Date: 30th September 2024 | Issue #2
~A helping hand can be a ray of sunshine in a cloudy world~
A cancer diagnosis marks the beginning of a journey often fraught with fear of the unknown, anxiety and despair, but which many hope will end in cure. Many factors determine the course of treatment adopted, including the type of cancer, the stage at diagnosis, economic status of the patient and the available technology and expertise. The journey for a cancer patient involves multidisciplinary personnel that may include surgeons, oncologists, radiologists and nurses, who form part of the medical team. In addition to the medical personnel, family members or close friends may act as caregivers in a non-medical capacity.
The role of a caregiver usually befalls an individual without warning, and finds one unprepared mentally, financially and skillswise. Unfortunately, in some cases, the burden of caregiving is carried disproportionately by one individual, with little or no support from other members of the family. According to the American Cancer Society, the roles of caregivers are many and vary depending on various factors such as whether treatment is inpatient or outpatient, and whether the patient is undergoing treatment or has finished the course of treatment, among others. Some of the roles include giving of medicines, monitoring side effects, preparing meals and feeding the patients, grooming the patients, arranging doctor’s appointments, and keeping doctors and other family members informed on the patient’s progress. In many cases, this involves the caregiver being with the patient full time for many months or even years. Since these roles touch on all aspects of a patient, caregivers have a huge influence on the wellbeing of the patient.
Caregivers face many challenges that can negatively affect their ability to carry out their roles. Since most caregivers are not professionally-trained, they often have limited skills or expertise to handle the patients. For instance, if a patient is bedridden, the patient will need to be turned every so often, may require administration of medicines through injections, will probably be on adult diapers and may need assistance with feeding. Some of these tasks such as administration of injections and turning the patient may require skill and can be overwhelming for the caregiver, especially if the caregiver is not as physically endowed as the patient. Some patients may not be very cooperative with the caregivers. Cases have been reported of patients refusing to eat, take medication or even follow routines prescribed by medical professionals. There are even cases where patients have been reported to be abusive and physically violent to their caregivers. Finances can also pose a great challenge to caregivers. In addition to treatment costs, other costs such as purchase of adult diapers, provision of special diets, and payment of home-based professional care is a major burden to caregivers. The situation is made worse in cases where the caregiver is forced to take time off from work to take care of the patient, with little or no support from other parties. There is also the mental toll that most caregivers go through. Helplessly watching a loved one endure pain and/or deteriorate, coupled with the stress associated with the many challenges they face, can drive most of us to the edge.
However, all is not lost. Caregivers are cognizant of the critical role they play in the wellbeing of the patient. Thus, they seek to take care of themselves first, before they can take care of the patients. There are many support groups and organizations that have set up programs to train and support caregivers. Some of these organizations double up as patient advocacy groups to lobby policymakers and government agencies to lower cost of treatment and other essential supplies for patients. Other organizations have set up campaigns to raise funds to support treatment of patients who meet certain eligibility criteria. Sometimes all one needs is to vent to feel rejuvenated. Other times one needs information or links to resources available for patients and/or caregivers. This can only happen if one deliberately reaches out to those around them that are willing to support. It is also a challenge to family members or friends of caregivers. Do we check on the wellbeing of the caregiver? Do we offer support in terms of finances, time or even psychosocial support? We can offer to watch the patient for one day as the caregiver takes time off to unwind or to run personal errands. We can buy that one pack of adult diapers, or the special foods that the patients require. Once again, the role of a caregiver usually befalls an individual without warning, and finds one unprepared mentally, financially and skillswise. It would be unfortunate if we were to lose a caregiver because of lack of support.
Are you a caregiver out there struggling in the journey with your patient? Do not walk the journey alone. Look for support around. Ask the medical professionals to recommend support groups that you can join. When you go for doctor’s appointments, interact with other individuals in the waiting area. You will be surprised at the wealth of valuable information and knowledge that you can gain from others walking the same journey. Are you a friend or family member to a caregiver? Check on them once in a while.
Dr. Peninah is a researcher at the Integrated Cancer Research Foundation of Kenya.