Last week, a friend of mine and I had a lengthy discussion about the burden of caregivers. It was one of those instances when you know the other party just wants to vent and so I allowed her to talk and let out her frustrations. Initially, the conservation centered around her aged mother, who had suffered a stroke two years ago and was bedridden. Her mother was barely conscious and required to be bathed, fed and turned from side to side. My friend was the eldest child and so the burden of care fell chiefly on her. When I asked her, how she (my friend) was coping, she simply burst into tears.
She was tired, she confessed. She travelled every two weeks to her mother’s village to spend five days with her. Her lower back and arms hurt from lifting her mother from the bed to the toilet as her mother was obese. My friend would drive her mother every month to the nearest FMC for her follow-up visits. Each visit required blood tests and new medication. Her hands would be sore for days from pushing the wheelchair. After that, she would buy her medication and label them properly for dispensing by relatives. She would clean her room and buy foodstuff for the house. Sometimes she even cooked and washed her clothes. Cousins and distant relatives were deployed to take care of her mother but still felt the care was suboptimal.
Coupled with the financial and physical strain of travelling was the guilt racking her soul. She felt guilty whenever she was leaving her mother; she described it as something akin to dissertation. Yet, she also felt relief whenever she was leaving. Then, she would feel guilty that she was feeling relief- a vicious cycle of guilt and pain. My friend lived in the FCT with her husband and two children in a two-bedroom apartment. The house was already cramped and so she could not afford to bring her mother over. Moreover, she worked; therefore, her mother would still be left alone or at the mercy of a house help in the mornings. She had two other siblings who were boys and in the university, unmarried and unemployed. There was no way out.
Caregiver burden has been largely overlooked by clinicians and in various intervention programs. Informal caregivers have been called “the invisible patient” as they are often forgotten; physicians and clinicians may neglect to ask caregivers about their own mental and physical well-being throughout the disease course of the patient. The informal caregiver often takes on many duties, such as assisting with basic activities related to illness management like managing medication and treatment regimens, scheduling and accompanying the chronically ill individual to and from medical visits and checkups, and making treatment/management decisions.
Depending on the type and severity of chronic illness, caregivers may take on an even more advanced role in assisting the patients by making meals, taking on household chores, running errands, and assisting them financially. Finally, on top of all of these responsibilities, the caregiver is often a primary source of emotional support and comfort for the patients. Whether it is a spouse, child or parent, caregiver burden is often monumental and associated with many consequences.
I listened with half an ear as she recounted her problems. Half an ear I say, because I already knew the problems she would face. The frequent travelling was causing a strain on her home and marriage. Her husband, whom she felt should be more understanding, was making snide remarks about abandoning her home frequently. At work, her frequent disappearances and ‘casual leaves’ were becoming a point of ridicule and source of punishment. Her immediate boss would threaten to report her to the office if she did not comply to his every instruction. She was tired mentally and physically and was therefore sliding into depression. Her finances were taking a hit and yet she cried out to me ‘Am I bad person for complaining? I should be able to take care of my mother mana!’
I wanted to tell her that her story was not unique. That countless people all over the world went through the burden of caregiving. That research has shown that caregivers that experienced higher levels of burden tended to be less likely to engage in self-care, may experience weight loss, anxiety, and sleep deprivation (particularly in caregivers of partners with dementia). In addition, caregivers often reduce their hours of employment to provide proper caregiving which can lead to further financial strain. Lastly, caregiver burden is a unique predictor of mortality risk and suicide.
In most settings, the primary caregiver is commonly a woman- a daughter like in the case of my friend, a wife or a mother. But no matter the relationship, the strain is always the same. A mother of a child with a severe form of cerebral palsy once blurted out to me in the heat of a conversation, that she wished her child would die. After saying so, she immediately muttered ‘Astagfirullah’ and started weeping. Her six-year-old daughter could not talk, walk or stand. The mother spent everyday cleaning her poop and feeding her via a syringe. Her social life had come to a standstill, as she could not attend weddings or naming ceremonies of friends and relatives; she had a child who was incapacitated and fully dependent on her.
A wise Professor of Neurology once said to us as residents: ‘Men, be kind to your wives and children, especially your daughters. Chances are your wives or daughters will be the ones to take of you in your last days. I do not need to warn you of the dire consequences an aggrieved spouse could pos when she is your primary caregiver. Toh!’ He usually repeated this joke as we strolled through the stroke ward, watching elderly patients being nursed by their wives or daughters, but the message has always stuck with me.
As we grow older, I am beginning to see the truth of his words in my friends, relatives and patients. The common denominator in this caregiving debacle is the overwhelming stress and declining mental health it causes. That is why physicians should learn to look beyond the patient with chronic health issues and ask- who is taking care of him or her? How is that person coping? How can we help people like my friend? What role can we play? Is it not time we started to consider the possibility of nursing homes in Nigeria? For how long can we continue this informal caregiver burden? How can the extended family system solve this problem? In this era of industrialization when both parents work- how do we cope in the future? Who will take care of us in old age and sickness?
And because, these are tough questions to ask and tougher yet to answer, I just listened to my friend as she wept and bared her mind. Her emotions, raw and undiluted as they were needed an outlet and I was her sounding board. I murmured all the usual soothing replies- her reward would be in the hereafter and that Allah would make it an expiation for her sins. At the end, she wiped her tears and said goodbye.
May the Almighty give us the strength to bear our burden when the time comes, ameen.
