Remembering the caregiver
It is a rainy January afternoon. John calls to cancel a planned weekend. He is leaving the city, he says. Why would he?
It began with a summons to the boardroom by his company brass. He had become less productive, they said. He hadn’t taken any weekend assignments for months and seemed absent-minded for most of the week. He had been late for too many Mondays. He had been one of the most valuable employees for years, and the sudden change was worrying. Could he explain, they asked.
I knew that his mother had been diagnosed with cancer a year earlier. He needed to be there to care for her. He explained this to them, but after years of productive work for the company, he got little sympathy. The company had targets and needed someone who was focused on these targets. It seemed cruel, to throw him in the cold like that.
He had confided that the strain of caregiving and working was taking a toll on him. After months of being circumspect about his situation, he agreed to start taking antidepressants. He grappled with the choice between working and caring for a mother whose condition was deteriorating fast. His siblings lived abroad, his father had been dead for years, and he was the only one she had. Hired help could only do so much.
What if, I wondered, the role of the caregiver was respected enough to be worthy of a “caregiver leave”?
The unsung heroes
All discussions surrounding health and healthcare neglect the critical role of the caregiver. The current hype about cancer in Kenya is about cancer centers, cancer medicines, etc. all of which are important. But we neglect the crucial role and burden played by the caregivers.
In all forms of long-term or terminal conditions, family and friends play a role more significant than anyone within the organized health care system. These caregivers are the backbone of chronic care. In diseases such as hypertension, diabetes, asthma, and others, most of the patient’s issues occur not in the hospitals but the family and workplace. The adjustments needed to remain healthy such as dietary changes, finances, and assistance to daily needs, all fall on the shoulders of those closest to them.
These caregivers have to make significant sacrifices. No matter the extent of these sacrifices, they face increased stress, depression, and risks to their own physical health. Compared to the general population, caregivers face:1
- Higher risk of depression and anxiety
- Career disruption
- Poor self-care including nutrition
- Physical condition such as hypertension
- Increased risk of early death
The condition of caregivers is made worse by a lack of support from the health care systems. Doctors often focus on the patient and ignore the caregiver. They get little information regarding the condition and how best to care for their loved ones. Usually, they are kept in the dark about the prognosis. These uncertainties contribute to anxiety.
When treatment is costly or unavailable, the caregiver bears the burden. These external factors complicate caregiving. For terminal illness, it may leave the caregiver with serious mental issues, especially if they blame themselves for not doing better.
What should be done?
- Appreciate the role of caregivers as vital in NCD care
- Equip them with as much information as possible
- Provide a support system where people can call for support
- Create support groups for the affected person
- Support employees or friends who are struggling with the burden of caregiving.
The urgency of health care reform is not only for those already diagnosed. The burden of disease goes beyond the statistics of prevalence and incidence. Behind every person with a grim diagnosis is a family, their friends, their colleagues, all of whom are affected in one way or the other. Long distances to hospitals, empty drug shelves, and expensive alternatives have ripple effects throughout society.