a known trajectory, though the two overlap. Anticipatory grief in dementia caregiving often stretches across years rather than months, without a clear final chapter to prepare for, because decline in dementia is rarely a straight line. A parent might plateau for a long stretch, then decline sharply, then plateau again, and a daughter’s grief keeps adjusting to a moving target rather than counting down to a known date.

Research studying caregivers of people with dementia has found meaningful associations between anticipatory grief, loneliness, and depression, with caregivers who report higher anticipatory grief also reporting higher loneliness and more depressive symptoms over time (PMID 40554993). This matters because it tells us the sadness a daughter feels is not a side note to the practical work of caregiving. It is a central, measurable part of the experience, one that deserves its own attention rather than being treated as something she should push through while she handles medication schedules and doctor’s appointments.

What makes this loss so exhausting, beyond the grief itself, is the sheer duration. A death has an end point after which a person can begin, however slowly, to rebuild. Ambiguous loss in dementia can continue for years, sometimes a decade or more, with a daughter absorbing new losses in increments so small that each one alone seems too minor to mention, and yet the accumulation is enormous. Novelist Kazuo Ishiguro has written about memory as something that can dissolve and resurface unpredictably, leaving both the person and the people who love them uncertain about what remains, which is close to the daily experience of a daughter watching her parent’s memory do exactly that.

How This Lands in the Daughter’s Daily Life

Justine picks up the phone on a Tuesday morning to hear her father ask, with real urgency, whether her mother, who died six years ago, has eaten lunch yet. Justine is a composite drawn from patterns across many clients, not one real person, though the vertigo of that call, being asked about someone she buried years ago by the person who loved her most, is something I hear about often from daughters living through a parent’s dementia. She answers gently that lunch is being handled, redirects the conversation, and hangs up the phone with her hands shaking slightly, because she has just, in effect, been asked to comfort her father through a grief she thought both of them had already survived together.

This is what role reversal looks like in practice, and it rarely announces itself with a single dramatic moment. For Justine, it arrived in accumulation: the daughter who once called her father for advice is now the one managing his medications, finances, and daily schedule. The relationship has not merely shifted, it has inverted, and the inversion asks something of a daughter that very little in her life has prepared her for, no matter how competent she is elsewhere.

For driven women in particular, this reversal collides with an identity built on competence, and the caretaking instinct it demands can be hard to untangle from ordinary devotion. Justine runs finance for a mid sized company and prides herself on solving problems other people find intractable. None of that training tells her what to do when her father calls her by her mother’s name, or when she has to explain, for the third time this month, that her mother has passed, and watch him grieve it freshly each time as though hearing it for the first time. Her professional skills are not useless here, but they were built for a different kind of problem, one with a solution at the end of it.

Research on the behavioral and psychological symptoms that often accompany dementia, including agitation, confusion, and repetitive questioning, has documented their significant impact on caregiver mental health, sleep, and overall burden, with caregivers managing these symptoms reporting higher strain than those managing the physical aspects of care alone (PMID 40261108). This is worth naming plainly, and it is exactly what Justine is living: it is often not the physical labor of caregiving that wears a daughter down fastest. It is the psychological labor of absorbing a parent’s confusion, redirecting it gently, and doing so again without any guarantee that today’s explanation will hold until tomorrow.

Justine has started keeping a small notebook in her car, not for logistics but for herself, where she writes down the strange, tender, occasionally funny things her father says before they disappear from both of their memories. It is not a solution. It is a way of holding onto something in a situation that keeps asking her to let go of pieces of her father while he is still, undeniably, here.

The Whiplash of Lucid Moments

Perhaps nothing about dementia caregiving is as destabilizing as a lucid moment, the sudden and unpredictable return of clarity, humor, or full recognition after a long stretch of fog. Marjorie describes it as the ground reappearing under her feet for ten minutes and then vanishing again with no warning. Her mother will ask a specific, sharp question about her work, the exact kind of question the old her used to ask, and for those ten minutes she has her mother back in a way that feels almost unbearably good.

Then the fog returns, sometimes mid sentence, and the daughter is left holding both the joy of having just glimpsed her mother and the fresh grief of losing her again, usually within the same hour. This is not a contradiction to be resolved. It is what the experience is, and pretending it should feel simpler than it does only adds shame to an already exhausting cycle.

Research examining delirium and lucid episodes in people with dementia has found associations between these episodes and both anticipatory grief and caregiver stress, suggesting that the unpredictable return of clarity is not merely a bittersweet footnote but a measurable contributor to the emotional load caregivers carry (PMID 42115083). In other words, the whiplash Marjorie feels is not a sign she is handling this badly. It is a documented pattern, one that deserves acknowledgment rather than the assumption that a good lucid moment should feel like good news with no cost attached.

That line matters here because it captures something true about what a lucid moment is. Marjorie is not imagining her mother’s brief return to clarity. She is witnessing the residue of an entire relationship still capable of surfacing, proof that decades of connection do not vanish evenly or completely, even when the disease affecting her mother’s mind is unrelenting. The daughters living through this are not choosing between the version of the parent who is gone and the version who remains. They are living, minute to minute, with both, and the whiplash between them is what loving someone through this looks like from the inside.

Novelist Ruth Ozeki has written about the strange elasticity of time and presence, how a person can be simultaneously here and somewhere else entirely, which is not a bad description of what a lucid moment feels like from across the kitchen table. It comes without warning, it does not last, and it changes nothing about tomorrow, and yet it is real while it is happening, and it counts.

Both/And: She Is Your Mother AND She Is Not

Here is a genuine both/and, not a tidy resolution where one truth quietly cancels the other. It is true that the woman in the chair across from Marjorie is her mother. Same eyes, same hands, same laugh on a good day. That is true and it matters. And it is also true that she is not, in many of the ways that built their relationship over four decades, the same person, because the memories, the specific personality quirks, and the shared history that made her Marjorie’s mother in the fullest sense have thinned in ways that do not easily reverse.

Holding both of these as valid at once, rather than picking one and discarding the other, is most of the actual work of this stage of caregiving. Marjorie does not need to decide whether her mother is still “really” there or already gone. Both framings are incomplete on their own. The task is not resolution. It is tolerance for two things being true in the same room, sometimes in the same five minutes.

Much of what makes this loss so hard to name publicly is that it does not fit the categories society already has ready made for grief. There is no card in the drugstore for it, no established etiquette for how a coworker should respond when a woman says her mother is still alive but does not remember her anymore. This absence of social scripting has a name.

Research on the management and ongoing care needs of people with dementia and their caregivers points to a persistent gap between what families are living through and what existing systems of support are built to recognize, suggesting the disenfranchisement daughters experience is not a personal misunderstanding but a structural blind spot in how care and grief support are organized (PMID 40841343). Marjorie’s isolation in this experience is not an accident of her friend group failing her. It reflects a wider absence of infrastructure for exactly this kind of loss.

Irish writer Claire Keegan writes with unusual precision about the small, undramatic devastations that happen inside ordinary households, the kind that never make the news and rarely get spoken about directly, and that precision is useful here. Nobody is going to organize a vigil for the day a mother stops remembering her daughter’s middle name. But the loss is real, it is valid, and it deserves a place in the conversation about grief rather than a quiet corner outside of it.

The Systemic Lens: Why We Have No Rituals for This

It would be incomplete to treat this loss as purely a private, internal experience, separate from the systems a daughter has to move through while she carries it. Workplaces, extended family, friend groups, and health care systems all shape how supported or unsupported a woman feels while she grieves a parent who has not died, and very little of that surrounding structure was built with this kind of grief in mind.

Consider how bereavement policy works at most companies. A death in the family typically triggers a defined number of days off and an expectation of reduced workload. A parent’s dementia triggers none of that, even though the emotional and logistical toll can stretch across years rather than days. A daughter can be quietly grieving and managing a genuine crisis for a decade while her workplace has no category for what she is going through, because on paper, nothing has technically happened yet.

Extended family often responds with a similar blind spot. Relatives who have not been present for the daily reality of decline may minimize what a daughter describes, suggesting she is overreacting to what they assume is ordinary aging, or may withdraw entirely because they find the visits too painful, leaving the daughter to carry the bulk of both the practical and the emotional weight alone. Friends, meaning well, often ask how her mother is doing rather than how she is doing, missing that the daughter herself is the one absorbing most of the loss in real time.

None of this is a matter of any one person behaving badly. It reflects a broader absence of shared ritual. Cultures generally know what to do after a death: gather, cook, sit with the family, mark a date each year. Almost no culture has an equivalent ritual for a grief that unfolds gradually around someone who is still alive, still sitting at the table, still present in her own diminished way. Without ritual, this grief tends to get carried silently, absorbed into a daughter’s evenings and weekends as one more item she manages alone.

This gap also shapes how attachment gets renegotiated during this period. A daughter’s sense of safety and connection, patterns often shaped early in life, can resurface with unusual intensity while she is losing her parent gradually, which is part of why understanding anxious attachment patterns or recognizing a fearful avoidant style in yourself can clarify why this loss lands as hard as it does, especially for driven women who have spent years being the reliable one in every relationship they are part of.

The Way Ahead

If Marjorie’s cardigan moment, or Justine’s phone call about a mother six years gone, felt familiar, here is what tends to help, offered as an invitation rather than a prescription, because no single approach fits every family living through this. The starting point is not finding a way to stop grieving until the person has died. It is learning to let the grief exist alongside the relationship that continues, rather than treating the two as mutually exclusive.

Practically, this often begins with naming the loss out loud to at least one person who will not try to correct or minimize it. Many daughters carry this quietly for years because the loss does not fit anything others recognize, and saying “I am grieving my mother even though she is still alive” to someone capable of receiving that sentence without flinching can loosen a weight that logistics alone cannot touch. This is not about processing every feeling in real time. It is about ending the isolation that disenfranchised grief creates by default.

It also helps to separate the caregiving tasks that are truly yours to carry from the ones that defaulted to you because you were the one who did not say no. A daughter can remain devoted to her parent’s wellbeing without being the only person managing every appointment and every emotional check in. Sharing the load, whether with siblings, professional caregivers, or a support group built for this kind of caregiving, is not a failure of devotion. It is what makes sustained devotion possible over years rather than months.

Sleep and basic physical care deserve more attention than they typically get in this conversation. A daughter running on inadequate sleep and constant low grade vigilance about her parent’s safety will have less capacity for patience and clear decision making, not because she lacks resolve but because exhausted bodies make everything harder, including grief. Protecting even small amounts of rest is not indulgent. It is part of what allows this kind of caregiving to continue.

It is also worth naming that lucid moments, however disorienting, do not need to be managed away or minimized. They can be received as what they are, real and temporary at once, without a daughter needing to brace against the joy of one to protect herself from the grief that follows it. Both can be held. Neither cancels the other.

Finally, this is a loss that benefits from professional support precisely because it has no built in social structure to hold it. A therapist familiar with this kind of grief can help a daughter make sense of the whiplash, the guilt, and the strange anger that often accompanies watching someone decline slowly, without any of those reactions needing to be treated as a problem rather than a normal response to an abnormal, ongoing loss. You can read more about the earlier signals of this kind of strain in the signs you are healing from trauma, and about how deep relational bonds can complicate a caregiver’s ability to set limits even when limits are exactly what she needs.

Marjorie still drives to the care home every week. Justine still answers the phone every time her father calls, even knowing what the call might ask of her. Neither woman has resolved this loss, because there is nothing here to resolve in the way a finished loss resolves. What has changed, for both of them, is the quiet permission to call it what it is: real grief, for a real loss, happening in real time. If you find yourself in this same position, work such as understanding complex trauma responses or rebuilding trust in your own perception may feel unexpectedly relevant, since so much of this experience asks a daughter to trust feelings that the people around her may not immediately understand. It can also help to revisit why setting boundaries feels impossible after difficult family dynamics, since boundaries are often the first casualty of this kind of caregiving, and to consider how attachment patterns shape adult relationships long before a parent’s decline ever begins. And on the days the weight of it all needs somewhere to rest, these words for hard days were written with exactly this kind of exhaustion in mind.

References: PMID 41099975; PMID 40554993; PMID 40261108; PMID 42115083; PMID 40841343.

Warmly, Annie.

Related Reading

Gangan, Nilesh, et al. “Does the Relationship Between Stress and Quality of Life Differ Among Informal Caregivers of Older Adults With Alzheimer’s Disease and Children With Autism Spectrum Disorder? Results From a Cross-Sectional Survey.” Journal of Patient-Reported Outcomes, 2025.

Brice, Kelly N., et al. “Heightened Risk: Childhood Trauma and Anticipatory Grief Exacerbate the Impact of Loneliness on Depressive Symptoms in Dementia Caregivers.” Psychoneuroendocrinology, 2025.

Chen, I-Wen, et al. “The Impact of Behavioral and Psychological Symptoms of Dementia on Mental Health, Sleep Quality, and Caregiver’s Burden.” International Journal of Geriatric Psychiatry, 2025.

Lapid, Maria I., et al. “Delirium and Lucid Episodes in Dementia: Associations With Anticipatory Grief and Caregiver Stressors.” International Psychogeriatrics, 2026.

Paggetti, Alice, et al. “Management and Care for People Living With Dementia and Their Caregivers: Findings From an Italian National Survey on Caregivers and Services Use.” Psychogeriatrics, 2025.

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