Caregiving responsibility and caregiver burden

Caregiving responsibility and caregiver burden in Elena Knows take shape in the changing relationship between Rita and her mother, Elena, whose Parkinson-Plus syndrome makes ordinary tasks increasingly dependent on another person. The novel presents care not as an abstract virtue or a simple family obligation but as repeated physical and emotional labor, accompanied by attachment, irritation, shame, and fear. Rita’s work sustains Elena’s daily life, yet the diagnosis forces both women to confront what that work may demand in the future—and whether Rita can continue to provide it.

Care as Daily Labor

Rita’s care is woven into the routines of the household. She helps Elena out of bed, prepares for her meals, and assists her at night when she needs to use the bathroom. She manages the practical details that Elena can no longer reliably manage alone, from arranging her teeth to helping her settle back into bed. These tasks recur through the day and into the night; care has no clean endpoint when Rita finishes an errand or leaves the room, because Elena may need her again a few hours later.

That repetition shapes how Rita experiences her mother’s illness. She is responsible not only for helping Elena move through basic routines, but also for seeing the changes in Elena’s face and body at close range. Her account to Elena describes the strain of constant proximity and of tending to intimate needs that are difficult to discuss. The novel does not make this resentment proof that Rita does not care. Instead, it shows affection and aversion pressing against each other inside the same relationship: Rita keeps returning to help, while also naming how exhausting and distressing that help can be.

Care also enters the relationship through smaller acts intended to preserve dignity. Rita arranges a visit to the hair salon, scheduling the appointment around Elena’s Levodopa so her mother will not be without her medication. Elena resists the outing and questions why her appearance matters. Rita explains that she is the one who sees her every day and that the way Elena looks affects her as well. The appointment is therefore not a cure or a reversal of dependency; it is Rita’s effort to change one part of a life otherwise governed by illness. At the salon, Elena waits among old magazines and products promising better health, acutely aware that none offers hope for her condition.

The Diagnosis and Its Demands

At the medical consultation, Dr Benegas tells Elena and Rita that Elena has Parkinson-Plus syndrome and that the disease is advancing faster than expected. Rita responds by enumerating the losses already shaping their lives: Elena has difficulty walking, swallowing, dressing, and performing everyday tasks without assistance. Her challenge to the doctor is not simply a request for a more detailed diagnosis. She is asking what else can be demanded of Elena, and what further labor will fall to her as the person who cares for her.

The doctor’s prognosis makes that labor concrete. Elena may soon be unable to get out of bed, feed herself, or use the bathroom without help; her food may need to be liquid or semi-liquid, and her speech may become difficult to understand. Dr Benegas also warns that she could experience dementia and memory loss. He advises Rita to consider hiring someone to care for Elena while Rita is at work, and to do so soon. The recommendation acknowledges that care cannot be supplied by good intentions alone: it requires time, practical assistance, and a plan for needs that may exceed what one family member can manage.

Rita hears the prognosis as a forecast not only of Elena’s decline but of her own increasing responsibility. When Dr Benegas tells her that she will have to give more, she asks what, precisely, is being asked of her. His reply that she must become her mother’s mother turns filial duty into an explicit demand. Rita rejects the comparison between Elena’s future condition and infancy: a baby develops new abilities, while Elena is losing abilities she once had. For Rita, the metaphor obscures the direction of change and the anguish of watching a parent become more dependent without the prospect of recovery.

Limits, Choice, and Unequal Responsibility

The consultation exposes a conflict between Elena’s wish to remain at home and Rita’s fear that she cannot carry the care alone. Elena says she wants to stay in her own house and believes she can manage there. Rita responds that her mother does not understand what the future will require. She voices the possibility of choosing an end to the situation, while Elena says that she wants to live. The exchange does not resolve the conflict; it reveals that the two women are speaking from different positions. Elena is confronting the possible loss of independence and life, while Rita is confronting a future of care that she does not know whether she can bear.

Dr Benegas’s proposed support is directed toward both women, but the pamphlets he offers cannot settle their disagreement or guarantee that help will be available in the form they need. Elena takes the papers from him, while Rita does not reach for them. Their departure in silence, with Rita walking ahead and Elena several steps behind, makes the distance between them visible without suggesting that either has ceased to care. At home, Elena tries to read the materials and call Rita to look at them together, but Rita remains in the bathroom and does not answer. The informational resource reaches Elena first; it does not immediately create a shared plan.

Care, Knowledge, and the Body

Reading the pamphlets, Elena measures their general advice against the body she knows from within. She recognizes some symptoms in their descriptions and questions others, distinguishing what she has experienced from what she has not. The materials address anxiety and distress in both the patient and the caregiver, and suggest relaxation exercises for the person providing care. Elena identifies Rita as that caregiver, but privately finds the recommended repetitions inadequate to the household’s strain. The moment shows a limit of generic guidance: it names the burden, yet its formulae cannot contain the particular history and daily pressures of this mother and daughter.

Elena’s attempt to follow the pamphlet’s suggested activities is equally specific. She dismisses examples that do not fit their lives, considers a crossword puzzle, and adds draining pasta without spilling it to her mental list of achievements. These small adjustments register both the practical contraction of her abilities and her effort to retain some agency. Caregiving is not presented only as Rita doing things for Elena; Elena observes, adapts, and tests what she can still do, even as more tasks move beyond her reach.

Wider Significance and the Limits of Duty

The novel places this family’s private labor within a broader experience of disability and aging. Elena’s dependence is not a metaphor detached from daily life: it alters movement, medication schedules, eating, communication, and the household’s division of time. A critical account of the novel also notes that Elena’s brusque manner partly functions as self-defense against the ageism and marginalization faced by older and disabled people. That context complicates any demand that she accept dependence quietly, just as it complicates the expectation that Rita should meet every need without objection.

The contrast between Rita’s care for Elena and her earlier intervention in Isabel’s unwanted pregnancy further sharpens the novel’s questions about responsibility. Rita had imposed her convictions on Isabel’s decision, insisting that Isabel continue a pregnancy she did not want. That intervention is not equivalent to caring for a sick parent, but both situations expose how claims of responsibility can involve power over another person’s body. Rita’s devotion to Elena does not erase the limits she voices, while her moral certainty about Isabel does not make that intervention harmless. Across these relationships, the novel resists treating care as automatically benevolent or as an unlimited debt owed by women to others.

Rita’s death in the church belfry leaves Elena to pursue an explanation without the daughter whose care had organized so much of her daily life. The novel does not establish caregiving as the cause of Rita’s death; rather, the loss makes the relationship’s unfinished questions more acute. Care has been an intimate practice, a source of conflict, and a responsibility shaped by illness and social expectation. Its burden is real, but the narrative does not reduce either woman to a caregiver or a dependent: it keeps their competing needs and imperfect knowledge in view.