I'm at home. It's Sunday. I'm exhausted and sleep deprived. My spouse is transferring from the bed to the wheelchair. He is almost too weak to lift himself off the bed and grab onto the walker and begin his movements. He looks like a much older man, as he has for over three years now, frail and grunting and making faces with pain, his mouth tense, his eyes squeezed together, while I help lift him off of the bed, standing by his left side, pulling upward under his left axilla, pulling hard tonight, because he is so weak. He is nothing like the man I met in 1993: so handsome, so strong, the man who made me feel protected. I'm his protector now.
I tested positive for HIV in 1989; my husband also found out he had HIV in 1996. Theoretically, I knew that one event could lead to a chain of events and ignite a seemingly endless cycle of illness and injury, an endlessly corrosive process that grates at the strongest of relationships; I knew that a pathogen could catalyze an unending series of breakdowns and symptoms and decay or death. I just didn't know that these things would happen to my spouse, and that I would be emotionally and ineluctably drawn into and simultaneously repelled by the painful and humiliating declines in health that my spouse would experience and that I would experience with him every step of the way. I didn't know that heartbreaking sadness could sometimes kindle boiling frustration.
Roughly three years ago, my spouse got Valley Fever, the so-called "rare illness" that can break down various organ systems of the body, an illness that can kill if not diagnosed and treated properly. The onset was pneumonia-like symptoms, and by necessity he needed to stay indoors to avoid further infection during the Phoenix monsoon season. He was negligently treated by a pulmonologist and given inadequate doses of an anti-fungal medication. His medication was also discontinued soon after the initial symptoms resolved. In HIV patients, the treatment should have been much higher; the dosing should have been continued, perhaps for life. Now my spouse is paying for this negligence. The negligence continued when we moved to Palm Springs in the early fall of 2012. The downward cycle changed only when I convinced him to find another doctor. If I had prayed for a doctor, I could not have found one more diligent and compassionate.
Like most people, I had no preparation for the fluctuating phases of caregiving that followed. It started in the late summer of 2012 and was followed by a cascade of emergencies -- pneumonias, edema, multiple falls and failure of balance, drenching night sweats and cognitive deficits -- all related to the coccidio (a fungal infection) that disseminated through his body, and destroyed or damaged many of his vital systems, and set off metabolic imbalances that weakened his bones and blocked the absorption of nutrients. Although the initial infection started in Phoenix, the disasters occurred after the move to Palm Springs when the fungus spread throughout his body.
There were trips to the emergency room and hospital stays, nursing home stints, several major operations, multiple fractures, hip and femur replacements, a heart attack. A myriad of crises escalated, and mismanagement of pain medications coupled with extreme weight loss precipitated transient mental impairments. Caregiving spilled into every area of my life, and the pain of his decline was amplified by the mundane tasks of managing a blizzard of medical bills, running a household, taking care of two pets, managing and ordering medications, attending doctors' visits and taking notes, preparing our home to make it safer, cooking meals, ordering medical transport -- basically trying to hold the fort against the growing forces of entropy. And there were appalling incidents of callous and inhumane treatment. I recall watching his former doctor screaming at him in his hospital bed while he was deliriously calling for his mother, crying that he was dying. I remember a physician assistant asking him if he was "attached to being a victim"; nurses suggesting hospice while he struggled to recover.
The caregiver's role is often reduced to one adjective, such as "stressed" or "overwhelmed." But human emotion and function in this situation is more complex, subtler. Emotions intensify as the pressure intensifies. I experienced Stygian depressions, oversensitivity and sadness. Yet, I compensated with assertiveness and determination. I was sometimes downright insistent when I needed to get something done. I worked hard to get messages to the people who needed to hear them. I saw that his life, at times, depended on it. That wasn't business as usual for me. When our private insurance wanted to boot him out of rehab before he was strong enough, we worked with an insurance case manager to extend his stay. When a rotating hospital physician made quick and uninformed decisions, I questioned them. Sometimes I challenged the occasional glib platitudes. In essence I said, "Look, I'm his advocate, I'm his husband, I've been with him to every doctor's visit, and I take notes. I'm doing whatever I have to do take care of him." Some of them got it.
There are other issues for the caregiver. There is a loss of enjoyment, a loss of pleasure, a sacrifice of goals and interests. There are periods of unbearable mental pain and fatigue. There is what amounts to sensory deprivation. But I have not made this journey alone. There have been helpful angels along the way.
We have a long road ahead of us. I'm not sure of the outcome, the direction, the trajectory. I wonder if I'll be able to ever sleep well again; I am so inured to worrying about him falling, worrying about losing him after this long struggle to restore him to health. But for me, there is no other choice. My life would lose all meaning if I did not give my best. People who have gone through this tell me that I'll be glad that I did this, that I'll understand it later. All I see is the unknown.
Roy Pitluk grew up in Miami. He is a retired court reporter. He and his husband of 23 years live in Palm Springs.