Ask the Doctor: Blessed are the Caregivers

Last Updated: 24 Mar 2021

Caregivers are supported and empowered by information: about the illness, about the individual who has the illness, and about available resources that can help.

Among the Seven Corporal Works of Mercy is visiting and tending the sick. We look after each other, providing comfort, concern, and care in times of need. Loving and caring for someone with bipolar disorder can be tough at times. The quest for smooth sailing is ongoing, and often a storm can hit out of nowhere … But know that the boat is stocked with life jackets!

What is “sickness behavior”?

“Sickness behavior” refers to behavioral patterns that are attributable to the underlying illness. For example, the flu and other systemic infections cause recognizable behaviors of lethargy. Episodes of bipolar disorder can generate behaviors that are distressing and often embarrassing to the person and to those around them.

Sickness behavior is related to the “sick role,” a complex, socially approved status that relieves the ill person of their daily duties. It provides for time off work and limited expectations for daily obligations. The challenge is how to negotiate these behaviors and roles when someone has an illness that is ever changing, with some days that are better than others.

Not every “bad” day forebodes an emergency. But patterns do evolve, and an understanding of these patterns can be helpful for planning purposes.

As a caregiver, how can I maintain focus and avoid burnout?

The management of bipolar disorder is a collaboration that involves the individual with the illness, the family caregivers, and health-care providers. Each has a major role to fulfill. Understanding and acceptance of the respective roles are important, and this includes the knowledge that one’s functional role may vary within relatively short periods of time. This can be challenging, particularly when one spouse is the primary caregiver for the other.

Caregivers are supported and empowered by information: about the illness, about the individual who has the illness, and about available resources that can help. It is important to stay in close contact with your loved one’s health-care team; providers have advice, suggestions, and resources they are happy to share with caregivers. American psychologist and international authority on bipolar disorder Kay Redfield Jamison’s best-selling classic An Unquiet Mind: A Memoir of Moods and Madness, for example, is a must-read for anyone wanting to learn more about bipolar.

Burnout, an increasingly recognized complication of caregivers for any chronic health condition, is a personal sense of exhaustion and feeling overwhelmed to the point of worrying that one cannot meet demands, resulting in loss of interest and energy in the role. It is important for caregivers to themselves have a support system: a therapist or network of people who are familiar with the stressors and can help. Family therapy is often a great idea and can help prevent caregiver burnout. A good family therapist focuses on the family as a unit, with the aim of strengthening the family in the context of ongoing stressors.

How can I help? When should I step in?

Is an interaction pattern related to the illness and an underlying episode, or to a conflict in the context of the personal relationship, or something else? Getting to the bottom of things can be convoluted.

During a period of wellness, ask your loved one to describe the depression and manic patterns they experience, including how they recognize that “rough waters” may lie ahead. Ask how you can know, or what signs you can look for, if they need you to step in. Determine if you should have a medical power of attorney or other legal mechanism in place in case an emergency arises.

Providing care can be a rewarding experience. People with bipolar are often amazingly creative, energetic, and engaging, and the world is truly a better place because of them. But the diagnosis does come with unique challenges, which is why affected individuals need the considered and special attention of family caregivers and health-care providers.

Printed as “Ask the Doctor: Blessed are the Caregivers,” Winter 2020

About the author
Melvin G. McInnis, MD, FRCPsych, is Thomas B. and Nancy Upjohn Woodworth Professor of Bipolar Disorder and Depression and professor of psychiatry in the Department of Psychiatry, University of Michigan School of Medicine. He is the director of the Heinz C. Prechter Bipolar Research Program.
  1. I have a 31 year old son, diagnosed after a manic then depressed “cycle” 5 years ago. He was initially compliant on lithium after being diagnosed. Over a 3 year period he became less compliant, yet restarted meds 2-3 times. He had now been non compliant for 2 years, and refuses treatment as he is in complete denial of the diagnosis. He is extremely intelligent, always reinvents himself in business, and then approximately a year later the same cycle over again. He recently totaled a car, and was arrested for drunk driving. I spoke with his psychiatrist who will not see him as she “lost trust in him” when he lied about taking his medication. His father took him to be evaluated, and he was discharged as although they said he could use help, he refused. I have read about Anosognosia, also called “lack of insight,” yet I am desperate to help him, help himself. I’m scared to death that this is not even possible. Please offer some insight.

  2. I have an adult daughter who is still living at home but has been in and out of [hospital] for suicidal attempts and ideation for the last 3 months. She has been in a residential setting for the last month. She is expected to be discharged next week. I am totally afraid to have her home and am not sure I can or want to do this anymore. I’m usually the rock that holds everyone else together but feel as though I’ve crumbled to sand. Where can I find the strength to continue on and be the rock she still needs?

    1. Kim, I also have a young adult daughter living at home. I am a single mom trying to caregive and hold a fulltime job as she only works part time. It feels very lonely and scary being on edge all the time, when they are struggling. Attending a NAMI parents group has helped me, I hope you can find will give you community. Thinking of you.

    2. Hi, Kim. First, I’d like to say that you’ve clearly done an incredible job raising your daughter. For you to have insight, strength, and patience to navigate through this journey, and now, at this point question how you can continue having strength indicates that you’ve managed to get through this far successfully.
      IMO, I’d like to add that you aren’t alone in this journey. You’re on the other side doing something that most people that aren’t caregivers can’t understand. Even though our circumstances aren’t the same, I can and do understand your challenge.
      I am married to someone that has bipolar disorder. It’s a constant challenge. At times, it burns me out emotionally. I also question how to continue onward giving myself wholeheartedly without burning out. I’ve found that by reading about the disorder (to best understand it), and by identifying with other people that are also caregivers, and by visiting a therapist regularly all helps me get through most of my days. It also allows me to give my all to my partner.
      It’s “normal” to feel like you are at your end point at times. No one has super human emotional capabilities. Therefore, take actions in finding things that can help you continuously have the strength and patience to being the caregiver that your daughter needs. By trying different methods of support, you’ll identify with the ones that can help you.
      I wish you and your daughter the best.

  3. My husband is sleeping 15 + hours a day and the manic (irrational thinking and rage directed at me and the dogs) is happening more frequently. Can I speak with his Dr. I am unsure of the laws and ethics of that. I believe his meds are no longer working for him. He believes he is fine and he does or says nothing wrong. I love him but am reaching my breaking point. I tell myself it the illness not him. But the verbal and emotional abuse is becoming too much. Help!!

    1. Mary- I found great resources at NAMI- they have a family class for family members of people with mental illness and support groups. One of the things I learned was that HIPAA prevents doctors from disclosing patient info to families BUT that doesn’t work the other way around! You can write his doctor a letter describing what you’re observing to help him be treated more effectively.

  4. Are there any similar bipolar research programs in the NYC area?

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