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.