3 Caregiving Strategies for Dealing With Medical Uncertainty

Ease the anguish with these tactics

Barry J. Jacobs,

AARP

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En español

Published September 06, 2023

a man scratches his head at the entrance to a maze.

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In the first month of her husband’s mysterious illness, Corinne asked his doctors several times why Hal 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.

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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.

The initial crisis phase is generally considered the first six months of a condition, when the chances of curing it are higher. The chronic phase is when the condition, such as diabetes or arthritis, is not likely curable but will need to be managed indefinitely. The terminal phase is when the disease, such as kidney failure, has reached its end stage and the care receiver will probably die soon.

Without clear direction, many care receivers and caregivers believe an illness is acute when it is likely chronic, or chronic when it likely has become terminal.

For instance, without a medical diagnosis, Hal and Corinne thought his condition was still in the acute or curable stage even a year after he started having symptoms. It was only when she stopped asking the doctors “What is Hal’s diagnosis?” and asked instead “Is his condition acute or chronic?” that Corinne learned his condition was likely chronic. She was then able to shift her energies from fixing him to helping him live as well as possible with the symptoms he had.

Find your best guide

Consulting with a guide familiar with the terrain may help caregivers live with medical uncertainty. It can be a trusted primary care provider with general knowledge of a medical area or a specialty provider, such as a neurologist or rheumatologist, with more specific, though imperfect, knowledge.

It can also be someone without a medical background at all. Some caregivers’ best guide is someone with the lived experience of having been through similarly uncertain caregiving who can commiserate and share what worked for them.

It can be a good friend or mental health professional who can provide emotional guidance. It can be a faith leader to help strengthen one’s resolve in the face of not knowing.

Seek acceptance, not understanding

Most of us try to be logical. We approach solving any problem by learning its cause, seeking the right remedy and then taking the prescribed actions to fix it.

But caregiving often requires that we suspend this logic. To adapt, we sometimes must set aside the question of why a care receiver is ill or disabled to accepting that its cause and remedy may forever remain unknown.

Like early American explorers forging ahead into the wilderness, we feel our way forward hill by hill without a good map but with the faith we will respond with thoughtfulness and concerted effort to any challenge we meet.

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Barry J. Jacobs, a clinical psychologist, family therapist and health care consultant, is coauthor of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers. Follow him on Twitter and Facebook.