Our mother died on Monday, May 18, 2020, after a long battle with Frontotemporal Dementia (“FTD”). FTD is a terrible disease that robs a person of their humanity and relationships and, frankly, their life. In our mother’s case, not only did the FTD affect her mind, but she had the variant that also affected her nervous and muscular systems, rendering her completely non-ambulatory and unable to feed herself. She endured this for many years, as her mind and body atrophied. But all of this pales in comparison to the last eight weeks of her life.
Our mother was a resident of the dementia care unit at an upscale, beautiful, and very expensive senior care home since 2013. The surroundings were lovely, the caretakers were devoted and loving, and the home regularly brought in performers, teachers, and therapists to entertain and work with the residents in an attempt to keep their minds and bodies as active as possible. Further, family members of residents came and went, some visiting daily. All of this came to a screeching halt when the “Safer at Home” (lockdown) orders began. The performers, teachers, and therapists were forbidden from coming. And, more amazingly, family members were forbidden from coming. Communication and information about the goings on at the facility was infrequent.
The facility lost caretakers and staff, because they were sick or afraid of getting sick. The resident to caretaker ratio skyrocketed. The few caretakers who did work were placed in an untenable position. In an effort to prevent spread of disease, no community activities were permitted. The solution? Lock each resident in their room, alone, and with no human interaction. Caretakers, covered in masks, gowns, and gloves (and therefore unrecognizable to the already mentally tenuous patients) came in infrequently to check on the residents to test for fever and signs of life. Residents were quickly fed in their rooms since staff was low and each resident had to be individually attended to. Other than those few interfaces, the residents were left alone, in their beds, lost, lonely, and confused. Whatever mental abilities they may have had deteriorated even further, brought on by extreme isolation. Further, in our mother’s case, because she was non-ambulatory and unable to feed herself, she never moved and she barely ate; simply laying in her bed for weeks and weeks. As expected, she developed bed sores, extreme weight loss, and, eventually, the pneumonia that caused her death.
This is the way our mother died: alone, starved, emaciated, afraid, and confused – like a caged animal.
To add insult to injury, her funeral was a farce. Despite the fact that it appears that the virus is more difficult to spread outside, the cemetery, as required under Los Angeles restrictions, enforced a strict 10-person, 20-minute rule. We asked, we begged, we pleaded, for concessions. While they granted us an additional 25 minutes of time, they would not budge on the 10-person limit. Exactly 10 people were there, standing graveside, distant, and wearing masks. In fact, we were advised that they would stop the service if any attendee did not wear a mask. Only because we stated that we had a “condition” for wearing masks were we permitted to remove our masks just long enough to deliver her eulogy. In order to comply with strict time requirements, time-honored religious traditions were either rushed or completely ignored. And then, the coup de grace: while it is customary for friends and family to mourn together and reminisce about the deceased, that too is forbidden under these draconian laws. The healing cannot happen, because the mourning cannot begin.
COVID-19 is killing a tremendous number of nursing home residents, but COVID-19 inspired laws will surely kill the rest. On March 30, 2020, the California Department of Public Health (“CDPH”) issued an All Facilities Letter to all Skilled Nursing Facilities, stating, among other directives, that “SNFs shall not refuse to admit or readmit a resident based on their status as a suspected or confirmed COVID-19 case. SNFs shall institute appropriate precautions to prevent the spread of infection to health care personnel and other residents as specified in AFL-20-25.1.“i ii Six weeks later, on May 15, 2020, CDPH issued AFL-20.33.2 which although somewhat improved the situation, it still allowed for potential COVID-19 patients to be admitted to senior homes.iii The first part of the directives created an incubator for the virus; the second part created a prison.
The current situation is inhuman. COVID-19 is a disease that particularly affects the elderly. “Nearly half of all deaths related to COVID-19 in California are linked to elder care facilities,“iv and nationwide, “residents in such facilities account for 42 percent of all deaths from COVID-19, for states that report such statistics.“v
This situation should never happen again. Even though the nursing homes represent a very high-risk population, residents who do not contract COVID-19 should not die from starvation and neglect. There are several options that could prevent this:
Staffing in the facilities can be modified by having caretakers stay on site, 24/7, for some extended period of time. Caretakers should be paid extremely high premiums to undertake these assignments. Caretaker to resident ratios should be increased to accommodate the additional COVID-19 related needs of residents.
At the outset of the virus, these facilities were uninfected environments. Keeping the outside world out would maintain such an environment. Residents and caregivers should be regularly tested to ensure that the virus has not been introduced to the facilities.
In the unfortunate event that a resident should contract the disease, that resident should be immediately moved to an isolated environment at an off-site hospital or dedicated facility. Residents can return once they have been disease free for two weeks.
Because family and outside doctors and caretakers will have limited or restricted access, all facility rooms and common areas should be outfitted with cameras and tablets or computers that would allow family members to frequently “zoom” in to check on their loved ones. Further, if a family member is willing to go to an outside courtyard in the facility to feed and comfort their loved one, they should be permitted to do so (wearing appropriate PPE).
With these recommendations, existing circumstances can change. Let residents go outside. Let residents eat and visit with each other. Let residents see the caretaker’s unmasked faces. Let caretakers move residents from their beds and around the facility grounds. Improve circulation and add air filtration systems. Let residents enjoy what limited time and abilities they still have. Anything less is inhumane.
Will people still die in senior care homes? Yes. Will elderly still contract and die from COVID-19? Yes. Will these people die alone and afraid? We hope not.
ii Health and Safety Code section 1250(d)