Sandra Latibeaudiere | The invisible weight of caregiving – its very visible consequences

The recent discovery of a caregiver living with the mummified body of a deceased care recipient in the person’s home is more than a headline. It is a sobering indication of how older people, and those who care for them, can slip through the cracks of society.

While public reaction has focused largely on the bizarre and morbid nature of the situation, and the details are still being unravelled, we must resist the urge to reduce the case to spectacle. Instead, we should ask: What leads a person – who assumed the duty of care—to continue living with the body of someone they were expected to protect? What systems failed them both?

COMPLEXITY OF CAREGIVING

Caregiving isn’t just about helping someone — it’s a deeply emotional and complex role. It involves the spiritual (devotion, trying to live up to some religious principles), psychological (anxious about doing a good job, depression, denial, or even dissociation from reality), ethical (duty of care, balancing accountability with compassion), emotional (sadness), and the physical (feeling tired).

The philosopher Seneca captured some of this complexity in his view that care is both burdensome and transcendental. For Seneca, both humans and God have reasoning powers for achieving the good. In God, the good is perfected simply by his nature, but in humans, “the good is perfected by care (cura)”.

And so, for many caregivers, choosing to care isn’t really a choice — it is more like fate. Consequently, it is not surprising that many are ill-equipped to take on the caregiving role.

REALITIES

Paddy** is 80 years old. A devoted husband, he has been married to his beloved Peaches** for over 60 years. Through joy, hardship, and now illness, their bond has remained unshakable.

Peaches now needs daily care, more than Paddy, in his fragile condition, can safely provide.

Yet, out of deep loyalty and pride, Paddy has turned away three helpers, convinced that only he knows what’s best for his wife.

Precious** is 28 years old – a devoted daughter, caring for her mother who is living with dementia. Precious has herself been battling serious medical and personal challenges, including bipolar disorder. She maintains that she will never put her mom in a nursing home.

In my study of caregivers of persons with dementia, most participants — both paid professionals and unpaid family members — believe that families are expected to take care of their elderly relatives. However, many are doing it alone, without support.

Stories like those of Paddy, Precious, and, perhaps, Gena Robinson highlight the struggles that occur in many families, where, due to pride, fear, guilt, or family disagreements often end in tragedy on both sides of the equation.

But more importantly, it exposes a deeper social issue: the erosion of community connections and the insufficiency of institutional follow-up for the elderly and their caregivers. Where were the check-ins?

When entire households become invisible, the problem isn’t just personal. It is systemic.

RISK OF ADVERSE CAREGIVER

A risk factor is a situation that increases an older person ’s vulnerability to having an adverse outcome.

Caregivers of individuals with dementia are referred to as invisible second patients (Brodaty & Donkin, 2009). This label is often used to describe family members who care for a relative with dementia, usually at home. This is a significant problem because the concern is mainly for the care recipient.

Caring for someone with dementia is never easy, and certain factors can make the experience even more overwhelming for caregivers. When the illness comes with behavioural challenges like agitation, sleep disturbances, wandering, as well as psychological conditions such as delusions or hallucinations, the stress on the caregiver is magnified.

The caregiver’s own circumstances can contribute to negative outcomes. Studies show that women, older caregivers, and those experiencing depression or poor physical health are particularly vulnerable to burnout (becoming “uncaring”, neglectful). Sometimes one’s social and economic circumstances, living arrangements (such as living with the care recipient), and a caregiver’s sense of control or confidence in managing care can influence the level of stress they experience. Unfortunately, many caregivers feel guilty about taking a break (respite).

In short, the health of both the caregiver and the person being cared for is deeply interconnected . Without proper support, this delicate balance can easily tip, leading to emotional, physical, and financial strains and possible harm affecting entire families

We cannot allow this latest story to be something we consume and forget. It must serve as a call to action. We have to insist that the Government take action to strengthen safety nets, including community-based ones. Resources to support caregivers are urgently needed. All caregiving has to be recognised as work. Family or community members who give up their means of making a living should receive financial support.

A lot more has to be done to reduce the stigma associated with mental health struggles. They often go hand-in-hand with long-term care. Compassion, not blame, must guide our response. Those being cared for, as well as those doing the caring, should receive attention.

This is why legislation to safeguard the rights of older persons is an institutional and moral imperative. The State (government), as a duty bearer, has an obligation to protect this growing population (rights holders).

The law must contain provisions that

i. Guarantee the rights, dignity, and well-being of older adults.

ii. Protect older people from abuse. Elder abuse affects the health, dignity, and safety of older adults.

iii. Reduce the caregiver’s vulnerability by providing adequate training, respite care, and mental health support.

In our ongoing discussion and policymaking, may we recognise in planning and providing for our ageing society that we never lose sight that caregivers need care, too.

Sandra Latibeaudiere is a lecturer in the Social Work Unit, University of the West Indies, Mona. Send feedback to sandra.latibeaudiere@uwimona.edu.jm.