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, ok, 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. She responded phenomenally well to the new cancer regimen, with such amazing tumor regression that she received a bear hug from the oncologist leading the trial. It also inspired a new project for my leukemia research that involved repurposing breast cancer treatments that both she and I had been treated with. But her cancer therapy 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 that and instead give her MiraLAX. 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.
(stay tuned for part 7 of “Foxtrot: My Mother’s Last Dance”)