The Duality of Caregiving and Caretaking

The moment I was diagnosed with sickle cell anemia, my parents, specifically my father, knew the presumed fate of his 18-month-old baby, Wunmi. Sickle cell disease (SCD) was not a foreign concept to my dad as he had played the role of a sibling caregiver for many years.

What people may not know is that Nigeria is the epicenter zone for sickle cell anemia. In Nigeria, 150,000 newborns with sickle cell are born annually (approximately 33% of the global burden of SCD). To offer a clearer perspective, 1 in 13 African Americans are born with the sickle cell trait. In Nigeria, 1 in 4  Nigerians has the sickle cell trait.¹

A family of warriors

On my father's side, my grandparents and all 10 children had firsthand knowledge of the impact of SCD on the family unit. They had front-row seats to everything, watching the havoc this debilitating blood disorder caused.

As members of Jehovah's Witness, their religious teachings adhered to a strict moral code. This code forbids blood transfusions as a form of medical intervention. Bound by this religious construct, the Bakare family mourned the untimely passing of their 2 children – my Aunt, Bukola (32), and my Uncle, Tunbosun (23).

A wake-up call

It was incredibly hard to cope with the loss of 2 siblings. My father knew that both deaths could have been avoided if they ignored their religious beliefs and sought medical intervention. Consumed by grief, my father gradually strayed from the Jehovah's Witness doctrine. He married my mom, who was raised in the Catholic faith – a religion that supports organ donation, blood donation, and blood transfusions.

My parents got lucky with their first child, as my brother was born with the sickle cell trait. My mother had no known relatives with sickle cell disease. Also, she was seemingly unaware that she was a sickle cell carrier (AS) until I was born. Learning that I had HbSS, the most severe type of sickle cell anemia, was extremely difficult for the family to process or accept.

For my father, accepting the diagnosis meant re-living traumatic experiences he lived through as a caregiver to his siblings. But as a parent, he knew he had to step up so his daughter could beat the odds. As far back as I can remember, sickle cell has been a major part of my life; determining my life choices and influencing the interpersonal relationships in our family dynamic.

The role of a caregiver

The Oxford Dictionary defines a caregiver as a family member or paid helper who regularly looks after a child or a sick, disabled or elderly person. In many cultures, caregiving is an unpaid task that involves caring for others from a place of love and lifelong commitment.²

From birth, my parents have been my primary caregivers. The sacrifices they've made to ensure that I am well-equipped to navigate life with sickle cell disease is simply remarkable. My mother personifies love, strength and selflessness; always owning her quest for survival while teaching me how to be my own advocate.

Principles of caregiving

Researchers suggest that the primary parent in a family unit often experiences additional emotional strain much like parents of children with other chronic illnesses. Although this statement might be true for most people, my mother would not let sickle cell take its toll on their marriage. She made sure the relationship between both parents was minimally affected.

My father had an understanding of sickle cell disease. He took note of the health complications it presented while making sure we had access to good healthcare. Our medical needs were always a #1 priority. Both parents did all they could to ensure that my diagnosis did not negatively impact my brother's welfare.

Particularly during bouts of hospital admissions, when additional stress was placed on the family unit. They were never too proud to ask for help from extended family or people in our close community, especially during challenging times when they struggled to maintain a suitable work/life balance.

The ambiguity of roles

As I aged, the nuances of my sickle diagnosis proved difficult at times as there were moments where I could sense that my mother was dealing with caregiver burnout – a state of physical, emotional and mental exhaustion. I was sympathetic to her symptoms which included weight loss, sleep issues, and a loss of interest in social activities.

It became increasingly important for me to take on the role of caretaker for my mom. She desperately needed someone who could keep a close eye on her well-being and offer support when needed, even in the simplest way possible. For me, it was time to be there for her, the way she had been there for me. As a family unit, we were able to quickly pin point the source of her anger/irritability, fatigue, and anxiety, and looked into hiring a maid and an at-home tutor to take on some tedious responsibilities.

A common goal

Caregiving and caretaking share a common goal but there is a duality to both concepts. As a caregiver, you have to honor your child’s individuality but also remember that establishing healthy boundaries is important. When things get hard, you have to prioritize privacy and self-care. Step back, get some mental rest, and create some distance for you and the care recipient to heal.