Sandra (Sandy) Sjollema
Life rarely looks like what I expected.
For example, I now find myself a caregiver in my sixties without (grand) children, a situation I did not anticipate.
Indeed, I am what is referred to as an informal caregiver – someone who helps a family member, friend, or neighbour with daily living and/or medical tasks, without getting paid (The Family Caregiver Alliance, 2016). Of these informal caregivers, the vast majority are family caregivers, specifically, spouses or adult children (Wolff et al., 2018). I do resist the word "informal", though, as I believe it downplays the contribution of caregivers to society(see Arno et al., 1999).
As a childless caregiver, I sometimes equate my position with being down in the mud: immersed in the muck of the not-so-pretty parts of life that, paradoxically, provide me with opportunities for growth. Yet I have noticed there is not much written about caregiving from the perspective of childless people like me.
That gap has led me to look at what research says about caregiving and consider what it might mean for childless people – as well as reflecting on how it connects to my own experiences.
The basics of childless caregiving
My quest for research on (childless) caregiving led me to several studies. One study (as reported by Pesando, 2019) suggests that childless adults are 20-40 % more likely to support their aging parents than adults with children. Indeed, childless adults report feeling pressured by family and society to take care of elderly parents because it is assumed they have no other competing responsibilities (Graham et al., 2019;Letherby & Williams, 1999).
Another study indicates that 41% of senior caregivers receive help from adult children (Statistics Canada, 2018) – a support unavailable to older childless caregivers. At the same time, other studies suggest that many older individuals caring for a spouse do so alone (Ornstein et al., 2019), a situation that likely includes many childless people.
Research indicates two main stressors in caregiving: intensity of care and lack of support (Statistics Canada, 2018). Indeed, one-third of senior caregivers (65 and older) report high stress, which increases with the number of hours of care (Statistics Canada). If childless caregivers are performing care alone – meaning more work and more hours– the levels of stress will reflect this.
Recent studies also suggest that many caregivers feel isolated due to lack of societal acknowledgement (Health Experiences Canada, 2019). This lack of recognition especially pertains to women who are seen as "natural" or "obligatory" caregivers (Folbre, 2011). For childless caregivers, being unrecognized compounds their invisibility in a pro-natalist society (Graham et al., 2019).
These patterns that I have extrapolated to childless caregivers reflect lived realities. Indeed, they have been very much my experience.
Me? A caregiver?
My first experience of caregiving came before I tried to have children.
Indeed, I was a caregiver to my father who died of lung cancer in 1996, several years before I tried unsuccessfully to have children with two different partners.
My second experience of caregiving came in 2021 when my mother was dying of metastatic melanoma and dementia. As was the case with my father, my (ex) spouses and my brother and sister-in-law – who do have children – also participated in the caregiving.
Currently, I am a solo caregiver for my 66-year-old spouse; I am sixty-two. My spouse lives with ongoing psychiatric, cognitive,and physical health problems.
While in the thick of caregiving, it is hard to contemplate the experience. Still, reflecting on my life as a caregiver has helped me understand that this experience has brought me both challenges and gifts.
Caregiving challenges as a childless person
At this point in my life, caregiving feels stressful.
Firstly, I encounter a lack of personal time which can include being too fatigued to concentrate on my own life or constantly having to adjust my calendar to a new set of appointments, which make it hard to commit to my own activities. I also must respond to spontaneous needs and (mini) crises.
As a solo caregiver, the fatigue and sidelining of my own activities become prominent.
In my case, I went from pursuing and obtaining a doctorate (in 2019) to managing the visceral grittiness and repetitive tasks of caregiving. I liken myself to a modern-day Icarus, a Greek mythological figure who flew near the sun, only to come crashing down in the mud.
The adjustment has not been easy.
I also encountered a situation where I believe the societal assumption that women are natural caregivers – who must always pick up the slack – was at play. During my spouse's hospitalization in 2024, staff, who had started helping my spouse with bedside toileting, abruptly handed the task over to me and left the room – likely assuming that I, as a female, could and should take over. I was startled, then angry: "Why is this my job to finish?" I asked myself. Alone, I had no choice but to deal with the situation.
In terms of invisibility, I feel resentful that the only time I seem to be noticed is when something goes wrong: for example, due to faulty plumbing, my spouse had difficulty navigating the toilet – which led to overflowing – in our former apartment. Despite my repeated requests that he fix the plumbing problem, the landlord insinuated that it was me, the caregiver, who was mismanaging the situation and suggested that my spouse be institutionalized. Not only did the burden of dealing with the landlord fall largely on me – causing enormous stress – I came to fear visibility itself, in this case, negative scrutiny.
What all these examples point to is the biggest challenge I encounter as a childless caregiver: carrying the weight of the situation largely on my own, and often, under trying circumstances. Although auxiliary support from family, friends, community groups and professionals is appreciated, I am still left as the only person who is deeply implicated, and ultimately, responsible. As a low-income individual, I cannot afford many of the respite services offered for a fee (meals, housekeeping etc.). Also, I am alone to manage middle-of-the night situations such as falls and mental confusion.
I often feel isolated in dealing with these situations, especially when I think of my caregiving experiences with my parents where important responsibilities were shared between family members. However, I have also come to realize that caregiving has provided me with opportunities for growth.
Down in the mud: the gifts of caregiving as a childless person
Although I have equated caregiving as a childless adult with being down in the mud, I have come to see that the mud brings gifts. Primarily, it has allowed me to see myself differently: I know now that I am strong, resilient, responsible, resourceful, dedicated, and loving. These qualities were undoubtedly already a part of me, but caregiving has developed them further and made them more obvious. I also know that I can remain present through illness, incapacity, dying and death. To know these things about myself has largely quieted the internalized critic – formed by what a pronatalist society had told me – who questioned my ability to take on demanding responsibilities or show ongoing care because I am not a parent. Although caregiving is but one way to know these things about oneself, I am glad it brought me to these realizations. While I don't want to glamorize the mud, being there has undeniably marked a major transformation in my life.
References
Arno, P. S.,Levine, C., & Memmott, M. M. (1999). The economic value of informal caregiving. Health Affairs, 18(2), 182–188
Folbre, N. (2011). The invisible heart: care and the global economy. The women, gender, and development reader, 41-42.
Health Experiences Canada (2019).Society and Caregiving. Society and caregiving – Health Experiences
Jamieson, L. (2011). Intimacy, negotiation, and the ‘childless’ life course. Sociological Research Online, 16(2), 12–26.
Letherby, G., & Williams, C. (1999). Non-Motherhood: Ambivalent Autobiographies. Feminist Studies, 25(3): 719–728.
Ornstein, K. A., Wolff, J. L., Bollens-Lund, E., Rahman, O. K., & Kelley, A. S. (2019). Spousal Caregivers Are Caregiving Alone in The Last Years of Life. Health affairs (Project Hope), 38(6), 964–972. https://doi.org/10.1377/hlthaff.2019.00087
Pesando, L. M. (2019). Childlessness and upward intergenerational support: cross-national evidence from 11 European countries. Ageing & Society, 39(6), 1219-1254.
Statistics Canada (2018). 2018 General Social Survey on Caregiving and Care Receiving. The experiences and needs of older caregivers in Canada
The Family Caregiver Alliance (2016). Caregiver Statistics: Demographics
Wolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2018). Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 1021-1032.