The ever looming shadow of caregiving
BMJ 2024; 385 doi: https://doi.org/10.1136/bmj.q726 (Published 24 April 2024) Cite this as: BMJ 2024;385:q726
- David Kang
- davidkang{at}college.harvard.edu
Our household doesn’t rely on alarm clocks. Instead, it’s the consistent thumping of my 18 year old brother’s foot against the side of his crib that signals 6 am. His profound autism and developmental delay are woven into the fabric of our family’s daily routine, and his silent cues shape our interactions. Breakfast, a simple meal for many, is an intricate dialogue for us. My brother doesn’t communicate with words, but his actions speak volumes. A fleeting smile and hand rub mean yes, while a whine or deliberate head turn signals no.
The complexity of caregiving
My life is completely mapped out by my caregiving role. Home based care requires understanding of the unique environment my brother needs to feel secure and happy. This means that after he is tucked in bed at 7 pm, the whole house must maintain a library voice to avoid waking him up. It means always remembering to close doors around the house to keep my brother safe. These are only some of the many considerations for an autism-friendly environment.
In addition, the routine of my brother’s caregiving dictates my family’s schedule. Once my brother wakes up, our family adheres to the daily itinerary. One of us must keep an eye out for him at all times, and it is only when he goes to school that the rest of us can do our own things without worry. It is these daily routines that keep my brother and the rest of our family balanced. To keep the bright smiles on his face, our family must work hard without breaks every day.
The unrelenting nature of caregiving
Chronic stress is an unspoken part of caregiving and casts an ever looming shadow on caregivers. Recent events in my family have highlighted the unrelenting nature of caregiving. When my mother was admitted to hospital following a serious road traffic incident, my brother’s needs didn’t pause. With my father juggling visits to the hospital and his job, the full weight of my brother’s care fell on me. Amid managing his daily routine, my own concern for my mother’s health, and preparing for my exams, the days became a relentless cycle of responsibilities.
During this time, the absence of a support system for caregivers like myself became glaringly apparent. Managing my brother’s care solo highlighted the need for accessible caregiver groups and recognition from healthcare professionals of our critical role. During my brother’s numerous medical appointments, the focus remains squarely on him, with no healthcare professional extending the conversation to inquire about my wellbeing. This gap in care suggests a need for a dual focus approach in medical practices: one that cares for the patient and also checks in on the caregiver’s health.
What the future holds
During my brother’s medical appointments, decisions were sometimes made without considering my input, despite my deep understanding of my brother’s needs. I can feel like a bystander in these appointments, andI’ve often wished to play a more active role in planning for my brother’s future, as I will eventually become his primary caregiver. I want to live an ambitious life and I have many goals, and the thought of my brother’s future is a puzzling concern.
Yet, this caregiver responsibility, initially seen as burdensome, has given me important skills. I have developed patience, empathy, and the ability to communicate without words, which are now cornerstones of my identity. If it weren’t for my brother, I wouldn’t have the same depth of understanding about the intricacies of non-verbal cues, something that surprisingly comes in handy even outside my caregiving role. Envisioning a future where I continue to care for my brother, I’m armed with resilience, empathy, and advocacy lessons. I may be his caregiver but he has also given me so much.
What you need to know
Being a caregiver of someone with profound autism is complex and involves the whole family
Ask caregivers how they are, and regularly screen for caregiver stress or provide other means of assistance
Consider involving siblings in decision making; they may become the main caregiver in the future
Education into practice
How could you ensure that you are involving caregivers in treatment plans?
What resources or information could you share to provide support to a family of caregivers?
Footnotes
Competing interests: none.