The earliest I heard of the word hospice occurred when my first husband was hospitalized in 2004. He had been diagnosed with end-stage renal failure ten years back. We had known then that one day the kidney disease would rear its ugly head and we’d have to deal with the inevitable – the end of his life. That fateful day came. His condition worsened and his body system started to shut down. The head nurse reluctantly suggested hospice to me. Equating hospice with death, the very word shocked me to the core. Well, hospice did not have a chance after all. His deterioration hastened to a point where all the involved specialist physicians voted to give my family the dire option of removing my husband’s life support. Being the wife, I had the unenviable task of releasing his end-of-life directive: Do Not Resuscitate (DNR). The hospital bed literally became his death bed.
That was 12 years ago. Last month I watched my second husband, 82-year-old Octo, leave his body on his death bed after only 7 days in hospice. After 8 years of marriage, I became a serial widow.
Diagnosed with acute myeloid leukemia, Octo’s health spiralled downward rapidly to death in 3 months following 3 treatments that included a clinical trial. He had been needing blood transfusions at least twice a week. Finally, his primary care physician mercifully recommended hospice.
Octo had always refused any talk of mortality stuff like last wills and testament, power of attorney, and end-of-life directive. After the leukemia diagnosis, I told him, You and I are now in a race for the grave. He did not appreciate graveyard humor, but his primary care physician forced him to come eyeball to eyeball with death. You have three months my friend, stated Doctor Diplomacy. For consolation, the good doctor added, You are not alone. We all have a beginning, a middle, and an ending. Octo eventually warmed up to the morbid sense of humor.
Henceforth, Octo and I discussed hospice as if we were talking about the movie for our next background acting project. We both thought hospice was a place, a building. Only at signing time did I realize that our manor would be the venue for the hospice action and I would be the hospice majordomo. Before Octo’s signature ink had dried, it suddenly hit me that the man who had been playing a major role in my life for the last 8 years would in fact be gone for good. Of course there was no guarantee that I would not exit this earth first, but the hospice reality was so there and then. I choked up all day.
Hospice Day One started with the visit of the hospice nurse, an RN. She took Octo’s baseline of weight, blood pressure, pulse rate, arm circumference, etc. Still mobile, Octo slept a lot in the master bedroom or in the guest room. He had the run of the hospice house.
Day Two. Ms RN gave me, away from Octo’s sight, the inevitable patient needs: diapers, hospice journals, and Comfort Kit consisting of morphine, measuring syringe, Lorezapam drops for anxiety. She taught me when and how to dispense them. In Octo’s face, she suggested a hospital bed. Bullshit! Declared Octo adamantly.
Day Three was uneventful. He had a bite of a banana, the only food he wanted, and with water, his only intake for the day. I did not force him to eat. First, Octo was a hard-headed old mule. Second, the purpose of hospice is neither to impede nor speed death but to let nature take its course. A couple of times we laid in bed, he in a reflective mode and I a listener. I made many mistakes in my life, he said ruefully. I said, You sure did, and I laughed. He cracked a smile, no belly laugher, he.
Day Four. He did not want food, only water. He did not ask any more for his daily pre-hospice medicatons. A couple of times we laid in bed again, he reflecting some more. Long reminiscences. My thoughts jumped between them and my strategizing of the next sushi dinner. It happens when one is in the twilight zone, straddling one’s life and another’s imminent death. One needs protein. He stayed in bed most of the time except when I caught him naked as a jaybird and trying to climb into the bathtub. His body trembled, visibly too weak. You are going to fall! I screamed, and like football safety Junior Seau, I tackled Octo around the waist from behind. Big mistake! I did not have the required strength. He wiggled his body and sent us both on our butts on the tiled floor. He tried to stand up. Hold on to the wall! I screamed. His trembling hands groped and grabbed the shower curtain and the curtain rod came down on our heads. Frustrated, I stood up. He sprawled out. After resting, he very laboriously, a few inches at a time, crawled toward the hall.
I decided it was the perfect opportunity to find out if the hospice’s touted 24-hour phone service really worked. It did, but Octo heard me talking. He yelled, Don’t call anybody! I don’t want those emergency people here! I replied, I called the hospice, our 911. You need help to get back on your bed. You need a hospital bed. Bullshit, he said. I’ll crawl to the bed. I answered, But you are facing the wrong direction! I gave him a pillow and he slept on the floor under the door jamb, half his body on the living room and the other half on the guest room. I phoned a retired RN friend. She suggested I tell the hospice everything, or I could be blamed. That sure sent me shaking on my bare feet. A pair of the hospice’s emergency personnel came and collected Octo from the floor and relocated him to the bed. The RN did his vitals and made Octo promise to not escape from the bed.
Day Five. Hospice delivered a hospital bed and a side table. Two burly men came and transferred Octo from the guest bed to the hospital bed. To my surprise, Octo thanked them, then went to sleep. After the hospice people were gone, he opened his eyes, and insisted, Get me out of this hospital bed! I replied, Help yourself. I knew he couldn’t. A hospice health aide gave him a sponge bath and a clean shirt, changed his wet diapers, and cleaned his mouth using toothettes. To the aide’s amusement and mine, Octo motioned to receive a repeat of the mouth washing. He returned to deep sleep afterward.
Day Six. Having no food for four days, no water for two days, and no blood transfusion for a week, Octo was nearly comatose. He breathed laboriously through an open mouth. He fidgeted and grimaced. The hospice RN told me as she changed his diapers, Those are signs of anxiety or pain and time has come for anxiety drops, then eventually, morphine.
Day Seven. The hospice RN gave Octo a sponge bath, changed his shirt and diaper. He slept throughout the process. That night, his breathing was so heavy and loud it could be heard from the other room. Then suddenly, around 2:00 a.m., an eerie silence blanketed the house. I called hospice. The RN came, declared Octo dead, and made one phone call after another. The mortuary people arrived, followed by huge uniformed law enforcement men, presumably to ensure no foul play was involved. Presumptions like that happen when the hospice majordomo is an Investigation Discovery True Crime junkie. Finally the RN showed me how to properly dispose of all the leftover drugs.
Soon, hospice people were gone. My first husband’s brother and his wife both of whom had uncannily arrived five hours earlier to give me loving moral support marched to their bedroom. In my bedroom, after laying myself down to sleep, I let out a huge sigh of relief that might have reverberated up to the next zip code. The sigh released my body’s tension, relaxing every fiber of my being. It was Liberation Day for Octo and me! He gained freedom from the agony of pain. I became free to flee from the twilight zone, armed with new knowledge and an appreciation for life as well as for death.
I’m back focused on life. I still have some living to do. Like my favorite song says, “I’m gonna live, live, live until I die. …..Before my number’s up, I’m gonna fill my cup..”…Then I’ll have another hospice experience, but that’s for another storyteller, another day.
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Celia Ruiz Tomlinson 