In Practice: When an adult child is ill

Credit: DAN PAGE

My youngest turned 18 not long ago. He can now vote, join the military, purchase cigarettes and lottery tickets, be sued, and get a tattoo without my permission. (But if you’re asking me, honey...)

He can’t, however, buy a beer, rent a car, or gamble in Las Vegas.

This odd assortment of cans and can’ts reflects our societal ambivalence about whether an 18-year-old is really an adult. My son still needs support and guidance, we seem to be saying, but he’s not exactly a kid, either.

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When a young person is ill, the distinction between childhood and adulthood may seem particularly blurry. The Affordable Care Act allows people up to 26 years old to be covered under their parents’ insurance plans. Those in their 20s are less likely to be married or live on their own than young adults in previous generations, and their next of kin are often their parents, their permanent address Mom’s and Dad’s.

On the other hand, a person over 18 may, by law, make his or her own medical decisions and has no obligation to share any medical information with his or her parents, even when living under their roof, even when Mom and Dad are footing the medical bills.

For parents who have spent years keeping meticulous track of asthma inhalers, ADD meds, and orthodontist appointments, it may feel strange to lose control of a child’s medical care overnight.

When a patient asks if I’ll see her child who’s ready to “graduate” from the pediatrician, I feel both pleased and a bit apprehensive. Any primary care doctor will tell you that treating several members of the same family is one of the most gratifying aspects of the job. But helping parents adjust to a more hands-off relationship with their child’s health care isn’t always comfortable.

Take the patient who referred her diabetic, college-age daughter to me. I’d barely met the young woman when her mom started calling me, wanting to discuss her child’s diet, insulin dosing, and weight. But the daughter didn’t want me to share any medical information with her mother. So I spent many minutes on the phone listening and replying, noncommittally, “Uh huh. I understand your concern.”

When a young person struggles with mental illness or addiction, a parent faces a particularly difficult dilemma: How do you know when being supportive ends, and enabling self-destructive behavior begins?

“You’re caught in a no man’s land,” a patient of mine told me. She’d noticed signs of depression and anxiety in her son when he was about 17. By the time she urged him to seek professional help, he was old enough to refuse it. He moved home after college, and spent years too paralyzed by depression and anxiety to work or pursue graduate school. Yet he still refused therapy.

When her son turned 26, my patient did two things: First, she bought him health insurance, since he was no longer on his parents’ plan and would not buy it for himself. Second, she told him that if he didn’t use the insurance for mental health treatment, he could no longer live at home. This was tough. Even thinking of turning your child out, she told me, especially when he’s struggling, is “antithetical to being a mother.”

Another woman, whose son has a drug problem, echoed this sentiment. “As a mother, you’re supposed to take care of him, to save him,” she told me. Yet, when her son was 19, his addiction led him to steal, and she and her husband felt they had no choice but to evict him from their house. The young man was homeless for a time, which was anguishing for his parents. Still, years later, his mother told me that in retrospect she might have adopted a “tough love” strategy even earlier.

When young adults have conditions such as Down syndrome or autism, which may make it impossible for them ever to live independently, their parents face the frightening but likely prospect of predeceasing the child who is so dependent on them. More than one such parent has told me that, while they prepare as much as they can for this eventuality, the idea of leaving their child can be almost as nightmarish as the idea of losing their child.

It’s not only young adults, though, who may need their parents when they become ill.

I have a patient in her 70s who has a daughter in her 50s. The daughter never married, and though she’s always been close to her parents, for most of her adult life she worked and lived independently.

A few years ago, the daughter developed cancer and, though her parents were supportive, she made her own decisions about her treatment. This worked well until the daughter also became acutely mentally ill. She was unable to effectively manage her own care, but privacy laws prevented her parents from stepping in. Ultimately she consented for her mother to have direct access to her doctors.

Now, the daughter is ill again. She’s moved in with her parents and they accompany her to her frequent medical appointments. It would be a bruising schedule for any family, but it’s particularly so for an elderly couple. Older parents of ill children face the additional stress of dealing with their own failing health.

My patient in her 70s, who’s now helping her daughter get through cancer treatment again, is philosophical. “What else can I do?” she asks. “It’s sad. I know a lot of older people who are taking care of their kids. At our age we kind of thought it would be the other way around.”

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