In the first month of her husband Hal’s mysterious illness, Corinne asked his doctors several times why he was walking and talking more slowly. All they could tell her was that his condition was not likely Alzheimer’s dementia, Parkinson’s disease, multiple sclerosis or stroke. Once more test results came back, they reassured her, he would be diagnosed and then properly treated. Not knowing what they were fighting against made Corinne anxious, but she tried to remain hopeful.
Six months later, however, when they still had no answers and Hal was becoming forgetful, too, Corinne began doing her own research about what might be going on. When Hal was asleep, she spent hours reading online articles on any syndrome that seemed even remotely like his. Unfortunately, each disease she read about sounded more dire than the last. Corinne started to panic as potential worst-case scenarios of her husband’s disability and death ran through her head.
A medical diagnosis is a kind of map of previously unknown territory. It identifies features of the landscape, called symptoms, and major roads, known as treatments. It enables doctors, patients and family caregivers to plot a course, if possible, toward safer environs. Without this map, patients and their caregivers, such as Hal and Corinne, have little idea of how to navigate their future. They feel increasingly lost and afraid.
But even modern maps may have blank or sketchily drawn areas indicating gaps in medical knowledge. For example, more than a century of research on dementia has not resulted in a full picture of the causes and exact course of any one individual’s encounter with the disease. Many caregivers are still left uncertain about where they are headed or how best to help their relative along the way.
No one likes living with uncertainty, especially concerning people for whom they are caring. How can family caregivers live with at least some medical uncertainty without greater anxiety and anguish? Here are some ideas:
Ask about different medical information
A care receiver’s diagnosis provides a great deal of helpful information, but not knowing it does not mean family caregivers need be clueless about what to expect. As Northwestern University family psychiatrist John Rolland has pointed out in his book Helping Couples and Families Navigate Illness and Disability, doctors often can distinguish among three possible phases — initial crisis phase, chronic and terminal — of many illnesses.