Six weeks before my mother died in the Intensive Care Unit of one of the top hospitals in the world for geriatrics, she was a vibrant, clear-headed, 88-year-old woman living alone in her studio apartment—and working on finishing her novel.
You are probably reading “88-year-old” and thinking, she was nearing the end anyway and I probably didn’t actually unalive her.
Nope.
Before her rapid decline, this woman was walking 10 blocks to the Santa Monica Pier twice a week to deliver handmade sandwiches to the hungry and homeless. She loaded up her walker with her bags of sandwiches and struck up conversations with friends and strangers she met along her route. She actually had a brand new electric mobility scooter in her hall closet, but was “putting off using it” until she “really needed it.”
During that time, I was living about 25 miles away. A single mom of a then 7-year-old daughter with a crippling bone disease, I worked full time in a demanding job for the CEO of a mortgage company. I was also the only one of my mom’s seven kids who lived close—so when she needed something—a trip to the grocery store, doctor’s appointment, or just a visit with her, or a restaurant meal, I was nearby to help fill those needs.
Thankfully, Medi-Cal provided a part-time caregiver for a couple of hours twice a week to help with errands.
The day Mom had her first scary emergency room visit, I was across town in the ER of Children’s Hospital with my daughter, who had developed an ulcer from her round-the-clock pain meds. My mom’s caregiver called to let me know she had taken my mom to the ER—and they were admitting her."
Mom was being treated with high doses of IV antibiotics for “an unspecified infection” that showed up on scans as abdominal inflammation. They discharged her after two days and she went home with a prescription for more antibiotics.
I now know that was the beginning of the end.
A couple of days after she was back home, I showed up at her apartment with my little one—a surprise visit on our way back from Jadyn’s doctor visit. We knocked and knocked on Mom’s door with no response, then tried calling her. We could hear her phone ringing inside the apartment. I felt panic creeping its way from my brain down to my heart.
Staying as calm as possible for Jadyn, I called the building manager to please let me in for a wellness check.
As I waited in the hallway for the manager to arrive with the key, I whispered a prayer for my mother and mentally prepared myself for what I might find. I was so devastated imagining that my mom might have died in there all alone. Was she lying on the floor? How long had it been since anyone had spoken to her? I had been in a rush all day, leaving work early to get Jadyn to her appointment. On our way home, Jadyn really wanted to surprise her grandma, so we didn’t call first.
As I stood in my fog of fear outside my mom’s door, my cellphone rang suddenly with an unknown number on my caller ID. It was my mom, telling me that she had called 911 herself and an ambulance had delivered her to the emergency room. She forgot to bring her cellphone.
Jadyn and I got over there quickly to find her hooked up to an IV (more antibiotics), but in pretty good spirits. The next day, they diagnosed her with an aggressive and highly contagious infection called C. diff. They eventually transported her to a convalescent care center, where she would have to stay until the infection was “undetectable.”
She's Starving
It was in that care center that I began noticing that she was not eating any of the meals they brought her.
I would come to visit her before or after work or on my lunch break, and no matter what time of day it was, there would be a tray of uneaten food in her room. She said she “just didn’t feel like eating.” I asked the staff about all those uneaten meals and was told they don’t feed patients. If they don’t eat a meal, it is left in the room “for awhile” in case they change their mind.
I asked them to tell me how many calories my mom was ingesting daily, and I got a blank stare.
“We don’t measure that,” the nurse said casually. “We measure fluid intake and urine output, but not food.
I requested that they add nutrition shakes to her daily meals to ensure she was getting enough calories and nutrients, and was told that the staff could not do that—the doctor would have to prescribe it, which he did. After a couple of days, whenever I came to visit Mom, there would be a shake with the uneaten tray of food, opened, but still full.
Friends and family from out of town and my siblings and their kids were visiting regularly, and we all encouraged her to please eat and drink for us, and she would—but she was only getting morsels of food each day, and only a few sips of the shakes.
Fast forward to her ending up back at the hospital for “failure to thrive.”
By this time, she was no longer able to speak. She could give us eye contact and weak hand gestures or head nods, but she couldn’t talk to us. Her vital signs were all okay. Her heart, kidney, liver function—all stable.
The next morning, a team of doctors stood around my mom’s bed wondering aloud why she was in such a state of mental frailty. They were perplexed.
“She’s starving,” I said to them matter-of-factly.
They all turned to look at me, but it was as if I’d said the words in a foreign language.
One of them said, “Her pelvic lymph nodes need a closer look. Let’s get oncology involved asap.”
When the team of doctors left, one remained in the room. He looked me in the eye when he spoke to me. He seemed to really care about my mom’s decline.
I explained to that doctor that my mom had been at a care facility for weeks and had not been eating. I reminded him that the number one side effect of the antibiotics she was taking was loss of appetite, and she had been on them for over a month. I showed him a spunky photo of her following behind her grandkids with her walker on a trip we’d taken to the Getty Museum not even two months prior. I told him about her sandwiches. I told him she was writing a novel. All of this to make sure he knew she was a real person, not just an old patient failing to thrive. Finally, begging him to address the lack of nutrients and what that was doing to her, I asked,
“What about a feeding tube?”
Those five words of mine are what I‘m pretty sure killed my mother.
It’s not that I regret asking. She was dying of starvation. But I didn’t know enough. I didn’t know that hospitals make mistakes and doctors don’t know everything, and one missed protocol or miscommunication can kill a person.
The doctor said a feeding tube would have to be ordered by the nutritionist, who would be in on Wednesday (two days away) and he would speak to her about it.
I began sobbing. I asked him to imagine flying into a remote village as a part of a rescue team and discovering people there who had not eaten for weeks. Would he calmly tell them to wait a couple more days for food? I asked him what he would do if it was his own mother lying there, listless and locked in mentally because she was starving to death.
He had actual tears in his eyes when he said he’d reach out to the nutritionist and get back to me.
The next morning I sent this group chat message to my family:
Dr. (redacted) called me just now to say he thought about the conversation we had yesterday and decided to confer with the gastro enterology team first thing this morning instead of waiting until more missed meals have passed. They are going to insert an NG tube right away to get nutrition into mom. Thank GOD…
My last prayer before I closed my eyes last night was for Dr. (redacted). When I saw UCLA in my caller ID at 6 in the morning, I feared the worst, but it was the doctor saying he could not sleep and could not stop thinking about Mom and he realized he was not aware of the malnourishment when he first got her case and he was focusing on the infection. Now let’s pray that it doesn’t take too long for the nutrients to restore her energy...she feels so helpless and confused and weary
My mom showed an immediate, almost miraculous response to the feeding tube. She did a little shimmy shoulder dance for us while sitting up in her bed to demonstrate just how much better she was feeling. And she was speaking again. I asked her how her brain was doing. She joked, “My brain is fine. How is yours?”
The oncologist came in the room to tell us that they had discovered lymphoma, and wanted to begin chemo and immunotherapy as soon as she regained more strength. He asked her if she was ready to fight, and she smiled at him and gave him a thumbs up.
Our family group chat received this message from me:
The doctor came in and was amazed at how much change there is already with the feeding tube. Mom is much more alert and is able to form sentences again (though it still wears her out to talk) The lymph node biopsy came back positive for lymphoma. The oncologist is very optimistic that the type of cells are very responsive to chemo and she will recover. Prayers. Prayers Prayers.
The following morning I arrived in the hospital foyer to a code blue announcement loudly calling out my mom’s room number. I rushed upstairs to find her room filled with doctors and nurses. A man was standing over her with those electric shock paddles you see on TV shows. They didn’t need to use the paddles. Her heartbeat had hit bottom, and was climbing back to normal again.
After the code blue, they transferred her to ICU and inserted a breathing tube. She kept having those coding episodes several times a day, and no one could tell me why. She had arrived at the hospital with a very healthy heart, despite her malnutrition, and it had been damaged—by what?
I didn’t know it then, but a friend of mine who is an anorexia specialist later told me it was something called “refeeding syndrome” that had likely damaged my mom’s heart.
Her doctor had done his best to address my desperate request for nutrients, but the absent nutritionist would probably have ordered some tests to determine exactly how much nutrient to drip. Whoever installed the NG tube apparently did not refeed her incrementally like you would a starving person. She also was not given the proper (diabetic) version.
As a result of me begging for what I hoped would be a life-saving medical procedure, my poor mom suffered terribly the final weeks of her life. The heart arrythmia and code blues happened several times daily, and even having a pacemaker surgically inserted in her chest did not stop them. Each time her heartbeat slowed down to nearly stopping, she would get the most terrified look on her face, and all we could do was hold her hand and ride the terrible wave with her.
Just before my mom died, my childhood friend called me at 2 am. She had been awakened by a call from her father, who said he had just dreamt of Dawn. She told him to tell her children to please let her go. She told him she was already over there on the other side where there was only love and no more pain.
She passed away peacefully a few hours later.
Writing this story has been excruciating. It’s so difficult to relive this, but it’s also healing. I’m also hoping it will help even one person who is reading this to better navigate a situation where their elderly parent has stopped eating due to antibiotic side effects.
In geriatric medicine, cessation of eating is a key indicator of impending death. Usually it precedes or coincides with organ shut down and other signs of decline. But that was not the case with my mom. She lost her appetite due to the meds they had her on. If she had been given the proper nutrition while she was taking those antibiotics, she would have still been her spunky self when the lymphoma diagnosis hit—and in much stronger condition to fight it.
I know I have to forgive myself for trying to do right by my mom, but it’s so hard to know that she suffered so horribly in the last weeks of her life because of those five words I spoke aloud with the best of intentions.
What about a feeding tube?
It is beyond impossible for me to explain in words how grateful I am to share A Prayer for My Mother with the world. I imagine her great-great-great grandchildren listening to this song far into the future and knowing this ancestor of theirs was loved.
"A Prayer for My Mother" honors all mothers and is dedicated to Dawn Adams❤️https://youtu.be/tA-9zd31GPc
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