The thing about cancer–the reason we all detest it so much–is that it takes away the person you love long before it ends their life.
My mom died on December 16, 2014 after a 7-month battle with lung cancer (at least as far as we were aware; I found medical records suggesting it could have been present as far back as 2001). There have been a million and one things I’ve wanted to write since I quit my life and moved into her house on October 18th to take care of her (so, fair warning, this post will be kind of random and long-winded). I was some combination of angry, hurt, and bewildered that everyone but my boyfriend thought it was reasonable to expect me to up and move to a different state, abandon my work and my earnings with no plan for the family to step up financially to help me, and leave behind my entire support system (including my weekly support group) and the comforts of home. My mom’s family in Ohio all live within an hour’s drive of her house, but it would have been too inconvenient for them to coordinate a schedule to help her or to bring her to live with them (not that she wanted that at first). And my life is apparently less legitimate. Or maybe it’s just that they assumed she wanted me there regardless and the wishes of the living hold no water compared with the wishes of the dying. So it was up to me because she couldn’t keep track of her meds, grocery shop, cook, or clean; she refused to go into a nursing home until it was too late; and she wanted to die in her house. She had this idea that her sickness would bring together a family that doesn’t even call on holidays and that we’d all do whatever needed to be done to make it possible for her “death plan” to be exectuted. Perhaps it was sentimentality, perhaps it was brain mets; at any rate, that’s not our family and I wish she’d had a more realistic plan. (To be fair, I learned that I had expected real-life terminal cancer to be a lot more like Stepmom than it is.) My cousin has been a huge help, but she’s had her own motives for a lot of that, too. The rest of my mom’s family did fuck-all. Part of me is glad I could be there to avoid most standard regrets and to ensure that she had high quality care. The rest of me has spent the last month (I got home on December 11th) trying to recover physically and mentally from the hardest two months of my life.
Mom ran me ragged doing inconsequential shit because she had so little control over anything else. She didn’t respect my health and ultimately reduced my help from her hospice team to the point that I seriously considered leaving and forcing her into a long-term care facility. She was wildly irrational and emotionally abusive, prone to tantrums and stubborn to the core, even when her priorities were clearly wrong. I told her before I arrived in Ohio that, for Christmas, I wanted a journal, recorded or written, of memories of her life, my life, our life together… She must have made 90 grocery lists while I was there, indifferent to a kitchen bursting at the seams with food, demanding ingredients for recipes neither of us would want, spending all her waking hours for consecutive days on these lists. There are, however, no lists of things she wishes for me on my wedding day. No lists of joys she wishes me as a mother, should I become one. No lists of life lessons she won’t be able to share when I need them.
Her reign of terror alienated my cousin, who took over for me while I came home to exhale for a few days in November. We were both tired of having nouns yelled at us all day unless she wanted to tell us what we were doing wrong, which she somehow always had the breath for. It got so bad that no one visited her at her inpatient facility–a situation I’ll explain momentarily–on Thanksgiving. That finally forced a reckoning, with the help of her long-suffering social worker, and from Black Friday onward, she was suddenly apologetic and grateful. No change in meds, just… magically a different person. This new person, while still obsessive in an effort to control her world, was bizarrely childlike. Suddenly, if she wasn’t worrying about buying Christmas presents online, she just wanted to color. It was almost worse, actually, to interact with my mother’s pure id, all of her prized competence and most of her wit gone.
Was that the duck?
Do you have a duck…?
Of course. Everyone has a duck.
Though she wanted, for whatever reasons, to die at home, my role as sole non-hospice caretaker was too much for me, especially given her demands and her lack of interest in all aspects of my health. She fell the Friday before Thanksgiving because she was too stubborn to call or text me to come in from walking her dog so I could help her to the bathroom. She didn’t want a “bedside commode” because she didn’t want it to smell, even though someone (usually me) was always there to clean it promptly. I returned from a ten minute walk to find her on her knees, as though praying, with her elbows on the toilet seat. She had fallen using her Rollator to get to the restroom unassisted while talking to a friend on her cell phone with one hand. I tried to lift her, but her strength was just gone suddenly and she couldn’t even get her limbs under her to help me stand her back up. In my two attempts, I… FUBAR’ed, I believe is the technical term… my lower back, which I’d been begging her to understand was already being pushed far harder (and often for no good reason) than someone with a herniated lumbar disc has any right to do. Thankfully, her nurse case manager was nearby and came to get her up. I was able to keep it together until Joanne got there, but my panic and anger at her disregard for her health and mine, the waves of pain in my lower back, and the sudden and total numbness of my right leg were too much. I went to the car to sob for awhile and then call my dear boyfriend to sob some more. Joanne–who was an absolute godsend during all this–left only after Mom agreed that she would stay within a small area encompassing her potty chair, hospital bed, and recliner. Within hours, she tried to move herself from one of these to another without asking for help and fell again, though she was thankfully much more comfortable with her landing this time and wasn’t yelling at me to just try harder to get her up because the consequences of her (stupid, stupid) actions hurt. I told her that–given the state of my back, which was already being treated with muscle relaxers and painkillers before this awful day–she had to either stay in bed all night long and rely on her diapers or she had to go to a symptom management facility to see if they could correct the weakness (which no one actually expected to work). She went to a hospice facility nearby later that night and, a week later, had to be discharged somewhere other than home because they couldn’t legally send her home to a place where she couldn’t be lifted, given her continued weakness. Because it was, in some very technical way, the only free, non-nursing home, long-term care facility, she ended up at a place an hour’s drive from her house. I tried to make the trip at least every other day so she could see her dog, but my back was a huge impediment to putting my own socks and shoes on, let alone driving two hours round trip.
To preserve my sanity, I had originally set December 18th as my fairly firm deadline to leave Ohio and return to my life. By December 11th, I had been living alone in her house for weeks, on all manner of drugs and still barely able to take care of myself, so I talked my pain doctor into one more refill of the painkiller so I could bear to sit long enough to drive home. When I left, her prognosis was “definitely here through the first of the year; nothing wrong with her vitals except, of course, her breathing.” My plan was to stay home through Christmas unless her condition changed. I don’t know what exactly happened because I took some space to decompress and then she had her phone off and was refusing to talk to anyone within several days of my return home, but she clearly felt differently about life by the 14th. The staff let her know I called and I arranged for the chaplain she liked to visit to see if he could figure out what she was so upset about, but I never did find out. Very quickly, her prognosis went from weeks to “one to two weeks, max,” to “days,” to–abruptly–“probably not even hours.”
I’ll likely always wonder whether things would have been different if I had called from home every day, but she wasn’t great at locating/answering her phone and I didn’t want to interrupt visits or wake her, so I figured she’d call me if she wanted to chat. Maybe the time dilation she’d been suffering convinced her that I’d long since abandoned her, maybe she was devastated by my aunt’s diatribe about how mom’s dog needed to be euthanized immediately (He didn’t. He was on painkillers to get him through to the end of her life humanely, but my useless aunt couldn’t even be arsed to look after him once I came home so that Mom could still see him sometimes.), or maybe she just felt really shitty and wanted it to stop. At any rate, I got a call the morning of the 16th that she was “actively dying” and that I should say goodbye. I couldn’t process it fast enough to say goodbye right then, so the hospice nurse gave me her cell number and advised me to call back soon. Mom was comatose and it has been such a weird journey for me that I wasn’t even really sure to whom I was saying goodbye at that point, but I lost my shit pretty quickly anyway, so it was a very short and simple sendoff. Not even a minute later, when the nurse got back on the line, she told me that Mom took her last breath while I was talking to her.
I’ve decided to believe that she needed her girl to be somewhere where I was safe and loved in order for her to let go, and that she knew it was okay to leave when she heard my voice again. I’d like to think that because it means cancer didn’t totally win. It means even after months of role reversal and time spent with sides of her I’d rather not have met, some part of her was still putting on a brave face for her daughter and it was holding on to say goodbye. It means that not even the at-times-excruciating pain, anxiety at struggling for each breath, heavy duty meds, and probable brain mets could make her not my mom. Cancer took its best shot, but I’m calling this one in favor of a beautiful, if tested, bond between mother and daughter. Fuck cancer. I love you, Mom, and I’m so, so proud of you. ❤