At first, Dr. Rebecca Elon began to notice her husband’s personality changes and an occasional lapse in judgment. These incidents occurred in 2013.
Although Dr. Elon’s husband, William Adler III M.D., continued to exhibit these unusual changes in his behavior, he refused to seek help for several years. A recent article in Kaiser Health News lists Dr. Adler as the former chief of research in the clinical immunology unit at the NIH.
Dr. Elon is a Johns Hopkins part-time associate professor and teaches in a limited capacity at the Maryland University Medical School.
A Geriatrician Gets Frontline Experience As a Caregiver
In 2017, Dr. Adler’s symptoms accelerated. He was examined and received a diagnosis of frontotemporal dementia (FTD) with motor neuron disease (MND).
Within two years Dr. Adler had extreme difficulty speaking, swallowing, and walking. Dr. Elon hired a part-time home healthcare worker. By January 2020, she enrolled her husband in hospice.
The Pandemic Crushed Her Last Hope For 24 Hour Home Care
The pandemic caused significant changes to Dr. Elon’s next plan which was to put her husband in an assisted living facility. The healthcare worker quit, the hospice workers refused to come to work, and the local assisted living facility went into lockdown.
Dr. Elon decided the only option was to keep her husband at home and take full responsibility for his care. She had already cut her hours drastically. But FTD was relentless, and Dr. Adler died in the early months of 2020.
About FTD
A disease such as FTD progresses rapidly between two to ten years after diagnosis. Some patients may need twenty-four-hour care at home or may need to be institutionalized.
A Second Death, A Second Challenge
At about the same time Dr. Elon was faced with another challenge. Her 96-year-old mother had dementia and had been cared for by her sister, Melissa Davis, for the past ten years.
Melissa had recently been diagnosed with esophageal cancer and died in May 2020 just a few months after the death of Dr. Adler.
That shifted the responsibility to Dr. Elon. With the help of her two sisters, Dr. Elon moved her mother to an assisted living facility and relocated to a nearby retirement community in Milwaukee.
Dr. Elon saw that the staff at her mother’s assisted living facility were not especially attentive to the needs of the residents. In addition, the facility was constantly on lockdown. Dr. Elon saw the need to move her mother out of her unsteady environment and into Dr. Elon’s own apartment.
The doctor, at one time, had been a medical director at a hospice care center. Nevertheless, she readily admits that when her husband was dying, she was not prepared for the emotional strain associated with end-of-life care. Dr. Elon acknowledges that as a geriatrician she only “generally” understood what patients’ families must endure.
Nothing Dr. Elon had learned in her schooling or in her practice had prepared her for her personal experience. Now she fully understands what families endure when someone in the family has a serious illness.
According to the doctor, the pandemic taught her the “deepest lesson.” It is that caregiving involves love, and love involves being by the patient’s bedside even when trying to comfort their loved one seems overwhelming.
With Love and Respect
Dr. Elon speaks now as a geriatrician with a specialty in long-term care. Since she began her studies in 1970, she has been aware of the prejudice experienced by the elderly.
Her message to the medical community is that as a nation we must take responsibility for the elderly and we must do that with the utmost love and respect.
