My guard was down when the caller ID lit up with the number from my mom’s care home on March 28. The ringing phone interrupted the time my husband and I were enjoying together over our coffee, a rare delight and an intentional moment of “looking on the bright side” of social distancing. I woke up that morning feeling like we were finally getting into a groove after more than two weeks into isolation. The days no longer stretched in endless minutes with constant interruptions. My mind had transitioned from shock toward acceptance. The breathless “what if” scenarios and endless emails starting with “in these unprecedented times” had receded to the background.
The disjointed words “your mom, vomiting, ER” tumbled through the line, echoing against the noisy rush of blood in my ears. My next words should have been, “I’ll meet her ambulance there,” followed by a scramble to grab my keys and race to the hospital. Instead, I was engulfed in stunned silence.
Since my mom was diagnosed with Alzheimer’s disease seven years ago, I have been her primary caregiver and advocate. She once told her friend, “The kid will tell me what I need to do — she takes care of everything!” She had forgotten my name, but was certain of my capable care.
I knew I would walk my mom to the end of her days on this earth, to the very end of this challenging Alzheimer’s journey, and she knew it, too. And I realized that in doing so, in fulfilling my duty to her and living my love for her, I would experience many heart-wrenching moments. I already have. I sat with her when the doctor said, “I think Alzheimer’s is causing what you are experiencing,” and I watched through tear-blurred vision as my mom’s face reddened in protest.
“I knew I would walk my mom to the end of her days on this earth, to the very end of this challenging Alzheimer’s journey, and she knew it, too.”
I hired her caregivers and fielded her calls when she didn’t want “these people” in her home. I bore her teasing tone when she called me her “handler” or replied in a sarcastic tone, “OK, Mommy,” to my directives. I signed do not resuscitate (DNR) orders. Eventually, I visited memory care homes and made the decision to move her in. Many difficult decisions are part of the slow, steady decline of Alzheimer’s. But never did I imagine that I wouldn’t be by her side when she needed me.
When I hung up the phone, I knew implicitly that I would not be allowed to visit my mom at the hospital because it was very possible that she might have the coronavirus. As of March 18, the hospital my mom was sent to had stopped allowing visitors except under specific circumstances (like hospice). While nominally one visitor is allowed per emergency room patient “if necessary,” in practice no one advertises that. The hospital is fighting a war with an invisible enemy, and the risk of community spread is too great. The likelihood of the coronavirus being present within an ER setting was enough to prevent me from even contemplating going. However, because my mom is unable to understand or produce words anymore, I knew she would not be able to communicate with the medical staff, and without me ― her voice and advocate ― she would be confused, vulnerable and entirely alone.
I had no window into what was happening in the ER except for the lab results I received by email throughout the morning. Since my mom’s medical account is linked to mine, notifications containing these jolts of data kept arriving but without any context or explanation. For three hours, I heard nothing else. I tried to wait patiently, tried to stave off the nagging nervous ache in my stomach, tried not to jump to conclusions and hope that some IV fluids would make her healthy again. I had to assume she was receiving good care, even though I couldn’t put a face or name to any of the nurses or doctors. I couldn’t see her or talk to her. I could only imagine the hospital gurney she lay on, the colors of her hospital gown, and I wondered if she was warm enough, if she was scared, what the room looked like and how often the monitors beeped. A headache blossomed from my neck to the tip of my brain — intense, deep and throbbing.
“My mom is unable to understand or produce words anymore, so without me — her voice and advocate — she would be confused, vulnerable and entirely alone at the hospital.”
I finally called the ER when I could no longer keep my anxiety at bay. The doctor reported that she was rehydrated but coughing, and her X-rays showed mild pneumonia. He was testing her for COVID-19 and would admit her for monitoring.
But what could I do now? The die had been cast. She was on a gurney, sick and confused, rolling through an unfamiliar and frightening place, where she would stay until that coronavirus test came back. Would it be two days? Three? More? This chain reaction of events already felt so far out of my hands. For all my promises to be by her side when she needed me, for all the advocacy I’ve done on her behalf for the last seven years, I found myself in this moment merely miles away but a world apart.
At 7 p.m. my phone rang again, this time with the hospital’s number on the caller ID. The doctor introduced himself as my mom’s attending physician and said he was calling to let me know that my mom’s COVID-19 test was positive. He said the prognosis for patients who are my mom’s age and who have her cognitive condition was not good, and that I needed to consider expanding the scope of her DNR if she took a turn for the worse. For the second time that day, silent streams coursed down my cheeks. I called my brothers to tell them to prepare for the worst.
Just before bed, the dread, sadness and fear crept its way in more aggressively. Sleep became elusive, exhaustion battling with imaginings of my mom’s reality. My eyes quickly became sunken underneath bags of fatigue so large an airline would have charged me for extra baggage.
Isolation had never felt so complete. The notion that she might pass away wondering, in her lucid moments, why I had abandoned her destroyed me. I couldn’t do anything, not tell her I loved her or even hold her hand. This separation from connection, from any semblance of normalcy, is one of the most unimaginably inhumane and thoroughly vulnerable times of most of our collective lives. All of us are struggling with enormous amounts of uncertainty in this COVID-19 world. In my mom’s case, the tsunami of sick patients was already starting and the medical staff was overwhelmed. How could I empower myself and advocate for my mom from afar? How could I exercise power where I could?
“He said the prognosis for patients who are my mom’s age and who have her cognitive condition was not good, and that I needed to consider expanding the scope of her DNR if she took a turn for the worse.”
I needed to find a way to connect with her, so I started by reaching out to my Facebook community. I asked if anyone knew people who worked at the hospital where my mom was admitted, hoping to find a direct connection to my mom. Then, I sent my mom’s lab and hospital reports to a doctor friend. She helped me interpret what I was seeing and gave me the language for what I needed to ask during the doctor’s infrequent check-ins.
What else could I do? My mom was combative and refusing to eat. I was sidelined. I tried not to bug the nurses. But she is my mom and it is my job to ensure her welfare. I called twice a day. My mom is so visually connected that I didn’t think a phone call would do much. But we tried it. A nurse caring for my mom passed the phone to her. She didn’t say much, but I could hear her voice and her raspy breathing. I told her I loved her and that I was sorry she wasn’t feeling well.
I don’t know if it helped, or if she understood, but it made me feel better. She heard my voice, and that was a small joy.
“The notion that she might pass away wondering, in her lucid moments, why I had abandoned her destroyed me.”
And then, I connected with a friend of a friend who worked at the hospital, and I asked her to please tell my mom that her daughter loves her. Even if she may not understand it, I wanted her to hear it. I needed her to know that. If it’s her time, I can make my peace with that. But I wanted her to know I love her and would never have abandoned her.
Being able to get this message to my mom changed everything for me.
Personal connection, even without physical contact, is enormously important. I have had a glimpse into the inhumanity of being pulled apart, how it tugs at your heart and empties out your soul, how it makes your head want to explode and how the feeling of something being amiss never leaves you the whole time, through every action of every day, even as you try to carry on.
So far, my mom has made it through the dicey early days of a COVID-19 infection, but even two weeks in she still has the virus. All of her caregivers must dress in full personal protective equipment, enhancing the sensation for her, surely, that aliens have taken over and removed anything familiar from her world. Few care homes are accepting coronavirus-positive dementia patients. Due to these “unprecedented times,” the rules are being written on the fly. With the hospital in desperate need of patient beds, for more than a week she sat mostly alone in a hospital room but couldn’t be discharged because there was nowhere for her to go.
There are no guarantees in this journey of life. Never before has that been so universally apparent. I’ve learned that it’s important to try to figure out ways to empower yourself and creatively strategize in order to diminish uncertainty and powerlessness. As I sat in an existential crisis on the sidelines while my mom navigated hospitalization alone, I discovered that I am scared and worried, but I am not helpless. In this moment of our collective history, as we weather the storm of this public health crisis, we may feel helpless, but we must also be resourceful, compassionate and courageous.
I did everything I could for my mom with what I had access to. And now with my mom back in her care home, I am enjoying seeing her on FaceTime and look forward to being able to visit her again when this isolation period is over. I am still hoping that she recovers fully from this, but I have to remind myself that whatever happens, she won’t remember this. I will.
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