What Caring for Somebody Dying of AIDS Was Like
By: Alex
Tags: AIDS, Autobiographical, HIV, Gay, Death And Dying

Essay | LGBT+ | AIDS | Care Giver’s Story | Loy

What Caring for Somebody Dying of AIDS Was Like

Oh, To Have Sidestepped the Bullet Train of Your Dread Sixteen Months Dying

In 1995, 50,877 American gay men died of AIDS. As of 2018, some 700,000 Americans have died from AIDS. Someone cared for each of them. I was one. Every caregiver has/had a story. This is part of mine, telling what it was like caring for somebody living with and dying from AIDS.

For me, it was an anguish-filled 16-month period from January 1994 through April 1995 when I cared for Loy, my partner of nine years. That was 26 years ago. What I have is a broken sequence of memories of discrete instances across that time span. The best description I can give you is a recounting of some.

Loy

Loy with Mad Max the Manx. Max for short. Max died withing two weeks of Loy’s death, of kidney failure, said the vet. I think it was a broken heart.

I met Loy in the fall of 1986. His full name was Loy Dean Sloan, and everyone who knew him called him Loy Dean. That’s a Deep South custom. In the Deep South, guys named James Robert are called Jim Bob. Guys named William Joseph are called Billy Joe. Loy was called Loy Dean by his family and friends, all except me. I was a damned Yankee, and I refused to abide by Southern practices. I called him Loy. He called me Alex.

I was new to Fayetteville in northwest Arkansas, then a rather sleepy southern town. It was home to some of the most conservative, right-wing, Republican religiosity I’ve ever had to endure. I am an atheist, a liberal Democrat (somewhat left of FDR), and a gay man. I had never felt so out of place. That year, the annual Democratic Parade was canceled. One Democrat got sick, and I, being new, refused to march alone.

There was little opportunity to meet other gay people. There was one gay bar listed in the Damron Guide, but when I went to find it, I discovered that some teenage yokels from a neighboring town had burned it to the ground. I asked a young real estate agent whether there was another. He said yes, there was Ron’s Place. It was a seedy Quonset hut literally on the wrong side of the tracks.

It served liquor, so, by law, it had to be a private club. One had to buy an annual membership ($5) and sign a register. I signed as Baxendale, Hadley V. That name should ring true to any lawyer. Baxendale v. Hadley is a landmark English Common Law contracts case taught in every law school in the first year. I signed that way more out of contrariness than any desire for confidentiality. I wasn’t particularly “out” in town, but I also wasn’t closeted, and I didn’t care who knew or found out that I was gay.

My brother had introduced me to a gay couple, Rob and James. Rob was a livestock veterinarian. James was my brother’s hairstylist. They invited me to dinner a couple of times. Through them, I met another older gay couple, Michael and Andrew, both hairstylists. They liked me and took me under their collective wings. Soon, they said they wanted to introduce me to a fellow — “Just the man for you.” I was not convinced. It was the last thing I could imagine — me the big-city northern boy meeting the man just for me in Arkansas, on the wrong side of the tracks.

One night at Ron’s Place, they did. They dragged me across the bar to where Loy was playing a game of pool. During a break in the game, they introduced us. I was reserved. Loy was civil but uninterested. After a moment, he turned his back to us and resumed his game.

Unexpectedly, I was struck with a desire to know him. Something just made me take to him from the first. He wasn’t classically handsome. He had a few small pockmarks on his face, remnants from a bad case of acne left untreated. He wore a beard to conceal them. He wasn’t buff. He wasn’t special in any physical way. He wasn’t my “type.”

Yet, I needed to know this man just for me. I finagled another meeting and wound up driving him back to his apartment in the early evening. We sat talking in the car until nearly eleven, when he said, “Oh, hell, you’d better come up.” We slept together that night and every night after that, unless I was away on a case, for our nine-year partnership.

HIV positive

Loy and I took an HIV test in February 1987. We were both positive. In March, the FDA approved the first antiretroviral drug for HIV (AZT), and we began taking it. But HIV is a smart little virus. Before long, it mutated into an AZT-resistant strain. Over the next eight years, new drugs appeared serially. We took them serially as the virus mutated and became resistant to each one.

AIDS

By January 1994, none of the drugs worked for Loy. He became ill. I don’t remember what the first couple of opportunistic infections were. They were controlled by the palliative treatments then available. They weren’t cured, of course. The only “cure” was to have an immune system that would destroy the pathogens. Loy’s was severely compromised. All the treatments could do was control the symptoms and (mostly) alleviate his suffering.

CMV

Then CMV (cytomegalovirus) assaulted him. He began having malaise, fevers, muscle aches, enlarged lymph nodes in his throat and underarms, and diarrhea. The palliatives worked moderately. They worked for some of the symptoms but not for others.

Helplessness and solace

I felt, and indeed was, helpless to do anything for him. It was a torment to see him so afflicted and be unable to do something, anything, about it.

All I could do was hold him at night. As he slept on his left side nearly at the edge of our king-size bed, I slept behind him, my left arm extended beneath his neck, my right wrapped tightly across his chest. We slept skin to skin with not a millimeter separating us at any point, all the rest of that big bed vacant behind me.

He was comforted. He felt safe and at peace. I got some solace from that. Sometimes, when he pressed hard against me, I felt as if his body was melding into mine, his soul finding mine and infusing it with his light. He said he felt it too, but it was my light infusing his soul.

Looming Blindness

Later, the CMV migrated to his right eye. It attacked the retina (CMV retinitis) and threatened to blind him. There was a drug that was effective at controlling CMV retinitis. It was administered daily by injection directly into the vitreous solution. I had to learn to put a needle into his eye and push the plunger. That was dreadfully frightening. I was constantly afraid that I would blind him before the CMV did.

I had to administer the drug on an exact schedule. Strict adherence was essential. Once, while he was sleeping, I was engrossed in Mozart and missed the time. Anxiety beset me. I fretted that I had caused the medicine to be ineffective and that he would lose his sight. My anguish knew no bounds. I could not tell the doctor. For a month, I monitored him. For a month, I was a beaten man. By the end of the month, I knew I had not hurt him. The CMV infection had not progressed. I was so relieved. I was determined never to let that happen again.

Hospitalizations

There were five hospitalizations over those 16 months of his dying before the final one in December 1994. Each was for a more severe condition than the prior. Each took even more out of him. At each, the doctors would stave off the then-current infection, but his physical condition would deteriorate more. Each took a heavy toll. The emotional toll sometimes exceeded the physical. He went in each time with both of us expecting him not to come out. There were a couple of times when he did come out that I thought it more a curse than a saving grace. How guilty and selfish that was!

Home care worker

There came the point when caring for him was literally a 24/7 job. I couldn’t leave him alone. The strain was too much. I finally got us a caseworker. She found funds for a home care worker to come six hours a day for five days a week.

When I first met him, I wasn’t impressed. He was an overweight, dumpy, soft-spoken, obviously gay guy who seemed a bit scatter-brained. My immediate judgment was that he wouldn’t do.

But I was so incredibly wrong. His name was Mike. He was, in fact, gay, which helped us adjust to his presence. He did not just do his job; he became emotionally involved. He and Loy hit it off right away. I was so glad. As time went on, he began coming outside his usual paid hours. He spent time with us, and we three enjoyed it.

An afternoon in the warm San Diego sun

One day in late fall, I decided to take Loy on an excursion. For several weeks, he had been housebound with only Mike and me to bring him reports from outside. I planned a trip, a late afternoon lunch at a bayside restaurant in downtown San Diego that had outdoor seating.

I carried Loy to the car. I loaded his wheelchair in the rear. Mike clambered into the back, and off we went. We sat at a table for six near the seawall facing westward looking at the bay. There were a couple of yachts and several sailboats with full, bright, colorful spinnakers in our view. The sun was warm on us. I wore a pair of jean shorts cut off above mid-thigh and a light t-shirt. Loy had on trousers, a long-sleeve shirt, and a heavy sweater. He felt chilly, so I wrapped a blanket around him. I got the waiter to light one of the tall outdoor gas heaters scattered around and bring it next to him.

We ordered a light lunch. Mike and I enjoyed ours. Loy mostly just played with his. We sat there quietly, talking for several hours, watching the sun march toward the horizon.

Loy got tired. We left for home.

It was a good day.

Respite

I came to feel confident that Loy was safe with Mike. I could leave and take care of myself without feeling guilty or afraid. Mike would come at about 10 a.m., Monday through Friday, and stay until about four. I would go to the gym, or for a bike ride, or sit at my favorite coffee house reading. Sometimes I would go to the beach. Sometimes I would meet a friend for lunch. Often it was the owner of the coffee house. Mostly, though, I would eat alone at a gay bar in the neighborhood that had an outdoor café and a passable menu.

Sometimes I would hook up with someone for an hour’s casual sex. It might be a particularly attractive and randy guy at the gym. It might be a guy, or a couple, sitting at a table next to me at lunch.

I didn’t feel guilty about these trysts. Loy didn’t want sex; his body was too ravaged, too busy trying to fight off disease to have energy left over for sex. He even apologized a couple of times for not being a better lover. I told him I would hear none of it. I had never equated fidelity with monogamy. Fidelity is a state of mind and devotion, not a net around the genitalia.

There were times I felt guilty just for being away from him in his need. But I knew I had to take care of myself to be able to care for him. I did what was necessary to keep me sane and give me the emotional strength to deal with it all.

$10,000 worth of meds

We had a little two-bedroom, one-bath house on a canyon in a quiet neighborhood. It had three decks over the lush canyon, a fireplace, and a mahogany bar that separated the sunken living room from the kitchen-dining area. The bar was perhaps four feet long and two feet wide. It was where I kept and arranged Loy’s meds.

I remember one time, I was looking at the lineup of bottles along the bar. They occupied its entire length and width. I wondered just how much money was on top of that bar. I got a calculator and began totaling them up. When I was done, the sum was over $10,000. That was just one month’s supply. In a few days, the bottles all would be empty; new, full ones would take their place, and another $10,000 would be arrayed there.

His insurance paid for most of it. We had to cover the rest. He wasn’t working of course, and I hadn’t much money. But, I did have several credit cards, each with high credit limits. I needed it all.

CMV and HIV in the brain

By October 1994, both the CMV and the HIV had crossed the blood-brain barrier. It was a rare occurrence. Loy seemed never to get a break. The diagnosis was CMV encephalitis and HIV encephalopathy. Our doctor told me, but not Loy, what would happen over the next several months. He said that the existing medications could not pass the blood-brain barrier. Both viruses would multiply unchecked in Loy’s brain, destroying neurons by the billions. Loy’s brain would be “like Swiss cheese.” As the viruses multiplied and Loy literally lost more and more of his mind, his capacity would wain, his personality would regress.

The last Christmas

By the end of November, Loy was back in the hospital. That stay was to be for nearly four weeks. His mind had regressed to the point where he was as a child. It was incredibly difficult to see him that way. I cried all the time when away from him. The tears flowed when I was with him as they do now. As I write this, I can’t see the keyboard for them.

He would ask why I was sad. One day toward the end, he took my hand in both of his. He looked into my eyes, then glanced away. He said, “Alex, I’m really sick, huh?” I barely managed to choke out, “Yes, but it’s OK. I’m here.”

The next day was December 24th. I took him home against medical advice. Our doctor had told me Loy was dying. I wasn’t going to let it happen in there.

I hadn’t felt like decorating for Christmas, but on December 23rd, I bought a little two-foot artificial tree with lights and snow on the needle tips. I put it on an end table placed next to the fireplace. I put a couple of small presents for him under the tree. Before going to get him the next day, I plugged in the tree and lit a fire so he would see them when I brought him in the door.

By March, he was bedridden. He needed a catheter and a diaper. The catheter needed changing daily. Each evening, I held him with my left hand and inserted the lubricated tube with my right. I had to feel when it went too far and back it off a bit. It was a clinical procedure, yet, at the same time, an intimate act. The diaper needed changing more often. I did that too for him.

I had a hospital bed brought in and placed to the right of our bed, as close to it as possible. I put him in it — a place I knew he would never leave alive. I slept as close to him as I could at the right edge of our bed, my right arm resting on his bed’s rail.

April 28, 1995

I won’t write much of the next month. Mike only came to be with me occasionally. I was alone with Loy. I didn’t leave him. He slipped into a coma, and my days became routine. Change the catheter; change the diaper; bathe him and make sure he is clean. Mindlessly watch television in our bedroom, not knowing what it is, not caring.

He died on the afternoon of April 28, 1995, just one of the 50,877 gay men to die that year. Woodenly, I called the funeral home, and they took his body away. The black shroud they put over him wasn’t long enough. As they trundled him out, one naked foot dangled off the end of the mortuary trolley.

That was the last I saw of him. I had the hospital bed removed that evening. I was 47. He had been 35. That night, I slept naked as I always had with him, but alone in the desolate, king-size bed.

The nine-year chapter of our life together closed.

Memorial

I didn’t go to the little memorial viewing we had in San Diego. I went to his funeral in Fayetteville, but I didn’t go up to the open casket. I had difficulty finding the burial site. It was 40 miles out of town up a winding dirt road on a mountainside. It was a small, private, mountain-top cemetery. A little rivulet of fresh, pure water, fed by an artesian spring a bit further up the mountain, ran alongside it.

They hadn’t waited for me. When I arrived, the graveside ceremony was well underway. I stood alone at the rear. Loy’s family sat up front, near the casket, already having forgotten me. Our doctor, who had cared for us the six years we had lived in Fayetteville, came to stand by my side. She put one arm tightly around my shoulders. Tears stained my cheeks and ran like the rivulet off my chin.

Generations of Loy’s mountain kin had lain for 200 years in that pocket-sized cemetery under marble- and granite-marked graves that were only a little tended. Now, this gay man still in the early years of his life was lying with them because two damned viruses had eaten up his brain and stolen his mind from me.

© 2020 Steve Alexander