For family caregivers, especially those of us who care for our loved ones with cognitive challenges like Alzheimer’s disease or Autism, COVID-19 is a worst-case scenario: a perfect storm of stress, chaos, and a virus that dictates our every move.
The caregiving universe changed in a flash, with little time to pivot or adjust to a new normal. Suddenly, the daily routines that provided some semblance of calm and well-being simply imploded. Access to home health, adult daycare, preventive care visits, and other critical services we use every day practically disappeared in most communities. Even worse, many medications used to treat chronic illness are in short supply, like hydroxychloroquine, used to treat lupus and rheumatoid arthritis.
Caregivers who provide care at home often have to leave their homes to obtain supplies or medications or wait many days for them to be delivered (in communities that have this luxury) due to the volume of home-delivery right now. This creates a scenario where caregivers are repeatedly visiting grocery stores and pharmacies and putting themselves at risk, which in turn, puts the people they care for at risk.
To make matters worse, we can’t visit our loved ones who reside in long-term care facilities, whose care we oversee and monitor on a daily basis, therefore, we have no window into the quality of care they are receiving. We have frail family members who do not understand what is going on and why we are not there. If that family member ends up in the hospital, we have no idea if we will ever see them again. This puts immeasurable stress on family caregivers.
A few short months ago, we were reminding family caregivers about the importance of taking care of themselves and using respite care to take a mental break from their caregiving responsibilities. Those days are gone. There is no respite. We often care for the most vulnerable in our communities, who could easily succumb to this insidious threat, thus we are terrified to let anyone into our homes -- knowing they could be asymptomatic carriers of the virus.
“As the parent of a child with a complex medical condition, COVID-19 has changed the way we manage complex care at home. At 10:15 p.m., I open the door to a masked nurse holding up a thermometer to show me that she does not have an elevated temperature. This procedure does not feel adequate; I know carriers can be asymptomatic. But this is all I have, the only tool I can use to feel safer. The support of in-home care at night allows us to sleep and work, and we are grateful for it, but we are terrified of the prospect of inviting the virus in by way of the caregivers we need.” – Nikki Montgomery, Caregiver
Many of us lost the full- or part-time jobs that kept us afloat. Suddenly, we face food and housing insecurity on top of our caregiving challenges. Even if we retained our jobs, we no longer have the caregiving support we relied on that enabled us to work in the first place.
We cling to hope that Washington will not forget us in the relief efforts. Democratic Reps. Joaquin Castro (Texas) and Deb Haaland (N.M.) led more than 30 of their colleagues in asking House leadership to broaden the definition of essential workers in the next relief package. “The frontlines of this crisis start at home and will remain there as we fight this pandemic for the long haul,” Castro said in a statement. “The gross inequality of our health care and childcare systems is starker than ever, and that includes a complete lack of support for our nation’s caregivers.”
The pandemic has cast a bright light on the shortcomings of our healthcare system and its unrelenting reliance on family members to provide the bulk of care for our chronically ill loved ones, even when it has become one of the most dangerous jobs in America. More than 40% of the total population of this country is living with a chronic disease.  We have an estimated 43.5 million caregivers in the United States supporting them.
“It’s an extremely confusing time because we don’t have real national coordination. A caregiver may live in a different state or city from their loved one… that has different rules about what you can/cannot do for them. And it is very hard to get information to make good, timely decisions. If you have a parent in senior living or other settings, while there are best practice guidelines about communicating with families, there are not many actual laws. So, when we were trying to decide if we should move my mom, it became clear there wasn’t going to be any way to know if someone in her building started to have symptoms or even if a COVID case was diagnosed.” – Geri Lynn Baumblatt, Caregiver
One thing that has become crystal clear: we need a national health (and pandemic) infrastructure that is designed with family caregivers at the forefront. I am hopeful that the RAISE Family Caregiver’s Act will help get us there. In the meantime, let’s not forget the unsung heroes, the family caregivers, who continue to battle on under extraordinary circumstances.
 Centers for Disease Control and Prevention. The Power of Prevention. (2009) Accessed at http://www.cdc.gov/chronicdisease/pdf/2009-Power-of-Prevention.pdf
Tackling the burden of chronic diseases in the USA. Lancet 2009;373(9659):185. Accessed at http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)60048-9/fulltext
 National Alliance for Caregiving and AARP Public Policy Institute. (2015). Caregiving in the U.S. 2015 Report. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
Written by members of The Beryl Institute's Global Patient and Family Advisory Board including Isabela Castro, Nikki Montgomery, Tony Serge, MaryAnne Sterling and Janepher Wabulyu. The Global Patient and Family Advisory Board complements the Institute’s boards by ensuring the voices of patients and families are a central consideration in the strategic direction and offerings of the Institute. The Board reviews the Institute’s areas of focus and current resources and offer suggestions on new opportunities, topics of interest, etc., ensuring the perspective of the patient is part of all Institute efforts.