By: Christiana Best-Giacomini, Ph.D.
October 20, 2026
This summer, I lost my mother. In the months since her passing, I have been learning to live with her absence. Yet grief does not simply disappear with the passage of time. It continues to walk alongside me, sometimes quietly, sometimes with an intensity that catches me by surprise.
As a social worker, I understood that after more than ten years of watching my mother live with dementia, I might experience what is known as anticipatory grief, the mourning that begins long before a loved one dies. Rando (1986) describes anticipatory grief as a response to an expected loss, involving emotional and psychological adjustments that may begin while a loved one is still alive. I knew, intellectually, that my mother’s illness was progressive and that her death would eventually come. I had anticipated it, prepared for it, and, to some degree, believed I had made peace with its inevitability. But understanding grief professionally and experiencing it personally are two very different things.
Dementia is a particularly cruel illness. It does not always take the person we love all at once. Instead, it gradually steals memories, language, recognition, and the cognitive abilities that once defined everyday life. My mother was physically present, yet parts of the woman I had known all my life were slowly slipping away. I could sit beside her, hold her hand, hear her voice, and still mourn the loss of the conversations, shared memories, and familiar exchanges that had once connected us.
Anticipatory grief is a strange and complicated experience. It prepares you for loss without protecting you from the pain of losing. There is something especially heartbreaking about grieving someone who is still alive, someone whose physical presence remains even as other dimensions of the relationship change. Psychologist Pauline Boss describes this experience through the concept of ambiguous loss, a form of loss in which a loved one is physically present but psychologically or cognitively altered. It is a grief without a clear beginning or ending, leaving families suspended between holding on and letting go. For years, I lived in that uncertain space, loving my mother as she was, while mourning the parts of her that dementia had taken.
Yet my mother’s experience was not hers alone. It was part of a much larger public health crisis, one that disproportionately affects women and Black communities. According to the Alzheimer’s Association (2026), approximately 7.4 million Americans aged 65 and older are living with Alzheimer’s dementia, and nearly two-thirds are women. Older Black Americans are approximately twice as likely to have Alzheimer’s disease or another form of dementia as their White counterparts. These disparities cannot be understood solely through individual health conditions. They must also be considered in relation to structural inequalities, access to health care, socioeconomic circumstances, chronic stress, and the cumulative effects of disadvantage across the life course.
For Black Caribbean immigrants like my mother, these realities intersect with another dimension of identity and experience: migration. My mother was part of a generation of Caribbean women who left their homelands in search of opportunity, built lives in the United States, raised families, worked tirelessly, and contributed to communities that did not always recognize their sacrifices. Yet relatively little research has focused specifically on dementia among Black Caribbean immigrants or on the experiences of the families who care for them. Their stories are often absorbed into broader racial categories, leaving important questions about culture, migration, identity, and caregiving insufficiently explored.
Behind every statistic is a family whose life has been altered, and often a woman whose responsibilities have expanded beyond anything she could have imagined. Research consistently demonstrates that women, particularly daughters, carry a disproportionate share of dementia caregiving. For nearly a decade, I was one of those daughters, balancing my responsibilities as a mother, wife, social worker, professor, and researcher while overseeing my mother’s increasingly complex care. There were medical decisions, financial obligations, countless telephone calls, arrangements for round-the-clock assistance, and the emotional exhaustion of watching someone I loved become increasingly dependent on others.
As a Black Caribbean daughter, I understood caregiving through the values of family responsibility, reciprocity, and love that had shaped my upbringing. Caring for my mother was never simply a matter of obligation. It was also a way of honoring the woman who had cared for me, who had crossed borders and made sacrifices so that I might have opportunities she had not enjoyed. But love did not eliminate exhaustion. Cultural expectations did not make difficult decisions easier. And my professional knowledge did not shield me from the emotional weight of watching my mother’s life slowly change.
Perhaps that is one of the most difficult truths about caregiving and grief: we can be prepared and still be devastated. We can understand the progression of an illness and still struggle to accept its consequences. We can love someone deeply, care for them faithfully, and still feel the exhaustion, frustration, guilt, and helplessness that accompany prolonged caregiving.
When my mother died, the long period of anticipatory grief came to an end, but another form of grieving began. I was no longer grieving the gradual disappearance of the woman I had known. I was grieving her physical absence, the finality of knowing that I could no longer hold her hand, sit beside her, or hear her voice.
These experiences became the inspiration for my forthcoming book, Holding On to Pearl: A Daughter’s Journey Through Dementia, Memory, and Love, a deeply personal collection of essays exploring my mother’s life as a Black Caribbean immigrant, the changing relationship between mother and daughter, and the emotional complexities of caregiving, grief, and letting go. Through these reflections, I hope to honor her legacy while giving voice to the countless daughters and families whose experiences of caregiving often remain unseen.
And perhaps this is what I am coming to understand about grief: it is not a process we complete simply because we have had time to prepare. It changes its shape. It moves with us. It becomes part of the landscape of our lives.
My mother is gone, but the love, the memories, and the years we shared remain.
(Dr Christiana Best is an Associate Professor at the University of Saint Joseph, Connecticut)
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