{"id":6650,"date":"2021-07-27T07:16:13","date_gmt":"2021-07-27T11:16:13","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=6650"},"modified":"2021-07-27T07:16:13","modified_gmt":"2021-07-27T11:16:13","slug":"what-happens-when-a-geriatrician-becomes-a-caregiver","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2021\/07\/what-happens-when-a-geriatrician-becomes-a-caregiver\/","title":{"rendered":"What Happens When a Geriatrician Becomes a Caregiver?"},"content":{"rendered":"

Journalist Judith Graham tells the extraordinary story of a geriatrician who had to become a caregiver twice over\u2014for her husband and then her mother\u2014in the midst of the pandemic. Graham is a contributing columnist for <\/span><\/i>Kaiser Health News<\/span><\/a> (KHN), and her article was posted on the KHN website on May 18, 2021.<\/span><\/i> It also ran on the <\/span><\/i>Washington Post<\/span><\/a>.<\/span><\/i>  <\/span><\/i><\/p>\n

The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.<\/span><\/p>\n

This has been a year like none other for Rebecca Elon, MD, who has dedicated her professional life to helping older adults.<\/span><\/p>\n

It\u2019s taught her what families go through when caring for someone with serious illness as nothing has before. \u201cReading about caregiving of this kind was one thing. Experiencing it was entirely different,\u201d she told me.<\/span><\/p>\n

Were it not for the challenges she\u2019s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally\u2014something she understood only abstractly previously as a geriatrician.<\/span><\/p>\n

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.<\/span><\/p>\n

All these experiences have been \u201ca gift, in a way: they\u2019ve truly changed me,\u201d 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.<\/span><\/p>\n

Elon\u2019s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long term care. \u201cI don\u2019t 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\u2014and do so with love and respect,\u201d she told me.<\/span><\/p>\n

[Elon is] an extraordinary advocate for elders and families.<\/strong><\/p>\n

\u2014Kris Kuhn, MD <\/strong><\/p><\/blockquote>\n

Elon has been acutely aware of prejudice against older adults\u2014and determined to overcome it\u2014since she first expressed interest in geriatrics in the late 1970s. \u201cWhy in the world would you want to do that?\u201d she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. \u201cWhat can you possibly do for those [old] people?\u201d<\/span><\/p>\n

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 United States. \u201cShe\u2019s an extraordinary advocate for elders and families,\u201d said Kris Kuhn, MD, a retired geriatrician and longtime friend.<\/span><\/p>\n

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.<\/span><\/p>\n

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, William Henry Adler III, MD, 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.<\/span><\/p>\n

Eventually, however, Adler\u2019s 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, MD, house. \u201cHe became a prisoner in our upstairs bedroom,\u201d Elon said.<\/span><\/p>\n

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.<\/span><\/p>\n

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\u2019t imaginable, so Elon kept him at home, remaining responsible for his care.<\/span><\/p>\n

It was time to leave the East Coast behind and be closer to family.<\/strong><\/p><\/blockquote>\n

\u201cI lost 20 pounds in four months,\u201d she told me. \u201cIt was incredibly demanding work, caring for him.\u201d<\/span><\/p>\n

Meanwhile, another crisis was brewing. In Kankakee, IL, Elon\u2019s 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.<\/span><\/p>\n

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\u2019d spent her childhood. \u201cIt was time to leave the East Coast behind and be closer to family,\u201d she said.<\/span><\/p>\n

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\u2019s isolation.<\/span><\/p>\n

\u201cI finally had help,\u201d she told me. \u201cIt was like night and day.\u201d<\/span><\/p>\n

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn\u2019t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.<\/span><\/p>\n

\u201cIn medicine, we often look at people who are profoundly impaired and ask, \u2018What kind of quality of life is that?\u2019\u201d Elon said. \u201cBut even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.\u201d If she hadn\u2019t been by his side day and night, Elon said, she might not have appreciated this.<\/span><\/p>\n

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn\u2019t go well. The facility was on lockdown most of the time and staff members weren\u2019t especially attentive. Concerned about her mother\u2019s well-being, Elon took her out of the facility and brought her to her apartment in late December.<\/span><\/p>\n

I thought, ‘Oh, my God, is this what we ask families to deal with?’<\/strong><\/p>\n

\u2013Rebecca Elon, MD<\/strong><\/p><\/blockquote>\n

For two months, she tended to her husband\u2019s and mother\u2019s 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\u2019 help, Elon began administering morphine to ease his pain and agitation.<\/span><\/p>\n

\u201cI thought, \u2018Oh, my God, is this what we ask families to deal with?\u2019\u201d she said. Though she had been a hospice medical director, \u201cthat didn\u2019t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.\u201d<\/span><\/p>\n

Elon\u2019s 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\u2019d died in May; and the loss of her independence.<\/span><\/p>\n

That, too, was a revelation made possible by being with her every day. \u201cThe dogma with people with dementia is you just stop talking about death because they can\u2019t process it,\u201d Elon said. \u201cBut I think that if you repeat what\u2019s happened over and over and you put it in context and you give them time, they can grieve and start to recover.\u201d<\/span><\/p>\n

\u201cMom is doing so much better with Rebecca,\u201d said Deborah Bliss, 69, Elon\u2019s older sister, who lives in Plano, TX, and who believes there are benefits for her sister as well. \u201cI think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.\u201d<\/span><\/p>\n

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.<\/span><\/p>\n

\u201cMom will look out at the lake and say, \u2018Oh, my goodness, these colors are so beautiful,\u2019\u201d Elon said. \u201cWhen I cook, she\u2019ll tell me, \u2018It\u2019s so nice to have a meal with you.\u2019 When she goes to bed at night, she\u2019ll say, \u2018Oh, this bed feels so wonderful.\u2019 She\u2019s happy on a moment-to-moment basis. And I\u2019m very thankful she\u2019s with me.\u201d<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.<\/span><\/p>\n

Read more What Happens When a Geriatrician Becomes a Caregiver?<\/span> ›<\/span><\/a><\/div>\n

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