The Foxtrot: My Mother’s Last Dance

by Ellen Weisberg

Table of Contents

Table of Contents
parts 1, 2, 3

conclusion

So, we continued to make it happen. But if I had to be completely honest, I felt like I was filling a dog bowl for a pet every time I left her a sandwich on my way out the door to go to work. And her hygiene was poor despite us giving her a sponge bath a couple of times a week, and her toenails had become Guinness World Records qualifying in length.

One of my less proud moments was when an assessment nurse visited the house and began to shame me for the condition of my mother’s toenails. She insisted that I needed to get my mother’s primary care physician refer her to a specialist.

It was 79 A.D. in Pompeii and Herculaneum all over again. My mouth suddenly erupted with lethal and fiery venom that had been unknowingly brewing inside me for months. Before my brain could take accountability, crazed words started to fly out of me into the Febrezed air around my mother’s bed.

“You’re a nurse, right?” I started. “And you’re here, in our home. You say my mother needs her toenails to be trimmed. Why can’t you trim them?” I knew I was being unrealistic, as my mother’s toenails had reached the point of needing not just a podiatrist but a blowtorch and chainsaw. Still, I couldn’t stop myself.

She laughed. “I know that you know I can’t do that. You know that’s not what I’m here for.”

“Look, we can’t get help for my mother!” I yelled. “I tried to get her a doctor’s referral for her toenails two or three weeks ago, and no one ever got back to me!”

“You have to calm down,” the nurse said.

I stared at her.

“We’re both adults here, right?” she said.

I stared at her some more.

“There’s no reason why we can’t discuss this as one adult to another,” she said.

The pyroclastic flow began. “I’m trying to give you some background!” I hollered. “I’m telling you this so you can understand our situation!”

She stared down at the floor, smirking.

“When we’ve asked for in-home services, we were forced to pay out the ass for nothing! Or if it didn’t cost too much, it still amounted to a big nothing!”

The nurse continued smirking and not saying anything.

I continued. “Palliative or end-of-life hospice wouldn’t go near my mother because she was on a life-saving medication, and they also didn’t want their precious childbearing-aged staff to risk being around someone on chemotherapy and, after weeks of phone calls back and forth, the hospice director completely ghosted me! When we placed her in an assisted living facility, the cost was high enough for us to need to take out a second mortgage on our home and contemplate prostitution or drug dealing just to afford it! We’re talking $7,500 a month for lousy food and shitty care!”

The nurse rolled her eyes. She then scribbled a few things on a pamphlet and handed it to me. “Here are some numbers for services for you to try.” She then pivoted to face my mother, who was in her bed. “I’ve seen people get upset, but this was the worst,” she said to my mother.

“The worst? Really?” I followed her into the kitchen. “Well let me tell you, it goes both ways and I’ve never met anyone so patronizing in my life!” I yelled, “I’ve been trying to explain things to you, and all you’ve done is roll your eyes and smirk!” I supposed I was having another “Karen” moment.

She quietly let herself out. I never saw her again.

My husband set my mother up with a friend of his who was a podiatrist. Her appointment was a couple of days later. No referral was required.

I noticed my mother was short of breath a lot when I took her out of the house for drives. She called out for me late one night after everyone had gone to sleep, and I ran down the stairs to see what was wrong.

“I can’t breathe,” she said.

I had heard her say this several times before.

“Should we take you to the emergency room?” I asked.

“No,” she said. “I’m OK. I’m OK now.”

This was the same answer she had also given me in the past.

I thought about the moaning sounds she had started making several months before this, when she was eating or taking steps to her commode. I had asked her if she was in any pain.

“No, I’m not,” she said.

“You’re making sounds like you are, though,” I said.

“I’m OK.”

She had also started talking to us with a shrill, theatrical voice that made her sound like she was extremely sick and weak. I had habitually reminded her to “use her strong voice.” Her response every time was to immediately readjust her pitch and tone and sound like her regular self.

Looking back, it pains me to admit that “The Boy Who Cried Wolf” came to mind with a lot of my mother’s habits and complaints. I wasn’t sure how much was genuine and how much of it was her trying to get attention.

A routine visit to her primary care physician the day after her late-night shout out about having breathing problems gave me the answer. She was taken to the emergency room because of very low oxygen levels. The doctors diagnosed her with interstitial lung disease, which may or may not have been pneumonitis from the clinical trial medicines. There was also some cancer detected in her lungs. She had been placed on supplemental oxygen. Because of her condition, she was removed from the clinical trial.

The hospital visit was the first of several over the next nine months. She was placed in a short-term wing at a rehabilitation center, the same that they had placed her in a couple of years earlier that she was essentially thrown out of for acting like a delinquent. She was told she would get physical therapy there to help her re-learn how to stand and walk, and then she would be able to go home.

Nurses at both the hospital and rehab mentioned that she called out for me all the time. Several staff had greeted me with: “Are you the famous Ellen whose name we keep hearing?” When I visited her, I sometimes heard her calling my name, but other times I just heard her crying out, “Help me!” When I asked her what she needed, she said, “Please help me!” or “Thank God you’re here!” When I pressed her to tell me how I could help her, she said, “I don’t know.”

For several weeks, whenever I saw her, I found her in a state of panic. She looked up at me, whimpering and her eyes wide with fear.

“Oh, Ellen,” she said, “you have no idea.”

“What, Ma?”

“You have no idea what I’m going through here,” she said through labored breathing and sobs.

She described a male nurse as being the “head honcho” whose orders all the nurses followed. She described everyone as being “in on it” together. She said he had her on an examining table and, while he didn’t physically touch her or abuse her, he told her she was “his.” Her paranoia; had become so relentless that we requested that the rehab find a replacement for Vito Corleone so we could remove at least one source of dread for her.

This worked.

For a while.

Then the hysterics started again. This could have been due to just about anything. She had been diagnosed with a UTI, but psychosis from the steroids she was given for her lung inflammation or anxiety from steroid withdrawal may have been the culprits. My personal theory was that she had been taking the antipsychotic drug, olanzapine, for nausea and vomiting for many months and then it was abruptly discontinued when she was hospitalized. Anxiety, confusion, crying spells, depression, hallucinations, psychosis, restlessness and mood swings were on the list of olanzapine withdrawal symptoms.

When her lucidity returned, she expressed how much she wanted to go home. I told her that the only way for us to make that happen was physical therapy and getting her to stand and walk again. The physical therapy nurse told me that my mother wasn’t being cooperative and seemed to be in too much discomfort for her to feel physical therapy was appropriate. I tried to play hero and help my mother to stand up from a sitting position on her bed. Despite my mother seeming to try very hard, it just wasn’t happening and reinforced the reality that she would not be coming home.

We tried to find ways to make her happy. Nothing pleased us more than hearing her enthusiastically exclaim “Ooh!” when offered something as simple as a hamburger from a fast-food chain, or “Oh does that sound good,” when offered Chinese food or even just a Devil Dog.

My mother loved life, even when she was hating it. She thoroughly appreciated life’s simple comforts and the fact that they helped her get through it. She had talked with me about how certain guilty pleasures preserved her sanity through tough times with her in-laws and other storms in her life, and which led to an accumulation of enough dresses, jewelry and handbags to fill ten department store warehouses.

I had wanted more than anything to keep her life as it always was, endearingly mundane with all her comforts to keep her going. But what I wanted and what fate had in store for her were two different things and, over time, her interest in the things that once brought her joy waned. Material possessions had lost meaning to her and, with her failing eyesight and memory, it was all she could do to just get from one day to the next.

There was another emergency room visit. This time, she was in a coma-like state because the rehab had placed her on hard-hitting opioids that were coupled with her newest, sleep-inducing cancer medicine. I was so grateful to see her awakened and alert after she was essentially detoxed, however short-lived this was before she resumed the cancer medicine combined with milder opioids. I had about a fifty percent chance over the next couple of months of finding my mother in such a deep sleep that I couldn’t awaken her. I remember the nurses also trying to wake her up, by lightly tapping her cheeks and saying repeatedly, “Sheila! Come on, Sheila! Wake up!”

During those times when she was awake and able to carry on a conversation, I made sure I had the chance to tell her how much I loved her, that I loved her more than life itself, and how she was my favorite person in the whole world. I had a feeling that time was of the essence to express this to her.

I was my mother’s healthcare proxy, and the medical community followed my decisions even if I had no idea what was up or down or right or wrong. Still, a palliative care nurse and a geriatric specialist both suggested hospice to me. My mother’s oncologist had only reluctantly agreed to keep her on her cancer medicine for another month or two. I was in the minority in my thinking and plans, but I knew from talking with my mother that she would rather live than not. I knew what it would mean to remove something that had been stabilizing her cancer.

Anything I thought or believed was moot the day my mother complained to me about a scratchy throat and asked me for a cough drop. An infection she caught, which was believed to be pneumonia, was the start of a steep, downward spiral for the next day or so. She had developed the most horrible-sounding cough I’d ever heard and completely lost her voice. The nurses informed me that she wasn’t eating or drinking anything, but that her vitals were good.

My husband and I visited her in rehab in the middle of the day. He had asked her to squeeze my hand if she was thirsty, since she couldn’t speak. Her eyes were open, and she looked horrified. Her arms were flailing but I could feel her forefinger and thumb pressing on my palm, and so I dropped an inch or so of water through a straw into her mouth.

After a few minutes of doing this, we suggested to the nurse that she needed to be on IV fluids.

“But her vitals are good,” the nurse said. “We need to have a reason to put her on IV.”

My husband found a diplomatic but direct way to let the nurse know that we would rather not wait until her vitals were bad before getting her on IV.

The nurse called the doctor who apparently needed to approve of the request, and while the doctor eventually gave the green light for my mother to get IV fluids, we were told that there would be a delay for several hours. We decided to have my mother admitted to the hospital.

That day, my mother underwent a myriad of tests and was placed on IV fluids that included treatment with an antibiotic. In addition to hyperglycemia, kidney failure, low blood pressure, sepsis and MRSA, my mother’s heart was failing and there was a large build-up of fluid that was making it hard to get more IV lines into her. Her arms were coverd in black and blue bruises. We were told it did not look good.

I sat for a long time in my car in the emergency room parking lot. I had started the engine and meant to put my foot on the gas pedal, but I was frozen. The car radio was on as I continued to quietly sit. I noticed the song “Oh Sheila” was playing, and I remembered thinking that was an interesting coincidence.

We received a phone call in the middle of the night from an ICU nurse. She told us that they were hoping Mom might show signs of improvement with the antibiotic, but that she was doing poorly, and they wanted to keep us informed. They described her as having been in a lot of pain, and so they started administering morphine.

We received another call from the nurse early the next day. We were told that my mother’s condition had worsened during the night. Their plan was to keep her on medication to keep her blood pressure elevated. They urged us to come to the ICU to see her as quickly as we could, and they could keep her on the blood pressure medicine only until we arrived.

I sat near my mother, and I held her hand and stroked her face. I watched as the time between breaths grew longer. There were times when she looked like her breathing had completely stopped, but then a few seconds later she drew another breath.

Her eyes opened, and I heard one of the nurses say to me, “She sees you.” I cried and told her how much I loved her, and I continued holding her hand. I felt my husband walk behind me and kiss me on the head. I saw her jaw clench, and there were no more breaths. The nurse walked over to tell me she had passed. I remember looking down at her hand, puffy and swollen with fluid. The stillness of it reminded me of the porcelain hands of her antique dolls.

The following day, I noticed one of our bathroom lights flickering for a while, despite there being no loose bulb or signs of the light burning out. I remember within a day of my father passing, my mother and I had similarly seen a hall light flicker late at night, when we were both consoling each other. I wanted to believe that my mother, like my father, may have been paying a visit.

The funeral was held later in the week, after my mother was transported to Florida to be buried next to my father. I talked with the rabbi the day before over the phone to tell her about my mother, whom she had never met. I told her that I would consider giving a small eulogy, but I wasn’t sure.

During the funeral, my brother and I had to wear a black ribbon and rip it, to symbolize the physical separation from the deceased loved one. My brother’s ripped with no problem, while the one I was given had frayed edges that made it impossible to tear. The rabbi tried as well and failed and laughed nervously, saying that had never happened to her before. She found a different one that had intact edges, and I was able to successfully rip it slightly. While this was likely just the result of a poorly made brand of ribbons, I felt it was symbolic of my difficulty in letting go.

Notably, a fox had slowly sauntered by in the middle of the service with some kind of dead animal hanging from its mouth. Foxes are supposedly notorious for digging holes near cemeteries, but foxes are also symbols of spirituality and the afterlife.

The rabbi found the fox amusing and asked if my mother had a sense of humor.

I answered, “Yes, she was quite the character.” I saw the foxtrot as my mother’s last dance for us. But she would need a partner. I smiled at the thought that she would now have my father.

I didn’t prepare a formal eulogy but just stood up and started rambling. I talked about the unique bond between a mother and daughter, how horns would occasionally lock but it never took away from the closeness. And I mentioned how much it meant to me to have the honor of taking care of her after my father had passed.

She was my mother. And then she was my child.

And through it all, she was my best friend.