The life of Dr. Rebecca Elon took an unexpected turn in 2013 when she noticed changes in personality and judgment fell on her husband, Dr. William Henry Adler III.
The loss of a husband. The death of a sister. Foster an elderly mother with dementia.
This has been a year like no other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
He has taught her what families go through when caring for someone with a serious illness, like she had nothing before. “Reading about this kind of attention was one thing. Experiencing it was completely different,” he told me.
Were it not for the challenges he faced during the coronavirus pandemic, it is possible that Elon would not have learned first-hand the grueling end-of-life care, both physically and emotionally, which he only understood in an abstract way. as geriatrics.
And perhaps he would not have been surprised by what he called the deepest lesson of this pandemic: that caring is a manifestation of love and that love means being present with someone even when the suffering seems overwhelming.
All of these experiences have been “a gift, in a way: they’ve really changed me,” said Elon, 66, a part-time associate professor at the Johns Hopkins University School of Medicine and associate professor at the University of Maryland. School of Medicine.
Elon’s rich and unique outlook on the pandemic is based on his multiple roles: family caregiver, geriatric, and long-term care policy expert. “I don’t think we, as a nation, will make the necessary improvements [in long-term care] until we take responsibility for our aging mothers and fathers, and we do so with love and respect, ”she told me.
Elon has been well aware of prejudices against older adults, and has decided to overcome them, since he first expressed interest in geriatrics in the late 1970s. “Why would you want to do that to the world?” he recalled that he had been asked by a chair of the department at Baylor College of Medicine, where he was a medical student. “What can you do for these [old] people? “
Elon ignored the contempt and became Baylor’s first geriatric fellowship in Houston in 1984. She appreciated the elderly aunts and uncles she had visited each year during her childhood and was eager to focus. -is in this new specialty, which had just been established in “She is an extraordinary advocate for the elderly and families,” said Dr. Kris Kuhn, a retired geriatrician and lifelong friend.
In 2007, Elon was named Geriatrician of the Year by the American Society of Geriatrics.
Her life took an unexpected turn in 2013 when she began to notice personality changes and the judgment fell on her husband, Dr. William Henry Adler III, former head of clinical immunology research at the National Institute on Aging. , which is part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or talk and had lost the ability to climb the stairs of his home in Severna Park, Maryland. “He became a prisoner in our upstairs bedroom,” Elon said.
By then, Elon had cut back on work significantly and had hired a home health aide to come several days a week.
In January 2020, Elon enrolled Adler in a hospice and began organizing to move him to a nearby assisted living center. Then the pandemic hit. Hospice staff stopped arriving. The home health care provider stopped smoking. The assisted living center was blocked. Not visiting Adler was unimaginable, so Elon kept him at home, being responsible for his care.
“I lost 20 pounds in four months,” he told me. “It was an incredibly demanding job, taking care of him.”
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and was no longer able to care for her mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who had dementia, required assistance.
Elon jumped into action. She and two other sisters moved her mother to an assisted living facility in Kankakee, while Elon decided to move within a few hours to a community of continuing care retirees in Milwaukee, where she had spent her childhood. “It was time to leave the east coast behind and be closer to the family,” he said.
In late May, Elon and her husband moved into a two-bedroom apartment in Milwaukee with a balcony overlooking Lake Michigan. The facility has a restaurant on the ground floor that distributes meals, a concierge service, a helpful hospice in the area and other amenities that alleviated Elon’s isolation.
“I finally got help,” he told me. “It was like night and day.”
Before going to bed, Adler moved into a chair with the help of an elevator (could not be installed in his Maryland home) and stared happily out the window at paragliders and boats strolling there.
“In medicine, we often look at people with profound disabilities and ask ourselves,‘ What kind of quality of life is this? Elon said. “But even though Bill was so deeply deteriorated, he had a strong will to live and retained the capacity for joy and interaction.” If he hadn’t been by his side day and night, Elon said , I might not have appreciated it.
Meanwhile, her mother moved to a care center outside of Milwaukee to be closer to Elon and other family members. But things did not go well. The facility was closed most of the time and staff members were not particularly attentive. Concerned about her mother’s well-being, Elon removed her from the facility and took her to his apartment in late December.
For two months, she cared for the needs of her husband and mother. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face on a grimace, he hit the bed with his hands, breathing hard. With the help of hospice workers, Elon began administering morphine to relieve pain and agitation.
“I thought,‘ Oh my God, is that what we ask families to deal with? “Although she had been the medical director of a hospice,” this did not prepare me for the emotional exhaustion and ambivalence of giving morphine to my husband. “
Elon’s mother was bewildered when Adler died ten days later, repeatedly asking her what had happened to her and crying when she was informed. At some point, Elon realized that his mother was also hurt by all the losses he had suffered over the past year: the loss of his home and friends in Kankakee; the loss of Melissa, who had died in May; and the loss of their independence.
This was also a possible revelation thanks to being with her every day. “The dogma of people with dementia is that you stop talking about death because they can’t prosecute it,” Elon said. “But I think if you repeat what has happened over and over and put it in context and give them time, they can be saddened and start to recover.”
“Mom does a lot better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and believes there are benefits to her sister as well. “I think I have [Mom] there after Bill ‘s death, having someone else to take care of has been a good distraction. “
And so, for Elon, as for so many families across the country, a new chapter has begun, born of hard needs. The days go by relatively quiet as Elon works and she and her mother spend time together.
“Mom will look at the lake and say, ‘Oh God, those colors are so beautiful,'” Elon said. “When I cook, she’ll tell me, ‘It’s very good to eat with you.’ When he goes to sleep at night, he will say, “Oh, that bed feels so wonderful.” She is happy every moment. And I am very grateful that he is with me. “