For What It's Worth

Denial Doesn't Help

Anyone who has ever lost a loved one to Alzheimer’s or another neurodegenerative disease should recognize what’s happening among President Biden’s family and closest advisers and to the man himself.  You see the signs when he repeats himself, gets lost in the middle of relating a story, uses an inappropriate word or phrase, but you look for other explanations. He had a cold. He didn’t get a good night’s sleep. He was suffering from jet lag.  And when the person himself admits “I screwed up,” you think, right, everybody can have a bad day. He was fine yesterday. He’ll be fine tomorrow. 

I’ve seen the denial up close. My mother-in-law died of Alzheimer’s in 2013, but the signs—if you were willing to acknowledge them—were there almost two decades earlier.  Rhoda was always eccentric, a Bohemian modern dancer who studied with Martha Graham and looked like she was about to take the stage in “Appalachian Spring” any minute. So, when I invited her to accompany me to Geneva in the mid-1990s when I was the U.S. expert to the United Nations human rights sub-commission, I wasn’t terribly surprised that she joined a group of Tamil Tigers protesting outside the Palais des Nations.  But there were other mishaps on the trip as well. A museum guard had to rescue her from a bathroom stall when she couldn’t figure out how to unlock the door.  She missed her return on an excursion around Lake Geneva when she kept asking passersby, “où est le gâteau?” mistaking the French word for cake for the one for boat (bateau) and refusing to ask in English.  Rhoda’s adventures, as we liked to call them, made for amusing anecdotes at family gatherings. Until they didn’t.

Her children resisted a diagnosis even as the episodes grew worse.  My husband convinced her to be tested by a geriatric psychiatrist, but the report suggested only mild cognitive impairment, but also noted she probably had a below average IQ.  She was, in fact, very smart, or had been for most of her life.  I surmised that she had lost words and other skills from whatever was happening to her brain.  Her memory for things that had happened years ago seemed ok, but it was sometimes difficult to know because her habit of embellishing events made discerning what was real from invented almost impossible.  At her attorney’s suggestion, she gave my husband full power of attorney, which proved a godsend as the disease progressed. But still, some of her other children resisted seeing what was happening. 

One day when she was visiting us from her home in Colorado, she began complaining of pain in her torso. When I finally convinced her to let me examine her, I saw that her midsection was entirely black and blue, but she couldn’t explain what had happened. We took her to the emergency room, where an x-ray revealed broken ribs, but she had no idea when or how she’d been injured.  The bruises were fresh, so I surmised that she had fallen on a step on our back porch, perhaps the day before.  She was supposed to fly to Pittsburgh to visit her daughter the next day, so I called to warn her what to expect.  My sister-in-law dismissed my concerns out of hand.  “She was probably doing dance exercises and was too embarrassed to say she lost her balance,” she scoffed.  A few days after Rhoda arrived in Pittsburgh, her daughter called to tell me Rhoda had left the water running in the sink on the third floor, flooding the bathroom and collapsing the ceilings below.

Rhoda was able to live out her life in her home with round-the-clock care.  Up until about five years before her death, she continued to compose poetry, even publishing a handful of children’s poems, though her later poems had to be dictated because she could no longer use a computer.  It was only in her last year that she couldn’t carry on a conversation. And if you didn’t know her well, you might not guess her impairment, though her vocabulary shrank, and her phrases became more repetitive.  The downward slope was not steep, but it was inexorable.

We don’t know where President Biden is in his decline or how rapid it will progress.  But for his family and friends to pretend it isn’t happening is classic denial.  He needs extensive testing—not the Montreal Cognitive Assessment Donald Trump claims to have “aced”—but a thorough work up.  I’ve been part of the National Institute of Aging’s Baltimore Longitudinal Study for almost 30 years. As its name suggests, the BLS tracks a large sample of participants as they age and entails 2-3 days of biannual inpatient testing, including 2.5 hours of memory, vocabulary, problem-solving, and fine-motor-skills assessment, as well as PET scans, brain MRIs and CTs, blood work, and strength measurement. In recent years, NIA has added a gait study, which videos the participant walking with little ping-pong balls attached to various body-parts and includes asking the participant to perform mental tests at the same time to see if doing so affects gait.  I fear President Biden’s shuffling may be more than arthritic stiffness and could be a sign of some neurodegeneration.  His family should be insisting that his doctors use all the tools available to understand his condition.  To ignore what’s happening won’t make it go away.