The Foxtrot: My Mother’s Last Dance
by Ellen Weisberg
|
Table of Contents parts 1, 2, 3 |
part 2
The real death knell, though, for this doctor came after he refused to see my mother when accompanied by me, during Covid, despite that I tried to let the hospital know she was terrified of seeing him without me. The fact that I was a fellow employee who daily and randomly roamed the same halls as the oncologist, as a masked researcher employed at the same hospital, apparently had no clout. My mother ended up being escorted away from me by hospital personnel like we were family members being separated at a Border Patrol facility. It took a “Karen” performance by me, like the kind you see in YouTube videos, for the oncologist to finally bend the rules for the in-office visit and let me join them.
I transitioned her to a different hospital that was closer to home, with another oncologist, whose days with my mother were short-lived due to her Chicken Little over-the-phone hysterics every time my mother had new CT scan results that caused my knees to fold and my colleagues having to pick up the pieces of my shattered hope and spirit.
This was coupled with nebulous treatment plans, one which I privately researched and discovered was completely inappropriate for the kind of cancer she had and which the oncologist sheepishly admitted she doubted would work but thought it might be worth a try anyway. Another treatment caused severe hyperglycemia that landed my mother in the emergency room with blood glucose counts of 700 mg/dL.
This led to my mother’s brief stay in a rehabilitation center that she despised so much she was basically unofficially expelled from it. The ousting came after a profanity-laden screaming match my mother had with a roommate who she mistakenly accused of keeping her up every night despite the true culprit not being her roommate but rather a man suffering from dementia. It also came after she was reportedly wheeling herself up and down the halls of the rehab and calling everyone there a “pig” and a “fucker.”
My mother’s next oncologist was a keeper, as his kindness and compassion and tendency to not descend into madness in response to every test result seemed to be better suited to my mother’s needs and a better fit for my nerves. He initially placed her on an old chemotherapy drug from the 1950s that required twice daily dosing spread out by 8-12 hours. This went fairly smoothly, save for the times she was visited by my brother who took her out to a late morning breakfast and then found himself stalked at a local diner by a huffing and puffing and very pissed-off sister with the cancer medication and a pill box in a clenched fist.
I noticed a sharp decline in her mobility over time. Even after we gave her a walker, it seemed like a Mount Everest climb for her to get from her bed to the bathroom. Her difficulty walking was traced back to a bad fall she had taken in a hospital, not long after she moved up north. She had tripped over her own feet while ironically surrounded by a group of doctors and nurses at a routine oncology appointment. A possible fractured hip, which was never officially diagnosed because she refused to get an x-ray, coupled with a prolonged, bedridden, stay at the rehab, seemed to mark the beginning of the end of my mother’s ambulatory days.
Also gone were her short trips to her kitchen to prepare big bowls of egg salad or to chop up and freeze aluminum foil-wrapped chicken that she had enjoyed thawing and eating. I remember her saying how she was slowly losing everything, and while her heart was stubbornly clinging to her independence, her mind and body were tugging her in a different direction.
She had asked me to buy her a bunch of cans of beef stew, promising me she would eat it, only to express no interest in the literal fortress of cans I set up on her kitchen counter. Feeling a little desperate as it was clear she couldn’t feed herself any longer, I prepared a big bowl of snacks, including pudding, apple sauce, cookies, crackers, and cakes, and I placed all of it within arm’s reach of her bed.
We hired a private nurse to administer her medications and prepare a bowl of oatmeal with melted butter for her each morning. I was responsible for bringing some kind of real food for her in the afternoon or evening, every day. This kind of half-assed buddy system surprisingly seemed to be working and, alas, my mother did not starve. But her ability to bathe herself was questionable, and we were screwed if anything happened — like a fire drill — that would require her to bound down three flights of stairs. Not a day went by that I wasn’t worried about her.
During the two years that she lived in the Westford apartment, we had lots of arguments. They were the banshee-screaming kind that made us say dark things that we knew we didn’t mean at the time they were spewing from our mouths but that we nonetheless couldn’t seem to stifle. My mother told me to “Drop dead” once. That was quite the opposite of what she used to tell me when I was younger, which was that she loved me so much she would die for me.
The roots of at least some of these “knock down, drag out” episodes were my mother’s anxiety or frustration about something that may or may not have had anything to do with me directly, which I nonetheless took personally and reacted badly to. There were also times when we didn’t argue, but I was the one in a bad mood, snarling and barking and trying to keep it together but to no avail. I had apologized to her during these all too human and flawed episodes and tried to offer up excuses as to why I was sounding so bitchy. And I recall her lovingly saying, “Oh, honey, you’re fine. I’m not picking up on any bad mood. It’s in your head.”
It’s funny how I now struggle to remember the triggers for any of the foul moods or tensions or just general inane bullshit that existed between us. At the time it seemed our need to feed into whatever we were going through was stronger than the need to appreciate the time we had been blessed to have with each other.
While youth may be wasted on the young, I suppose it could also be said that time may be wasted on the living. My mother had often said after my father had passed that she felt guilty over the way she had treated him at times when he was sick, and that she wished she had been more understanding and kinder when he was alive. Whenever she mentioned this to me, I would think about my relationship with her, fraught as it was with these silly arguments that I knew I would be similarly feeling guilt over... someday.
The time had finally come when even my mother, with her decreased mobility and inability to safely shower or even grab dresses from hangers in her closet, couldn’t dispute the fact that she was unable to live on her own. We went through a series of home health aide services that offered only very exorbitant hourly prices and times of the week that their staff were happy with but that were too many or too few for my mother’s needs and comfort.
One assigned a young woman, who showed up and did some dusting and emptied my mother’s dishwasher for a few minutes and then spent the next four hours and forty-five minutes sitting in the living room scrolling social media on her iPhone. Some charged very little but also gave us very little, like a teenager who said one week that my mother would have to provide her with all the cleaning supplies she would need and then ghosted her the following week.
A turning point came when my mother and I had a FaceTime chat with her oncologist. He told my mother that the chemotherapy she was taking wasn’t really working to control the growth of her tumors, and if she didn’t consider enrolling in a special clinical trial that she was eligible for, she would have at most six to nine months to live. Despite both of us getting choked up, her oncologist remained businesslike and quietly waited for us to calm down.
A memory came to me from a decade earlier, when my mother had first been diagnosed with cancer. I had accompanied her to an oncology appointment.
“Is this it for me?” she had asked the oncologist, sitting on the edge of an examining table in her johnny and looking terrified.
That moment had sat with me for a long time. That moment made me cry and feel embarrassed in front of a nurse when I got my very first mammogram, several years before my diagnosis. It had surfaced during my own battle when waiting for test results that would tell me what I had and how treatable it was. That moment made me see just how scared my mother was of her disease and what it could do to her, and it was that moment that drove me to try to protect her from everything she feared for as long as I possibly could.
Up until the FaceTime chat, my mother had been reluctant to agree to the clinical trial because it would have meant the inconvenience of being driven to Boston once or twice a month. The call with the oncologist soberly gave her an idea of what a real inconvenience could look like if she didn’t allow herself to be enrolled.
She raised holy hell during her first few appointments and basically terrorized the clinical trial nurses who were trying to assess her. I received an irate phone call from the head clinical trial nurse who accused me of forcing my mother against her will to do the trial and who urged that my mother be removed from it. I had a “come to Jesus” conversation with my mother that resulted in a serious change in attitude that led to her continuing the trial and the head nurse getting off my case.
Because of the intensity of the trial and the fact that it was clear my mother was no longer able to live independently, we tried placing her in an assisted living facility. A monthly fee of $5,000 without the option of any healthcare coverage bought us at least 20-25 desperate and pleading calls to my iPhone a day, franks and beans most nights for dinner, and an astonishing mishandling of her medications by the in-house nursing staff. We moved her out two months later, following an evaluation that deemed my mother to be a high maintenance pain-in-their-ass and that raised the cost of her living expenses to a mere $7500 per month.
We were anxious to get her out of a pricey room she hated anyway and which had developed a mysterious and rather offensive stench over time. We would miss some of the residents there, as they were friendly, but my mother had never expressed an interest in getting to know any of them.
Her next destination, for the next 15 months, would be our home. We learned that our house, which was built in the 18th century, was too old with stairways too narrow for us to be able to install a chair lift for her. And so, our family room, on the ground floor and adjacent to our kitchen, was her new living quarters while we resided upstairs. She had a convertible sofa to sleep on, and we set up her antique doll hutch, along with a dresser, television and commode in a corner. We arranged a sweet deal with a neighboring tenant, a former nurse, who agreed to take my mother to her clinical trial appointments in Boston and who would occasionally help take care of my mother if we needed to travel.
Against the odds, we made it happen. We made it happen despite the inevitable, periodic and explosive arguments, some so embarrassingly thunderous our neighbor checked to make sure everything was OK. There was one that caused me to flee the house in a huff and seek refuge at a restaurant in another town while she pressed my husband to get in touch with me so we could talk.
“You can remind her what she said to me,” I told him, “and how abusive she can be.”
“She said she doesn’t remember saying anything to you,” he said.
“Yes, poor memory is her alibi. If she can’t remember it, it didn’t happen.”
My mother called out for me a lot, often forgetting that I had just seen and talked with her seconds earlier. Often a crescendo of “Ellen! Ellen!” came at me with no signs of easing up, kind of like a blaring smoke detector. When engaged in a Zoom call for work or a personal conversation with a friend, I would yell down at her, “Mom! What do you want? I’m on the phone!” I would hear her say, “Oh, okay, honey.” Once after I had seated myself in front of my computer, the sound of her voice had startled me and I jumped out of my chair, lost my balance, and almost took a headlong dive into the nearby wall. I then flew down the stairs to yell, “Mom! I almost just killed myself! I just saw you and we just talked! Why are you calling for me again?” She insisted that she honestly didn’t remember, and she apologized.
She typically called for me to do things like adjust her blanket by an inch or two or help her with the remote control to find CBS, the only station she would watch even if football or something else she could care less about was playing. I knew she was lonely. And there were times she told me directly that she was lonely. But although senior centers and synagogues were plentiful, and our next-door neighbor had generously offered to spend time with her, she had no interest. She seemed to want only my undivided attention and loyalty, despite knowing she was being unrealistic. Not to mention stubborn.
I kept her pill box filled with her regular medication and supplements and her cancer medication, all of which I gave to her twice a day every day. The new cancer regimen she was taking had some rough side effects, including sudden diarrhea, nausea and vomiting. When constipation was a problem because she had taken too much antidiarrheal medicine, I had to withhold it and give her MiraLAX instead. There were days when Montezuma took some serious revenge and she missed the commode, and some days when I couldn’t see in the dark corner what was on the floor and stepped in it, in bare feet.
There was a string of days when her nausea and vomiting weren’t controlled by the antiemetics that had up until then been working. I was scolded by the head nurse when she learned that I had given my mother a higher dose of an antiemetic than what was prescribed, claiming that, even though the dose I was giving her was reported to be safe, she felt it still put her at risk of cardiotoxicity. She suggested I continue to use the same dose of antiemetic, which we knew wasn’t working, and to call the nurse triage line if there were problems.
I thought about the times the clinical trial nurses had given my mother cancer medicine either on an empty stomach or without antiemetics at the hospital and this had caused her to vomit repeatedly when she was driven home. I wrote a Terminator style email to the head nurse and reminded her of this and the fact that my mother’s grade 3 or 4 vomiting episodes were putting her heart health at a much higher risk than a higher dose of antiemetic and that their handling of this was negligent and putting my mother in harm’s way. In response to this, my mother was prescribed a new medicine, olanzapine, in addition to the antiemetics she was already taking, and she no longer had issues with vomiting.
We tried to carry on as normal, with the help of my mother’s transport chair and walker, with restaurant visits, occasional dinners at home with guests, and takeout. I had gotten into the habit of giving her all her medications and supplements each morning, and she would often say, “This is like a meal.” She would sometimes scare the hell out of me by saying, “I can’t get it down!” and seem like she was on the verge of choking. My husband said that she curiously never did this when he had to be the one to give her the medication.
In the mornings, before going to work, I would make sandwiches that I would leave near her bedside. I always kept a bowl stocked with snacks that were within arm’s reach, and it was around this time that she developed a passion for Devil Dogs.
“That you, El?” I would hear her calling to me each night when I walked through the door of the kitchen. Her television was usually on, and she had typically just eaten something my husband prepared for dinner unless I was home to make it for her. Sometimes I’d sit on the edge of her bed and talk with her and, other times, when I was feeling tired, I just said, “Have a good night, Ma,” and “I love you,” and walked upstairs.
“I love you, too, sweetheart,” she would say.
Copyright © 2025 by Ellen Weisberg
