Though I fear for my husband, I haven’t been allowed to see him. When I drive to the home to drop off and pick up his laundry, I pass a refrigerator truck beneath my husband’s windows, covered in a white plastic tent. I know this truck holds the bodies of loved ones who have died. One day, within 20 minutes of idling outside the front door, I saw four ambulances come to pick up patients.
I have seen the faces of many residents over the past three and a half years, and I am afraid to imagine who we lost. It is unspeakable. I refuse to believe that my husband’s home could have been so unprepared for the coronavirus. Where was the leadership? The plan? The resources? The loss of 98 lives is nothing short of a tragedy.
I am reassured by the fact that my husband is isolated in his own room. The staff members on our floor are invested in my husband’s care — they have become our family. Some staff members call him Mr. Bob. His aides call him Papi Chulo. I call him my love.
One of our night aides has worked at Isabella for over 25 years. One night I asked him, “Do you love what you do?” and he responded, “This is what we are supposed to do on this earth: serve the sick.”
A rare neurodegenerative disorder has left my husband, at age 65, unable to walk, talk or take care of himself in any way. If cued by my voice or music, he can mouth the semblances of words. Otherwise, he cannot speak. But he understands.
For the first couple of years of his illness, I cared for him at home. In May 2016 I fell down stairs in our building and realized my husband could not help me. I surrendered to the most difficult decision: I had to place him in long-term care. His needs were beyond what I could care for on my own. It took another six months, including a three-month hospital stay at Massachusetts General Hospital for neurological evaluation, before my husband was placed in Isabella Geriatric Center.
My grief patterns swing. Some days I feel prepared. I visualize the steps I might take into a hospital wing dressed in protective gear to say goodbye. I practice the conversations I will have with the funeral home to make sure his body is picked up in time to not be directed to Hart Island. I vow quietly that I will fight for my husband’s dignity. On other days, this sequence of events is unimaginable.
What I really want is to walk into Isabella as I have hundreds of times in the last few years, see with my own eyes how my husband is doing and give him a hug. Instead, I call the nurses on his floor. They tell me his vitals are perfect: oxygen levels 100 percent, no fever, no coughing. His blood pressure is better than mine.
There is life in a nursing home. My husband worked in special education for over 20 years. He understands deeply the value of a life, no matter what form that life takes. He would fight for his fellow residents if he could.
I feel betrayed because, while leaders like Gov. Andrew Cuomo and Mayor Bill de Blasio were speaking in their daily news conferences of the “vulnerable population” that needed the most help, not one federal, city or state agency prioritized preventing the loss of life in nursing homes.
Instead, officials fought over whose responsibility it was to serve the chronically ill, elderly and disabled people who live in New York State nursing homes. In a mid-April news conference, Governor Cuomo said that “it’s not our job” to provide personal protective equipment to nursing homes in New York City.
My husband was thrown into a war on the vulnerable without a chance — he cannot care for himself or protect himself from a virus that doesn’t have a vaccine. The fact that he is still alive is a miracle. As of May 10, it was likely that over 5,000 residents in nursing homes statewide had perished. They matter.
To be given a chance to live is a human right, and the business of care that impedes this right in any way needs a major reckoning. Not testing health care workers and residents, not addressing staffing shortages, not updating families on loved ones’ conditions and not producing effective plans for managing infections within nursing homes is unacceptable.
Nursing homes are not places to die. They are places to give support to families that are overwhelmed and have surrendered to the need of extra hands for the safety and comfort of their loved ones.
When my husband started showing symptoms of his neurodegenerative condition, he worried that he would be a burden. I will never forget him looking at me at our kitchen table. We had been to three Ivy League medical institutions learning his genetic-driven illness was irreversible. Long-term care was inevitable.
“You can leave me if you want. I don’t want to be a burden,” he said.
I reframed his fear. “You will be my joy,” I said. I promised him that caring for him would always be a privilege. He and his neighbors deserve better.
Marcella Goheen is a writer, solo theater artist and caregiver advocate.
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