The Reminders
My mother died of COVID-19 in March. I am constantly reminded of this. Reminded when I see press clips of what the President knew and didn’t share with the American people. I am reminded when I read the updates of the people continuing to die. I am reminded because I receive her forwarded hospital bills and still have to deal with packing up and selling her house, in which I feel paralyzed every time I enter. I am reminded that I am now an orphan.
I have seen posts and videos of people who also lost loved ones and lament that they, or their family, voted for Trump and now regret it. But my mother never voted for Trump (nor did anyone in my family). She recognized what a dangerous man he was for our country, and yet because of his blundered handling of the Corona virus, she lost her life. So I get angry, when people want my sympathy for their ignorance and only speak up now that it directly impacts them. I do empathize with their grief, feel sad for their loss, and am glad they recognize the error and will change their vote. But I’ll call it like I see it; they helped to vote in the Administration that mis-handled the pandemic that took my mother’s life. And more Americans tried to keep him out of office in 2016, knowing he was destructive, but alas, the popular vote doesn’t count.
My parents were immigrants to this country in the late 1960s. They were a mixed-race couple, but if my dad ever experienced any outward discrimination, he never mentioned it, nor let it get to him. We grew up in a diverse, educated suburb in upstate New York. My parents were firmly in the middle class and I remember when they bought their first house — I was 5-years-old. They started working, climbed corporate ladders to a point, and pursued their graduate degrees while here as well. They donated to worthy causes that ranged from Doctors Without Borders to the local police force, contributed to society and always voted. They instilled in me and my sister, the importance of voting and for standing up for human and civil rights.
My parents were card-carrying Democrats. No kidding, my mother had a DNC card in her wallet and my father would send emails to Ted Kennedy. He was so proud when Senator Kennedy would respond to him personally, that I didn’t have the heart to tell him it was likely a staffer. I am still cleaning out my mother’s house and have a stack of newspapers from the day Obama was elected and the day of his first Inauguration, with photos of the thousands and thousands of people who attended on that cold DC day. My father would talk about the Kennedy/Johnson years and the structures put in place to combat discrimination and wisely note that you can’t avoid prejudice, but you can fight discrimination that comes from it. He railed against Reagan who sought to tear these structures down and destroy the progress America had made to lift people out of poverty.
My mother voted in the 2016 presidential election and 2018 mid-terms. Even though she was showing signs of Alzheimer’s disease, she could speak clearly on what a terrible person Donald Trump is and how unfit he was to be President. Even though she had grown more conservative as she aged, she never stopped recognizing the fundamental rights of human beings of all races, orientations and ages, the importance of education and the need to take care of our children’s future. Needless to say, she voted for Democrats and for Hillary Clinton; voted against Donald Trump.
But he got elected anyway. And fast forward 3 and a half years, he mis-handled the pandemic so terribly that people didn’t know how fast and furious this killer was racing towards us. He had eliminated the team meant to address this very issue, downplayed the risks and hid the truth, so our institutions were not prepared in advance of the tsunami. And my mother died. She died before she should have, and she died alone. Let me say that again.
She died alone.
The Memory Care facility my mother was in tried its best to keep the pandemic at bay. They barred family members from visiting, incorporated a lockdown, extensive cleaning, mask-wearing, temperature checks. But it was too late. Someone had already unknowingly infiltrated.
The night she was sent to the Emergency Room with labored breathing, was two weeks before the city marked peak hospitalizations, and the steep climb in cases rivaled Mount Thor. The medical world was rocked and reeling, hit with wave after wave of sick and dying people, from what was still an unknown, raging, beast. I had to speak to the ER physician over the phone — I wasn’t allowed to come in. I explained that she had ALZ and wouldn’t know what was happening. She wouldn’t be able to express her needs or feed herself. I couldn’t speak to my mother — this was before hospitals had started regularly incorporating phone and video calls into Covid patient care. Regardless, using a telephone just confused her.
At this point, because of the ALZ, she could no longer think rationally and I was the only person she recognized. But since I wasn’t allowed in, she had to lie in the hospital surrounded by strangers, not understanding what on earth was going on. I can only imagine how terrified she was; like a small child whose parents are not there to comfort her while she lay sick.
I was given the option of having her intubated. Although there was a shortage of ventilators, my 74-year-old mother could get one. Because of her ALZ, we had put advanced directives in place, but this was an unanticipated, unprecedented situation. In the moment, I had to decide do I keep her alive longer in the hopes that I could see her again or that she would pull through, dare I say, as if she had the flu? Or do we follow the playbook? I couldn’t be there to hold her hand, look her in the eyes to help her understand this was okay. If we did this, would she be on a ventilator for days, weeks or months, and would it even change the situation with little information and no vaccine? How long did she have? Would I be allowed back in either way?
There were few answers for the many questions.
There was also a moral dilemma to this. People were being told there were not enough ventilators to go around. Should my mother occupy a ventilator to stay alive, even though she had lost her ability to function independently and probably only had a few years left of her life, or should I make sure that precious ventilator would be available for the hypothetical 43-year-old with asthma who had two small children at home and a spouse desperately hoping to live another 35 years with their soulmate?
I know what my mother would have said.
But she would have wanted to see her children and grandchildren before she died. She would have held my hand once again, enjoyed a final glass of champagne, hugged her beloved granddaughter tightly, cracked some wise, silly joke, and laughed that beautiful, genuine, sparkling laugh. But we couldn’t have both. So she went into hospice instead of on ventilation.
The hospice nurses kept her comfortable and did try to give us some shards of connection through the phone when they could; putting it near my mother and letting us talk to her. Unfortunately by that time, I think she was probably pretty sedated. I can only hope the sound of my, and my children’s, voice brought her a small smile.
If the Administration had only warned people earlier in February, when they knew of the danger, my mother may still be alive. Or at least, she could have taken her last breaths with family members around to comfort her and remind her of their love. Instead, she probably thought we had forgotten about her, because her ALZ-ridden mind would not allow her to comprehend that I couldn’t come because of the pandemic. She was likely in a state of confusion thinking her daughter, whom she had lovingly raised, dismissed her at the end of life; forgot about her; wasn’t there when it was most important. Because my mother had Alzheimer’s disease, I was prepared for her to die. I wasn’t prepared to not be with her, not be able to be with my sister, not be able to tell my mum how much I loved her. That is what hurts.
I will vote this November like my life depends on it, since I can no longer save my mother’s, but I still live with the constant reminders of what could have been.
Sheffali Welch is a former Corporate Executive who left her job, to care for her mother and become an Activist (read about that in “A Year On” https://medium.com/me/stories/public). She lives in Brooklyn, NY with her husband and two children.
