Introduction
I chose to take care of Gil Victor Ornelas, my life partner, for the final five of his forty-one years. My duties started the day Gil was diagnosed with HIV in the spring of 1991, and they ceased on March 30, 1996.
When I learned of Gil’s diagnosis, I searched the bookstores and local library for a guide to prepare me for what may lie ahead. I hoped to find just one book with encouraging words and personal experiences to guide me through each phase of caregiving. I needed answers to the non-medical questions starting to form in my mind:
How will our lives be different dealing with his illness on a daily basis?
Will intimacy change with fear of disease? What do we need to do emotionally, spiritually, financially, and legally to be as prepared as possible?
Will Gil die at home? Are we ready to take this journey to the end? How will my life go on without Gil? What are grief and mourning, and am I already starting to feel these emotions?
My quest for answers was futile; the books were clinical and impersonal. No single guide satisfied my need for a map that would help chart a course for this excursion into caregiving and care receiving that Gil and I were about to embark upon.
Every caregiving situation is unique, and there are many open roads that lead to the ultimate destination. Every terminal illness requires modifications to the itinerary; there are always unexpected road constructions and detours. Caregiving encompasses more than the physical act of taking care of someone. One must also deal with potential hazards: ethical turns, emotional hills, and unexpected barricades. We encountered many of these when confronted with legal, medical, and financial decisions. Together Gil and I also maneuvered the roadblocks of his family’s reactions and subsequent decision to move to another state as they tried to deal emotionally with his disease.
For eighteen months, Gil’s outward appearance of good health enabled both of us to deny the virus within. Still searching for that elusive guidebook, I joined a hospice volunteer training workshop as an alternative. This endeavor began to allow open, healthy, and loving discussions about death at home. Lessons learned through hospice training paved the way for Gil’s peaceful journey.
The opportunities and choices for caregiving at home – for our family members, partners, and even strangers who become friends – are on the increase. We begin to question: Is this something we have the strength to do? What support will we have if we make this choice? Is this the right direction for us?
Once you say “yes” to caregiving, you encounter many lessons to be learned. The dying person may venture into a slow retreat from the once-shared everyday world and begin to evaluate what is most important during what time is left. I watched Gil slowly lose interest in what he termed “life’s small stuff” during the weeks preceding his going into a coma. During the week of the coma, I discovered the magic of communication without words. Once speech and movement involuntarily ended through Gil’s body’s natural shutdown process, he was able to relay important messages to me through almost undetectable movements: a sudden reaching out of his arms, an almost inaudible whisper of my name, the release of a tear.