Three of Donna Downing's four children have Charcot-Marie-Tooth disease (CMT), a progressive hereditary disorder that damages the nerves in the arms and legs. That means the Rockville Centre, NY, mother redraws the line between caregiving and parenting every day.

"If there's something they can't do at a particular time, like while recovering from surgery, I'll absolutely help them. But otherwise, for things like tying their shoes or walking to school, I encourage them to try it," she says. "It's always hard to see your child struggle, but I want them to be functioning, independent adults, and doing these things builds a sense of confidence that can help over the long term."

As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.

Still, says Barbara Resnick, PhD, a nurse practitioner specializing in geriatrics and a professor at the University of Maryland's School of Nursing, finding the right amount of support is important.

Supportive Care

The trick, says Dr. Resnick, is to optimize what patients can do instead of doing everything for them. People with Parkinson's disease, for example, often have difficulty with fine motor skills like buttoning a shirt. Caregivers might want to button the shirt for the person because they can do it more quickly.

"You really have to hold your hands behind your back and let the person do the buttoning if he or she can," Dr. Resnick says. "You have to be able to count to 10, or to 100, and think about your grocery list."

Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient's hands over your own as you perform an action.

"Don't make assumptions about what someone can't do and just take over," she says. "A lot of my job is reminding caregivers to allow patients to do things for themselves."

Patience Is Paramount

Since her diagnosis of Parkinson's disease 12 years ago, 58-year-old Caroline Robinson of Essexville, MI, moves more slowly and has more trouble putting her thoughts together. Her husband, Jack, who is also her primary caregiver, says he struggles to be patient with his wife and with himself.

"Sometimes, in my frustration, I'll try to finish her sentences for her, and that's not good," says Jack. "I really have to force myself to remember that she's not capable of forming sentences as quickly as I am. I've got to respect that it takes her longer to think and come back with a response."

Communication Is Key

Communication between caregiver and patient is essential, but also challenging. When Jack noticed his wife seemed to have difficulty driving, the pair decided together that she would stop.

"That conversation wasn't easy," he says. "She's strong-willed, and when partners are strong-willed, they don't give up things easily."

Knowing the person's priorities can make it easier to gauge how much to help, says Maisha Robinson, MD, MS, assistant professor of neurology at the Mayo Clinic in Jacksonville, FL. She suggests asking the person you're caring for what he wants to accomplish on any given day. For example, she says, if what's important is interacting with the grandchildren when they come home from school, you may want to help your husband get dressed so he can conserve his energy for his grandchildren.

Dr. Robinson had a patient, a man in his seventies with amyotrophic lateral sclerosis, who couldn't say no to his wife, his primary caregiver, when she suggested they walk around the block. As a result, he became increasingly exhausted as the day progressed. When Dr. Robinson asked him what was most important to him, he said interacting with his family at the dinner table. The doctor then talked to the couple and suggested making a walk an option, not a requirement.

"His wife was operating on the principle of 'use it or lose it,' but with his condition, exercise isn't going to keep the muscles from wasting away," Dr. Robinson says. "Everyone's situation is different. With some conditions, like a stroke, yes, you want patients up and moving around. But that's not true for all conditions."

Another woman caring for her husband, a man in his thirties with a brain tumor, told Dr. Robinson she felt isolated, as the couple no longer went out to dinner or to movies. She wanted to know if she should tell her husband that he needed to get up and not sulk around the house all day. As it turns out, her husband wasn't sulking: He was embarrassed by his appearance and didn't want to be stared at in their small town. Dr. Robinson encouraged them to find ways to do at home what they used to do in town, like watching movies on a streaming service or inviting small groups of friends over for dinner.

Making Adjustments

Lauren Jarman, 30, was diagnosed with myasthenia gravis, an autoimmune neuromuscular disorder that causes muscle weakness, before she married her husband, Dave, seven years ago. Since then, she's been hospitalized roughly 12 times, been hooked up to a ventilator six times, and, for a year, needed her husband to carry her up and down the stairs of their Mt. Pleasant, SC, home. "We learn so much from each crisis," says Dave.

He's learned to be attentive to his wife's physical cues—like a drooping eyelid or difficulty chewing—that could signal a flare-up. He's assumed responsibility for getting their 3-year-old daughter, Charleigh Grace, up and dressed in the morning. And he's learned not to ask constantly, "Are you okay?"

"She doesn't want to be reminded of her disease all the time," Dave says. "I have shifted the focus from what we can't do to what we can do. Lauren can't always go for a walk with me on the beach, but I can help her sit by the water. We can drive to a park or go see a movie, and, when she's doing really well, we'll go for a walk."

Celebrate Success

Dave Jarman is his wife's biggest supporter, and that's a crucial role in all caregiver-patient relationships. Acknowledging a patient's successes is an important part of a caregiver's work, says Dr. Resnick.

"Caregivers are cheerleaders. 'You're doing a great job. You walked to the bathroom yesterday. I know you can do it today,'" she says.

Downing agrees. She is always cheering on her sons Andrew, 15, and Matthew, 12, and her daughter Bridget, 14. (Lucy, Andrew's twin sister, does not have CMT.)

"This disease is not their fault, and I don't want them ever to feel bad about it, so we recognize every success. Keeping up in gym class can be very difficult, so if they do it, we acknowledge it," she says.

"It's important to show regular appreciation: 'I know this is hard for you, but I'm so proud of you.'"

Set Goals

When patients set goals and outline steps for reaching them, caregivers may have a clearer idea of how to help. For example, after Bridget Downing had spine surgery, she made a plan to get back on her feet in time for a family trip to London that was three months away. The family helped Bridget devise a physical therapy plan with that goal in mind. After months of hard work, Bridget was ready to walk by the time they left for England.

"We approached it like an athlete preparing for a marathon," says Donna. "We worked backwards from something fun—visiting England—and did our best to get there."

The trip was a success, says Donna. "We enjoyed our time together as a family. You might even have thought we were a happy, perfectly healthy family."