“I am afraid of dying,” cried my mom as I stroked her forehead. She had just awakened from a nightmare.
My mother was released from the hospital just over a month ago after a two-week struggle with COVID-19. Prior to admission, she had led an independent life. Since discharge she has struggled with symptoms of dementia and has difficulty walking. At one point, she fell at home and was too confused to use a cellphone to call family, so she dialed 911. When the fire rescue arrived, still disoriented, she refused to open the door. My sister and I are now caretakers around the clock.
COVID reporting typically describes trends in the number of infections and deaths, but more must be done to track and address the ruined lives of those who survive.
At the time of diagnosis, one in five people suffer from confusion. Actually, we brought her to the emergency room because I was concerned that she had a stroke. It was there that she spiked a temperature and tested positive. The confusion worsened during admission and still has not been resolved.
Fully, one-third to one-half of patients who require hospitalization still have symptoms associated with the brain and nervous system for two months or longer after discharge. More than half of those infected complain of a loss of smell.
Indeed, this was the presenting symptom of the first patient diagnosed with COVID at Manakai O Malama. Confusion, headaches, weakness and tingling or numbness in the legs also commonly comprise this post-COVID symptom complex.
The truth is that my mother’s memory began to lose its edge a few months before she fell ill, so she was probably already in the early stages of dementia. She is not alone in facing the combination of the neurological insult of COVID on top of an already fragile memory.
Ninety-four percent of COVID deaths in the U.S. are found to be in people with pre-existing health conditions, which often includes dementia. Longer life expectancies combined with preventable risk factors including smoking, obesity, diabetes and elevated blood pressure or cholesterol have increased the prevalence of dementia. Mom, like so many others, had all of these at some point.
Consider also the emotional trauma of a prolonged hospital admission in isolation. A close friend recently shared his grief from the death of his grandmother, who suffered from behind a glass window. As she was taking her last breaths while sick with COVID, the family was unable to console her with a loving touch.
One of the hardest things about the COVID admission for my mother was that family could not even visit. The strangers who entered the hospital room all wore masks, of course making it difficult to see who they were or hear what they said.
The mental confusion also made it impossible to use a cellphone to reach out to us. It is quite common in any case for elderly patients with prolonged admissions to suffer disorientation as the result of sleep deprivation, bright lights, beeping machines and disruptions to their routine. It is exacerbated by the social isolation that comes when managing COVID. This, together with a sense of shame and stigma for having succumbed to COVID, plus the fear of dying, is deeply traumatic. Mom still has not healed from the trauma of her admission.
Together with our mother, my two sisters and I are now at a crossroads. After caring for her at home around the clock we can all see that she is not improving and that the intensity of the care she needs is unsustainably escalating. Although we have organized a team for 24/7 home care, an assisted living facility seems the safer choice. On Friday, she voiced an awareness that the care she needs now is too much for her children to provide. She recalled that only two months ago, she was still independent and lamented that the last chapter of life seemed to have come so suddenly. She is deflated and feeling the grief of leaving the home she built and the life she has enjoyed all these years.
Because so many clusters of COVID infection have occurred in nursing homes, policies are stringent. Mom needs to go out three days a week for kidney dialysis, so she will need to remain in isolation from the general population at the new facility. Fortunately, we were able to secure a room on the side of the building so visitors can enter directly. We are now figuring out who will be able to come, and especially when, to offer her much needed comfort and love. This is the most meaningful gift we can offer as she prepares for her transition from this world.
Ira “Kawika” Zunin, MD, MPH, MBA, is a practicing physician. He is medical director of Manakai O Malama Integrative Healthcare Group and Rehabilitation Center and CEO of Global Advisory Services Inc. His column appears the first Saturday of every month. Please submit your questions to firstname.lastname@example.org.