Abstract
Reflecting on my motherhood experience over the last decade, I think of the idiom, “burning the candle at both ends”, but with the added layer of, “and in the middle too!”. At one point, motherhood simply meant being a mother to my own children—the act of having and raising children, with all that encompasses. In moving through the life course, however, motherhood became more complex. I am a mother to two children, one of whom is neuroatypical, a daughter to my aging mother who has multiple illnesses, and a sister to my brother who died from a degenerative disease. I was in a triple caregiving role, perhaps more nuanced than sandwich or compound caregiving, and mothering to all simultaneously, to some degree. Autoethnographic in approach, and grounded in the framework of reproductive identity, in this article, I use my lived experiences to explore how care-centered identities form and evolve and how aspects of mothering carry into other relationships, with identities becoming interconnected. In illustrating the challenges of negotiating motherhood within this multigenerational network of caregiving, I argue that care of this kind pushes the boundaries to the point of crisis, redefining maternal identity. While caregiving is necessary and can be profoundly meaningful, compound caregiving is largely unsustainable, and particularly without adequate support. This article contributes to the field of motherhood studies by examining social structures surrounding mothers such as gaps in resources, invisible labor, and gendered expectations.
Key words: multigenerational caregiving, mothering across family networks, triple caregiving, compound caregiving, women and multiple caregiver identities, informal care-labor challenges
Introduction
Being a mother is challenging, and everyone has their own unique set of circumstances that might make it harder. For me, having two children while trying to maintain a full-time academic career and other roles played in society, along with heightened awareness of my own aging in mid-life, is difficult enough. Add in a child with dual neurodevelopmental disorders, unexpectedly coming into a caregiver role for a disabled sibling, and eventually taking on sole filial responsibility for a chronically ill mother, and life becomes more complicated. In her research on middle-aged caregivers of siblings, Avieli (2020) discusses how caregiving is one responsibility among many competing roles in mid-life. She writes: “Roles are not replaced one by the other, but rather added, and become an innate part of everyday life and identity” (p. 641). This accumulation of roles entails significant effort for the caregiver and recasts mothering into something messier upending many life domains: marriage, career, one’s own health, family, hobbies, personal pursuits, friendships, and the like. With this, I will share my journey. But prior to doing so, I shed light on types of caregiving and definitions of reproductive identity and mothering which provide context for the article, as well as the rationale for writing it, and relational ethics corresponding to the people I write about.
Aspects of care-labor:
“Sandwich generation”, a well-known concept defined by Miller (1981), refers to adult children of the elderly balancing the competing needs of parenting their own children while also caring for their aging parents. They are described in the literature as experiencing a unique set of stressors such as time constraints, disrupted physical health and psychological well-being, job strain, financial difficulty, and the possibility of decreased marital relationships (Pashazade et. al, 2024). Data from the Caregiver Action Network (n.d.) shows that almost half of adults ages 40-59 are sandwich caregivers, with 60% being women. While they have received considerable attention in the literature, research on the specific roles sandwich caregivers play, particularly the lived experiences of women (Steiner & Fletcher, 2017), has been limited. There is also a paucity in the literature regarding compound caregivers (Perkins, 2010; Wang et al., 2022)—those with responsibilities for their children which are further compounded when caring for others, including multiple family members such as a spouse or sibling (Perkins, 2010). I check the boxes for both, but also describe myself as performing triple caregiving, an extension of each because it implies more than two roles, in addition to unique care that is given down, up, and across generations. Regardless of the label, informal caregiving, according to Almeida (2026), is largely invisible despite the cognitive, emotional, moral, and financial weight it carries, and strongly gendered, with women carrying the bulk of unpaid labor.
Reproductive identity and mothering:
Reproductive identity, a concept introduced by Athan (2020) to describe how individuals make meaning of their lived reproductive experiences, is important as a backdrop for this article. According to Athan (2020), it includes deciding whether to become a parent and how related experiences might change over one’s lifetime. She asserts that there has been an oversimplification of reproductive life thus far, when in fact it has a profound impact on the self, analogous to gender, sexuality, and race. It is described broadly and with fluidity, which can include how individuals orient themselves to mothering and ultimately, caregiving.
It is also important to define motherhood and mothering. In Of Women born, Rich (1986) differentiates between motherhood as an institution that is politically and socially defined by the patriarchy and therefore oppressive, versus mothering, which is shaped by women’s own experiences, dictated by women, and capable of taking on many forms, leading to empowerment. In writing about motherhood studies as an academic discipline, Rose (2015) makes further distinctions between motherhood, mothering, and mother with motherhood as the social system in which mothering is performed; mothering as the action; and mother as the individual. Cambridge Dictionary (n.d.) defines “mothering” as “the process of caring for children as their mother or caring for people in the way that a mother does.” So, what does a mother do? Nurture, guide, support, protect, manage needs of those dependent on her, and sustain life to name a few. Feminist scholars like O’Reilly (2004) have written intricately about the act of mothering, conceptualizing it beyond a private, biological identity and into a more expansive role of caring practices and moral responsibilities. There is mothering in caregiving work, and through this larger lens and scholarship in mind, I speak of my intergenerational caregiving experiences.
In conceptualizing roles in this way, a central key issue may arise regarding gendered norms and naturalizing caregiving as a woman’s job. By no means do I suggest that caregiving is inherently a maternal duty and that mothers should be expected to be caregivers. I also clarify that I was not my brother’s mother, and I am not my mother’s mother. There are differences between caregiving and being a mother. Rather, I share that in some ways, in my subjective reality, I found the support provided to my family members to be like the support given to my children, and recognize that the skills and values inherent in childrearing overlapped in caregiving. My experiences make me cognizant of how in caregiving for so many, mothering gets stretched beyond the conventional. And while this role holds tremendous value, maternal identity becomes hard to entangle as a distinct entity.
Importance of this article:
In writing about matricentric feminism, O’Reilly (2019) asserts:
“Mothering matters and is central to the lives of women who are mothers” (p.14).
She regards mothering as work that is valuable to society, whereby a mother’s voice, distinguished from just her role as a woman, needs to be heard, and is a source of social change.
Zibricky (2014) stresses the value of creating stories of motherhood that are from the perspective of the individuals living through them, versus the observer, to uncover new knowledge about the culture of motherhood. It is critical to talk about the lived experiences of mothers and illustrate that mothering is dynamic, with care transforming based on changes within the family system. Though my story is an individual one, it has broader implications for healthcare, public policy makers, social systems, the workplace, practitioners who work with family caregivers, and mothers who are also caregivers for other family members.
Autoethnography and corresponding relational ethics:
Autoethnography has been described as a genre of writing and research that connects personal experiences to cultural contexts and societal phenomena (Ellis & Bochner, 2000; Wall, 2006). Qualitative in method, it takes on many forms, including personal narratives (Bochner & Ellis, 2022; Ellis & Bochner, 2000; Walls, 2006), and serves to examine self-experience in relation to broader life-events (Edwards 2021). With writing of this nature, the details of others become intertwined with one’s own story. Considering this article mentions rare medical conditions and other possible distinguishable variables, complete anonymity of the individuals spoken about is not guaranteed. To address this ethical issue, I tried to omit anything nonessential to the main arguments. While I grappled initially with whether Institutional Review Board approval was needed, in the end, this account represents my perspective, and Ellis’ (2007) guidelines, along with considerations Edwards (2021) raises about precautions when writing about others, was followed and deemed sufficient. With respect to the privacy and dignity of the family members involved, I avoided language that portrays them in a helpless or belittling manner. I discuss many more particulars about my brother and mother than my son and daughter to highlight compounding caregiving roles. As such, I did not think the consent of my children was necessary. Though my brother is deceased and cannot give consent, verbal consent was received from my mother to represent her the way I do.
Caregiving Identities
Caregiver to my children:
I have two children: a 17-year-old boy with attention deficit hyperactivity disorder (ADHD), combined type, and on the autism spectrum, and a neurotypical 13-year-old girl. Both keep me busy, but my son’s needs exceed what falls under traditional parenting duties, and it has been that way throughout most of his life. Like the mothers in Steiner & Fletcher’s (2017) research, I question whether I should say I am caregiving for my son versus parenting him, but caregiving is described as any extraordinary care that is beyond usual and normal, and aspects of ADHD and autism spectrum fall into this category. ADHD is a chronic disorder diagnosed in childhood that creates academic and social struggles, including impulsivity, difficulty initiating and executing tasks, distractibility, keeping on track at school, making friendships, and following rules (American Psychological Association [APA], 2022). Autism spectrum disorder has been defined as:
any one of a group of disorders with an onset typically occurring during the preschool years and characterized by varying but often marked and persistent deficits in social communication and social interaction, including difficulties with social-emotional reciprocity, nonverbal communication behaviors, and social relationships, along with restricted and repetitive patterns of interests, behaviors, and/or activities (American Psychological Association, n.d.).
These diagnoses create major sources of stress for families beyond normal parenting practices (Corcoran et al., 2017; Goodwillie, 2014). Perhaps it is most useful to think that caregiving can be a component of mothering, in the same way that there is mothering in caregiving.
With my son, care labor over the years has gone beyond the typical and into the chaotic world of special needs. His challenges lead to much more hand- holding, structure, and vigilance compared to children without these disabilities. In addition to the hardships that parents face, siblings are affected. They may either start acting out maladaptively (Kendall, 1999) mimicking their sibling, or in a way that tries to protect the sibling (Powell, 2002, as cited by Robinson, 2003) due to the affected child’s immaturity. With ADHD (Chang & Gau, 2017) and autism spectrum disorder (Molinaro, 2020), the literature further points to how the sibling gets less attention, since they fall into the background of the harried environment. Overall, these factors create increased tension in the household, making family life exhausting over the years and leading parents to feel unrewarded and ineffective, even though they are consistently working hard (Corcoran et al., 2017).
Caring for my son has been a long journey marked by an array of stressors, goal setting, setbacks, turmoil, achievements, and occasional triumphs. There were many steps along the way including getting him assessed and diagnosed, understanding his diagnoses, determining appropriate medication and routines at home, navigating through individualized education plans and accommodations at school, and managing the struggles I faced with the social isolation from other parents. While doing this care work, there are deeper constraints politically in terms of mother blame (Blum, 2007; Rose, 2015) and judgment cast on mothers in our society, particularly for children with learning disabilities (Valle, 2018; Zibricky, 2014). I’ve had to fight through all of it and am pleased to say that I am a stronger and more educated mother than when I began. But the caregiving work is far from done. ADHD has been linked with academic under-achievement (Barkley, 2006 as cited in Chang & Gau, 2017) in addition to occupational under-achievement, greater likelihood of using alcohol and drugs, reckless driving, and inability to manage intimate relationships (Goodwillie, 2014). My son graduates from high school soon and needs to prepare for the next steps regarding part- time work and college, and my daughter will be preparing for high school. These are important years with many upcoming milestones and a wide range of guidance that I must provide. I’ve had to balance the multitude of these child-rearing tasks with the demands of caring for my mother and, in the recent past, the care of my brother.
My reproductive identity has been integral to my adult identity. I’d never given much thought to aspects that tied into becoming a mother, but I always knew I wanted to have children. I witnessed my mother and grandmother doing it, always loved children, and am overjoyed seeing my children grow and having an attachment to them. However, the journey into motherhood came with delays. Athan (2020) describes several macro-level factors that contribute to reproductive identity development, such as postponed entry into parenting. First, I got married somewhat later than several of my same age friends and relatives. When my husband and I were ready to have children, we then spent time pursuing genetic counseling considering my family history. And it is critical to note, that my brother was the second sibling in my family to lose a life from this disease, as my younger brother died from the childhood onset variant when he was a toddler. With my second born child, I then experienced secondary infertility which meant that I became a mother at an older age than originally envisioned. This makes the balancing act more pronounced since having children at an earlier age may have meant less “sandwiching” than what is occurring presently. I have found that the only way to navigate through this is by focusing more on my children some days, while on others, I have focused more on my mother or brother, without striving for perfection and giving myself grace, when possible.
Caregiver to my sibling:
My brother was a middle- aged adult when he died two years ago from respiratory failure. He aspirated due to sudden complications with speech and swallow–one of many health problems caused by his rare, neurological disease. His disease began with numbness in his feet when he was in the prime of adult life, and he then gradually had neuropathy and difficulty walking. The negative health effects existed for approximately 10 years with increasing intensity until the last four years of his life as symptoms progressed to a complete loss of mobility in his lower extremities, and cognitive problems. He moved back into my parents’ home when he lost the ability to manage stairs in his apartment, lost his job, and he and his wife formally separated. My husband and I were the sole individuals responsible for that move, and it was a huge undertaking since we had full-time careers and young children.
Caring for my brother occurred in stages. The literature (Avieli, 2020; Coyle, 2014, as cited in Avieli, 2020; Pillimer & Suitor, 2014) reveals how as parents age within the family, adult siblings get looked upon to provide support for the person with the disability. My parents took on the initial care when my brother was confronted with his first functional limitations. He was trying to hold on to his pre-disease life and adapting to new challenges the best way possible but during the time living with my parents, he became a wheelchair user and required the help of a Hoyer lift. It was at this juncture that I began caregiving. After the move, my next step in this role was securing formal, paid caregiving and, although ultimately successful, it was tedious.
Around this same time, my father became ill and died from complications due to dementia. My mother shouldered a great deal of the caregiving for both my brother and father in my father’s final months, and it was an ordeal as my father required twenty-four hours of care. She and I sought formal caregivers for my father and brother, and for a period of about six months, there were two caregivers in the home: one for each of them. My mother faced her own increasing physical health problems at this time and this, together with the anguish of witnessing her spouse and son decline, and the recognition that she may lose a second child, led to decreased capacity in her caregiver role. Avieli (2020) describes responsibility shifts from being in a helping position to taking on full responsibility for the sibling, and the torch was officially passed to me. I was at a crossroads at one period where every family member, with the exception of my spouse, needed me: my father, my brother, my mother, and my children, and life felt immensely heavy and overwhelming considering my children at this time were in very formative years of development, at only 12 and 8 years old. Compound caregiving may be one of the most demanding life situations caregivers ever have to contend with (Perkins, 2010), with numerous scholars (Bevans & Sternberg, 2012; Lee et al., 2020; Osilla et al., 2025) acknowledging the intense burden of multiple roles, especially as much of it falls on women (Almeida, 2026).
There were a myriad of physical and emotional tasks involved in my brother’s care. While he was still somewhat independent, there was a great deal of “provisioning work” (Neysmith et al. 2012), the gathering and coordinating of resources. In this regard, physical labor included phone calls to apply for programs such as Medicaid, assisting with transportation needs and the purchase of equipment to make his living environment accessible (including the oversight of bathroom and backyard renovations), obtaining occupational and physical therapy services, coordinating follow-up care after hospitalizations, and managing legal issues such as the preparation of living will and power of attorney documents. Providing sustained emotional support is an entity of its own that does not get the attention it warrants. In their research on sandwich generation caregivers, Steiner & Fletcher (2017) discuss the stress of emotional care and being a sounding board. I found myself in the role of quasi-psychotherapist for the unloading of negative emotions my brother experienced. There were ongoing losses, and a particularly hard aspect of his care was balancing the preservation of his independence and integrity, while also ensuring that he was safe, and talking to him realistically about his limits, which meant assuming control over facets of his life such as finances. I was balancing these tasks while also trying to create an enriching life for him.
As my brother’s health declined, roles shifted to include much more direct care and close monitoring of his functional status. There were many crises including falls and times when aides called out sick and I had to drop what I was doing, including leaving work, to care for him and/or find alternate coverage. Leane (2019) talks about conflicting feelings of tension and reconciliation between the willingness to provide care and the feeling that one has no choice but to do it out of love, as well as a sense of responsibility and duty. I felt this deeply, caring for him from my heart and trying not to view this role as an obstruction (Avieli, 2020), but wondering how I got into this situation. No one asked me to do it, but he had no one else, and I stepped in from a place of empathy, loyalty, and the need to protect him; perhaps elements of mothering I was already performing with my own children. A particularly draining experience was when he had serious pressure ulcers following a three month stay at a skilled nursing institution for rehabilitation. Treatment required prolonged hospitalization at a facility specializing in hyperbaric oxygen therapy and his cognitive decline made advocacy for his own care compromised. As such, I was visiting him a few times weekly, continuing to support him emotionally, and verifying that he was getting the treatment he needed.
In examining adult siblings of those with intellectual disabilities, Hwang et al. (2025) expounds on the hardship of balancing care for one’s own family with the sibling who has the disability. When I reflect on that time, I don’t know how either one of us got through the stress. He was isolated in a hospital room for several months, and I was shuttling one hour each way between home, work, and hospital, with cumulative expenses from gas and tolls, along with hours of time spent away from my family, spread extremely thin.
As time went on, I was assisting my mother from afar and ultimately my husband and I made the decision with her to sell her house and buy a two-family home where we would all live together. This move involved not just the physical labor of dealing with my own belongings–a task in itself, but all their belongings. It was an enormous undertaking, and my spouse and I were packing and unpacking endlessly, while also ensuring the new home was accessible. In the end, we lived with my brother for only five months before he died. I like to think he was at least comfortable and that I provided the best care during that window, touching his life for the better.
In processing all of the intricacies in the years taking on such a high level of care for him, I realize the emotional toll it took. Similar to the research of Hwang et al. (2025), guilt was experienced when wanting to be with my immediate family. In fact, I felt guilty about several things: being able-bodied, having more of a social life, and eventually being the one who got to live. Avieli (2020) notes that given the stress that parents are under when there is a disabled sibling in the family, healthy sibling caregivers have an obligation to keep parents happy and bring a sense of vitality to their life. That pressure was also intense and felt like a part time job, and I was trying to keep my brother happy too. There were days when I felt like the “lucky” one in the family, meant to live a long, prosperous life. But then I was hit with anticipatory anxiety that since I had lost two brothers, perhaps I was meant to have the same fate. While I fortunately tested negative for my brother’s disease, waiting for the results was extremely worrisome. As the literature (Avieli, 2020) indicates, however, emotions change from frustration to gratitude for the opportunity to take care of the sibling. She notes:
It is not possible to sum up the siblings’ experience as good or bad, hard or easy. Rather it is a complex emotional journey in which caregiving and other more burdensome roles are intertwined with uplifting experiences to form family life. (Avieli, 2020, p. 641).
Studies show that healthy siblings could derive a sense of satisfaction (Findler & Vardi, 2009, as cited in Avieli, 2020), as well as pride from caregiving (Stoneman, 2005, as cited in Avieli, 2020). While not specifically focused on siblings, Anderson and White (2018) point to other positive components of caregiving when there is serious illness in the family: the reciprocal nature when patients try to reduce the burden on loved ones by expressing appreciation and contributing in meaningful ways, along with how caregiving creates a legacy, teaching future generations about family values. With respect to the latter, I found myself modeling pro-social behaviors and kindness, telling my children that this is what family does for one another. Putting this all together, I feel humbled to have engaged in this care for my brother.
Caregiver to my mother:
My mother is in her eighth decade of life. If you had asked me a few years ago if she’d still be alive today, I would have said no. I base this on various exacerbations of her numerous medical conditions: lung disease, congestive heart failure, irregular heartbeat, pulmonary hypertension, spinal stenosis, pre-diabetes, pulmonary embolisms and, more recently, sudden, involuntary muscle jerks that make it hard for her to ambulate steadily. She is generally deconditioned and last year she fell, fracturing four ribs. The combination of these physical problems, paired with declines in memory, has led to the requirement of some level of supervised care. My mother was independent her entire life and assisting her was minimal until about one year ago. Care started with some oversight around her medications and driving her to appointments or helping her schedule them with accessible transportation when she went alone. Once my brother died, her health became more impaired and, subsequently, I was helping her more elaboratively. With no other close relatives and my brother and father deceased, I became the primary person involved, jumping rapidly into her care.
In the past three years, she has had an excessive number of hospitalizations and skilled nursing facility admissions for rehabilitation upon discharge. For the past year, she has been receiving occupational and physical therapy in the home along with short-term visiting nurse services. Her specialists include a primary care physician, pulmonologist, cardiologist, heart failure specialist, geriatrician, neurologist, and movement disorder provider. My mother always wanted to be independent in her home, without assistance. However, as my work-life-family balance suffered and her safety was being compromised, she agreed to receive help. Currently, she receives care from a certified home health aide 28 hours per week. She takes a host of morning and evening medications, including inhalers and nebulizer treatments, relies on oxygen episodically, and must have her blood checked weekly. Each day, I must conduct tasks such as overseeing her oxygen and blood pressure readings, prompting her to complete breathing exercises, ensuring medications have refills, reminding her to use her walker, checking her skin integrity, and pushing her to eat and drink enough to prevent malnutrition and dehydration.
I also assist with her activities of daily living such as getting dressed when this does not fit into the morning routine with her home health aide. Aside from my mother’s direct care needs are all the indirect tasks I complete from work, on my drive to work, at my son’s baseball games, or on a walk that I try to fit in as part of self-care, including calls to extended family members to fill them in on her health. Most stressful about my mother’s care, as the literature supports (Bevans & Sternberg, 2012; Osilla et al., 2025) are aspects of unpredictability. Sometimes just when I have a good grasp on her needs, her status changes. Due to the progressive nature of her health problems, she shifts from stability to being in an acute crisis quickly. I may think she is ready to start her day with breakfast and coffee only to realize that she is in a state of temporary delirium because she developed a urinary tract infection. I find myself in the role of nurse, trying to assess the pressing issue at hand. However, I am not medically trained and find it highly anxiety provoking to be unable to accurately detect if her chest pain is part of a normal common cold, or perhaps pneumonia and whether I must call 911. We no longer rely on urgent care because the last attempts made there resulted in being directed to the hospital. While I understand this need, we prepare ourselves mentally that it can be a two- day ordeal waiting in a crowded emergency room. I also start to feel overwhelming dread at these times as I know this will take me away from care for my own children, work, and established routines at home.
In her sample of individuals involved in compound caregiving, Perkins (2010) found they faced great difficulty prioritizing caregiving demands, with normal family functioning derailed, even following a halt in the caregiving duties. When my mother has acute crises, I no longer have time to help my daughter with homework, make dinner for the family, or tend to my son’s age-appropriate priorities. Her needs become front and center because they are often life or death. I find that even when the hecticness subsides, or I get brief respite while she is in skilled nursing for rehabilitation, it takes time to recuperate. It is critical to note here that I am referring to “normal” parenting that I am trying to maintain, versus intensive mothering (Hays, 1996) or “good” mother ideals. In their work with female sandwich caregivers (Steiner & Fletcher, 2017), a central theme was that there were not enough hours in the day. Studies show that caregivers can spend anywhere from 31 (Duxbury et al. 2009, as cited in Steiner & Fletcher, 2017) to 40 hours per week (AARP & National Alliance for Caregiving, 2025) completing caregiving tasks.
Trying to provide quality care for my family when someone else is dependent on me is an arduous process. And it should be noted that this someone is not just anyone; she is my mother, a mother who loved unconditionally and sacrificed endlessly, and deserves to be cared for in this reciprocal way. My mother took care of my children when they were young and my mother took care of her mother, as well. She has stated clearly over the years how she would not want to be placed in permanent institutional care and I am trying to honor that wish. In Hwang et al.’s (2025) research with sibling caregivers, many siblings believed institutionalized care was not appropriate for their disabled sibling and would not place them in such a setting. My mother acknowledges how hard it is for me some days, especially since I have been caregiving for a long duration of time. These words of acknowledgement, while not necessary, are validating. But the question remains, if I wasn’t taking care of her whether due to my own health issues, inability to have flexibility at work, or unwillingness to sacrifice my economic potential and career ambitions, then what would happen? There would be no choice but permanent institutionalized care or unsupervised care while she remained at home. In my full time role in academia, I have some flexibility, but we know that tasks still need to be completed, and that the flexibility can also be our demise. So instead of checking student emails in the afternoon as part of the “work day”, I find myself working in the early midnight hours, with a resulting lack of sleep.
For the past four months, I have been trying to obtain an increase in formal care hours for my mother. I have gathered notes from doctors and discharge summaries from hospitalizations to build a case. To date, she has been denied twice and I have made appeals. Caregivers spend a large number of hours in these advocacy tasks, and they deplete time and energy. My children help when they can and in whatever way they can, but there comes a time when we just need to talk about something other than healthcare. When we are in the car together, we want to talk about their lives and simply enjoy each other. We also need time to schedule their appointments, tutoring for their academic work, and a variety of other things specific to them. Instead, sadly, they often sit quietly while I am on the phone navigating through the health care system. In this regard, my caregiving needs negatively impact the joyful aspects of my maternal identity and diminish the vibrancy of my mothering role.
The literature speaks to a loss of the pre-caregiving self (Eifert, 2015 as cited in Osilla et al., 2025) and transitions in roles (Donorifo & Kellett, 2006; Steiner & Fletcher, 2017) leading to altered relationships within the family. In this case, my mother’s needs place my role as daughter in the background and caregiver in the foreground (Donorifo & Kellett, 2006), which I am still adjusting to. Also complicated is the premature mourning of the mother she once was because she is too ill to take part in activities I once engaged in with her, such as vacations. Moreover, there is no time left in the day for pleasurable tasks or the social intimacy she may crave or that creates emotional bonding like playing board games because all hours in the day go to more urgent caregiving tasks. So despite my best efforts in some ways, there is still no win.
Conclusion
This article examines the intersections of three caregiving identities to highlight the work we do not only as mothers to our children, but to caring that extends over the lifespan to others who depend on us. In discussing how vast these roles are, my aim was to demonstrate the complexities of mothering and the resulting crises that could occur in families, and to make the invisible labor more visible. Twenty-nine percent of adults in the U.S. serve as family caregivers for a relative who is ill or disabled (AARP & National Alliance for Caregiving (2025), but gendered expectations create a situation where most are female. Like myself, these caregivers are managing multifaceted medical needs that once would have been handled by professionals. This strongly affects the emotional health of caregivers and these effects accumulate with longer periods of care (Pavalko & Woodbury, 2000). Pavalko & Woodbury (2000) note that the average duration of caregiving lasts two years or less, though Perkins (2010) shares that care for a family member with serious illness could last much longer. My story is substantive in documenting prolonged caregiving, as I have been doing it consecutively for six years.
Informal caregiving is commonplace, but there are still gaps in the literature. Research examining sibling caregivers has focused on relationships during childhood and adolescence and less on adult siblings (Lee et al., 2018), with few studies looking at middle-aged siblings (Coyle, 2014, as cited in Avieli, 2020). Most sibling studies also focus on intellectual and developmental disabilities (Avieli, 2020; Hwang et al., 2025; Lee et al., 2020) or mental illness, with limited emphasis on progressive, rare physical disorders. Lastly, Pashazade et al. (2024) speaks about the need for more narratives of lived experiences. This article fills that gap.
What made caregiving the most challenging with my brother, and currently with my mother, is doing it predominantly alone, which speaks to adjustments that need to be made in the health system, and how society views populations such as the disabled, elderly, and children/teens who fall outside of the margins. Family caregivers are an integral part of health care (Bevans & Sternberg, 2022; Osilla 2025), filling in for broken systems and inadequate support. Caregivers need the attention of public policy (Perkins, 2010), and reliable social resources (Almeida, 2026), which could even include family, friends, or broader social networks (Pashazade et al., 2024). Viewing care-work as a public and social responsibility rather than an individual one, Tronto (1998) declares:
“Caring is greatly undervalued in our culture—in the assumption that caring is somehow mother’s work.” (p 16)
There are gendered expectations that come with caregiving. In their research on parenting children with ADHD, Climie & Mitchell (2017) demonstrate the gender inequities, showing that mothers of children with ADHD rate involvement in their children’s lives as higher than fathers. A nurse once told me that what I was doing for my brother was noble. Although what I was doing was not extraordinary, it could be better affirmed and regarded. Improved social structures need to be in place to better support families in these situations so that the care doesn’t fall on one person. Caregiving can serve a variety of functions such as providing a sense of purpose, emotional connection with others, and helping those most vulnerable. Tronto (1998) states that when there is good caring, people are better able to live in the world. Therefore, essentially, sustaining communities and society.
In times of heightened stress, I remind myself that I am privileged to be in a place where I can help. I’m grateful that I am in good health and caregiving has given me an immeasurable sense of competence. The learning curve has been steep, but caregivers experience personal growth, enhanced confidence, and relief that their family members are taken care of (Pendergrass et al., 2019, as cited in Osilla, 2025). Being a caregiver while mothering my own children has strengthened my relationship with all the individuals involved. In addition, we have met lovely home aides and health care providers on this path who have touched our lives, and I believe we have touched theirs. This is fulfilling. Athan (2020) describes reproductive experiences as lifelong. My framing of motherhood was narrow, but upon reflection, and expanding on Ruddick’s (1989) concept of maternal thinking, I understand mothering as a practice that reaches beyond childrearing, with somewhat similar responsibilities of care regardless of children, aging parents, or siblings. The caring practices she refers to such as preservation of life, and growth, seem to fit the caring practices I was engaged in with my brother and mother.
In sum, caregiving can be viewed as an extension of maternal identity, but it comes with substantial strain that may diminish one’s capacity as a mother and influence how she understands herself. In fact, as I try to complete the last revisions to this article, I am caring for my mother alone today, distracted by the constant stop and go of tasks. Her home care agency was unable to provide coverage, and in between working and caregiving, I’ve had to investigate why her insurance is failing to pay for a needed antibiotic to treat a current lung infection. If she continues with such severe shortness of breath, we may ultimately end up at the hospital, which seems fundamentally problematic. To say that caregivers are being pulled in many directions is an understatement, and figuring out how to prioritize demands is overwhelming when we are working alone. While we have no choice but to adapt to these situations, writing this article has raised my awareness on just how pervasive caregiving is and how these roles infiltrate maternal identity. In explaining autoethnography, Bochner and Ellis (2022), powerfully note:
We autoethnographers want our readers to get what many of us seek in our lives… a sense of connection and something we can feel deep in our guts and our souls (p. 15).
In keeping with this, and the mission of autoethnography to keep dialogue alive, help us live better lives, and sustain a more just world (Bochner and Ellis, 2022), it is my hope that my narrative resonates, allowing for collective thinking about how caregiving can be more sustainable, and reproductive identity as more communal. Mothers need to be recognized, supported, and valued within our society and culture in order for care- labor of this kind to continue.
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