Advice for Mental Illness Caregivers

NOV. 10, 2021

By Katherine Ponte and Izzy Goncalves

husband and wife hugging

I have serious mental illness. As a result, mental illness has become a part of my partner and caregiver Izzy’s life as well. He and I have both learned a lot in our challenging 18-year journey to recovery. We’d like to share several lessons that have helped us to navigate recovery.

 

Meet Your Loved One Where They Are

Helping a loved one with mental illness often begins by identifying where they are in the five stages of change and advice for what you can do accordingly:

  1. Precontemplation (not interested in help): Demonstrate empathy and avoid judgment.
  2. Contemplation (recognizes problem but isn’t ready to change): Recognize that change is hard and consider pros and cons of treatment.
  3. Preparation (states commitment to change): Try to help your loved one define goals. Goals should be specific, measurable, achievable, reasonable and timely.
  4. Behavior change (starts to change/become actively involved in treatment): Reinforce your loved one’s positive behavior.
  5. Maintenance (sustaining change): Offer your continuing support.

It’s important to listen for “change talk” and act on it by providing support, comfort and encouragement at each stage. Patience is also required (although loved one should feel empowered to use their best judgment in times of an emergency). Pressuring someone to move forward in their journey may cause them to resist, which may delay treatment.

 

Listen in Order to Communicate

Starting the conversation with your loved one can be critical to helping them get the help they need. The caregiver may need to take the first step to start the discussion, and the best way to do so is to demonstrate genuine interest in your loved one’s concerns.

Don’t tell them how you can help — ask if you can help and how. Respect their desire not to talk about the situation. “I need to talk to you” is rarely a good way to start a conversation. When they don’t want to talk, the better approach is to keep gently reminding them that you are there for them if they want to speak.

Highly effective tools for improving communication include:

  • Motivational interviewing: This technique seeks to tap into one’s own personal motivation for change, which may include achieving specific life goals.
    • OARS: This method provides a framework for practicing motivational interviewing. This acronym stands for opened-ended questions, affirmation, reflection and summarizing.
  • Active listening: This form of engaging involves listening to what a person says and then reflecting what was said in a way that demonstrates understanding. It also serves as a mirror, nudging a person to see and confront their thoughts, ideas and impressions.
 

Show Compassion for Past Mistakes

It is important to always convey empathy and compassion when speaking with your loved one. This includes talking about the past. Many people with mental illness are aware of some of the inappropriate things they did when ill. In fact, they may often obsess over their regrets and mistakes.

It may be best not to raise these incidents if you see that your loved one is actively trying to improve their behavior. Mentioning them may make it harder to move forward in their recovery — they can’t change the past. It can be helpful to instead focus on the present moment and future goals.

 

Encourage Self-Empowerment

Mental illness may make a person feel as if they have no say or control over their life. Often, they may allow their caregiver to take control of their treatment because of their difficulty accepting the diagnosis or out of ambivalence. However, self-empowerment is key to recovery.

It’s important to ask open-ended questions to explore what your loved one wants and to help them take ownership of their mental illness and treatment. When a caregiver respects and trusts their loved one’s decisions, this can feel liberating and improve the relationship.

Treatment approaches can also be self-empowering. A shared decision-making approach can be very effective. With this approach, a patient makes clear to their doctor what their priorities are, and together they agree on a treatment plan. An approach designed to help patients pursue life goals, rather than merely addressing symptoms and side effects, can be extremely motivating.

 

Practice Positive Reinforcement

Caregivers should strive to recognize and praise all accomplishments. When your loved one it severely depressed, getting up from bed, taking a shower or eating can be extremely difficult for them. Doing any of these is an accomplishment. Don’t mistake a depressed person’s inactivity as laziness.

Recovery is often a series of small accomplishments. Small accomplishments can build into big strides, such as getting a job or getting your own home. Encourage your loved one to dream and pursue goals and help them along the way with practical and realistic advice.

 

Avoid Helicoptering

Helicoptering is a form of a caregiver’s over-involvement in their loved one’s care. Plainly stated, a person feels under constant surveillance as a caregiver “hovers” around them, constantly on high alert for an episode or other adverse event. To a person with mental illness, this over-involvement and anticipation of the worst-case scenario can feel suffocating, disempowering, discouraging and even enraging. Despite a caregiver’s good intentions, helicoptering can lead a person to withdraw and isolate.

A common instance of helicoptering is when a caregiver repeatedly insists on contacting their loved one’s psychiatrist, leading the patient to feel like they’re being “snitched on.” This fear may be based on the control a psychiatrist has on their treatment, such as the ability to make a medication change. A person may also feel that a psychiatrist will give deference to the caregiver rather than the “sick” patient. All of this may lead to a significant and harmful erosion of trust between the person and their caregiver — as well as the patient and their provider.

Many caregivers do not realize the serious consequences of this sort of helicoptering. For example, their loved one with mental illness can revoke or put limits on the permission their psychiatrist has to speak with caregivers in the future.

 

Access Peer Insights

Peers can support, inform and inspire each other’s recovery journey. In fact, people with mental illness are often more comfortable speaking to peers than clinicians. Peers have insights that clinicians without lived experience cannot offer; moreover, peers in recovery can offer invaluable hope to both supports and people living with mental illness.

Understanding is critical to a good relationship between a person with mental illness and their caregiver. While mental illness is very often a family effort, it cannot be overemphasized that a person’s responsibility, ownership and self-empowerment will enhance outcomes. When a person is provided more control over their treatment process, they are more likely to reach recovery. Ultimately, that’s what caregivers and their loved ones should be striving for, together.

 

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 Program for Recovery and Community Health at Yale University and has authored ForLikeMinds: Mental Illness Recovery Insights. She is on the NAMI-NYC Board.

Izzy Goncalves works in finance and has been the primary caregiver of his spouse, Katherine. He has been instrumental in helping her develop a number of mental illness recovery initiatives.

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