9 Caring for the Carer

Notes on Nursing — Florence Nightingale

The focus of the advice in Notes on Nursing is the patient. But Florence Nightingale experienced in her own life the wear and stress that can befall a caregiver. Although never one to spare herself or the caregivers she was seeking to inspire, she nonetheless included in her ‘Notes’ the message that caregivers should also care for themselves, by accepting that their unending presence at the side of their patient took a toll from which both could suffer. She insisted that the caregiver must understand that planning to be replaced at regular periods, and doing it so that someone else had everything at hand to offer the care that was needed, was also one of the important responsibilities to be assumed by a caregiver.

Caring for the carer today

The role of the caregiver is not a new phenomenon. It was an important element of care for the ill and injured in Florence Nightingale’s time and it remains a key element in every country’s strategy to deal with an increasing number of patients requiring care.

Caregivers around the world care for individuals from all age groups, across all stages of life, and across the continuum of care. Their needs, networks, resources, strengths and limitations vary from caregiver to caregiver and from one region or country to another. What unites them in their role is a concern for and a commitment to those in their care. However, the role also brings with it, in varying degrees, a set of risks and hazards that can befall anyone assuming this difficult role.

In developed countries, the aging of the population means that more individuals become candidates for care at home, rather than in institutions, for at least part of their old age. It also means that many of the caregivers are old themselves. A Canadian study of caregivers presents a picture that is typical for developed countries. It found, for example, that:

• Caregivers are predominantly female (77%) and typically older than the population at large, with 70% of them over 45 years old.

• The majority of people who receive care are aged between 75 and 85 years.

• Caregivers are most likely to report that they provide care out of a sense of family responsibility (67%).

• 52% of caregivers believe they had a choice about taking on their caregiving responsibilities.

• 50% of caregivers report health problems due to caregiving, with 79% of them admitting emotional difficulties due to caregiving.

• Almost seven in ten caregivers report that they need a break from their caregiving responsibilities, either frequently (21%) or occasionally (47%).

• The most significant predictor of caregiver ‘stress’ is the lack of choice about taking on the caregiving responsibilities.

• The majority of caregivers derive psychological benefits from providing care, including a sense of being able to make a positive contribution to the welfare of the care receiver (79%), and experiencing a strengthening of a valued relationship (90.6%).

In many countries, caregivers can often rely on outside services for support in providing care. However, in some countries the situation for caregivers is often not as good, with many having to earn a hard living for their family while at the same time providing care, often to more than one patient. In sub-Saharan Africa, women are traditionally considered the caregivers in the families if a family member falls sick. Family caregiving occurs under extremely limited conditions within the home, and there is very limited access to the formal healthcare system. With the dramatic spread of HIV/AIDS, family caregiving has reached new levels.

In many of the hardest-hit nations, women and girls take on the major share of providing care, often while also assuming responsibility for the children of the ill, or for the growing numbers of orphans. In these countries, the work of providing care is often done while continuing to work for an income or cultivate crops, which are often their family’s only means of support.

Caring for an AIDS patient is difficult in any country. In a poor country it can be disastrous. One study found that, a woman in a rural community in Southern Africa must collect 24 buckets of water a day, by hand, and sometimes over a considerable distance, to care for a family member who is dying of AIDS – water to wash the clothes, the sheets and the patient after regular bouts of diarrhea. In many countries, the care provided by a family member at home is the only option available. It is estimated that up to 90% of care due to illness in the region is home-based. According to UNAIDS, two-thirds of primary caregivers in households surveyed in Southern Africa are female; one-quarter of these are over 60 years of age. A South African national evaluation of home-based care found that 91% of caregivers were women.

The difficulties of caring and giving care •••

Providing care on a regular basis for a cherished relative or other individual is physically tiring; it can also be a drain on the emotions and a source of anxiety, which can lead to feelings of inadequacy or resentment. Even the best goodwill combined with a generous spirit can succumb to the unrelenting needs of a patient whose suffering and discomfort are shared every day by the caregiver.

It is frequent for caregivers to assume an attitude of self-abnegation, where they will deny their own feelings of inadequacy or resentment. Caregivers often assume their role out of necessity, because there is no one else to do it properly, but there is also a certain degree of altruism arising from their sense of responsibility in human relationships and families. This leaves caregivers vulnerable to the repression of emotions and physical symptoms that run counter to their image of what it means to be an ideal caregiver. This behavior needs to be recognized by every caregiver as a typical response to a difficult situation; every caregiver will experience some variation of this ‘normal’ condition. But, caregivers need also to realize that their own physical and mental well-being cannot be put into jeopardy in the process of providing care; both the caregiver and the patient will suffer from ignoring this basic reality. To help prevent falling into a situation of burnout, it is essential that caregivers take time for themselves. The relentless suffering or discomfort of a patient is often a goad to do too much, assume too much, and take on more of the burden than one person can stand.

A patient can be as demanding as the ailment or circumstances that he or she must live with. To deal with insistent demands requires calm, and recourse to the care plan, with adjustments if necessary. It is important to separate the patient from the ailment or condition, and to avoid blaming the patient for the situation in which both the patient and the caregiver must live. This is why every caregiver must include in the overall care plan provision for enough time and energy to account for their own physical and mental well-being. This is not a luxury, but an absolute requirement for anyone who anticipates providing care over a significant period of time.

The caregiver’s first responsibility should be to ensure that he or she is able to sustain the effort to provide personal care for the patient. Above all, this means a responsibility to keep oneself healthy, balanced and strong. This can include:

• Eating a healthy diet rich in fruits, vegetables and whole grains and low in saturated fat.

• Trying to get enough sleep and rest.

• Finding time for exercise. Regular exercise can help reduce stress and improve health in many ways.

• Seeing a healthcare provider for a check-up, including discussion of any symptoms of depression or illness.

Figure 9.1 Exercise is beneficial to health in many ways and can reduce the stress of caring for a loved one

• Staying in touch with friends. Social activities can help keep a feeling of being connected and help with stress.

• Maintaining interests, such as reading, sports, community activities, etc.

• Reserving a reasonable amount of time for enjoyable pursuits and hobbies, such as sports, gardening or having a regular massage.

• Ensuring that there are people available who can provide respite in providing care, and that they are provided with everything they need. A well-prepared care plan that is easy to consult and follow will greatly reduce the caregiver’s inevitable worry or guilt about being absent.

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