Caregiving and Mental Illness

On December 31, 2025 NPR published an article under its “What it Takes” series at His brother’s mental illness isolated his family. Now he’s helping other caregivers. My family is part of the story. We were picked up after answering a survey on caregiving that NPR posted a little over a year ago to “tell us your story: How did caregiving change you? How do you cope with the hard parts? What have you learned that you’d like to share with others?”

My Advice from the NPR Survey

What lessons have you learned that you want to share with other caregivers?

• Take care of you. It’s easy to be overwhelmed, frustrated, ashamed, sad, or angry. It’s also easy to let your physical and mental health slip. Look for spaces where you can give yourself priority. Incorporate activity in your day, and find things you love. If you have depression, talk about it.
• Seek out your tribe. Find and surround yourself with people who understand the diagnoses you are caring for. The ability to talk with others who not only understand, but can empathize and respond meaningfully matters.
• Find local resources (Parent Center, Disability Law, Legislative Advocacy Groups, Charitable Support Groups) to be involved with. They will help you with valuable advice, direction and resources when you need them.
• Plan far ahead for what your person may need. Medicaid qualification, Dependent Services, Social Security benefits, Guardianship, Housing, Estate Planning all requires extensive documentation and may have extensive wait periods.
• It’s critical to allow your person to self-determine, but know that you are also their best advocate if/when they can’t represent themselves
• Learn about the condition, and options for treatment. Be open with treatment providers. If you are a parent/guardian or have permission from the patient to talk with doctors or counselors, use that to discuss concerns. If you don’t have authorization to receive information about a patient relationship, you can still provide information to treatment providers to better help them understand an issue or concern.
• Journal relevant thoughts, and look back. Journals can be for your feelings, progression of treatment or documenting a condition. These notes can be invaluable when you talk to a doctor or are qualifying for a resource.

What has been the hardest part of being a caregiver?

Dealing with depression, and having no-one to talk to. Frustration when you can’t get treatment or support. PTSD from events that happen as a care-giver. Anger at “the system” whether it’s insurance coverages, hospital policy, or legislation/funding that negatively affects your loved one, or having resources taken away that you depended on unexpectedly.

If you’re new to caregiving, what questions do you have about it?

I’m definitely not new. My primary advice here would be that friends who knew the “healthy” you, or before you became a caregiver will often disappear. People will say incredibly insensitive things, or make opinions where they have no understanding/expertise to say anything at all. Be critical of advice (not skeptical, but critical) and confirm with qualified research and/or professionals, even if the advice is from within your tribe/group. Be willing to look for new ways to do things. Look into clinical research.

Featured Voices of the Article

My family’s role in the story is to be the “stranger in the story” and to provide an anecdote illustrating what the other subjects offer: data, experience or action. I’m familiar with and a strong supporter of NAMI, and for the Caregiver Action Network.

⬆️ Christine Crawford, National Alliance on Mental Illness (NAMI)
https://www.nami.org
– NAMI works to educate, support, advocate, listen and lead to improve the lives of people with mental illness and their loved ones
– See: Mental Health Education, particularly the NAMI Family-to-Family course.
– Consider: NAMIwalks 2026 is a friendly, low-barrier way to connect in your local community. You can register and attend an upcoming walk in your area.

⬆️ Marvell Adams Jr, Caregiver Action Network
https://www.caregiveraction.org/
– CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers
– See: Blueprint for Families of Loved Ones with Mental Health Issues

⬇️ Mitul Desai, The CareHack
https://www.thecarehack.com
– Based in New York, currently working with a multi-state practice and launching a Medicaid-funded project in New York. CareHack is focused on working with “big players in for-profit health care systems”, i.e. insurance companies and large practices
– their solution is based on a framework with predictive AI and human coaching

Additional References

I would really recommend checking out these links, and supporting the work of these groups. If you take anything away from this, recognize that there are three absolutes of care: face the difficult topic, keep your heart, and always advocate.

✅ Film: No One Cares about Crazy People, by Gail Freedman
https://noonecaresfilm.com/
– a feature documentary film about the tragedy, crisis and chaos of severe mental illness in America, and a national crusade to do something about it

✅ Film: UNSEEN: How We’re Failing Parent Caregivers & Why It Matters
https://caregiverdoc.com
– Many caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The mental, physical and financial struggle of family caregivers costs us all.

✅Film: The Case for Kindness
https://caseforkindness.com/
– Case for Kindness explores the profound impact of kindness on our physical, mental, and emotional well-being.

✅ Organization: National Shattering Silence Coalition
https://www.nationalshatteringsilencecoalition.org/
– The National Shattering Silence Coalition (NSSC) is dedicated to dismantling the walls of stigma, isolation, and shame that surround critical public health and social challenges. Silence is not a passive state but an active barrier to healing, understanding, and progress.