Consumer Perspectives: Caring for Older Adults and People with Mental Illness During the Pandemic
Photo credit: Tai’s Captures/Unsplash
By Beverly and Barry
Behavioral Health News
Summer 2020
This article is part of a quarterly series giving voice to the perspectives of individuals with lived experiences as they share their opinions on a particular topic. The authors of this column facilitated a focus group of their peers to inform this writing. The authors are served by Services for the UnderServed (S:US), a New York City-based nonprofit that is committed to giving every New Yorker the tools that they can use to lead a life of purpose.
Services for the UnderServed (S:US) supports thousands of vulnerable New Yorkers, serving people with disabilities, people in poverty, veterans, people struggling with addiction and mental illness, and people facing homelessness. These are the people who are especially vulnerable to the COVID-19 pandemic and S:US remains committed to their safety and wellbeing. Additionally, communities of color are getting infected at disproportionately high rates.
Two individuals, who are both African-American, were ill with COVID-19 recently. Here are their stories.
Beverly’s Story
I am a 57-year-old African-American woman. I live with my husband in Brooklyn and has received support from S:US for six years. One of S:US’ care coordinators has been calling to check on me every week during the pandemic. I like my care coordinator—she is very nice and helps me with whatever I need, like filling my prescriptions. I have chronic obstructive pulmonary disease (COPD), an inflammatory lung disease.
Last month, I got very sick for about 11 days. My husband took care of me for as long as he could, but it got to a point where we decided I should go to the hospital. My daughter was scared that if I went to the hospital, I might not make it back home. But I decided I needed to go.
Going to the hospital was a scary experience
At the hospital, the medical team first told me that I had pneumonia, but then they tested me and confirmed that I had COVID-19. My COPD diagnosis (lung disease) made it worse for me because it was hard to breathe and my oxygen level was very low.
It was scary, in the beginning. When you’re in the hospital, all by yourself, you can’t see any of your family members. You’re there for days without seeing anyone other than the doctors and nurses, and you don’t know what’s going to happen. They took good care of me, but it’s something I wouldn’t want to go through again.
Beverly’s recovery is ongoing
The medical team gave me plenty of oxygen. Eventually my levels improved and I was able to go home. During my hospital stay and afterward, the S:US care coordinator called regularly to check on me. That made me feel good; it’s nice to know somebody cares (other than my family). Because of the pandemic, no one can visit me.
I am still not completely recovered. I have shortness of breath and get lightheaded. I haven’t been out anywhere. I’m basically all right as long as I’m resting… just taking it easy. Sometimes it feels like I’m doing too much—walking from one side of the house to the other, I feel like I’m losing oxygen. I have a walker and cane, in case I need them.
I have good days and bad days. Some days I get these crazy feelings, like shortness of breath and butterflies in my stomach. I can’t wait to get back to my normal self.
Barry’s Story
I am a 55-year-old African-American man. I live in a supported housing in the Bronx and I receive services from S:US. I have experienced homelessness, I have mental illness, and I am recovering from drug addiction.
Around March 30, I was very ill with a fever, nausea, and diarrhea. I thought maybe I had food poisoning until my primary care physician told me that those were symptoms of COVID-19. My doctor had two weeks of medicine delivered to my home and placed me on voluntary quarantine.
The first 15 days were a nightmare. S:US really helped a lot—they checked on me every few hours, made sure that I had food in the house and ate something, and that I was taking my medication.
Quarantine exacerbates mental health issues
One night I snuck out because of my anxiety. I felt like the walls were caving in on me. I couldn’t take it any longer. I put on a mask and gloves and went downstairs at 4am because I didn’t think anyone would be around. I felt like I couldn’t go on like this. I packed up a bag and was almost ready to leave… But something said “don’t leave, stay.” So, I stayed. That was the best thing I did.
Finding a test in the Bronx is challenging
I finally started feeling better and no longer had a high temperature, so my doctor recommended I get tested for COVID-19. I was worried about spreading the virus and wanted a test to confirm I was no longer ill. An S:US case manager who had been helping me tried to track down a test. In the Bronx tests are very hard to find. He went beyond the call of duty—he started calling people, going through all his contacts, and finally found a place that said “if you come in half an hour, we’ll test you.” Eventually my test came back negative, which meant I no longer had the virus.
When I found out that I was negative, I dropped on the floor and started praying and crying. It’s hard being alone for 30 days. I’ve been on lockdown in prison, where I was put in the hole for 50-60 days but you always have time to talk to somebody. It’s funny that now I’m in a 12-story building and I didn’t have anybody to talk to.
Based on Barry’s experience, he reached out to help others
There’s a man on my floor who was going through the same thing I went through. I could hear him crying at night when I emptied my garbage. I knocked on his door and asked him how he’s doing. I told him, “I know what you’re going through. You need someone to talk to while this is going on. I wanted you to meet the people from S:US—they can help you get through this.”
I am doing better now, though I’m wary of being put in rooms by myself and I carry around the paperwork to show my negative test result. I’m still going to my methadone program and I talk to my psychiatrist regularly.
S:US cares
Isolation and illness can be scary. Many people feel alone right now. Though we may be apart, we stand together. We’re thankful to S:US for their support, heroism and compassion during this pandemic. As we all adjust to the reality and uncertainties associated with COVID-19, we know that S:US remains committed to serving people like us.