Mrs Kumar

One in every 6 Singapore residents suffers from a mental illness, and they are among 6 vulnerable communities here who have unmet needs, according to a 2011 study by the Lien Centre for Social Innovation (Mathi and Mohamed, 2011). In Singapore, where mental illness is still considered a personal or family tragedy instead of an issue for society, caregivers like Mrs Kumar take on a responsibility for ‘endless caregiving’ with inadequate social support (Wong et. al., 2015). Mrs Kumar’s hope of living just a day more than her son Rajeev reminds us how closely bound these two lives are, and how failing to ensure family-centred care for both patient and family caregivers can lead to both parties suffering harm. Mrs Kumar’s failing health and exhaustion from daily burdens of caregiving threaten to overwhelm her completely. In that event, Rajeev’s life and future are in danger of neglect. His well sibling, Amrita, also faces much uncertainty about what she would do for both her mother and brother.

Do healthcare and social care professionals have obligations towards family members who are caregivers to patients, and what would obligations towards families entail? Family-centred care addresses the involvement of family members in care by informing family members of a patient’s condition and ways that they might

1. support their loved one’s decisions or participation in decisions (for instance, through truthful and respectful communication about his fluctuating capacity),
2. help to take in diagnostic information, remember, and help to administer what has been prescribed,
3. establish care routines,
4. and keep a good balance between safety and well-being.

This type of care also includes assessments of the caregivers’ health and well-being, addressing the nature and scope of particular caregiving roles, determining the capacity of individuals at home to provide ongoing care to the patient, and making referrals for caregiver health needs and resources for family support (Gitlin and Hodgson, 2016). Social care professionals have fewer difficulties than healthcare professionals in recognising obligations to family members due to differences in the type of training they receive, which offer scant guidance on how to involve families in the care of patients. This suggests that peer-to-peer education will be helpful in multi-disciplinary teams providing holistic care to patients and families. Gitlin and Hodgson (2016) note that healthcare professionals also face system barriers such as patient-focused rather than family-oriented health records and healthcare reimbursement structures, but cite both harms and humanitarian considerations, and the fact of interdependent social relationships in all care contexts, as reasons that would ground the professional obligation to provide family-centred care and a better quality of life for patients and their caregivers.

Mrs Kumar’s well-being is inseparable from Rajeev’s welfare and future prospects. Who can guide well siblings and other family members like Aunt Madhu about the forms of care that they can offer to support Mrs Kumar and Rajeev? At the centre of this is the understanding of caring itself (Callahan, 2001). All people need care in a variety of respects. We need care not only at the emotional level (respect, appreciation, humour, and the like), but also the cognitive level: individuals need those who care for their ways of thinking about issues and how they frame their course of life. We need care at the level of our values, those who have an appreciation for the things that we cherish or return, accept or reject. Individuals also see their relationships with others in different ways, and being observant and sensitive to how someone interacts with different people is an aspect of caring for her. As Callahan cautions, caring can be misplaced, and where a person might fall ‘within a spectrum of possible relationships’ with a care recipient is important if the caregiver’s work is to succeed in establishing a ‘healing, or helping, or consoling, or affectionate bond’.

Caregiving can be a lifelong activity for some family members. In some circumstances, such as that facing Mrs Kumar and her daughter, a person’s needs for care can extend beyond the primary caregiver’s lifetime.

When we think about care transitions in an ageing society, we typically think about how caregiving responsibilities shift from professionals to care and support provided by family members in a domestic setting. Mrs Kumar’s situation, however, provokes us to think carefully about how we approach a different kind of transition: from care provided by one family member to another when the primary caregiver becomes older or unwell.

As with Mrs Kumar, this transition is most commonly seen in family care for people with enduring mental illness or those with intellectual disabilities, where parents frequently take on the responsibility to provide care. However, caregiving between two generations of a family is not limited to this situation. Spouses of older adults who act as primary caregiver will age alongside their loved ones, presenting similar issues to those raised in this case.

What if the younger family member says no?

Family dynamics vary considerably in caregiving situations, not least because of the stress, and impact on individuals’ identity associated with a family home becoming a site of care. Here, Amrita is involved in the care of her brother, Rajeev. She is aware of his difficulties and his care needs. She is also aware of the challenges her mother is facing in caring for Rajeev. Whilst it is not clear whether Amrita has agreed to take on primary caregiving role when Mrs Kumar dies or becomes more unwell, there is evidence of an implicit expectation that this will be the case. Such expectations are a common feature of family caregiving practices, and so it will not be uncommon for children, siblings, or other younger members of the family to take on the caregiving role without much open discussion.

In other family situations, however, a child or sibling might make it clear that he/she will not agree to take on this role. There could be many reasons for this, ranging from an emotional, geographical, or social distancing between family members. In some situations, the family will address this issue themselves, without professional involvement. This might involve them passing family caregiving responsibilities on to a foreign domestic worker employed for this task. In other situations, the lack of a replacement caregiver could give rise to a crisis in care, triggering a response by professionals. In a situation like this in Singapore, it is important to recognise that no-one can demand or force the younger family member to take on the role of caregiver. Alternative care arrangements would need to be put in place if there is no suitable family member to whom caregiving could be transitioned.

Planning care transitions between generations

A care professional has a responsibility to assist the family in the care transition process, to the extent that the family requires such support. This is because a failed transition in caregiving between family members is likely to lead to the person in need of care coming to harm. For example, if Mrs Kumar becomes unable to take care of Rajeev, and Amrita was unwilling to step in, Rajeev’s medication, other health needs, and his well-being in general would be negatively affected.

When professionals are involved in the care of a person on an ongoing basis, the need to transition care between family members can be recognised in advance. It is likely that Rajeev will be receiving treatment and support as an outpatient, and those providing this treatment should take a proactive approach to pre-empting a changing family care need. Mrs Rajeev receiving dialysis should certainly have triggered a family care needs assessment to be undertaken, and this should include a future care planning component.

When planning a care transition between family members, professionals must be sensitive to the fact that family members might want to manage this arrangement themselves, and will see professional involvement in the planning process as an infringement of their privacy. The professional obligation here is to provide information that can assist the family with the options available to support them in this transition.

If the family is open to support, assistance should be tailored to the family’s circumstances. Supports might be needed to enable this transition to take place smoothly. These could include training in caregiving tasks or the co-development of a workable schedule that strikes the right balance between the demands of care and other aspects of the new caregiver’s life. Alternatively, more substantial interventions, such as respite care to reduce the caregiving burden in the early stages of the transition, will be appropriate

Smooth transitions will also depend on the family agreeing on how care should be provided. Mrs Kumar states that she expects Amrita to continue to care for Rajeev at home. Professionals should recognise a responsibility to assist in resolving disagreements between family members about the best way to provide care. This is because such disagreements are likely to undermine the entire transition, threatening the continuity of care and stimulating the need for further professional intervention. A professional might, for example, need to help Mrs Kumar to see that Amrita has a different approach to thinking about Rajeev’s needs, whilst simultaneously determining whether Amrita’s approach is conducive to Rajeev’s well-being. If there were concerns that Amrita was not intending to care for Rajeev in a way that advanced his interests, this would also need to be addressed proactively.

Caregiving is not only an endless task but also an invisible task. As healthcare providers, we often fall into the habit of focusing entirely on the illness in question and neglecting the person behind the illness. And decidedly, the caregiver behind the person with the illness remains unseen and unheard; in short, invisible. Perhaps healthcare providers do not have the time for that conversation with the caregiver, to ask a simple, ‘How are you coping?’ though I sometimes suspect we do not dare to have that conversation because we think we know what the answer will be. Nevertheless, it is an important conversation to have. Caregivers rarely have the time to seek medical attention for themselves and therefore, consultation with the healthcare provider, albeit for the person requiring care, is a marvellous opportunity for the invisible carers to finally be heard, validated, and cared for. So how can healthcare professionals help to reduce the burdens of caregiving for families taking responsibility for a loved one with chronic mental illness living at home? One place to begin is for healthcare professionals to have a correct estimation of the burden of mental illness on caregivers.

Caregiving is hard, and oftentimes, heartbreaking work. Much has been written about the challenges and difficulties that caregivers face and the words ‘burden’ and ‘distress’ are often paired with ‘caregiving’. Up to a third of caregivers have chronic health problems and rate themselves as being in fair or poor health. Taking time off to see a doctor or engaging in exercise and other health-promoting activities is challenging when their loved ones require round-the-clock care and attention. Close to half of caregivers experience symptoms of depression and many others find themselves grappling with emotions like anxiety, guilt, ambivalence, and isolation. Sometimes, there is an accompanying sense of helplessness and despair, either stemming from a fear of asking for help or not knowing where to seek help. Most, if not all are exhausted, not least from the lack of sleep that often comes with caring for an elderly person who is incontinent and confused, especially at night. The literature also consistently demonstrates that problematic behaviours in individuals with psychiatric ailments living at home increases caregiver stress and is associated with poorer caregiver health. In addition, problematic behaviours run the gamut from attention-seeking behaviour, temper tantrums or outbursts, apathy and lack of motivation to participate in activities, to frank hallucinatory experiences, delusions, disorganised behaviour and sometimes, physical aggression.

Caregivers are often at a loss as to how to manage such behaviours, especially if they occur on a frequent basis. Many react in frustration, hostility, and anger, which may ironically worsen their loved one’s behaviour. Research has shown that high expressed emotion (expressing hostility, being overly critical, and having emotional over-involvement) towards the patient is associated with relapse of psychotic disorders. Therefore, whilst there is certainly a role for psychotropic medication to ameliorate such behaviours, one cannot over-emphasise the importance of psychosocial and environmental interventions (including, and especially, caregivers’ reactions to the patients in particular) in managing such behaviours. Better care for Rajeev implies not only tailoring the most appropriate medication regime for him but also psychoeducating Mrs Kumar and other family members on recognising the triggers to Rajeev’s problematic behaviours, teaching creative strategies to target these behaviours and to improve communication patterns between the patient and the family, amongst other interventions. This is where proper family education by healthcare professionals about the psychiatric ailment is important. Families sometimes blame the patient for ‘having a psychiatric illness’ or ‘not being strong enough to overcome it’ and it is important for mental health professionals to correct these misconceptions. In this case, Mrs Kumar and her family can learn to accept Rajeev for who he is and what he can or cannot do; he is not simply a patient with a mental illness requiring drugs but a person, a son, and a brother with unmet needs.

Undoubtedly, the lives of caregivers become disrupted when they take on the caregiving role. Interpersonal relationships with other family members get affected, especially when there are differing opinions about the person requiring care. The financial burden of caregiving, coupled with the difficulties of sustaining gainful employment whilst providing care for a loved one, can prove exceptionally demanding for the 20% of carers who are the sole caregivers. All caregivers need to be cared for, because only then will they be capable of providing good care to their loved ones. Mrs Kumar has clearly put caring for Rajeev over caring for herself. Thankfully, in Singapore, community mental health resources are increasing and such services can be engaged to help Mrs Kumar and her family so that caring for Rajeev might not seem such a monumental and endless task.

Truly, the ones who provide the best care are those that give care with joy. Indeed, such caregivers do exist, caregivers who see their work not as a burden but as a privilege, caring for someone who once cared for them. These carers accept that it is a duty they have to perform and make realistic expectations not only of the person requiring care but more importantly, of themselves. They learn to laugh when their elderly parent insists on dressing up to the nines at 2 in the morning wanting to go to work. They cherish the brief but poignant moments of lucidity that occur whilst giving care to truly connect with their loved ones. In those wondrous moments, there is no fear, helplessness, or anger. There is only joy, and there is only love. This is when good caregiving happens.