What is a caregiver?
When many people hear the word caregiver, they tend to think of someone who takes care of a disabled relative and acts almost like a home nurse while also taking care of finances, cooking, and cleaning. That’s not wrong, but not all caregivers play such an involved role. Being a caregiver can mean a lot of things. A caregiver can do one or all of the following (or many other things not in the list below):
- Provide support and encouragement.
- Drive someone to appointments.
- Attend appointments and help someone make treatment decisions.
- Help someone to understand their rights.
- Listen when someone is struggling with symptoms or the recovery process.
- Make legal or financial decisions on someone’s behalf.
- Help someone get accommodations at work or school.
- Run errands or help with household chores.
- Be there to manage crisis situations.
Caregivers can be parents, relatives, friends, partners, adult children, neighbors, or have some other kind of relationship to the person living with a health condition.
In this guide, we’ll talk specifically about people who care for someone who has been recently diagnosed with a mental health condition.
- Be careful about giving advice—wait until they ask for it, or at least check to make sure they’re open to it. You can make suggestions for treatments they could try, and you can do supportive things like taking them to their first therapy appointment or reminding them to take their meds. But don’t demand that they follow a specific treatment plan. Even if you think you know what they need, mental health treatment works best when the person who’s receiving it is on board.
- If you’re a parent, giving advice and making sure that your child is taking their medication is a big part of your job. Make sure that you explain to your child why you are doing what you’re doing and be sure to listen to their concerns about their own treatment.
- If you’ve experienced mental illness yourself, you can share your experiences to help them open up and feel supported. But don’t assume that their experiences will be the same as yours.
- Ask them what you can do to help. Sometimes that means just being there with them or listening while they vent. Or maybe the daily demands of life feel overwhelming when symptoms aren’t under control and helping with small tasks like doing the dishes, going to the grocery store, or picking up children can make a big difference. Some people may want more help and others may just want some space.
A power of attorney is a legal document that grants a selected person (the agent) rights as the patient’s personal representative. Some health care power of attorney documents are effective immediately, while others only go into effect when and if the individual is deemed unable to make informed decisions on their own.
If the person you care for names you as their health care agent, you’ll have legal decision-making authority over their care and serve as their advocate when the power of attorney is in effect. You’ll also have access to the same health information as the patient themselves under HIPAA.
While the power of attorney form can be used as a standalone document, it is often incorporated into a psychiatric advance directive (PAD).
A PAD is a legal document that the individual you care for can create during a time of good mental health to guide their care in case of a mental health crisis, when they may be deemed unable to make informed decisions. There are generally two parts: an advance instruction, which clarifies their preferences regarding treatment and services, and a health care power of attorney. As long as the PAD meets applicable state requirements, it is legally enforceable – the individual’s providers must follow it.
Depending on state law, the individual may be able to choose more than one agent – they can designate primary and backup agents or give each different responsibilities (making care decisions versus handling household responsibilities). Your role should be clearly defined in the psychiatric advance directive.
If the person you care for is already unable to make informed decisions about their health but did not appoint a power of attorney ahead of time – a common situation – then a court may appoint you as their conservator or guardian (title varies depending on the state). An adult’s guardian or conservator is someone who is mandated by the court to be in charge of an individual’s legal, financial, and health care decisions. Most often, a conservator is a spouse or adult child. If a family member is not considered able to take on the position of conservator, a professional may be hired.
Learn more about conservatorship.
As the legal guardian (typically the parent) of a minor, you are their personal representative and have the legal authority to make health care decisions for them. If they have a mental health condition, there are a few ways in which that legal designation can allow you to better care for them.
- Advocacy. Unfortunately, health care providers don’t always take young people seriously – especially those with a diagnosed mental health condition. But the minor you’re responsible for knows how they’re feeling better than anyone else and likely knows what care they want and need. You have the power to support their concerns and opinions and demand that they have a say in their treatment.
- School accommodations. Special education services are guaranteed to every child who needs them, but there’s a formal process you have to follow to get them. You (or the minor’s teacher) can initiate getting the minor evaluated in order to develop an Individualized Education Plan (IEP) that spells out the modifications to their program. If they don’t qualify for an IEP, a 504 plan is a good alternative.
- Recognize that it may take time for your family member or friend to find the proper medications and dosages that work and encourage your family member or friend to speak immediately to their health care provider about any problems related to medications.
- Understand that recovery from mental illness isn't simply a matter of "just staying on one's medications." Self-esteem, social support, and a feeling of contributing to society are also essential elements in the recovery process.
- If your loved one is experiencing weight complications as a side effect of recovery, be supportive in encouraging positive body image. If they are worried about or unhappy with their weight or body, encourage them to speak with their doctor. Providers can help figure out healthy next steps to gain/lose weight, stabilize weight, or cope with body image challenges.
Learn more about paying for care
Learn more about taking time off of work or school
Learn more about insurance
Mental Health America (MHA) recognizes and values collaboration as a fundamental cornerstone needed to effectively address the mental health needs of individuals and communities we are dedicated to serving. Our trusted partners in the caregiving space include:
National Alliance on Caregiving - Read the report created in collaboration with Mental Health America and NAMI, On Pins & Needles: Caregivers of Adults with Mental Illness.
This campaign is supported by contributions from Janssen: Pharmaceutical Companies of Johnson & Johnson and Otsuka America Pharmaceutical, Inc.