Opinion by the Rev. Judy Young, Penn Live Patriot-News, March 23 2021
Retired history professor Charlotte Smith Bode was born in 1920 and like many of our “Greatest Generation,” now lives in a nursing home. I’m proud to be her daughter.
While my father was earning the Croix de Guerre in North Africa, Charlotte was doing assembly-line quality control for B-52s, both to support the Allies and to pay her way through earning a Phd in American history. She then combined her academic career with sewing, cooking, cottage construction, and devotion first to my brother and me, then to her grandsons.
As Charlotte aged, the family became increasingly devoted to her, in turn. Four times a year my brother flew back from Washington State to Maryland for week-long visits. I live within driving distance and was able to spend a day with Mom weekly. I reminded her of herself by reading and talking with her, and I kept track of her health issues, hearing aid, glasses, clothing, and books. I didn’t think of this as essential care until my weekly Mom day was removed by Covid restrictions.
When Charlotte’s excellent facility opened up again last June, it was for brief weekly outdoor visits. By the following October we came indoors, but still for just 45 minutes a week. Then came the second complete lockdown. No more reading to keep Charlotte’s dementia at bay, no keeping track of her other conditions. At her age, some of the cognitive and physical decline we noted on weekly Zoom calls seemed normal. We hired private caregivers to help the staff with her physical needs. And we waited for the vaccine.
First Charlotte, her caregivers, and her whole unit received both doses. At 65, I was then fully vaccinated. Yet to our dismay, there was still no plan for normal visitation. And after I started studying nursing home visitation and regulations, I found that my mother’s decline was nothing to what other residents lacking family visits have been suffering.
An Associated Press report estimated that by November 19th, 2020, there had been about 40,000 “excess deaths” (deaths beyond the normal rate of fatalities in nursing homes) since March. These were deaths from causes other than COVID.
While 90,000 had then died of Covid in under-staffed nursing homes (now it is 130,000), overworked aides were also unable to take on jobs that had been done by family members, such as the slow process of feeding some residents three times a day. It was not physically possible for aides responsible for 20 residents or more to add this to their other tasks, after family caregivers were banned.
Groups like Consumer Voice for Quality Long-Term Care have now gathered story after story of residents becoming skeletal, and dying, as well as dying from other neglected conditions. Family “visits” are not just a feel-good preference.
Nursing home visitation can be a matter of life and death. Regulations come first from the CDC. Then the CMS, Centers for Medicare and Medicaid Services, uses these to issue guidelines for visiting nursing homes. These are then interpreted by state, and then county health departments. Then the administrations of the nursing homes interpret these guidelines, and make their rules. My mother’s care is good, and her home did allow 45-minute visits again, and even hugs between vaccinated people, after new CMS guidelines were issued on March 10. But this is not enough.
Not only my mother, but all long-term care residents need what is now a visitation policy in some states other than PA. Residents need to be allowed to designate an Essential Support Person (or ESP), who can visit and provide care as needed. It takes more than 45 minutes to help Charlotte as she needs.
Dr. Jason Karlawish, a co-director of the Penn Memory Center, stated in a Feb. 19, 2021 New York Times article, “blanket bans on dementia caregivers are akin to taking away a wheelchair from a person with physical disabilities.” Even more seriously for residents with eating problems, mealtime help several times a day can be what keeps them alive. Of course, states that allow the designation of an ESP by residents require that these caregivers follow the same infection control testing and protocols as other caregivers.
Director of the Nursing Homes Division of the CMS, Evan Shulman, seems unaware of the life-saving potential of this policy. Mr. Shulman presented the March 10 CMS Nursing Home Visitation Guidelines at a Consumer Voice Webinar on the subject on March 12th.
In the Q & A following, Mr. Shulman discouraged family members from performing tasks for residents that “should be done by the facility, however much family may want to help.”
In reality, family members end up performing tasks that otherwise are not done. I have deep respect for the care provided by overworked and dedicated nursing home aides. But even they cannot be in more than two or three places at once.
Especially in the most understaffed facilities and in times of crisis, family help has always been needed. Please encourage your representatives to support ESP designation, as well as a return to normal nursing home visitation as it becomes safe.
Judy Young is a retired United Methodist pastor and the daughter of Dr. Charlotte Bode.