Caregivers often deal with the frustration of how their parent doesn’t qualify for this help or that service.
Rochester Democrat and Chronicle
We were nearly 75 minutes into a Democrat and Chronicle Zoom panel discussion on caregiving last Tuesday when the panelists began to make some key connections.
This was the second time many of them had convened in 2020 as part of the D&C’s Solutions Journalism Network-funded coverage of caregiving in communities of color in Rochester. Yours truly was the moderator each time.
Involved in the discussions have been people with a stake in ensuring older and chronically ill persons receive the care they need — family caregivers, health providers, insurers, service-based nonprofits like the Azheimer’s Association and Lifespan and advocacy groups such as the Diverse Elders Coalition.
Our coverage — three stories last autumn and three here in early summer — has put the spotlight on potential solutions that our reporters have vetted in terms of effectiveness.
The first panel session took place in The Before Times, way back in January when people could gather inside for a few hours and not worry about breathing in a potentially fatal virus. The caregivers’ stories were moving, the gaps in care and support for caregivers of color painfully evident.
The second conversation occurred Tuesday evening in the virtual safety zone of a Zoom video chat. Once we got past the initial tech-generated missteps (“my video is off”), the group members warmed up to each other just as it had in person five months earlier.
‘These disparities are so deep’
Much has changed in caregiving, of course, as it has in every other walk of life since the coronavirus outbreak began. The panelists gave testimony on the even-higher hurdles raised in the COVID-19 era by isolation, by misinformation, by stress and by lack of access to the Internet and transportation.
And then nearly 75 minutes in, the dots connected. In so many words, the discussion pointed to how the needs of Black and Latino caregivers reflect the racial inequities that have prompted tens of thousands of Americans to take to the streets in protest since the death of George Floyd in Minneapolis on Memorial Day.
Why has COVID-19 been disproportionately harmful and deadly to Black people and to Latinos? Well, because many are essential workers who couldn’t quarantine easily. And because many older persons of color have more underlying health conditions. And because lack of access to and distrust of health care leaves Rochester’s under-served communities more susceptible to those underlying conditions.
Even when it comes to the rapidly expanding field of telemedicine, poorer persons are being left out because of lack of ability to pay for an Internet provider or to otherwise have reliable WiFi.
Perhaps Dr. Elizabeth J. Santos, medical director of the University of Rochester Medical Center’s Memory Care Program, said it best: “These disparities are so deep. We have to start climbing out of the hole. So many ‘isms’ affecting us.”
Indeed. Caregiving gaps are yet one more reflection of a society that has perpetually left persons of color on the outside looking in.
With COVID-19, the disconnect grows in caregiving
At this point, I’ll share what I wrote last winter after the first caregiving panel discussion and before Black Lives Matter became a cause more widely embraced:
“The challenges facing family members when a parent or sibling loses the ability to function fully are universal across lines of income, education, geography and race.
Yet those challenges are far more acute among communities of color, which historically have not accessed available services for reasons ranging from cultural tradition to discrimination.”
And I added this at the time, too; “Families are burdened, knowledge of available services is spotty and there is often a disconnect between local nonprofits and communities of color that has proved hard to bridge.”
When you hear the lived experiences of someone like Annie Dukes, sales and marketing employer group contract development coordinator at Excellus BlueCross BlueShield, it becomes crystal clear these struggles and disconnects are not for lack of trying on the part of families and caregivers.
Dukes, a professional who has been through the United Way of Greater Rochester’s African-American Leadership Development Program, has had at times to serve as a full-time caregiver for her father. The isolation she felt, the dead ends she ran into trying to help her dad and the sense that more resources are needed for family caregivers are all palpable in her voice.
“It was a very difficult time for the family,” she said of a stretch last spring when her quite-ill dad returned home from a nursing home. “We were very disappointed at the lack of communication from the nursing home and then sometimes even from the doctors and the nurses. It could have been because they were overwhelmed, but it was definitely a tough experience for us.”
Dukes added, “During this whole course, no matter how sick he was — he was very sick, they just kept stressing, ‘he can’t go the hospital.'”
That left Dukes and other family members experiencing a gamut of issues, among them a good deal of helplessness, stress and fear.
Bottom line: Western New York’s communities of color need substantial support and more access to assistance so the large numbers of people who need care can receive it. COVID-19 is only making this crisis worse.
As Dina Johnson of the Alzheimer’s Association of Rochester and the Finger Lakes Region typed to Dukes in the Zoom chat: “We are also finding that some families are so stressed out and have no one to assist them especially during this time. So many families are crying out for help and need extra support but do not know where to turn.”
More: Caregiving in Rochester: ‘It was only me that was taking care of my father’
An image of the June 30 Zoom panel discussion among Rochester-area caregivers, providers and experts on “Caregiving in Communities of Color in the Age of COVID-19.” The discussion was put on by the Democrat and Chronicle as part of a project funded by the Solutions Journalism Network. (Photo: MICHAEL KILIAN/Democrat and Chronicle)
What’s next in solutions-oriented caregiving coverage
As a journalist and as editor of the Democrat and Chronicle, our Solutions Journalism Network-funded coverage and the two panel discussions make me feel more committed to connecting the dots of local caregiving gaps and how they might be bridged.
Some excellent news: The Solutions Journalism Network is in the midst of creating a media collaborative to expand caregiving coverage across Western New York. The D&C and quite a few other local and regional news organizations will join forces to spotlight more potential solutions to improve caregiving in communities of color.
The Network’s regional project director is a name you know well, Karen Magnuson, the longtime executive editor of the D&C and a strong voice for creating a more diverse, inclusive and equitable community.
Lots more to come on where this coverage heads in the months and years ahead. Readers’ suggestions on useful steps to increase access to health care, transportation and the Internet in communities of color are welcome.
Without question, if Western New York can shore up services, ease access and become a more inclusive place, caregiving will not be such an uphill struggle for everyone, especially for Black and Latino families. And also without question, a community that commits to making that happen will have solved numerous other intractable issues of racial inequity as well.
Read the series: Caregiving, communities of color and COVID-19
Journalists Marcia Greenwood of the Democrat and Chronicle, Sarah Taddeo of the USA TODAY Network New York State Team and Katie Sullivan Borrelli of the Binghamton Press and Sun-Bulletin reported this three-part series published recently:
New outreach offers vital help for people of color caring for loved ones
Caregiving in a pandemic: Technology key to quality healthcare in communities of color
Program helps New York home health agency face coronavirus challenges in real time
The project’s editor was Rochester Storytelling Editor Mark Liu. The effort was supported financially by the Solutions Journalism Network and made possible through a grant to SJN from the Ralph C. Wilson, Jr. Foundation.
Internet access: Visit the Finger Lakes Region Digital Inclusion Coalition website: https://fingerlakes.online
Support options: For patients, clients, caregivers who need support (financial, food insecurity, health-care access, etc.), visit the Rochester Mutual Aid Network website: https://www.rocmutualaid.com
Avoiding scams: Virtual “Scam, Fraud and Identity Theft Prevention” webinar, 2 p.m. Tuesday, July 7: Visit https://www.lifespan-roch.org/new-events
Alzheimer’s Association helpline: 1-800-272-3900.
I pledge to you this: The D&C team will do its best to serve greater Rochester and each of our readers every single day.
Thanks for reading.
Michael Kilian is executive editor of the Democrat and Chronicle. Reach him at email@example.com.
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