The job you never applied for: Caring for adult sibling with mental health issues

Therapists, psychiatrists and therapeutic consultants consider mental illness a “family illness,” not necessarily because of genetics (though there are genetic factors in some disorders), but because of how it profoundly affects the whole family.

When a young adult develops a mental illness, it’s usually the parents who become the primary caregivers. This can involve finding doctors, managing medications or seeking supportive housing and jobs, all in an effort to help their child live the life they deserve.

There comes a time, though, when parents are unable to continue in the caregiver role because of age or their own illnesses. In many cases, they turn to the brothers and sisters of the mentally ill child. In addition, some young adults with severe mental illness may reject a relationship with parents, preferring to ally themselves with a favorite sibling instead.

The question becomes: How does a sibling prepare to accept this responsibility, a job they never applied for and never thought they’d have to perform?

Here are some general guidelines and principles that may help if you find yourself in this situation.

1. Insist on open and honest communication with your parents.

Depending on the closeness of the relationship, a sibling may be among the first family members to detect a developing mental illness. You may note behavioral changes, dramatic shifts in emotions and changes in eating or sleeping patterns. It’s important to share these observations with parents, and ask parents to share information with you.

Secrecy and the misguided notion that parents are protecting their other children by not sharing information are the greatest barrier to effective communication. Parents are not protecting their other children by excluding them from the conversation. They are preventing siblings from knowing valuable information that may assist them when the responsibility for their loved one becomes theirs and perpetuating the stigma that still exists around mental illness.

An adolescent or young adult with mental illness may plead with their parents not to tell others. It’s tempting to respect the mentally ill sibling’s wishes and not share information, but it will end up being more difficult for everyone in time.

2. Ask to be informed of therapeutic interventions.

A sibling who may become responsible for a mentally ill sibling needs to know a lot of information: What are the diagnoses? Who are the doctors? Which medications are working, and which are not? Which interventions and treatments have been tried, and were they successful or did they worsen symptoms? This is important because you don’t want to waste time, effort and money on treatments or interventions that haven’t worked in the past.

If the individual with mental illness is capable, they should sign a HIPAA release giving you access to their doctors and medical records, or other more comprehensive documentation that allows you to make mental health decisions when the identified person cannot act in their own best interest. Failing that, there’s nothing stopping you from communicating with their clinicians.

The mentally ill individual is not an accurate reporter, and close family or friends may observe behaviors that the individual doesn’t share with their providers. The clinical professionals can only treat what they know.

3. Check your own emotions.

Having a mentally ill sibling is very difficult on the other children, who may feel neglected as parents focus on the child who requires the most attention. You may, for example, hear that your sibling has a diagnosis of bipolar disorder. Instead of thinking, “What’s the big deal? I get moody, too,” learn about the disorder, how serious it can be and how it’s treated.

The increase in your understanding of the illness may lead you to feel less neglected and more supportive of your sibling.

4. Become involved in preplanning.

Being responsible for a mentally ill adult is a lonely job, and parents and siblings shouldn’t try to go it alone. Aside from therapeutic interventions, many other factors have to be considered and planned for.

As an example, parents may want to look into available benefits such as Medicaid, Medicare, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). If appropriate, they can establish a Special Needs Trust to allow their child to have a source of income that is carefully monitored. A trust also sets the rules for control of the money, which can prevent rifts between siblings down the road.

It may be necessary to establish a guardianship or conservatorship. Each state has special rules and rights that go along with these identifications. If a family member can’t take on this role, there are professional guardians who can do the job.

5. Maintain a united front.

Familial support is different from friendship. You shouldn’t undermine a treatment plan by trying to be friends with your sibling with mental illness. In fact, siblings can often tell each other things that parents are uncomfortable with. In a 2023 report about siblings caring for mentally ill brothers or sisters, a young man named Jon said that while he supports his older brother, “That doesn’t mean I do everything to please him. If I don’t agree with him. I speak up to him and make my demands clear.”

Finally, it’s important to note that the sibling isn’t always the best caregiver for a mentally ill person. There may be a cousin, sister-in-law, uncle or friend better suited to be the support an adult with mental illness needs. Families work in many different ways, and the right person isn’t always the obvious one.

• Bonnie Lane, M.S., is principal consultant with Family Support Services in Northbrook, specializing in supporting families whose loved ones suffer from severe mental illness or substance addiction. Daily Herald readers can contact her at (847) 651-1554 or bonnielane@thefamilysupportservices.com.