Choosing to Care: A Daughter's Journey With Alzheimer’s

When Margarita began to need more care due to her advancing Alzheimer’s in 2018, her daughter Irina found herself at a crossroads. As the only remaining immediate family member, Irina faced a choice: She could place her mother in a care facility and entrust her care to professionals. At 39, on her own, and building a career, society might have expected her to prioritize her own life. But Irina made an atypical, deeply personal decision. She chose to step into the demanding role as her mother’s primary caregiver.

Now 45, Irina, who holds a Ph.D. in social psychology from New York University, continues to balance her career while caring for Margarita. In our culture, caregiving is often viewed as a job for those with lesser education or skill—and certainly as a detour from a successful career. But for Irina, it feels natural to honor a relationship with the mother who raised her as a single parent in the USSR before they fled to the US as refugees.

This week, I had the opportunity to visit Irina and Margarita at a seasonal bungalow community in the Hudson Valley, just north of New York City. Irina spends her days taking care of mom, who is now 84, in the late stages of Alzheimer’s, and bedbound. They live in Queens during the cooler months, but in the summer they come to the bungalow to seek respite from the city’s intensity.

What unfolded in the quiet hours of my visit was a tenderness in their mother-daughter connection: a bond that has been tested by time, emigration, and the unfortunate erosion of memory and cognition.

A Day in the Life of Caregiving

Mom sleeps most of the day now due to the advancement of her disease. She’s typically only awake from 7 to 10 p.m.—a time for Irina to connect and care for her. "She's my baby now," Irina told me with a soft smile. Margarita, once an accomplished bioscientist in the USSR turned pathology lab technician in the US, is now a precious, fragile being who relies on Irina for everything. Irina responds with the same level of tenderness and awe that one might extend to a newborn.

I witness their mealtime routine. Irina smiles softly as she brushes her mother’s hair back, gazing into her eyes with a love so palpable that even in mom’s most distant moments, there is a flicker of recognition. With care, she uses a hand-crank lift to lower mom into a wheelchair and feeds her fresh, healthy, homemade food—and they don’t skip dessert.

Throughout the meal, mom mumbles in Russian, and Irina tries her best to understand and respond.

Occasionally, the words are clear, and their conversation flows, but often Irina’s responses are an attempt to meet mom where she is, even when the meaning is unclear. “I affirm and then say something like, ‘And then what happened?’” she describes when she struggles to follow. It’s an effort to bridge the distance between their realities and minds, as if to boldly protest the idea that Alzheimer’s could sever the connection between them.

This is a common approach to communicating and interacting with someone with dementia, one that is recommended by experts. Caregiver education programs like the one at Validation Training Institute encourage this kind of engagement with people who experience cognitive decline in order to relieve stress and enhance dignity and happiness.

Irina emphasizes that throughout her mother’s illness, their emotional connection has remained intact. “The connection feels just as close as it always has—and in some ways, closer,” she shares. In the past, her mother had been very private about her feelings and her life in general, but with Alzheimer's, some of those walls have come down. Now, emotions are transparent, allowing Irina to understand her mom more readily.

When mom rests, Irina works from home. She balances behavioral research consulting projects, represents the American Psychological Association at the United Nations, and offers coaching services to clients. Each stage of her mother’s illness has required Irina to adapt and balance her caregiving duties and work—work that helps maintain her sense of self.

The job of managing her mother’s care doesn’t pause when Margarita is asleep; it’s a continuous stream of responsibilities. Each day, Irina preps meals, manages medications, coordinates with doctors and home hospice professionals, and navigates administrative systems to ensure her mom’s comfort and well-being. Financial resources are limited, but what they lack in material wealth is made up for in devotion.

The Toll of Caregiving

Irina’s journey with caregiving has been an isolating one. She has little time to spend fostering relationships with peers, which means that her social circle has grown more distant. Those who understand the meaning and gravity of her choice have offered much-needed support where they can, while others—unable to comprehend why she would sacrifice so much—have distanced themselves or abandoned her altogether. The weight of these losses is heavy, but Irina carries on.

Mom’s room is fitted with a Nest camera, which allows Irina to monitor on the rare instances that she leaves the bungalow to do an errand. The time away is calculated so that the nurse's aid or neighbor can be present, with Irina checking on mom often with the phone app.

Juggling these responsibilities is an exhausting balancing act, one that leaves little room for rest. Yet Irina has found small pockets of self-care. Each day, she enjoys a 45-minute swim in the nearby lake—a brief escape where she can recharge and connect with herself.

And then there’s their cat, Dusia—soft, warm, always nearby—who provides purrs and snuggles to both mother and daughter. Irina tells me that Dusia has been an indispensable source of comfort and companionship over the last six years, unwavering even during Margarita’s aggressive behavior at an earlier phase of Alzheimer’s. In the moments when mom is back in bed and Irina is catching her breath, Dusia’s presence helps maintain a fragile but precious homeostasis.

A Different Measure of Success

Irina’s decision to care for her mother isn't something our society readily embraces. As a highly educated woman in her mid-40s, many would expect her to be deep into her career, traveling, or building a life for herself. Instead, she has chosen to spend her time in what some might consider a thankless role. It’s a choice that defies the metrics by which we often measure success: productivity, independence, and self-advancement. But who says caregiving can’t be just as valid and vital?

Irina’s choice to care for her mother speaks to a different value system, one that sees relationships, not professional accolades, as the core of a meaningful life. Irina’s Jewish-Armenian family suffered from some of the harshest persecution of the Stalinist era. Their tragic history, along with growing up in the USSR and immigrating, shaped her deep sense of loyalty and survival. Her mother sacrificed everything for Irina’s education and to bring her to safety in the US. Now, Irina returns the favor, not out of obligation but out of love and a deep sense of reciprocity.

Irina also describes when caregiving has given back to her. Ironically, nothing else has put her in touch with herself as much as committing to and focusing on caring for her mother. It has forced her to confront her own desires, core values, and life choices. The hospital chaplain once told Irina, “It’s a time of growing roots rather than leaves.”

There is a quiet power in Irina’s decision, in her rejection of societal expectations in favor of something richer—a connection that transcends time, space, and memory.

Is caregiving right for you?

If you have an ailing family member or friend, perhaps you have considered the possibility of giving care. The decision is deeply personal; it can come with profound rewards but also significant challenges. Irina chooses now to care for her mother full-time with support from a Medicare-funded home hospice. Others offer part-time care to a loved one as part of a broader network of care solutions.

Ultimately, caregiving isn’t a path that everyone is prepared or able to take, and that’s okay. Deciding if it’s right for you requires careful consideration of your emotional, physical, and financial capacities and limits.

Here are a few key factors to consider:

• Time and energy. Caregiving involves daily tasks like feeding, bathing, and managing logistics, as well as coordinating care. With dementia and many other illnesses, there is constant learning. It’s a role that requires patience, resilience, and flexibility.
• Emotional impact. Caregiving can be both rewarding and emotionally taxing. While many caregivers experience a deep sense of fulfillment, they may also face feelings of isolation, frustration, and grief. To sustain the efforts, you will need to learn to manage and process your emotions in healthy ways.
• Financial considerations. Providing care yourself may be cheaper than hiring professional caregivers, but it can still strain finances, particularly if it requires reducing work hours or leaving a job. If your loved one qualifies, government programs like SSDI and PACE centers may be a source of support.
• Your well-being. It’s easy to lose sight of your own needs as a caregiver. Self-care, setting boundaries, and asking for help are essential to sustaining your ability to provide care. A strong support system can make a huge difference.

There is no right or wrong answer. If you choose this path, know that resources and support may be available to help make the journey more manageable and ensure your mental and physical well-being so you don’t experience burnout.

How Society Can Better Support Family Caregivers

Irina’s story is not unique; many of us have or will have aging parents who diminish in their health and capacity. Caregiving should not be a burden that individuals must shoulder alone.

As a society, we have to rethink how we support those who choose to care for loved ones. More comprehensive social systems—financial support, respite care, community networks—are essential to sustaining caregivers like Irina. Beyond the logistical needs, a cultural shift is required: a recognition that aging is normal and caregiving is a valid and necessary role in a society that often privileges individualism over interdependence.

Conclusion

Alzheimer’s is a cruel disease. It severs the bonds of shared memories and experiences. Yet, in the bungalow in the Hudson Valley, I witnessed something beautiful. Irina has created a home with a monumental love that overshadows loss, where two worlds—though drifting further apart—still reach for one another.

Irina's story reminds us that caregiving is a return to what matters most: a life centered on connection, care, and the relationships that sustain us.

Because, from beginning to end, this is what life is truly about.