My story of being a husband and caregiver; Written by Peter Gichu and Pretty Joy Gacheri
Dear care-friend, meet Jenkins
Jenkins described himself as a husband, son, brother, and friend to many. He mentioned that during the day, he works as an engineer, and in the evening, he fulfils his role as a husband and caregiver to his wife. His wife suffers from a rare neurological disease that affects her motor abilities and is often associated with fatigue. Because he has taken on many of the household duties typically managed by the wife, he humorously refers to himself as the “houseband.”
“There’s a common misconception that caregiving lacks personal fulfilment. However, my experience has shown me that true fulfilment can be found in the everyday acts of care. It’s the dedication to those seemingly ordinary moments that brings the greatest satisfaction” Jenkins O.
Questions
- What role do you play as a caregiver?
Jenkins is the primary caregiver to his wife, who suffers from a rare disease called Ehlers-Danlos Syndrome, which affects approximately 1 in 1000 people. His wife was first diagnosed with the condition after she tripped during a vacation and her condition worsened despite undergoing two surgeries. The disease primarily affects connective tissue, causing joint instability and looseness. Jenkins manages most of the household chores, including preparing and cooking meals. Additionally, he assists his wife with mobility, as she cannot walk independently without using a Rollator.
- How has being a caregiver affected your life, from the time of diagnosis to now?
Jenkins shared that receiving his wife’s diagnosis while they were dating did not deter him from marrying her; rather, it strengthened his resolve to support her. Consequently, they were married in the year 2019 and have been together ever since. He mentioned that his wife’s diagnosis has made him more intentional in his relationship with her and more conscientious in his professional life. As a civil engineer, he now ensures that the designs he does take into consideration accommodation for persons with disabilities. He has made various adjustments in his life, including a personal commitment to help his wife achieve her goals and dreams, enabling her to live as near a normal life as possible.
- What have you learned on your journey as a caregiver?
Jenkins remarked that there is a distinct and often overlooked world for those who require care, where they long for a normal life that is typically taken for granted by others. He emphasized the importance of not taking everyday abilities for granted, such as the ability to walk across the street or descend a flight of stairs.
He also noted that he is more aware of environments that diminish accessibility to individuals with disabilities.
- What challenges have you encountered as a caregiver and how do you deal with them?
Since we are all created in the image and likeness of God — a God who is both loving and an all-consuming fire — men can embody both delicateness and strength. Jenkins O.
Jenkins discussed the frustrations that often arise in caregiving, which can sometimes be mutual. For example, the person being cared for has her own dreams and aspirations that are hindered by her illness, and the caregiver may struggle to fully help her achieve those goals
He also mentioned that there were times when he would react angrily. However, over time, he made a conscious decision to avoid snapping and instead take a pause to recognize and understand what was causing his frustration. He reflected on whether he would want to be treated the same way if their roles were reversed. Jenkins also draws upon his Christian faith, which instructs husbands to love their wives as Jesus loved the church. He explained that Jesus’ love was so profound that He sacrificed Himself for the church, and similarly, he believes in setting aside his own dreams and ambitions to care for his wife. This perspective guides him the most in his caregiving journey.
- What goes unnoticed when it comes to male caregivers?
Jenkins highlighted that male caregivers often go unrecognized, largely due to cultural biases that view caregiving as a role exclusively for women. These biases perpetuate the misconception that men are not involved in caregiving. By serving as a male caregiver, Jenkins is challenging these cultural norms and advocating for the recognition that men are equally capable of caring for their loved ones or clients/patients, thereby contributing to a more inclusive understanding of caregiving roles and helping individuals lead more comfortable lives.
- What advice can you share with fellow male caregivers?
Speaking from his own experience, Jenkins emphasized that while he is not an expert, he believes male caregivers should always strive to be kind and patient with those they care for. It is important to allow the individuals they care for to be their authentic selves, acknowledging their dreams and goals, and helping them to achieve these aspirations
He advised that caregivers should remember that situations often choose us; we do not choose them. There is nothing wrong with a man providing care, despite societal expectations that depict men as solely brave and women as delicate. Jenkins highlighted that since we are all created in the image and likeness of God — a God who is both loving and an all-consuming fire — men can embody both delicateness and strength. The key is to find the proper balance between these qualities.
- What has been your silver lining when it comes to caregiving?
Jenkins described his caregiving journey as one of profound self-awareness, benefiting not only himself but also the person he cares for and their relationship as a whole. He has become a better version of himself, a change that his wife has positively acknowledged, noting his significant personal growth since he began caring for her.
He also mentioned that his wife noticed further positive changes after he attended the “Mindful of Me” program by Suruvi – Care for Caregivers. This increased awareness has led him to explore new leisure activities, such as visiting art galleries and developing a deeper appreciation for art. Additionally, while he already knew how to cook, his culinary skills have improved significantly through his caregiving experience. He also talked about how he started a fitness regime to be able to take care of his wife in a more efficient way and realized that physical strength was also important in his caregiving role.
Conclusion
Being a caregiver doesn’t have to limit your sense of purpose or joy. You can find enrichment and fulfilment in the relationships you nurture and the moments you share with those you care for. Always take a moment each day to appreciate the ordinary miracles that make life possible, like breathing, seeing, and walking. These are gifts that some may not have, and a shift in perspective can bring immense gratitude.