Abstract
The expected trajectory of parent-child relationships—parents investing in children for decades before eventually requiring their support—can take different shape when children’s adult independence is constrained. Integrating the intergenerational stake hypothesis with the concept of generational maturity, this study explored one such case: how mothers of adult children with disabilities and other conditions requiring extensive care experienced and/or anticipated the later stages of their parenting journey. A thematic frame approach organized analyses of interview data from 72 mothers of adult children (82% whose children had serious conditions, mean age = 57). Mothers expressed grave concerns about their future deaths, focusing on who would care for their children, and tried to cope with their anxiety and guilt by concretely planning for their deaths and their children’s futures. Some worried that their children might die first, including what their own lives would look like absent this closely identified maternal role.
The intergenerational stake hypothesis is that parents are more invested in and identify more with the parent-child relationship than their children. Just as life course approaches have helped to recast parenting as a lifelong career, this stake is increasingly viewed as evolving as parents age through adulthood and children develop into adulthood (Giarrusso, Du, & Bengsten, 2004). Even as parents move out of the most intensive stage of parenting and their children achieve more independence, they maintain a strong identity as parents and powerful motivation to protect their adult children. Consequently, when parents enter their later years and the specter of health limitations and death emerges, they and their children often face great anxiety as they try to renegotiate this historically imbalanced relationship, accept their changing positions of responsibility and dependence, and revise their sense of obligation to varying degrees of “success” (Birditt et al., 2015; Cicirelli, 1988; Shulman, 2005). This life course process of a dynamic intergenerational stake and resulting family anxiety can be more complicated for some (Fingerman et al., 2012), when personal and social circumstances interfere with the normative shift from the most active period of parenting (i.e., of young and dependent children); the need for support and investment in children does not gradually decline; and fears about parental death reflect different concerns.
Consider the growing number of American parents who have raised children with disabilities and other serious health conditions into adulthood. For such parents in mid to later life, their children may be in a prolonged state of dependence; they may need to maintain a higher than expected level of financial support for longer periods; and fears about their own deaths can be coupled with fears about their children’s deaths (Baumbusch et al., 2017; Byram, 2018; Gengler, 2020; Houtrow, Valliere, & Byers, 2018; Song et al., 2016). How do such parents think about their identities and responsibilities when normative expectations about adult children’s autonomy and the eventual transition from child care to parent care are less realistic and when the prospect of parental decline triggers anxieties about who will support children rather than the parents themselves? How do parents prepare—emotionally and instrumentally—for this “end stage” of their parenting careers and look to their children’s futures without them?
This study explored this particular psychosocial strain for aging parents of adult children with developmental disorders, physical disabilities, chronic illnesses, and other serious conditions through interpretative analyses of interview data from 72 mothers (60 whose children had such conditions, 12 whose children did not). They reflected on raising their children—challenges and rewards, supports and obstacles—from birth into adulthood. Even though the semi-structured interviews did not explicitly prompt them to consider death, a large number did. What they revealed speaks to the specific case of raising children with serious conditions but also sheds light on the inherent variability in parenting over many decades, the evolution of intergenerational relations, and the legacy that parents leave for their families.
Exploring the Life Course of Parenting
This study threads together the intergenerational stake hypothesis, which recognizes the enduring ways that parenting practically and emotionally organizes people’s lives even when their children have grown up, and the concept of generational maturity, which emphasizes how family members learn to deal with new anxieties and accept new realities as parents get closer to the end of their lives. Both conceptual traditions concern the widely expected dynamics of the parent-child relationship that encompass far more variability in the real world and often can be far messier (Birditt et al., 2010; Neuman, 2024).
First, the intergenerational stake hypothesis is that parents are more invested in their children than their children are in them and more identified with the parental role than their children are with the child role. It reflects mismatched developmental tracks across generations. When parents are in stages that motivate greater solidarity, their children are in stages that motivate more autonomy, creating tension between parents’ tendency to see children as continuations of themselves and children’s desire to establish themselves as their own people. As a result, parents view their children more positively, perceive their relationships with children as closer, and are more likely to avoid or downplay family issues. These feelings and actions promote parental wellbeing; are threatened when adult children have behavioral, economic, and other problems; and intensify with parents’ age. Overall, this stake, typically stronger for women, illustrates the developmental and evolutionary drive parents have to care for their offspring and ensure their survival (Bengtson et al., 2002; Birditt et al., 2015; Giarrusso et al., 2004).
Second, generational maturity is an endpoint of the gradual reshuffling of parent and child roles as parents get older and children become adults. For most of the “life” of this relationship, parents view caring for and supporting their children as their major responsibility, and children depend on their parents in concrete and abstract ways that, paradoxically, bind them to their parents while encouraging them to individuate. As the prospect of parents’ declines becomes real, adult children leading more independent lives start to feel anxiety about the possibility of having to take on responsibility for parents and not being able to rely on them. Their parents’ anxieties are that they will be a burden to their children, reversing the “natural” order of parent-child relationships. The healthiest resolution is children’s gradual acceptance that they can take over responsibilities from their parents and give back what they have long received from them and parents’ gradual acceptance that they can depend on their children while maintaining their parental identity and sense of dignity (Cicirelli, 1988; Morais et al., 2019; Perrig-Chiello & Höpflinger, 2005; Shulman, 2005).
Our conceptual model connects these concepts (Figure 1). It views parents’ investment in their children and identification with parenting as they age (consistent with the intergenerational stake hypothesis) and the intergenerational anxieties that come with parents’ anticipated or real declines that lay the groundwork for renegotiated relationships and identities (consistent with generational maturity) as challenged by circumstances in which children’s potential to achieve autonomy and support others is lower. In such circumstances, the intergenerational stake may become more pronounced as parents (especially mothers) get older, and the anxieties that can facilitate renegotiation and acceptance are more likely to trigger parental efforts of control. Conceptual Model of Study
Focusing on Mothers of Children with Serious Conditions
How might this connection between the intergenerational stake and generational maturity be contextualized within the challenging circumstances facing aging mothers who have spent decades raising children with disabilities and other serious conditions?
In the U.S., mothers bear primary responsibility, on average, for the care of children with serious conditions, even when partnered. They are at risk for financial hardship, time binds, isolation, self- and social criticism, physical strains, and emotional stress, but they also can derive great fulfillment from mothering, strongly identify with their maternal role, and be viewed by others as particularly “heroic” cases of motherhood (Billen, Sans, & Nordquist, 2022; Gengler, 2020; Reichman, Corman, & Noonan, 2004; Schwartz, 2003). As children with serious conditions live longer, mothers increasingly balance the cumulative rewards and demands of mothering with age-related changes in their personal capacities, social circumstances, and other family caregiving demands (Byram, 2018; Cha & Crosnoe, 2022; Janus, 2009; Seltzer et al., 2009; Song et al., 2016). Following the general literatures on intergenerational relations and raising children with disabilities (Birditt et al., 2010; Hogan et al., 2012; Raap et al., 2025; Shulman, 2005) and the more specific literature on aging parents of children with intellectual disabilities (Baumbusch et al., 2017; Neuman, 2024; Reyna & Ranney, 2021), we posit three ways this connection might be complicated among this growing number of American women.
First, the “stakes” of the intergenerational stake could intensify (Birditt et al., 2015; Shulman, 2005). As adult children with serious conditions age out of services, their mothers become increasingly responsible for providing their needs-based care, potentially intensifying their feelings that serving their children is their defining purpose. This increasing investment in and identification with the parent-child relationship is not simply a question of solidarity or meaning-making but necessity, especially if mothers have (or think they have) no one to help them (Byram, 2018). This bind between their emotional connection to mothering and their real or perceived lack of assistance in mothering could be amplified through self- and social comparisons with mothers whose adult children have transitioned into more independent lives. Without reconciling that bind, mothers are at greater risk for feeling the wear and tear of aging while caring for an adult child with serious conditions (e.g., exhaustion) and less fully realizing some of its benefits (e.g., ongoing companionship) (Neuman, 2024; Reyna & Ranney, 2021). Thus, the intergenerational stake may be experienced more negatively among such mothers as they feel this bind tighten.
Second, intergenerational anxieties about parental decline are likely to be recast. Rather than concerns about how their adult children will take responsibility for them, mothers may fixate on who will support their adult children in their actual or relative absence. In this scenario, generational maturity would be more about how much mothers can accept that someone else will need to care for their children when they no longer can (Kruithof et al., 2022). Just as filial anxieties do not lead to generational maturity solely through acceptance of what the future may hold, mothers who have accepted this impending reality likely differ by how they respond. Past research on mothers of adult children with intellectual disabilities, for example, suggests that many do not start planning for their children’s care because the task is so daunting or they do not know how; others focus on present-day actions (e.g., emphasizing socioemotional over instrumental support, connecting their children to others); and a minority engage in concrete forms of future-planning that vary considerably in effectiveness (Baumbusch et al., 2017; Lindahl et al., 2019; Reyna & Ranney, 2021). Thus, for older mothers of adult children with serious conditions, the focus of generational anxieties can flip from adult child to aging parent in ways that complicate steps towards generational maturity.
Third, mothers’ anxieties about their deaths could be amplified by anxieties about their children’s deaths. Certainly, mothers of a diverse array of ages and contexts worry about losing their children, but those fears are more immediate when children have serious conditions, especially severe conditions with shorter life expectancies (Kaçan et al., 2022; Raap et al., 2025). While such mothers likely face the aforementioned anxieties about who will care for the adult child if they no longer can, these anxieties could be interwoven with—not removed from—their fears of losing an adult child, the grief that would bring, and changes in a life that has been heretofore organized around mothering that child. Thus, the generational stake felt by aging mothers of adult children with serious conditions likely requires attention to death in both generations before any level or form of generational maturity can be reached.
Integrating these three possibilities, mothers of adult children with serious conditions could grapple with a variant of the normative life course trajectory of parenting. This variant is less about letting go and more about maintaining some control, less about shifting care from parent to child and more about finding other means of fulfilling that caring role even when gone.
Study Aims
Following this connection between the intergenerational stake and generational maturity, this study explored how mothers at mid to later life thought about their long-term parenting of children with serious conditions. Three emergent themes considered how mothers viewed their parenting experiences as they aged; made sense of the impact of their own inevitable health declines on their children’s futures; and grappled with the possibility that their children might die first. Across these themes, we paid special attention to how experiences might be harder when children’s independence was even more constrained (e.g., they required full-time care), mothers’ ability to meet the needs of their children was even more challenged (e.g., they were struggling economically), and the availability of help was even more limited (e.g., mothers were unpartnered, children had no adult siblings).
Methods
Sample
The focal sample of this project (2024-2025) included 60 mothers (primarily in Texas and the southwest) of children 18 and older who had developmental disorders, physical disabilities, chronic illnesses, or other serious conditions, such as cerebral palsy, autism, and Down Syndrome. Later, we interviewed a small comparison sample of 12 mothers of adult children without such conditions to further contextualize the focal mothers’ experiences.
Recruitment began through Texas nonprofits serving parents of children with disabilities. We used a screener survey to identify eligible mothers for interviews, filling cells by marital status, education, and race/ethnicity. Recruitment of the comparison mothers followed the same process with Prolific, with the goal of creating a small sample for a manageable number of new interviews but with at least some representation across diverse sociodemographic categories (Douglas, Ewell, & Brauer, 2023). Mothers received $80 compensation.
Description of the Study Sample
Note. In the sample of mothers whose children had serious conditions, the average age of the focal child with serious conditions was 25, and three-fourths of the mothers also had at least one other child besides that focal child. In the sample of mothers whose children did not have serious conditions, the average age of all children in the family was 31, and two-thirds of the mothers had more than one child.
Data Collection and Analyses
With informed consent, mothers completed one-hour virtual interviews with one of the two lead authors. Recordings were transcribed, de-identified, and pseudonymized. All data materials were securely stored.
In-depth semi-structured interviews gave mothers an opportunity to detail their thoughts and feelings, including sensitive topics, and allowed them to guide the conversation while ensuring consistency across interviews (Small & Calarco, 2022). After an introductory period, we went through three sections focusing on mothers’: 1) personal journeys across life; 2) perceived rewards and strains of mothering over time; and 3) supports and challenges in their relationships, communities, and broader policy contexts while raising their children. Prompts encouraged mothers to talk about how parenting could be positive and negative, rewards and strains could be personal and social, and supports and challenges could be practical and socioemotional. Example questions included: “What are some rewards that you experienced in your parenting journey?” and “Can you think of any concrete actions or experiences related to your community that have proved to be challenging to you as a parent?” Data collection continued through thematic saturation.
As for reflexivity (Reich, 2021), one interviewer’s position as a female graduate student without children may have made some mothers feel comfortable sharing while others withheld. The other interviewer’s position as a middle-aged professor and father of two young adults likely influenced interviews in different ways. Both interviewers maintained reflexive awareness throughout to acknowledge how their position may have influenced what mothers shared. Throughout data collection and analysis, the research team engaged in ongoing discussion to ensure that findings were grounded in mothers’ lived experiences, not researchers’ assumptions. Regular debriefs helped maintain fidelity to the data and minimize interpretive bias.
Transcripts were collaboratively coded in Dedoose by the two interviewers and two undergraduates who had been trained in qualitative data analysis and ethics and had engaged in pilot-coding. Our analytical frame combined inductive and deductive approaches (Deterding & Waters, 2021). We identified some broad themes prior to coding, such as caregiving strain and social support, and allowed others to emerge. For example, “Emergent Strains” was a subset of “Parenting Strains” to cover aspects of parenting that troubled respondents but were not initially prioritized through a prior review of theory and research (e.g., unfulfilled expectations). “Death and Dying” was created within “Emergent Strains” when it became clear that it was on the minds of many. At least two coders reviewed each transcript, and team members discussed coding discrepancies, refined and organized themes, highlighted exceptional patterns, and explored how themes varied across family circumstances, children’s conditions, and other factors.
Results
Mothers’ Anticipation of their Deaths
If aging mothers of adult children with serious conditions thought about their deaths, what were their predominant feelings? Their own death was a recurring theme that cut across socioeconomic and racial/ethnic lines, was not confined to any one condition, and was absent from conversations with mothers of children who did not have serious conditions.
The predominant feeling was anxiety. Mothers worried about leaving their children and who would take on their care. For example, Mona—a married White mother whose 26-year old daughter on the autism spectrum required substantial care—shared, “My husband and I…are going to die someday, and she’s going to outlive us. This is what keeps me up at night.” In another example, Cecilia—a Latina in her late fifties whose 22-year old child was nonverbal—declared, “It’s the one instance where you don’t want your children to outlive you, because it’s scary to think when I’m gone, who’s gonna take care of her?”
Another common emotion was guilt. Many mothers felt they would let their children down by “leaving.” Anna, a single Asian-American mother in her fifties whose young adult daughter was on the profound end of the autism spectrum, demonstrated the common entanglement of anxiety and guilt that could seem worse without a partner. She realized that her parenting journey would not end until she died and that she had to think about “what will happen to her [daughter] after her [Anna’s] death.” She did not know who could provide her level of care, which led to her to “feel a lot of guilt about what place [she’s] leaving [her] daughter in.”
Mona’s husband was quite involved in their daughter’s care, so her death would not leave her daughter “alone”. Anna, however, had lost touch with her daughter’s father, so her anxiety and guilt was about failing her daughter without this important backup system.
Mothers’ anxieties and guilt did not focus only on who would step into their shoes if they were incapacitated or gone. Even if they could secure care for their children after their deaths (and, when partnered, their spouse’s deaths), they knew their children might suffer. Reagan, a Latina in her sixties whose 27-year old child had cerebral palsy and an intellectual disability, told us “It would really be unfair if…both of us passed away, and then all of a sudden, he’s lost his parents, has to move out of the home he’s been living in for years, and then everything changes all at once.” Some also worried about the grief their children would feel.
As the difference between Mona and Anna suggests, there was a marital divide in such anxieties. For single mothers, anxieties were almost existential in that they saw themselves as their children’s sole protection. Partnered women—primarily those married to their children’s fathers—still felt anxieties about future disruptions in care, but they took solace in the built-in protection their husbands could provide to help children retain some semblance of their past lives. The hidden downside of their marriages, though, was the possibility of their children losing two involved parents in short order. Notably, the mothers of children without serious conditions echoed this marital divide in their feelings about mothering and the valuable role that fathers could play, but, since they did not discuss issues of death and dying, we do not know whether that divide also applied to this particular aspect of mothering.
Worth stressing is that having a partner was insufficient for assuaging mothers’ anxieties and guilt. Most married mothers thought that their partners were trustworthy, especially when partnered with the child’s father, but some did not think their partners were up to the task. Consider Lexi, a White mother in her early fifties whose 20-year old son was blind and had physical and intellectual disabilities. She told us that her husband was incompetent and could not really be trusted to replace her. She even relayed one of his quotes to us, “If [Lexi] gets hit by a bus tomorrow, we [he and his son] are screwed.”
Importantly, no one we interviewed mentioned the self-focused fears that people could be expected to have about their deaths or ruminated on their own mortality. Instead, they focused on what their deaths would mean for their children, both practically in terms of care and emotionally in terms of loss.
Mothers’ Planning for their Deaths
How did aging mothers of adult children with serious conditions cope with feelings of anxiety and guilt about what their deaths might mean for their children? Although some seemed almost frozen, the prevailing response was action. Fearing lost control, they tried to exert control.
Martha, a married Black mother in her late fifties who had two young adult children on the autism spectrum who could not live independently, had learned about legal and financial steps that could be taken to protect her children’s interests and took them. “I don’t stress about it as much as I used to now that we’ve got the different paperwork in place and everything down like our retirement funds…if I didn’t have that, I would probably be here just biting my nails right now. But because we’ve put those kinds of things in place, you can breathe a little bit. If you don’t have it, then yeah you’re gonna stress…I mean, nobody wants to think about it. I’m not going to be here one day, but that’s the reality, that’s life, that’s the life cycle. So, yeah, just gotta do it.”
Other concrete examples included creating trusts, looking into group homes, and establishing legal guardianships. These steps are certainly more accessible to socioeconomically comfortable parents and perhaps more facilitated by marriage, but other mothers also found ways to concretize their children’s future arrangements—using online legal templates from advocacy organizations, setting up informal agreements with friends and relatives, enlisting guardians to specify in their wills. Sometimes, planning was about organizing the information the person taking over care would need. Sydney—White, mid-sixties, had a mid-thirties child with Down syndrome—did not care that others might think that she was over-organizing. She “still has a big binder in case something happens, so they know…call this person, call that person because it’s just really complicated.” These actions helped mothers, especially single mothers, alleviate some anxiety and guilt.
As Lexi’s experience suggests, however, some mothers were afraid that their planning might come to naught if the people they left in charge were not up to the task. Lexi’s view of her husband may seem harsh, but it was not uncommon even if not the norm. When mothers had carried the primary responsibility for their children’s care over decades, they justified such judgments. Some had come to “other” anyone else, whether that be a potential caretaker that they had enlisted, their own husband, or the child’s father.
As alluded to above, mothers’ anticipation of and planning for their deaths could be “classed.” More educated, married, and/or higher-income mothers of children with serious conditions tended to be more concrete in their future-planning. They also had developed greater senses of efficacy in dealing with often hostile service systems, health care providers, and schools over many years, which translated into their more consistently concerted efforts to impose control on uncertainty. They also had access to attorneys and estate planners (or were one themselves or married to one) and simply had more actionable information at their disposal. While not sanguine about the costs of continued care for their children if they were to die, they were more comfortable than other mothers with the specter of those expenses. Less educated and/or lower-income mothers might not have secured legal or financial counsel, but they also demonstrated great agency, making special use of tools they could access (e.g., the internet, non-profit groups) and tapping into their networks of communal support. They faced clear disadvantages relative to their more privileged peers, but their basic drives were similar.
Beyond socioeconomic circumstances, one factor relevant to mothers’ planning was whether they had other adult children. Some mothers were motivated to take care of things without relying on the child’s siblings (“I do not want to burden them like that,” “I do not want to force their hand”), but many had no choice (“Unfortunately, I do rely a little bit too much [on my sons], which I really hate, but it’s very hard to find [help]”). Others brought in their other children and were clear they would one day take over. More advantaged parents voiced greater need to protect their other children, and, if they did bring them in, were clear that the siblings would have resources. One well-off White mother made her adult son move closer to home to begin taking on responsibility for his brother with an intellectual disability now that she and her husband were older, but everyone was aware of the money they would leave behind to support his brother’s long-term care. Another middle-class mother was paying her adult sons to provide care for her adult daughter with physical and intellectual disabilities because she wanted to bring them into the fold more concretely in anticipation of her and her husband’s future declines. Working-class parents had fewer options and were honest with their other adult children that they would have to step up. One single mother of a child with physical and developmental disabilities simply said that she did not want to do this to her other adult child but had no choice.
Most mothers we interviewed had children whose conditions were significant enough to prompt some degree of future planning, but we also saw that this planning was more active when children’s conditions required round-the-clock care. Strikingly, no mother of an adult child without a serious condition—who were disproportionately single in our sample relative to the focal mothers—mentioned any kind of concrete future-planning beyond the conventional ways that parents might discuss “setting up” their children when they died.
Mothers’ Anticipation of Children’s Deaths
Did other issues surrounding death come up in conversations with aging mothers of adult children with disabilities? Many—but no comparison mothers—dwelled on the child’s deaths.
For any mother, the death of a child may be a hypothetical dread. This dread, however, was firmly rooted in reality for mothers of children with serious conditions, especially when those conditions had an unknown or low life expectancy. Going back to Cecilia, the Latina mother of a nonverbal daughter with multiple disabilities, she dwelled on the uncertainty of her daughter’s future, which made her dwell on her own death. “They don’t know what her life expectancy is…so you just kind of hope your child does not leave you because it is a scary thing.” Cecilia was terrified that her daughter would survive her or predecease her and did not know which would be worse.
For many mothers like Cecilia, the uncertainty of her child’s life meant she could not turn away from the prospect of her child’s death. Some reframed this future possibility in the context of right now. Margaret—a White women in her early fifties whose adult son had muscular dystrophy—reminded herself to shift from the prospect of her child’s death to the triumph of his living. Even though she knew he would probably predecease her, she considered it a great success that he was still alive. “It’s one of these things, your child’s not dead, but you’re waiting for them to die. And it’s a horrible feeling. I mean, you go in there some days and you’re like is he alive today? And I have a camera on him, just so that when he moves I can feel better, that today is another good day.”
Other mothers anticipated that their children’s death might actually bring some relief. Layla—a White mother in her sixties whose son had significant physical and intellectual disabilities—told us that she knew that the only way her carework would end was “…if he died, you know that’s just the reality.” She was clear that she did not want to lose her son but also that, after three decades, she was tired of doing the hard work of caring for him and feared it would get harder as she aged further. Some mothers seemed to feel unburdened by not having to plan for their children’s futures, worry about their husbands’ capabilities, or lean on their other children to take over. There was a certain freedom in even such an emotionally devastating loss.
There were mothers who also spoke about grief over a different kind of loss—not just the loss of the child but the loss of being a mother. After so many years of mothering, feeling such devotion, and becoming so identified with their children, they found it hard to accept they would not be a mother anymore, especially that particular child’s mother. They foresaw an emptiness that might loom over their future lives.
Discussion
Connecting the intergenerational stake to generational maturity highlights the expected arc of parent-child relationships across decades—parents scaffolding their children’s lives until they eventually accept support from their children. This study explored variability in this arc by focusing on mothers of adult children with serious conditions who may never be able to achieve autonomy or take on responsibility for their aging parents, leading to a different kind of evolution in how they think about themselves and their children over time.
Our qualitative analyses highlighted three empirical themes. One concerned the tendency for aging mothers of adult children with serious conditions—and, notably, no mothers in our smaller and less diverse comparison sample—to dwell on their own deaths and what their deaths would mean for their children. When they considered a future in which they might not be around for their children, they felt anxiety and guilt. They did not ruminate on who would care for them when they declined but instead who would care for their children, with important differences by marital status. Another theme was that, when confronted with such feelings, mothers typically coped by concretely planning for their children’s lives after their deaths as a natural extension of the care they had been providing for years. Such planning was facilitated by socioeconomic resources, and it triggered inner-conflict about whether to bring in the adult child’s siblings. A final theme was that, for some mothers, thoughts about their own deaths often led to thoughts about their children dying, especially when children had more significant disabilities and never when they had no conditions. Some voiced fears of the unknown, others predicted that a child’s death might come with a sense of relief, and still others wondered what their lives would look like when mothering was no longer their central role.
In some ways, these themes confirmed reports from past qualitative studies of the aging parents of adult children with intellectual disabilities (e.g., Baumbusch et al., 2017; Neuman, 2024). These studies have explored how life-long dependence can complicate parents’ expected arc of a transition to having more independent adult children, how parents’ fears about leaving their children can be coupled with a sense that they are letting them down, how anxieties can lead to a recognition that planning for the future is important, and how this stage of parenting can mix positives and negatives. At the same time, these themes extend this literature by documenting how: 1) such experiences generalize beyond one set of disabilities to a range of conditions; 2) fears of death and decline concern both mother and child; 3) differences in the circumstances of the family (e.g., money, other children, marriage) and the child (e.g., severity of conditions) can create experiential variability, and 4) women’s anticipation of their own or their children’s death can facilitate important identity work about the maternal career. Importantly, this study also revealed a stronger connection than past studies between recognizing the need to plan for the future and actual planning, including a broader scope of concrete activities that used online resources and highlighted the role of non-profit organizations. In confirming and extending that past research, this study showed that aging with an adult child with serious conditions can: 1) intensify the intergenerational stake that most mothers feel by reframing their enactment of the maternal role as almost a life-or-death dividing line for their child that intensifies over time, which can then 2) create a different path to generational maturity that is more focused on the mother and is about coupling acceptance that they will not live forever with agentic action to prepare for that future reality.
Several cross-cutting points of discussion emerged from this exploration of the context-specific nature of the intergenerational stake and generational maturity, and we close with two. The first is that, although aging mothers were intensely focused on their adult children with serious conditions often at their own expense, their concerns about death could also be framed as being about themselves. These concerns most often were about how they inhabited the maternal role in a society where women are so defined by motherhood. Yes, they feared what would happen to their adult children when they died. At the same time, their guilt often suggested a self-perception that, by leaving their children behind, they might be failing as mothers and, furthermore, that only they could give their children what they needed. Similarly, when they considered the realistic possibility that their children might predecease them, top of mind for some was what they would do and who they would be when they no longer were mothers (if the child with serious conditions was an only child) or when they no longer were mothers of a child in need (if they had other children). They seemed to be in the early stages of identity crisis. To be clear, they almost always put their children first when considering the future, but that did not mean that they also did not think about what that future would mean for them.
The second point of discussion was that, when mothers felt disempowered, they tried to take back some sense of being in charge of their lives. Over the years, they had adapted to the challenges of raising children with serious conditions by seeking information, making contingency plans, networking, and trying to impose order where they saw potential disorder. When faced with the uncertainty of a future when they might no longer be able to look after their children’s needs, they returned to these actions. They created a paper trail of legal documents, financial arrangements, and personal agreements that could stand in their absence. They did not always have trust in others (sometimes even their spouses) to take care of things for them, so they looked to failure-proof the continued care of their children. Other mothers did not try to exert control on a potentially scary future through planning but instead reframed their lives and relationships with children in the here and now. They were motivated—actively, not passively—to make the most of their time with their children, which calmed their fears.
There is more to do in this line of research, including but not limited to bringing in the perspectives of fathers (see Boyd, Iacono, & McDonald, 2019; note: we did collect some information from a small comparison sample of fathers that we have not discussed here but will in future work). As things stand now, though, these points of discussion intersect to paint a portrait of aging mothers of adult children with serious conditions who were wary but clear-eyed about the future, prioritized their families without losing sight of themselves, felt both defeated and empowered, and mixed anxiety about what they might not be able to do with pride in what they had done. As children with serious conditions live longer and the aging population grows, the number of mothers with such experiences will increase. Understanding their (variable) challenges at this stage of life is equally important as understanding the challenges of younger mothers of young children with serious conditions who have received far greater attention in research and policy. Doing so would illustrate the broader significance of understanding the exceptions to the expected arc of evolving parent-child relations in parallel to studies of families who more closely fit the rule.
Consent to Publication
Respondents gave written consent to conduct the study and publish the deidentified results of the study before their interviews were scheduled.
Footnotes
Ethical Considerations
The Institutional Review Board at the University of Texas at Austin approved our interview protocol (approval: 00002030) on April 12, 2021.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute on Aging (1R01AG073262-01A1 to Robert Crosnoe, P30AG066614 to Debra Umberson) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (P2CHD042849 to Elizabeth Gershoff, T32HD007081 to Shannon Cavanagh and Bridget Goosby).
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
The data analyzed in this study are not currently publicly available as the project is ongoing but can be made available at a future date.
Reporting Guidelines
The authors followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).