Being a Caregiver

The family conference was convened in a spare room in the busy cancer ward, to update family members and to discuss care arrangements. Mr K, the patient, did not attend as he felt tired; in any case, he had said he had no particular preference and would defer to his family. His wife and daughter J had very different but equally strong opinions – Mrs K wanted to take her husband home, while J wanted to let her father be cared for in an inpatient hospice.

J shared that the patient had been a drinker and gambler and was verbally and physically abusive. He had abandoned the family for a number of years, only coming back when he became ill. “I don’t understand why my mother still tolerates his nonsense!” Mrs K, on the other hand, said simply “whatever happened in the past, he is still my ah lau (husband).”

Both parties held firm, and both positions seemed reasonable. So while it was useful to get the facts and feelings out in the open, we were no closer to the answer of where Mr K would be cared for, and who would take care of him.

Such scenarios highlight that caregiving is not as straightforward as we would like to believe, and although most of us will one day be caregivers and/or need care ourselves, we do not give the matter much thought, let alone make preparatory steps, until we are eventually forced to.

WHAT IS A CAREGIVER, AND WHO ARE OUR CAREGIVERS?
A caregiver is someone who either provides hands-on care, or ensures that care is provided, which could be paying for services or care providers, or handling coordination or organisation tasks. Most caregivers are family members and in Singapore, there are also a large number of foreign domestic workers (FDWs) who are engaged to provide physical care.

The Ministry of Culture, Community and Youth-supported Survey on Informal Caregiving (conducted in 2010) found that in Singapore, caregivers of elderly people aged 75 years and above at home were mainly female (60% of respondents). While three quarters of caregivers were children (more daughters than sons), 16% were spouses, who were themselves elderly. Half of the caregivers engaged FDWs to provide care, although only 45% of the FDWs had any prior experience or formal training in caring for the elderly.

WHAT IS THE “COST” OF CAREGIVING?
The AARP and National Alliance of Caregivers in the USA estimate the economic value of care provided by family caregivers – typically female, generally unpaid – as US$470 billion a year. There is no corresponding information for Singapore, but there is certainly a financial impact, as the cost of home care services is not usually covered by insurance or Medisave, and requires cash payment.

What other “costs” are there and what is the impact on the caregiver? The same Survey on Informal Caregiving found that on average, respondents spent 38 hours per week giving or ensuring care for the elderly care recipient. Caregiver stress correlated with increasing disruption to the caregiver’s own schedule or pressure from financial or health problems, and was also increased if the care recipient suffered from depression. Spousal caregivers were more likely to be negatively impacted by their caregiving role than were children caregivers.

Yet many caregivers also derive great fulfilment and satisfaction, and like Mrs K, want to provide care as long as they can. So the whole experience of caregiving, like any human activity, is not just physical, but has social, cultural, emotional and psycho-spiritual dimensions.

WHAT HELPS?
Being adequately prepared for the practical tasks at hand is an important first step – such as obtaining information about what to expect, training, equipment, etc. Fortunately, there are resources here, both in the hospitals and in the community, including websites like AIC (Agency for Integrated Care) and Singapore Silver Pages. Hospitals have medical social workers and care coordinators who can help patients and families navigate the sometimes bewildering array of services and subsidies.

Caregivers also need to be aware of the importance of self-care, to prevent exhaustion and burnout. Support for caregivers can come from a variety of sources, such as friends, family, other caregivers, faith communities, support groups and professional care services. A survey conducted by our hospital found that caregivers of cancer patients receiving hospice home care had better quality of life than caregivers who were not similarly supported.

Support can come in many forms; sometimes seemingly small acts can make a big difference. When a friend of mine in New Zealand was caring for her husband, she found it enormously helpful when other friends came over for a few days to do housework and cook, so that she could concentrate on caregiving.

KNOWING ONE’S LIMITS, KNOWING ONE’S ROLES
Adult children may find themselves juggling multiple responsibilities and “caught” between caring for their ageing parents and their young children. Welcome to the “sandwich generation”! In our increasingly globalised society, families are increasingly scattered across time zones, and children may also have to grapple with rendering care from a geographical distance.

Caring for one’s parents can be tricky because they may disagree that they need care and/or have their own ideas about what should be done. It does not matter if you are the CEO of a multi-national company: the parent-child relationship is always there, and since you cannot put Dad or Mom in the naughty corner, you just have to negotiate.

No one needs to get it right the first time, and it is fine not to know all the answers. It is a learning experience and a time of adjustment for everyone, not only for the caregiver, but frequently for the care recipient as well. It does not have to be perfect, just good enough.

ARE HEALTHCARE PROFESSIONALS “BETTER” CAREGIVERS?
Healthcare professionals may have the advantage of having “inside knowledge” of the system, more people to contact, and the ability to pull certain strings. Often, medical colleagues, knowing the patient is your relative, may go the extra mile. But ironically, this may put the patient at a disadvantage.

A fellow Palliative Care specialist and I were reflecting that both our fathers had heard about their cancer diagnoses after their children did, despite being retired senior doctors themselves. I appreciate that our concerned colleagues wanted to ensure we were kept in the loop, and in some way my father did not have to break the bad news to me himself. But I had to remind various doctors along the way that my father was perfectly capable of making his own care decisions.

No doubt about it, I was glad to have been able to open doors for my father – having been “Dr Chan” in his own right for 50 years, he would tell friends about the unusual experience of being introduced throughout the cancer centre as “Dr Chan’s father”. We disagreed on certain points about his choices, but I decided these issues were not worth fighting about. But when all was said and done, I felt the most gratification when I took on the caregiving role I was most qualified to do, and that was to be his daughter.