Help! My Husband Was Recently Diagnosed with Bipolar Disorder

Q. I was 25 years old when I met my now husband, Elliot. We became best friends and two years later, then we got married and had a baby. Fifteen years and three children later, I began to notice lots of changes in his personality and mood. He agreed to see a psychiatrist, got a second opinion from a neurologist, and ultimately his diagnosis was Bipolar II. Our marriage was thrown for a ride, with a lot of sleepless nights, thoughts of divorce, and lessons learned about trying to keep loving someone with this kind of mental illness.

Elliott’s diagnosis threw a real wrench into our lives and our planning, but I love him and want to care for him and work it out. I know you mentioned once that you have a family member who was in a similar situation. Do you have any suggestions for us, and how we can plan for the future?

A. Twenty million American families have at least one family member with special needs, including my own family.

Bipolar Disorder, also known as manic depressive illness, is a mental illness characterized by mood swings between the two psychological pulls of depression and euphoria. Bipolar II is a milder form of the disorder that is characterized by longer low periods and less dramatic manic periods.

A recent report showed about 6 million people (2.4% of people worldwide) have had a diagnosis of Bipolar Disorder at some point in their lifetime and that the U.S. has the highest lifetime rate, at 4.4%. According to Dr. Igor Galynker, director of the Family Center for Bipolar Disorder at Beth Israel Medical Center, there’s hope for most who have been diagnosed with Bipolar Disorder. “It is not curable, but it is treatable with medications and psychotherapy,” said Galynker. In other words, people with Bipolar illness, such as one of my close family members, can have productive lives like anybody else once they’re in treatment and compliant with treatment.

Caring for a Loved One with Mental Illness

Currently, as many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. In fact, according to AARP, there are about as many family caregivers of adults with mental illness as there are family caregivers of adults with dementia.

AARP reports that these mental health caregivers don’t often share their stories, because in some circles mental illness still carries a negative stigma and family members want to protect their loved ones from stereotypes and potential discrimination. Half of these caregivers say it is difficult to talk about their family member’s illness with others and that they feel alone.

This dynamic is confirmed in new research conducted by National Alliance for Caregiving (NAC) in partnership with Mental Health America and the National Alliance on Mental Illness (NAMI). Since not many real life accounts are available, the findings offer a look into what those who care for a loved one with mental health issues can expect based on participants’ responses:

• Mental health caregivers spend an average of 32 hours a week providing support, compared to 24 hours that the average caregiver spends. That is a whole eight-hour workday more.
• The duration of their caregiving is more than twice as long (nine years compared to four).
• Mental health caregivers help with medications, shop, make meals, arrange transportation, manage paperwork, search for services, make appointments — and more.
• Half say that the care recipient is completely or significantly dependent on them for financial support. It is no wonder that they report higher levels of financial strain than non-mental health caregivers.
• 3 out of 4 report high levels of stress.
• It is often difficult to find even basic care from a clinician with mental health expertise, or at least one with a basic understanding.
• The majority of people receiving care (58%) are between the ages of 18-39 and it is often a parent taking on care of the adult child (45%).
• The main conditions requiring care are bipolar disorder (25%), schizophrenia (25%), depression (22%), and anxiety (11%).
• The majority of caregivers (55%) reported that they were included less than they felt they should have been in care conversations with their loved one’s providers.
• Caregivers indicated that the most helpful policies or programs would be mental health service coverage parity (31%), care navigation (30%), and caregiver education (15%).
• About half of mental health caregivers reported that their loved one was sent home “too early or too quickly” from the emergency room, hospital, or other facility after a mental health crisis situation (49%).
• Nearly half (48%) of caregivers said it was difficult to talk with others about their loved one’s mental or emotional health issues.
• Four in 10 caregivers struggled to find an accurate diagnosis for their loved one.
• Families whose loved one had found an accurate diagnosis reported that it took 11.8 years, on average, to get there.
• Treatment is also an issue. A majority of caregivers found that it was difficult to find the right drug and dose, and fewer than four in ten caregivers (37%) reported that their loved one’s medication was effective in providing the help they need.
• Caregivers noted several barriers to accessing health care services and long-term services and supports, including day programs, peer support, case managers, in-patient treatment centers, and low availability of services in rural areas.

Resources for Caregivers of Loved Ones with Mental Illnesses

Family caregivers for adults with mental illness face remarkable challenges providing appropriate support for their loved ones. Family members often feel responsible, or may be held responsible by legal and social service systems. The burden of care can be substantial, and often lasts a lifetime for committed family members, including parents of adults with mental illness, spouses, partners, siblings and, with later onset disorders, children. Here are some resources:

• A summary of interventions available to assist caregivers for adults with mental illness and other family members has been developed by the Family Institute for Education, Practice and Research
• Education, training, and support services are available through the NAMI.
• A website for children in a household with a mentally ill member from the Mental Health Association of Southeastern Pennsylvania.
• The University of Illinois at Chicago offers the Journey of (JOH) Family Education Course.
• Caregivers and Mental Illness: Living with Schizophrenia (World Federation for Mental Health, 2014) considers caring for those with severe mental illness across the lifespan, including a section on caregivers of older adults.

Special Needs Planning

A Special Needs Trust or a variant called a Sole Discretion Trust is often an essential tool to protect a mentally ill individual’s financial future. This type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the mentally ill person’s name while still allowing those assets to be used to benefit the mentally ill person. Read more here.

When it comes to special needs planning and guardianship, you want to ensure that your family member with mentally illness will remain financially secure even when you are no longer there to provide support. A Special Needs Trust is one type of vehicle that provides funds with which a mentally ill person can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses. But many people with mental illnesses such as Bipolar Disorder are never officially declared to be “disabled,” and that’s where other types of trusts such as the Sole Discretion Trust is often more appropriate for this type of special needs planning. We invite you to make an appointment for an initial consultation to learn more about special needs planning:

Fairfax Special Needs Planning: 703-691-1888
Fredericksburg Special Needs Planning: 540-479-1435
Rockville Special Needs Planning: 301-519-8041
DC Special Needs Planning: 202-587-2797