November 04, 2019

By Katherine Ponte and Izzy Goncalves

Over 15 years, my spouse and I struggled with her severe bipolar I disorder. We went through weeks-long psychiatric hospitalizations, disrupted relationships and stalled personal and professional goals. Eventually, I took grudging ownership of her treatment. We resented each other, and we didn’t work together. 
I now know that the most effective treatment requires the person with the mental illness, their doctors and their supporters to work together. Frankly, through much of my spouse’s illness, I thought I knew better, and her doctor at the time reinforced it. Her doctor and I communicated directly and largely controlled her treatment. She became less secure in her treatment as her doctor and I became a team. 
As she started to find strength and hope from peer support, she wanted to take more control. So, she took a stand. She changed doctors and forced me to adjust my role in her treatment. I was furious. I saw that she was at high risk of another manic episode as she tried to make this change. However, things actually worked out. 
We entered a recovery phase that I didn’t know was possible. It wasn’t the smoothest transition, but we became partners in her treatment. I discovered that things could be better, that we could both live fuller lives. That we could have more control over the condition’s uncertainties. 
With this new mindset, we both decided to get organized about her treatment and recovery. We did this by using a collaborative care plan (CCP). Using the CCP, a family team works together to develop treatment goals, responsibilities and action plans to facilitate recovery. 
As we reflect on our experience, we recognize that reaching recovery would have been easier if we had been working more closely together all along. A CCP could have helped open up the communication and cooperation between us earlier. It would have helped us address practical issues and challenges created by my spouse’s illness and, in turn, avoid the stress and fear that it caused.

Treatment Team Guiding Principles 

The three parties in collaborative care are the person with the condition (the “individual”), their family or other loved ones, and the clinician(s). The individual is often the most reluctant to participate in the plan, reinforcing the need for particular focus on their interests and perspective. The CCP seeks to maximize the individual’s engagement with the collaborative care process. Based on our experience, the guiding principles of the CCP are:

  • Individuals, family members and clinicians are a team. 
  • Care is individual-driven while the family and clinician play critical supporting roles.
  • Treatment should be recovery- and wellness-oriented and should emphasize the individual’s strengths.
  • Evidence-based and emerging best practices should guide treatment decisions. 
  • Clinicians should provide individuals and family members ongoing guidance and skills training, especially crisis management, enabling them to better manage the illness.
  • The treatment team should use a structured, but flexible, problem-solving approach to address issues and break them down into small, manageable steps.
  • ​The team should acknowledge and address the possibility of impaired capacity beforean emergency, including the potential need for involuntary treatment. 

Strategies for Effective Communication

Communication across the treatment team is key to developing and implementing a CCP. Individuals, families and clinicians must have mutual respect for each other’s experiences, preferences and goals. Each party should feel that their feelings and opinions matter. Such a setting allows for open discussion and problem-solving. 
With that in mind, it’s important to be very deliberate and attentive to communication. 
Listen to Each Other 
There is no communication without listening. Here are a few strategies to help better communication through listening: 

Write Thoughts Down Before Saying Them
An effective strategy is for each participant to write down their views as specific questions are addressed. This allows for sharing and comparing everyone’s views while also providing time to think about how to word statements in a respectful and non-triggering way. 
Avoid Judgment 
An individual may construe judgmental statements as authoritative and controlling, which will hinder communication. Judgmental statements are often difficult to avoid, particularly in intimate family settings, and may come out spontaneously in conversation. It helps to be particularly aware of the potential impact of statements to loved ones with mental illness. 
Approaching potentially concerning behaviors with empathy and understanding may help address the behavior objectively without being judgmental. For example, instead of pressing an adult child to find a job, the parent might offer to help with the job search. 

Preparing for the Uncertainties of Mental Illness

Recovery is not synonymous with “cured.” People in recovery must work to remain in recovery and be prepared to address future periods of instability. Key components of the plan will include responsibilities for addressing triggers and early warning signs, mental health crises and even incapacitation (loss of function).  
For example, with my years of experience supporting and caring for my spouse, I have become highly attuned to early warning signs of a potential manic episode. These include her having poor sleep or being preoccupied with religion. As a part of developing our CCP, my spouse had to recognize my particular ability to identify these situations. My spouse had to agree to respect and validate my observations. In such cases, I have her approval to contact her doctor with my concerns as long as I tell her about my communication.
Another key component is conflict resolution. Many families grapple with when to hold their loved one accountable for troubling actions. Perhaps those actions were beyond their control, driven by their mental illness. Again, taking a deliberate and comprehensive approach is helpful. The individual and family member can each draw up a list of examples for discussion and place things into categories: accountable or beyond control. 
The discussion will allow each party to point out items they think are missing or incorrectly categorized from the other’s list. This list will also provide a basis for discussing and agreeing to a contingency plan for specific behaviors. This advanced planning will help take the uncertainty out of potential crisis situations. It also allows the individual to feel like they continue to have control.
Mental illness can seem impossible. But the fact is that communication and planning can allow us to problem-solve and prepare for the challenges that mental illness presents. A CCP can help organize our support team, improve communication and develop the strategies that make recovery from mental illness very possible. 
Katherine Ponte is happily living in recovery from severe bipolar I disorder. She’s the Founder of ForLikeMinds’ mental illness peer support community, BipolarThriving: Recovery Coaching and Psych Ward Greeting Cards. Katherine is also a faculty member of the Yale University Program for Recovery and Community Health and has authored ForLikeMinds: Mental Illness Recovery Insights. She is on the NAMI-NYC Board.

Izzy works in finance and has been the primary caregiver of his spouse who lives with severe bipolar I disorder. He has been instrumental in helping her develop a number of mental illness recovery initiatives, including: ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, Certified Peer Specialists Mental Illness Recovery Coaching that seeks to connect families with Certified Peer Specialists, the Psych Ward Greeting Cards program which distributes donated greeting cards to patients in psychiatric units, and Mental Illness Greeting Cards, a line of greeting cards to help families communicate with loved ones living with mental illness.

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