Finding my mother again: Reflections on caregiving, connection, and mental wellbeing

Every year, World Mental Health Day, observed on October 10, reminds us of the importance of speaking openly about our experiences and listening to the experiences of others. This year's theme, "Lived experiences heard: real voices, real change," resonates deeply with me because it reflects one of the most important lessons I learned during one of the most transformative periods of my life: caring for my mother after she was diagnosed with dementia.

When people talk about dementia, they often focus on memory loss. What receives far less attention is how the condition reshapes relationships, identities, and family dynamics. It changes not only the person living with dementia, but also those who love and care for them. My mother was an English teacher, a respected professional, and the person who held our family together. She was also a devoted homemaker who managed to balance a demanding career with family responsibilities. Like many women of her generation, she sacrificed much of herself for the well-being of others, often putting the needs of her family ahead of her own. Her commitment, discipline, and sense of responsibility shaped the lives of everyone around her.

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I admired and respected her deeply, but ours was not always an emotionally easy relationship. My mother expressed love through duty, hard work, and responsibility rather than through words. She was strong, principled, and not particularly expressive with her emotions. Growing up, I often longed for a deeper emotional connection with her. Looking back, I realise that I spent much of my life searching for a closeness that I could not quite define.

Everything changed after my father died in 2021. One moment remains etched in my memory. When my father's body was brought home from the hospital, my mother looked at him with confusion. She could not recognise the man who had been her husband and companion for nearly six decades. Watching that moment unfold was heartbreaking, but it was also an early sign that something was profoundly wrong. Soon afterwards, she was diagnosed with dementia.

Like many family caregivers, I initially approached the situation as a problem to solve. I searched for information, consulted doctors, read extensively, and looked for answers. Most of all, I wanted my mother back. I hoped that with enough knowledge, determination, or treatment, I could somehow halt what was happening. Over time, however, dementia taught me a lesson that was both painful and liberating: not everything can be fixed. As the disease progressed, my mother's memories gradually faded. One of the hardest moments came when she no longer recognised me as her daughter. She could still say my nickname, Pia, but most of the time she called me "Abba", the name she used for her own father. At first, this broke my heart. I wanted her to remember who I was. I wanted her to know that I was her daughter. But eventually, dementia forced me to let go of what I wanted and pay attention to what she needed.

Gradually, I realised that although she no longer recognised my identity, she still recognised something more fundamental. She recognised comfort, trust, and safety. Whenever she felt frightened, confused, or anxious, she looked for me. Somewhere within her fading memories, I had become the person who made her feel secure. That realisation changed how I understood caregiving and, perhaps, how I understood love itself. For most of my life, my mother had been the caregiver, and I had been the child. She protected me, guided me, and helped me navigate life's challenges. Then, almost without either of us noticing, our roles began to reverse. The woman who had once cared for everyone else became increasingly dependent on others for reassurance, support, and care. There were moments when it felt as though I had become the parent and she had become the child. Yet it was during this role reversal that I experienced a closeness with my mother that had eluded me for much of my life.

Growing up, I often wished for a deeper emotional connection with her. Ironically, it was during the years when dementia was taking so much away that I found the connection I had been searching for. Not through conversations or expressions of affection, but through trust, patience, and presence. Through holding her hand when she was frightened, helping her navigate a world that increasingly felt unfamiliar, and simply showing up day after day. One of the great ironies of dementia is that while it can take away memories, it can also reveal relationships in new ways. In losing one form of connection, we sometimes discover another. The emotional closeness I had searched for throughout much of my life emerged during the very years when my mother's memories were fading. Looking back, I now realise that love is not always found in words or recognition. Sometimes it is found in quiet acts of care, in patience, and in simply being present.

The journey changed me as well. For much of my life, I preferred to appear strong and self-reliant. Like many caregivers, I believed I needed to hold everything together. I rarely spoke openly about exhaustion, grief, vulnerability, or the emotional complexity of caring for someone you love while gradually losing them at the same time. Caregiving challenged that belief. I began sharing reflections about my experience, initially as a way of making sense of my own emotions. It also taught me the importance of self-care. For a long time, I believed that putting my own needs aside was part of being a good caregiver. Over time, I realised that caring for others sustainably requires caring for ourselves too, a lesson that continues to shape how I live and one that I now encourage others to embrace.

What followed was unexpected. People started reaching out to me with stories of their own. Some were caring for parents living with dementia or Alzheimer's disease. Others were supporting loved ones through chronic illness, disability, or old age. Many told me they had never spoken openly about these experiences before. Again and again, I heard the same message: "I thought I was the only one." Those conversations revealed something important. What we experience privately is often shared by many others, yet because these struggles are rarely discussed, people carry them in silence. This is why this year's World Mental Health Day theme feels so important to me. Lived experiences matter not because they provide perfect answers, but because they help people feel seen, understood, and less alone. When people share their stories honestly, they create space for others to recognise themselves in those experiences.

Caregiving can be deeply rewarding, but it can also be emotionally exhausting. Caregivers often carry grief, worry, guilt, uncertainty, and anticipatory loss while continuing to meet professional and family responsibilities. Yet their emotional well-being is rarely part of public conversations. My own journey taught me that caregivers need care too. Self-care is not a luxury for caregivers; it is a necessity. We need spaces where we can speak honestly about exhaustion without feeling selfish or guilty. We need communities where vulnerability is accepted rather than hidden. We need workplaces and societies that recognise the invisible responsibilities many people carry long before and long after they arrive at work each day.

My mother passed away in 2024, and of course I miss her deeply. But when I look back today, I think less about what dementia took away and more about what the journey gave me. It taught me patience when I wanted certainty, acceptance when I wanted solutions, empathy when I felt helpless, and the importance of caring for my own well-being while caring for others. Most importantly, it taught me that relationships do not have to be perfect to be meaningful. For years, I searched for a particular kind of emotional connection with my mother. In the end, I found it in a way neither of us could have imagined. The relationship I had longed for emerged not despite caregiving, but through it. That unexpected gift remains one of the things I cherish most from that difficult journey.

As we mark World Mental Health Day, I hope we continue creating spaces where people can share their lived experiences openly and without judgement. Real change often begins with listening. Sometimes, simply hearing another person's story can make us feel less alone, more understood, and more hopeful. For me, that has been one of the most important lessons of my caregiving journey, and perhaps one of the most powerful reminders of our shared humanity.

Tahera Jabeen is a development practitioner.

​Views expressed in this article are the author's own.

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