The diagnosis came suddenly, but it wasn't entirely unexpected. My mother, 66 years old and the daughter of Italian immigrants, had breast cancer in 2010. After treatment that included a mastectomy, chemotherapy, and radiation, she was declared cancer-free. But she was like her parents when it came to illnesses: old-school, unwilling to share details because she didn't want to trouble people with her burdens, never wanting to seem a complainer, silent through her pain. So when she went to the hospital with what she swore was just a touch of pneumonia, I wasn't surprised to find out it was worse than that, though I was shocked at how bad it was.
The cancer had not only returned but metastasized to her bones, to her lungs, and to her liver. What she thought was bronchitis was actually an orange-sized mass in her chest that choked off her breathing. A liter and a half of fluid was drained from her lungs.
She was given one round of chemotherapy in the hospital. She was ambivalent about receiving it, due to the ravaging nature of the treatment. She was still frail and a bit confused from previous rounds of cancer treatments and other chronic ailments that had worn down her body and mind. The chemo laid waste to her, leaving her vomiting and dry heaving around the clock. Watching her wracked, thin frame double over, retching into an emesis basin, I knew she wouldn't want to continue with treatment. She told me she resisted the offer of chemo initially but the doctors wore her down, insisting it was the best thing for her. She just wanted to go home; it was a mantra she kept repeating from the moment she was admitted to the hospital.
After the first round of chemo the doctors wanted to give her a second. I stepped in with other family members asking, why? What could possibly be gained if the cancer is beyond treating, as was clearly stated in her chart? Her treatment team told us the only other option was hospice care.
As a social worker informed about the benefits of palliative care and the hospice movement, I was open to the idea. These alternatives aim to give patients ownership over their end-of-life choices and have a mission to provide comfort and dignity in the home, rather than leaving the sick to fight until the bitter end with traumatizing treatments of questionable value in a hospital.
When I asked my mom about the hospice, she told me she just wanted to go home. I asked her if she understood that treatment aimed at sustaining or saving her life would be suspended; in that case she was blunt.
"Just let me go home to die," she said.
She was tired of fighting, tired of hospital roommates and the frequently noisy drama that they brought, tired of being hooked to machines that were supposed to make her better but often made her feel worse. We promised that at home we would make it as comfortable for her as we could. With astonishing speed the hospice provider converted her bedroom into an at-home nursing facility, complete with a fully-operational hospital bed, an oxygen machine that could run around the clock, and stacks of boxes containing the medical supplies we would need. In a matter of hours she was wheeled from the hospital into her apartment on a gurney by EMTs who delivered her, now unable to walk due to the lightning advance of the cancer, into her own bedroom.
The first hours were overwhelming. There was a blast of instructions on how to operate the bed and the oxygen. There were piles of paperwork to review and sign. There were heavy decisions abruptly raised like whether we wanted to sign a do-not-resuscitate order. The cancer had spread with such astonishing speed it left me a bit disoriented. Two weeks before, my mother hadn't been in great health, sure, but now she was bedridden and gasping for breath, and hooked to an oxygen machine 24-hours a day. For a moment I thought we were in over our heads and felt panic setting in.
The hospice team continually soothed our family, the nurses speaking in confidently quiet, calm tones. There would be plenty of support, they assured us, and we could do this. However, it would require a lot of us as a family since my mother required around-the-clock care and the hospice team would only be there for a few hours a day. I decided to take a leave of absence from my job so I could be there full time.
A new concern arose when the so-called comfort kit was delivered. The comfort kit is a box full of drugs intended to provide relief and comfort to the dying. Full of benzodiazepines and a stout vial of liquid Dilaudid, it's a drug addict's dream come true. As a recovering drug addict, even a decade away from my last high, it was incredibly triggering to rummage through such a stash to see what it all contained.
'My god,' I thought as I held the amber vial of Dilaudid up to the light, and saw the liquid wobbling inside it. 'This comfort kit is one eight ball of coke short of making for a positively epic run.'
Such thoughts are natural, though, for recovering addicts. I learned in the recovery process that thoughts of using are fleeting and powerless unless I chose to empower them through rumination. As far as recovering addicts go, I also felt pretty well-suited for the job of being my mother's hospice care provider because my social work training is well-adapted to it, and my job has kept me frequently in neighborhoods where drugs are being sold and used.
Being around my old drugs of choice doesn't rattle me. But while I've remained accustomed in sobriety to seeing drugs being used, actually handling drugs that I used to abuse directly and regularly dispensing them over time was uncharted territory I figured I would navigate as best I could.
In 2003, my father had colon cancer that metastasized to his liver, and also went into hospice care. My mother was a nurse at the time and insisted on being his full-time care provider. The hospice provided her with a comfort kit containing a bottle of oxycodone pills that looked like it had been irradiated and mutated to Godzilla-like proportions. It was made of the same amber plastic and topped with the same white screw top as any other pill bottle, but this one was big enough to fill your palm tall as a toddler. At the time I was heavily addicted to OxyContin and when I went to visit I had the same enthralled thought when I eyed my dad's meds: 'Good Lord, that's a big bottle of dope. Surely I could take a little bit without anyone noticing.'
My father's cancer also progressed relentlessly, waging a swift and unyielding scorched-earth campaign against his liver. As his liver failed he rarely complained of pain but was very much angered by the onset of dementia as ammonia and bile backed up into his blood stream. Fighting off the settling fog that he said was distressingly engulfing him, he frequently refused pain medication, saying that the pills made his mind even fuzzier. That in my addict's mind gave me a guilt-free green light to abuse his medication.
When he died, about a third of the pills remained in the canister. I was able to manage a minute or two of bedside support for my mother, but as soon as she tearfully excused herself to call the funeral home, I stole away in a near panic with the remains of the medication supply, knowing someone from the hospice would soon arrive to claim it.
I frantically dumped pills into Ziploc bags and stashed them away, then quickly cut out a fat line of oxycodone to hold me through what would surely be a long night. Soon the hospice nurse arrived.
"What is this?" she asked suspiciously as I handed her bottles.
"It's the medication bottles you need back."
"Where's the medication?"
"What medication?" I said, thinking I put up a convincing front of befuddlement.
"The rest of the medication. Your mother's been keeping a log. She didn't use much of it. Where is the rest?"
I was clearly intoxicated and she was onto me. Her face hardened.
"I flushed it down the toilet,” I told her. "It's gone."
"You were told not to do that," she began before stopping herself and fixing me with a disgusted stare. I stared hard back at her, challenging to make an issue out of it with my father's body still in the bedroom and grief-stricken family members on their way over. She backed down, put the empty bottles in her bag, and left without another word.
My deplorable behavior during my father's hospice haunted me. In rehab, I wrote letters to him asking for forgiveness. Part of my ongoing recovery has been what is called making living amends. Beyond the simple act of asking those harmed for forgiveness is the importance of bringing one's actions in line with one's words, demonstrating to family and friends through accountability and respectability over time that trust can be renewed.
It's been a very long time since my family renewed their trust in me, but as a symbolic act I felt strongly about having a chance to handle my mother's end-of-life care, including administering controlled substances, honestly and effectively.
Hospice care was the right choice. Mom was comfortable with her diagnosis and was ready for what would come. She never fully recovered mentally after losing her husband and life had become increasingly difficult with chronic poor health causing her to give up working. She had become increasingly isolated by what her doctors told me was severe depression that she refused to treat because her tough-it-out mentality precluded the use of antidepressants. She was okay letting go.
What the hospice did was provide her with was comfort and dignity in her last days. Becoming bedridden is possibly the most disempowering thing that can happen to a person, but choosing to make it your bedroom you die in and not a nursing home returns a little bit of that lost agency. At home she was able to have as many visitors as she wanted, whenever she wanted them, and family and old friends filled her room with laughter, telling stories about growing up in West Philadelphia.
At first, my mother refused to take her medication. The pain caused by my drug problems combined with her Old World stoicism turned my mom into a staunch teetotaler suspicious of any substance that brought relief. She wouldn't take a Tylenol for a headache. She would never admit it, but I suspected that she had quietly suffered chronic pain for years due to immune system disorders she had prior to the cancer. But no matter how little the pain medications available to her resembled heroin, it was too close for her comfort—an unfortunate and unnecessary decision I asked her to reconsider during many years of watching her wince when using hands inflamed by severe rheumatoid arthritis.
As the cancerous mass in her lungs continued to grow, my mother's breathing became more labored, even with round-the-clock oxygen. The hospice nurse suggested offering the Dilaudid to her not for pain, which she continued to adamantly deny, but as a way to ease her huffing and puffing for air. When contextualized like this, she was suddenly willing to try a small dose of the drug. I opened the comfort kit and read the dosing instructions for administering the Dilaudid.
As a longtime recovering addict I'm not too easily triggered by things I associated with my drug use. Within my first few years sober, I actively worked to reclaim places I used to go and things I used to do when I got high, putting myself in a new, healthy relationship with them. I went back to North Philadelphia where I used to buy drugs, but as a social worker whose mission was to partner with the community to strengthen it. I listened to music I used to get high to while out riding a bike on a beautiful spring day, or lifting weights at the gym. But handling syringes—specifically loading them full of powerful opiates like I was now in order to provide comfort to my dying mother—was something I never saw myself having do to.
The instructions were to administer the medication orally, using the syringe to squirt the liquid into her mouth. Now that she was willing to begin taking it, the medication was also to be administered hourly, along with doses of benzos at bedtime to help her sleep. The medication afforded immediate relief. As it took effect you could see the movements of her chest begin to ease, rising and falling softly instead of jerking every few seconds as she hauled hard to get a good breath.
Like other uncomfortable situations I've encountered in recovery that eventually became normal again, using the syringe quickly became part of a work-like daily routine. The irony didn't escape me over the long afternoons spent sitting in my mother's living room waiting for her to call out in need that after many years of her chasing me around in frustration during my addiction that her final days would come down to the two of us alone with a vial of Dilaudid and a syringe, her taking it and me administering it.
Things were briefly good. The medications eased her discomfort and helped her sleep. She was bedridden but a rotating cast of professional staff and family members kept her clean and changed her clothes. A nurse intermittently came to check the progress of the disease and order any medical or personal supplies that could help mitigate the decline in her life quality.
For example, one day a special plastic cap came in the mail. The nurse's aide explained that it was shampoo for immobilized patients that could be entirely applied and rinsed off in bed. She washed my mother's hair and put her in a clean nightgown. She looked refreshed and relaxed. When the nurse came, we reviewed her progress and my mom said between labored breaths over the constant whir of the oxygen machine, “This might sound really weird, but this is the best death somebody could hope for.” The nurse who left told me we were giving my mother the most meaningful last gift a family can give.
But the picture became steadily more grim. With terminal metastatic cancer it always does. Soon she lost the ability to feed herself, then the ability to take liquids. She had eaten frighteningly little since coming home from the hospital, a handful of calories on a given day. She was disappearing before our eyes, getting smaller as the cancer systematically and unyieldingly ate through her. Her skin became chilled to the touch. Her eyes began to coat with a shimmering film. I used the syringe now to feed her alternating small doses of Dilaudid and water, lifting her torso with one arm so she wouldn't choke. Just before she lost the ability to speak, she asked me if there was anything I needed to say to her before she left. I asked her to forgive me for the pain I caused her. I told her I just wanted her to be at peace. She nodded in understanding.
Giving her the medication in these final days became a messy affair. No longer able to speak, she struggled to even make the gurgled sounds that emerged from the deepening puddle of liquid pooled in her lungs. Unable to close her mouth around the syringe on her own, some of the Dilaudid would trail from her lips onto my fingers. I would rush to the sink to wash it off, thinking about stories I've heard from recovering alcoholics who continued working in bars about the slight feeling of panic they felt if they accidentally wet their hands accidentally with drink.
Eventually, she went into a coma. The nurse characterized her health status as “actively dying” and showed me her feet, which had turned a deep purple, signaling that the machinery of her body was shutting down. A hospice chaplain anointed her with oil and read Psalm 23. A social worker came and we talked about the pain of letting go. It was a brutal experience but 10 years of recovery have taught me acceptance. I felt prepared for the inevitable—and probably far better than someone who has never had a destructive addiction and needs to spend years doing therapeutic work to remain emotionally healthy.
After my mother died I called the hospice to let them know, and they sent a nurse over to pronounce her dead and destroy the remaining medication. The nurse brought with her a plastic bag filled with dirt. One by one, I placed the medications on the kitchen counter, providing a full account of what was left. There was no urge to squirrel anything away, though I could have easily gotten away with it. As I handed them to her, the nurse took each bottle and dumped it in the bag. The liquid Dilaudid turned the dirt into mud and she mashed the remaining pills into the mix, to make sure anyone rooting through the garbage would have a hard time getting them out. I took a final moment with Mom, giving her a goodbye kiss on her ice-cold forehead, before she was zipped into a body bag and wheeled out on a stretcher.