They had driven an hour to consult a geriatrician, a doctor who focuses on the care of medically complex older adults.
An internist getting specialized geriatrics training, I knew there would be no straightforward cases when I chose this field. My new patient was one of 5.4 million Americans living with Alzheimer’s disease. Another person develops the disease every 68 seconds. By 2050, there is expected to be one new case every 33 seconds.
My typical patient has at least three chronic conditions, such as Alzheimer’s, heart failure and diabetes, plus numerous geriatric syndromes: falls, incontinence, depression and pain, to name a few. These patients come clutching lengthy medication lists or shopping bags filled with pill bottles. The drugs they take can interact badly, and they carry a heightened risk of dangerous side effects for older patients because of physiologic changes that come with aging, such as reduced kidney function. The medications are prescribed by a legion of doctors who often fail to communicate with each other.
Was it possible that Alzheimer’s wasn’t the reason for her mother’s decline, the daughter asked. Was it caused perhaps by something else, something treatable with a pill that could halt the destruction of her mother’s mind? “We just want to make sure there isn’t anything we’ve overlooked,” she said, “anything we could be doing to help her.” Her voice faltered as she held her mother’s hand.
On the molecular level, our thoughts, emotions, memories and personality originate in chemical bursts, released by one neuron and picked up by another, like flares illuminating a night sky. But in Alzheimer’s, the brain is instead littered with tangled clumps of protein, with diseased and dying cells that don’t function normally. The flares are sparse, the mind dark and empty.
For caregivers it’s a constant struggle. One woman who came to see me was at a loss when her husband began urinating on the carpet and screaming at his own reflection in the mirror. Another patient’s son retired from his job and put his mother’s hospital bed in the middle of his small apartment, where he cared for her day and night.
By and large, Medicare does not pay for the kinds of services that enable an older adult with severe dementia to remain living at home. Yet most people with dementia live at home rather than in nursing facilities, and they are cared for by family members. The 15 million Americans who provide this care report high levels of emotional stress, financial hardship, strained family relations and poor personal health as a result. They are on duty 24 hours a day, seven days a week.
My new patient’s children, who each had full-time jobs, rotated their schedules so they could be with their mother, spoon-feeding her because she no longer knew how to use utensils, changing her adult diapers and sponge-bathing her when she forgot how to climb into the tub.
“She always cared for us,” the daughter said, tenderly smoothing her mother’s short, gray hair.
Sometimes it took three hours to get her dressed, and the reason became apparent as I tried to examine her in the wheelchair. As I slid the cold stethoscope onto her paper-thin skin, she grew frightened, squeezing her eyes shut and whimpering unintelligibly. Her daughter caressed her hands and whispered in her ear, their heads bent close. The older woman’s body unclenched a little.
The daughter was worried that her mother was losing weight and didn’t seem interested in eating, a symptom that heralds the final stage of dementia and is one of the hardest for families to bear. She and her siblings still took their mother for rides when they could coax her into the car, and they fed her milkshakes through a straw. They played a lot of music and danced around her chair. She sang a fragment of a song from their youth, her voice incongruously soft and sweet beneath the fluorescent lights of the examining room.
At the end of the visit, the supervising doctor came in so I could tell him about the new patient. He sat down next to her. Sensing his presence, she uttered something none of us could make out. She reached out the way the blind do, groping along the arm of her wheelchair and then along the sleeve of his white coat until she found his hand. She grasped it tightly in her own wrinkled hand.
Her daughter’s eyes welled. “You didn’t pull your hand away,” she said to him, her voice betraying relief and astonishment. Had the past seven years of her mother’s illness really taught her that even doctors recoil from the touch of a demented old woman?
A doctor usually spends the majority of the first office visit learning about a new patient’s medical, social and family history. But I will take away something else from that day: Doctoring is what you do when there is no cure. It’s what you know before you ever go to medical school, before you memorize the mechanisms of disease, probe the body’s depths, trace the paths of its arteries, veins and nerves. It’s about the importance of human contact, of saying to a caregiver at the end of her rope, “You’re not alone,” of replacing desperation with hope, even if just for a moment.
Green practices medicine at Johns Hopkins and writes about health issues.