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The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.

This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.

It鈥檚 taught her what families go through when caring for someone with serious illness as nothing has before. 鈥淩eading about caregiving of this kind was one thing. Experiencing it was entirely different,鈥� she told me.

Were it not for the challenges she鈥檚 faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally 鈥� something she understood only abstractly previously as a geriatrician.

And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.

All these experiences have been 鈥渁 gift, in a way: They鈥檝e truly changed me,鈥� said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.

Elon鈥檚 uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. 鈥淚 don鈥檛 think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers 鈥� and do so with love and respect,鈥� she told me.

Elon has been acutely aware of prejudice against older adults 鈥� and determined to overcome it 鈥� since she first expressed interest in geriatrics in the late 1970s. 鈥淲hy in the world would you want to do that?鈥� she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. 鈥淲hat can you possibly do for those [old] people?鈥�

Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. 鈥淪he鈥檚 an extraordinary advocate for elders and families,鈥� said Dr. Kris Kuhn, a retired geriatrician and longtime friend.

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.

Eventually, however, Adler鈥檚 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 speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. 鈥淗e became a prisoner in our upstairs bedroom,鈥� Elon said.

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.

In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn鈥檛 imaginable, so Elon kept him at home, remaining responsible for his care.

鈥淚 lost 20 pounds in four months,鈥� she told me. 鈥淚t was incredibly demanding work, caring for him.鈥�

Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon鈥檚 sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.

Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she鈥檇 spent her childhood. 鈥淚t was time to leave the East Coast behind and be closer to family,鈥� she said.

By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon鈥檚 isolation.

鈥淚 finally had help,鈥� she told me. 鈥淚t was like night and day.鈥�

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn鈥檛 be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.

鈥淚n medicine, we often look at people who are profoundly impaired and ask, 鈥榃hat kind of quality of life is that?鈥欌�� Elon said. 鈥淏ut even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.鈥� If she hadn鈥檛 been by his side day and night, Elon said, she might not have appreciated this.

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn鈥檛 go well. The facility was on lockdown most of the time and staff members weren鈥檛 especially attentive. Concerned about her mother鈥檚 well-being, Elon took her out of the facility and brought her to her apartment in late December.

For two months, she tended to her husband鈥檚 and mother鈥檚 needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers鈥� help, Elon began administering morphine to ease his pain and agitation.

鈥淚 thought, 鈥極h, my God, is this what we ask families to deal with?鈥欌�� she said. Though she had been a hospice medical director, 鈥渢hat didn鈥檛 prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.鈥�

Elon鈥檚 mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who鈥檇 died in May; and the loss of her independence.

That, too, was a revelation made possible by being with her every day. 鈥淭he dogma with people with dementia is you just stop talking about death because they can鈥檛 process it,鈥� Elon said. 鈥淏ut I think that if you repeat what鈥檚 happened over and over and you put it in context and you give them time, they can grieve and start to recover.鈥�

鈥淢om is doing so much better with Rebecca,鈥� said Deborah Bliss, 69, Elon鈥檚 older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. 鈥淚 think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.鈥�

And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.

鈥淢om will look out at the lake and say, 鈥極h, my goodness, these colors are so beautiful,鈥欌�� Elon said. 鈥淲hen I cook, she鈥檒l tell me, 鈥業t鈥檚 so nice to have a meal with you.鈥� When she goes to bed at night, she鈥檒l say, 鈥極h, this bed feels so wonderful.鈥� She鈥檚 happy on a moment-to-moment basis. And I鈥檓 very thankful she鈥檚 with me.鈥�

We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care, and advice you need in dealing with the health care system. Visit聽聽to submit your requests or tips.