Editor’s note: The following op/ed was written in the form of an open letter to the Board of VillageCare and Governor Cuomo. During the summer, it was announced that Rivington House, a nursing home for AIDS patients, would close in November. Community Board 3’s human services committee will receive an update on the sale of Rivington House’s building tonight.
UPDATED 5/9/2018 While the author of this editorial was identified when it was published in October of 2014, this individual later asked for anonymity. The Lo-Down agreed to the request and removed the author’s name from this post.
Whenever I visited my father, I’d stop at a bodega to get some band-aids. I’d wrap them tight around any open cuts on my hands or fingers. I knew this was irrational, but it was my ritual to protect myself from what I was about to experience. I was going to visit Rivington House (45 Rivington St.) a nursing home facility for people with HIV/AIDS and often at the end stages of life. And while the band aids were a symbolic protection against improbable exposure to contaminated blood, a part of me knew what I was really steeling myself against was the face-to-face contact with disease and death. I’d sign in at the front desk, take a deep breath and go up to the second floor.
Despite my fears, what I entered was a clean and brightly-lit corridor. The hallways smelled of a strong anti-septic cleaning solution and were always spotless. The intercom buzzed with announcements about activities. The nursing station was busy with residents getting passes to go outside. The nurses were relentlessly friendly. If a patient wheeled themselves up to the desk and vocalized distress, they would smile and their eyes would shine with affection. The aides could be gruff with the patients, but they addressed patient needs quickly. Even their barked commands affirmed life – reminding bed-ridden people they could walk or move. The volunteers that would come to entertain or talk to the residents always left me dumb-founded. Here were people giving up their weekends to bring joy to the visibly ill and dying. I had a hard time imagining such altruism.
My father’s roommates would come and go. Some looked healthy and some looked in bad shape from the beginning. Some had relatives who visited regularly and others didn’t. The ones without relatives were often the friendliest and would smile at me no matter what their condition. I learned about them through my father – some had spent many years in prison, others had large families they hoped to go home to. Most eventually got sicker and were moved.
Amidst the constant flow of residents, the staff tried to create community. The able-bodied could walk around at will and find someone to talk to. There were movie nights in the common area. Holidays and seasonal events were always celebrated. When I sat in the common area the residents always greeted me with smiles and loving gazes, as if I was their grandson. For many years, a relentlessly friendly physical therapist came each day to bring my father up to the Wellness Center on the 5th floor so my father could practice walking. On his way back from Wellness my father was happy- joyously declaring that he would be walking out of Rivington House one day. This steady practice of walking and imagining a life beyond Rivington House I believe extended my father’s life for years.
Rivington House wasn’t perfect. There were some surly and mentally-ill residents. The food quality deteriorated over time and there weren’t that many TV channels to choose from. Some staff were more empathetic than others. But it was clean, safe, peaceful and orderly. Here these shunned people were looked after and protected. For many it was a refuge at the end of a difficult road. At the end of my visit sometimes I would stand in the doorway and gaze resentfully at the people in the bar across the street – people my age whose parents I imagined didn’t have AIDS.
Walking home down Allen Street, I’d seek out a bathroom where I could sob uncontrollably for a while. But after the tears a light feeling would arise seemingly out of nowhere. Part of it was a wonderment at what I had just seen. At 45 Rivington, people were laughing and smiling in the face of death. The doctors, nurses, and support staff had chosen to serve in the most difficult of circumstances. All the religions and philosophies tell us what this is – it is pure altruistic love – the face of compassion. In other words it is the face of God. That is what I had just seen. Love beyond what I thought was humanly possible. Courage no matter what. And I understood that 45 Rivington was not just the place of my greatest fears, but the place where God lived and worked.
And so it was with great sadness that I heard the news that VillageCare planned to close Rivington House. Moreover, the language used to describe the closing sounded alarmingly corporate and sanitized. VillageCare declared that Rivington House was “half-empty” when the decision was made to close it. But it was also half-full – half-full of our most vulnerable elders. The assumption seems to be that these very ill and stigmatized people will be easily integrated into their new residences and new communities. Why does that sound like wishful thinking?
VillageCare’s Director of Corporate Communications says “We are working with each resident individually, but ultimately where they go is their decision.” Patient autonomy is a laudable goal but it can be hard to make a clear decision about your future if you suffer from dementia or have tubes sticking down your throat. The truth is many residents may not be able to make clear decisions for themselves. Therefore it is incumbent upon VillageCare and all of us to make sure our most vulnerable seniors really are treated with dignity and respect.
What must it be like for a frail HIV-positive senior with dementia to have to move (yet again) to a new home? How long will it take them to trust people and make friends? How will the other sick and frail residents treat them? I’m wondering what this will do to their health and their spirit. And I’m wondering if anyone will bother to find out.
To the Board of VillageCare – I thank you for keeping Rivington House open for as long as you did. But I also need to register my deep concern. In your mission statement you claim that you are guided by respect for those in your care and responsiveness to their individual needs. Yet you are moving these vulnerable residents because it cost too much to take care of them where they were. Given your mission, it seems to me you owe it to those in your care to make sure they continue to have the best care available. The living conditions of the residents you are relocating must be assessed and if they are found wanting they must be improved. Given your decision to close Rivington House, this is what you must do to stay true to your mission.
To Governor Cuomo – You vetoed legislation that would have potentially allowed the conversion of Rivington House into an assisted care facility for AIDS patients. You justify this as part of a policy to save Medicaid money by closing nursing homes and moving the elderly into home-based and community-based care. Words like “home-based care” and “community-based care” sound very nice. But the truth is that most people enter long-term care because their families and communities were no longer able to take care of them. The truth is my father would have died alone in his apartment if it had not been for Rivington House. We are lying to ourselves if we think families and communities can integrate the seriously ill back into their lives without cost.
To Governor Cuomo and the Board of VillageCare – Do you actually know if existing assisted living centers are prepared to welcome and integrate elders with HIV and other serious illnesses back into their communities? Will you follow-up with assessments of the living conditions of those you have evicted? Because if you do not follow up, I’d say the probability is high that these people will be neglected and die sooner because of your decision. Have you factored that in to your calculations? Balancing our books is important, but if we choose to balance our books on the backs of those too sick to speak for themselves, then I wonder what have we become? There are some things more important than money. Dignity for the frail, the sick and the dying is one of them. I urge you to think long and hard about the consequences of your decision.
Thanks to (the author) for this honest and beautiful perspective. I would like to think that Governor Cuomo and the Board of Village Care would pay attention to this compassionate and humane appeal for the dignity of this population. Wonderfully spelled out and clear support for folks deserving of more respect than they are currently being shown.
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