Why focusing on caregiver self-care is a vital part of the treatment strategy

Editor’s note: This column includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I became caregivers, researchers, therapists, advocates, and occasionally amateur medical detectives. We were willing to do anything to help our daughter.

Unfortunately, “anything” often included neglecting ourselves.

During the most difficult periods of Rylae-Ann’s journey, Judy and I both experienced depression and burnout. We were exhausted, frightened, and overwhelmed. There were appointments to schedule, symptoms to monitor, treatments to research, and difficult decisions to make. Even when our bodies stopped moving, our minds kept racing.

I remember talking honestly with Judy, sharing with her that I thought I was going insane. It seemed like a constant barrage of stress. We had to fight the medical system, exhaustion, and sometimes each other.

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March 31, 2026 by Richard E. Poulin III

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The smallest disagreement could become a major argument. It was rarely about the forgotten bottle, the hospital bill, or whose turn it was to wake up. Those were merely the sparks. Beneath them were fear, grief, fatigue, and the enormous pressure of trying to keep our daughter safe.

At times, we treated rest as a luxury. We felt guilty for stepping away because Rylae-Ann couldn’t step away from her condition. But constantly running on empty didn’t make us stronger caregivers. It made us tired, impatient, and disconnected.

National Suicide Prevention Week, observed Sept. 6-12, is an important reminder that caregivers need care, too. Depression doesn’t always look like uncontrollable crying. It may appear as anger, numbness, isolation, hopelessness, sleeplessness, or a loss of interest in things that once brought joy. Burnout can quietly become our normal until we no longer recognize ourselves.

Judy and I eventually realized something simple but important: We have to be as close to 100% as possible if we hope to provide 100% care. Caregiver burnout and depression are one of the most common discussion points when talking to parents of children with chronic illnesses. Self-care is not selfish. It is part of the care plan.

Columnist Richard E. Poulin III and his daughter, Rylae-Ann, enjoy the sunset during a family vacation. For caregivers, moments of rest and connection are not selfish — they are essential parts of caring for the people we love, he writes. (Courtesy of Richard E. Poulin III)

Lessons we learned along the way

Say what you are really feeling. “I’m fine” may end a conversation, but it rarely solves anything. Speak honestly with your spouse, a trusted friend, a counselor, or someone who understands caregiving.

Take turns carrying the weight. Judy and I learned that we both didn’t have to be strong at the same moment. Sometimes one person leads while the other rests or takes personal time.

Schedule small breaks. Self-care doesn’t require an expensive vacation or a silent retreat to the mountains, although both sound wonderful. A walk, a workout, coffee with a friend, quiet prayer, or an uninterrupted nap can help reset the mind.

Protect your identity. You are a caregiver, but you are also a spouse, friend, professional, and individual. Continue doing something that reminds you who you are beyond the diagnosis.

Watch for warning signs. Withdrawal, hopelessness, major changes in sleep, increased substance use, or comments about being a burden should never be ignored. Ask directly if someone is thinking about suicide. That question does not plant the idea; it opens a door to support.

Seek professional help early. Counseling is not an admission of weakness. It is another tool just like physical therapy, medication, or medical support that can help a family remain healthy.

Today, Rylae-Ann is thriving, but caregiving did not suddenly become effortless. Judy and I still grow tired. We still sometimes disagree. We still need reminders to pause and care for ourselves. The difference is that we now understand that our well-being affects the entire family.

During National Suicide Prevention Week, check on the caregivers around you. More importantly, if you are the caregiver, check on yourself. You matter beyond what you provide for others. Asking for help is not abandoning your family. It may be one of the bravest ways to continue caring for them.

Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.