When the caregiving tasks are intense and extends to several months and years, it is no cakewalk, especially when the caregiver is an immediate relative. Informal caregiving by spouses is a potentially attractive alternative to formal care but may entail health costs for both caregiver and the care recipient. We examine the mental, physical and health impact of providing informal care and disentangle the caregiving effect. In our work as social gerontologists, specialising in long term care and couples over age 60, we've seen many spousal caregivers struggle when one spouse becomes chronically ill or disabled and the other must step up to provide more care. In our two decades of professional experience, we’ve seen many spousal caregivers become exhausted and inadvertently compromise their spouse’s health. This is why, in certain cases, relying on professional care might be a more suitable option.
Two days ago, our former landlord’s son urgently contacted us regarding his father’s health. Sadly, our ex-landlord, who had a stroke a few months back, is still in a critical condition. The son’s concern revolves around his elderly mother struggling to care for her husband. Despite the children’s efforts to persuade her, she refuses professional help and insists on managing, leading to a situation where the three children abroad are unable to assist. In essence, it’s a “dog in the manger” scenario, causing more harm than care due to inferior caregiving.
Following another exasperating conversation with his determined mother, Saroja aunty, Srinivas Reddy felt a mix of concern and anger. These were sentiments he hesitated to reveal to her, fearing it would only strengthen her resolve. The worry stemmed from his mother taking sole responsibility for caring for his stroke survived father, neglecting her own well-being. His frustration grew as, whenever he and his siblings tried to assist, she rebuffed them, insisting that caregiving was solely her responsibility, not a burden for her children and their families. To Srinivas, this seemed neither fair nor just.
In our modern society, the population of older individuals is steadily increasing, and so is their lifespan. Today’s elders often maintain their independence and activity levels for an extended period. Regardless of age, everyone deserves protection from those they live with, receive care from, or regularly interact with. Elder abuse encompasses intentional or unintentional actions, referring to any acts by caregivers or others that cause harm or pose a serious risk to vulnerable adults. Such abuse can occur in various settings, including at home, in the community, or in institutions, taking forms like physical, emotional, financial, sexual, spiritual, or social abuse. Any mistreatment results in needless suffering, injury, the violation of human rights, and a diminished quality of life for older individuals. When the perpetrator is a spouse, the pain is particularly acute, but the issue here is different. Unintended consequences result as ‘spousal abuse’. Upon hearing about elder abuse, the immediate assumption is often that it couldn’t happen in one’s own home, especially between parents. Commonly, the belief is that abuse is more likely to occur in facilities like assisted living or nursing homes. Even in the early stages of marriage, spousal abuse (domestic violence) is deemed unacceptable, and it becomes more distressing when it involves elderly individuals. The vulnerability of older people, marked by their helplessness, weakened state, sensory loss, and dependency, makes them particularly susceptible. Unless one is a social gerontologist, the idea that caregiving by an elderly spouse can turn into spousal abuse may never cross their mind.
In contrast to the past, there is a notable shift in family caregiving dynamics, with many men taking on roles traditionally held by women. This positive trend involves men not only managing caregiving logistics like medications and dealing with insurance but also providing hands-on care such as feeding, grooming, and toileting. A prime example is Mr. Issac, an exemplary husband who dedicated nearly 30 years to caring for his bedridden, arthritic-stricken wife without a complaint. While he stands out as an exception, similar to women in caregiving roles, research indicates that almost two-thirds of men experience moderate to severe caregiver stress.
While support from others is generally the best remedy for stressed family caregivers, there exists a subset of male caregivers, exemplified by individuals like Issac, who staunchly refuse any assistance. These caregivers interpret their commitment to marital vows, pledging care “For better or for worse … in sickness and in health,” as an exclusive responsibility. While their devotion is commendable, the question arises of how far they can go without succumbing to exhaustion. For adult sons like Srinivas Reddy, the challenge lies in persuading their stubborn mothers to consider relaxing a bit and seeking support from other family members or professionals.
A growing number of aging husbands and wives are taking on the role of caregivers, and our findings suggest that elderly individuals cared for by a spouse may face a heightened risk of substandard care or abuse. The risk of harmful caregiver behaviour significantly increased when the caregiver was a spouse. Saroja aunty serves as a prime example of “harmful caregiver behaviour,” as it tends to do more harm than good. Interestingly, in our observations, only a small percentage of abused elderly individuals had experienced mistreatment from their children, while the majority faced abuse from their spouses. The likelihood of emotional mistreatment was particularly high when spousal caregivers had their own health issues or were susceptible to depression.
From an external perspective, it’s often difficult to fathom how a spouse, equally fragile and vulnerable, especially after decades of living together, can exhibit abusive behaviour. However, it does occur, and we may not be aware unless the victim or someone else speaks up. Despite dedicating significant time and resources to caring for your spouse, you might find yourself facing yelling, spitting, or even biting. As a spouse, you chose the path of managing everything alone, fully aware that caregiving at this stage of life is far from easy. Amidst your caregiving journey, the challenges become overwhelming, leading to tantrums that make the latter part of your partner’s life quite distressing. Sadly, the spouse receiving care often cannot voice their concerns or demand better treatment.
It’s only natural to feel bitterness and a sense of being confined when caring for a spouse, as it limits the freedom of the healthier partner. The sudden disruption of retirement plans and the inability to pursue new activities can leave psychological scars. The challenging behaviour of the ailing spouse, marked by unreasonableness and demands, contributes to the misery of the caregiving partner. Persistent psychological strain often leads to overreactions and, out of frustration, caregivers may express their anger towards the person they are caring for. Other factors contributing to elderly abuse include drug or alcohol abuse, mental health issues, and a history of antisocial behaviour.
Considering their vulnerability, whether bedridden or experiencing a decline in mental faculties, it falls upon other family members who interact with the abusive individual to intervene and halt the mistreatment. Elderly individuals, in their frail state, may either be excessively intimidated and fearful or feel ashamed, worried about being labeled as complainers. Due to the dread of further retaliation, they often choose to remain silent about the abuse. The instances of abuse we observed were seldom physical; more commonly, they involved shouting, cursing, and verbal mistreatment. The forms of ill-treatment vary in both nature and severity.
Based on our experience, psychological abuse surpasses physical abuse as the most prevalent form of elder mistreatment. Often concealed, psychological abuse proves challenging to uncover due to the lack of tangible evidence. An elderly individual, already in a fragile state, may endure psychological abuse independently or alongside other forms such as threats, humiliation, fear, manipulation, or other cruel behaviors. Mental anguish can be inflicted by the healthier partner through unspoken or explicit means, involving both verbal and non-verbal communication cues. One notable incident we recall involved an “aunty” seeking revenge by denying hot water for bathing to her bedridden husband, despite an available water heater in the house. The maid servant was willing to fetch hot water from another room, but the aunty insisted, “let him not have such luxuries.” This exemplifies a systematic perpetration of malicious and explicit nonphysical acts against the helpless spouse. Additional instances encompass harassment, scolding, insults, denigration, and cursing.
Intimidating a spouse through physical punishment or withholding basic necessities, such as denying hot water, constitutes a form of psychological abuse. We’ve encountered numerous instances of actions like withholding or delaying food, medication, warmth, or assistance with toileting. Another troubling behaviour involves intentionally delaying diaper changes, not due to financial constraints but as a means of harassment. These actions collectively contribute to establishing an oppressive and sadistic atmosphere. Additional acts include deliberately placing essential items such as the spouse’s walker, cane, glasses, dentures, or other necessary items out of reach or in inaccessible locations.
“I can’t stand to see her face,” responded Babu uncle. We were taken aback to learn that he hadn’t set foot in his wife’s room for the past two years. This is a clear example of profound psychological neglect, depriving a partner of essential mental well-being. Extended periods of solitude and a lack of adequate companionship contribute to such neglect. While a paid caregiver can fulfil basic needs like food, water, and care, they can never replace the companionship a spouse provides, which is crucial for satisfactory social stimulation. Similarly, interference with decision-making, false allegations, and control over finances can significantly erode an individual’s self-esteem. Continued mistreatment can have detrimental effects on one’s clinical conditions.
Types of spousal abuse:
1.Physical: Infrequent but involving the healthy spouse using physical force to cause harm.
2.Sexual: Involves forcing the sick spouse into unwanted sexual acts, including penetration, unwanted contact, or unnatural acts.
3.Psychological: Encompasses deliberate verbal or non-verbal acts that cause mental agony.
4.Neglect: Involves the denial of basic needs such as food, water, shelter, clothing, hygiene, and medical care.
5.Financial: Entails misappropriating the spouse’s money, belongings, or property without their consent.
Not too long ago, at our assisted living facility, there was a couple – Jesuraj and his wife, Devayani (names changed to protect their identity) – who exemplified a distressing case of spousal sexual abuse. They joined our facility because Devayani was battling dementia, rendering her fully dependent and bedridden, with no orientation to people, place, or time. Jesuraj, her husband, had a minor age-related heart ailment but was otherwise fit, engaging in regular walks and managing his routine independently. Despite being suitable for a retirement home, he insisted on moving into assisted living with his wife. Unfortunately, such instances of abuse are often overlooked due to their embarrassing nature.
Financially exploiting elderly individuals, whether by draining their resources or making them bankrupt, represents a disturbing form of abuse. This is not uncommon in urban India, where the Healthy Spouse often handles the money. Sadly, elder financial abuse extends beyond spouses to include children, grandchildren, nieces, and nephews who may exploit their easy access to the elderly person’s financial records. This type of abuse, characterised by bargaining with care, hiring poor-quality assistance, denying advanced healthcare, and neglecting basic amenities, jeopardises the well-being of the infirm spouse, leaving them with diminished resources and limited access to quality healthcare.
To safeguard oneself from various forms of abuse and ensure adequate care during old age, it’s crucial to establish a robust care plan and entrust a professional caregiver free from biases. Shifting priorities, strained family structures, spousal caregiver burnout, and dispassionate caregiving are realities often overlooked. Avoiding the issue doesn’t prevent abuse during infirm years; reliance on an aging spouse for management can be problematic, given their potential infirmity and exhaustion. Spousal caregivers, prone to fatigue, may compromise the well-being of the unhealthy spouse.
Our experience underscores caregiver burden as a significant factor in elder abuse. Initial lapses in care may escalate into full-fledged violence when a caregiver is solely responsible for round-the-clock oversight. Demanding care needs coupled with a lack of respite, can lead caregivers to frustration, anger, and even depression, potentially resulting in emotional mistreatment and, in extreme cases resorting to physical abuse. This highlights the importance of respite care for caring spouses.
Caring for an ill or frail individual may seem simple in the beginning, and spousal caregivers may underestimate the complexity of required care. As conditions worsen, there arises a heightened need for training and skills, prompting a requirement for professional assistance. Spouses facing challenges involving catheters, PEG tubes, colostomies, or tracheotomies must acknowledge their limitations and seek professional help. Neglect or abuse leading to injuries or infections, and sometimes premature death, emphasizes the need for titled our article: ‘Unintended Consequences of Spousal Caregiving’.
While certain spouses thrive in caregiving owing to their knowledge and experience, others may grapple with the intricacies involved. Acknowledging the crucial role of spousal caregivers in handling chronic diseases, we, as social gerontologists, aim to support them by offering knowledge, skills, and guidance. Strengthening family caregivers with problem-solving, organisational, and communication skills translates into adopting best practices for ensuring quality care.
