My mother and I did not expect her to be hospitalized for emergency surgery when we set out that May afternoon for her medical appointment. We really thought she just had a bout of stomach flu. We did not even put in her hearing aids that morning because she was vomiting. However, upon examining my mother, her physician was so concerned she immediately phoned the hospital to tell them we were coming. 

As a public health analyst working on the Administration for Community Living’s National Alzheimer and Dementia Resource Center as well as a family caregiver for a person with cognitive impairment, I have significant overlap in my personal and professional lives. Had I known in advance that my mom would end up in the emergency department, I would have taken steps to help her be as prepared as possible and to lessen the impact of being hospitalized during this time of COVID-19. But because the need was so unexpected, we were unprepared for what happened next. 

Unfamiliar hospital environment, COVID-19 safety measures, and persons with cognitive impairment

My mom’s care team did a fabulous job under the most difficult of circumstances. They saved her life, and my family was able to celebrate my mom’s eighty-fifth birthday with her this September because of their excellent care and efforts. But the hospitalization experience was traumatic for her, just as any hospital stay can be for someone with dementia. In this time when pandemic safety measures are in place, the effects can be even worse for persons with cognitive impairment. However, there are steps that both families and providers can take to mitigate some of the stress for the hospitalized person. 

Why my mom thought she was abducted by extraterrestrials

While she was whisked away by the ER care team members, I was not allowed past the entrance and sat in my car for six hours getting updates on the tests that were being run. The care team indicated my mom needed emergency surgery to save her life and would be admitted. 

Due to the pandemic, the ER personnel were swathed in personal protective equipment (PPE) including double face masks, goggles, face shields, double-gloves, hair and head coverings, and gowns with foot coverings. All these coverings, designed to keep the medical team and patients safe during the pandemic, obscure the things that identify people as human, and without these cues, my mom believed she had been abducted by aliens. Since she was facing forward in her wheelchair, she had no idea when my hands left her chair and the intake nurse took over—one moment I was there, the next I was gone. 

Once my mom lost contact with me, her day-to-day caregiver who provides her with reassurance, reminders, and cues, and who serves as her trusted reporter to medical personnel on her medical conditions, she was lost. I was not there to explain what was happening and what to expect next. She was alone and adrift in an unfamiliar, noisy place, sick and in pain while not being able describe the problem. She was surrounded by busy beings whom she could not hear or understand, and they could not understand her. While the medical personnel tried to provide comfort and information, the effort was lost behind masks and the PPE. While the necessary decisions were made to save her life, in her mind they were made without her input or knowledge.  

I’m not saying it was aliens, but it was aliens 

My mom was stripped of her clothes and given an open-back gown; a tube was inserted up her nose down to her stomach. She was left in a cold room with bright lights. She was hooked up to machines that made noise with piercing alarms. She could not hear the overhead announcements clearly, but they formed a low ominous rumble in the background. She was taken to yet another room, while screaming for me, and prepared for surgery with general anesthesia. Anesthesia itself is anathema to persons with cognitive impairment as it can cause functional decline, increase the chances of delirium, increase agitation, and cause incontinence. All of these did occur post-surgery for my mom.

Held captive aboard the alien spaceship

When I called my mom’s room and she was able to recognize the phone ringing to answer, she would tell me they were dumping buckets of excrement on her (she was continent before the surgery but not immediately after), that they were starving her (they could not feed her solid food until 5 days after the surgery), that she was going to walk out of there with her bare bottom hanging out if I didn’t come and get her right now! (She tried to leave and was temporarily put in restraints and given sedatives for the remainder of the stay.) Not surprisingly she became paranoid and accused me and the doctor of conspiring to work against her, but still she would call for me all night long. 

These are all common occurrences for people with cognitive impairment who are hospitalized but were exacerbated by the visitation limitations and safety protocols put in place during the COVID-19 pandemic. 

To thwart the aliens next time – how to help persons with cognitive impairment deal with hospitalization during COVID-19

There are approaches to use with persons with cognitive impairment to help lessen the impact of being hospitalized during this time of COVID-19. Had I known in advance of my mom’s impending admittance to the hospital, I would have used these concrete steps to help make the experience less difficult for both the care staff and my mom.   

To aid the hospital staff: To help her care team, I would have grabbed the packet we keep on the refrigerator with all her emergency medical documents, including her power of attorney papers, her living will, the medication and allergy lists and insurance papers. Going forward, I will keep a copy of this information with the first aid kit in my car. I would have included written instructions with the names of her children and key phrases my mom responds well to, so the care team could reassure her that she was where she was supposed to be and her children know where she is. I would have given them hints to aid communication with my mom including details about her normal routine for bathing and dressing. I would have made sure she had her hearing aids so she could hear and interact with the team. I would have made sure she had her tablet set up with easy access to audio books so the care team could give her an activity or distraction when she became agitated. 

To support the hospitalized person with cognitive impairment: To help my mom, I would have made sure she had her cell phone with voice access so she could call me and my siblings without nurse assistance. I would have made it easy to access personal music lists on her tablet, so she could listen to her favorite music to calm her and help her fall asleep. I would have made sure she had her Bible so she could continue her daily devotions like she does every day at home. I would have made sure she had a videoconferencing app on her tablet so she could see familiar faces when she was scared. Having access to these simple activities would have brought her comfort during her hospitalization. 

Kept safe from E.T.

Even knowing how to do all these things, I stumbled badly when “it happened to us.” But I am comforted by the words of Maya Angelou: When you know better, do better. Next time, I will do better. I promise, mom. I will do better, and the aliens will not get you.