The COVID-19 pandemic is causing tremendous strain on our nation, our health-care system, and, especially, within our homes. I work on the front lines as a nurse-practitioner in the emergency department of a Philadelphia hospital.
In addition, I am a caregiver for my mother, who lives with Alzheimer’s. And the truth is, straddling these two roles has brought me to my knees.
I have watched along with the rest of America as COVID-19 ravaged long-term care facilities, whose residents are at significant risk of contracting and suffering the worst consequences of this potentially deadly virus.
Before the pandemic, we had considered transitioning my mother into long-term care, but COVID-19 put those plans on hold. I have devoted myself to her care these last few years. When I am not at work, I am with her. When her day center — and along with it, her opportunity to be social and participate in group activities — closed due to COVID-19, my sister and I did all we could to maximize her well-being. Caregivers in similar situations will know what it’s like to set aside your own exhaustion to provide meaningful engagement and activities.
I can no longer ignore how the struggle is straining my own mental and physical health. I am faced with deciding either to continue caring for my mother at the certain cost of my well-being, or choose long-term care and potentially forfeit hers.
Exploring long-term care now looks much different from before COVID-19. Previous assurances of a thoughtful transition are completely omitted now that the sole focus is on physical safety. My sister and I met with a facility for a virtual tour, our first since the pandemic began. They began by explaining that they place new residents in quarantine in their room for 10 days, allowing interaction with only one other person.
Yet evidence shows us that social isolation in those with dementia can cause cognitive decline, and the speed of that deterioration has been borne out during the pandemic.
After her isolation period, she would be able to join the other residents, but could see family members only through occasional outdoor visits that would be held at a distance of six feet and with masks on. Visits would mainly be conducted virtually, using such apps as FaceTime, hardly a method geared for a person with Alzheimer’s. As a caregiver, an advocate with the Alzheimer’s Association, and a health-care provider, I know these measures protect physical safety, but they contradict the very fundamentals of dementia care.
According to the Alzheimer’s Association, 48% of nursing home residents and 42% of those in assisted living have Alzheimer’s or other dementias. Our COVID-19 measures fail to address the whole person. We are allowing a part of them to die, even if they never contract the virus.
Even though it was the right thing to do, it weighed heavy on my heart knowing we had to impose similar lockdown restrictions in the hospital. As we learned more about the virus, we were able to allow for patients to have a partner or other loved one there to support them. As a nurse-practitioner, I understand that it is necessary to see beyond the body we treat, instead looking at the whole person entrusted in our care. The people that surround our patients are vital to their health and wellness.
Safety is important, but so is dignity. We now have a safe path forward, rooted in science. Rapid testing — to identify at the front door of a medical facility whether a visitor carries the virus — would put an end to social isolation in long-term care communities and reunite families after months of separation. I write this article as a plea to Gov. Tom Wolf to ensure access to rapid testing now for all long-term care communities in Pennsylvania. It’s the only way to ensure that we truly are protecting the lives of so many who suffer with dementia.