Guide for Family Caregivers

July 31, 2010 [Updated October 9, 2025]

In need of a caregiver? See our NHU guide: Guide to Searching for and Selecting a Home Health Aide. This guide is very comprehensive in assessing your situation, identifying your care needs, identifying the level of caregiving you need, finding resources and financial aid for caregiving.

For more information and resources, see NHU's Caregivers section.

A Guide for Family Caregivers

One usually does not begin to look for something until one is in need. Being informed may assist you in avoiding stress and burnout, both common outcomes of caregiving. When you take care of yourself first, you can ensure that your caregiving may last for many years.

  • What is a Family Caregiver
  • How to Be an Effective Caregiver ___________________________________________________________________

    _________________________________________________________________

    What is a Family Caregiver?

      The vast majority of care in the United States is provided by unpaid, informal caregivers. In 2025 it is estimated that there are 47.8 million UNPAID caregivers, most of which are family members caring for their loved ones in their homes. The term "family caregiving," can extend to others, such as neighbors, who provide unpaid care.

      Unpaid family caregivers make up approximately 81 percent of the caregiving "workforce" in the United States and provides nearly $1 trillion per year in unpaid service to society.

      Source: Caregiving in the US: Research Report, July 2025

    How to Be an Effective Caregiver

      Be Self-Aware

        Caregiving can be emotionally strenuous and stressful. Patience is endurance under difficult circumstances. It's important to pay attention to how we react when faced with annoyance, anger, or even defiance. For example, if as a caregiver you are running late, the tendency is to hurry your loved one too. A rushed atmosphere can be very difficult for care recipients, especially for those who are neurodivergent and thrive on routine. It's easy for our loved ones to pick up our "anxious vibes," and react unfavorably.

        It is just as important to remain aware of our own emotional state as much as we do our loved ones. Pay attention to how you react to stressful situations, both phycially and emotionally.

        • Does your blood pressure spike?
        • Do you feel tightness in your chest?
        • Do you clench your teeth or fists?
        • Do you feel an urge to cry or yell?
        • Do you convey your frustration through your facial expressions?
        • Do you feel exacerbated or hopeless?

        Many of these reactions are normal under stressful situations. Still, it is important to remain mindful and find ways to ease the impact of stress on your day to day life. Your care can only go so far, as you can go.

        It's important to remember that caregivers need support too. You are taking on an incredible task that provides little time for breaks or rest. Take care of yourself and ask for help when you need it.

        A helpful resource is available via the Family Caregiver Alliance: Taking Care of You: Self-Care for Family Caregivers

      Assess the Needs of You and Your Family

        Our own and our family's needs can change on a daily basis. There are short-term needs and long-term needs. There are minor to major life decisions that we must consider. It's easy to feel overwhelmed if we do not break these needs down into smaller, more manageable tasks. Create a small working group of trusted family, friends, and professionals to work through an actionable plan.

        Seek ways to make life easier. Be prepared to be resourceful.

        A great tool for this type of assessment is offered via The Arc: Center for Future Planning

      Acknowledge, Caregiving is Hard

        Nobody ever wants their loved one to feel like a burden. It's hard to balance the stress of caregiving, while sparing the feelings of our loved ones. We can (and should) internally acknowledge a stressor without externally blaming anyone. It's okay to talk about your stress. It's okay to acknowledge that your day was difficult. Caregiving is hard. We can be honest about that.

        Once we start talking about caregiving in an honest way, we can start to unpack the source of our stress. The key is identifying it, and managing it accordingly.

        For example, challenging behaviors often arises from a breakdown in communication, or frustration over an unwanted decision. Such behaviors can also be caused by a chaotic environment or dysregulation in either the caregiver or person being cared for.

        It's important to remember that millions of people have walked in your shoes, as a caregiver. There is a wealth of knowledge and support available if you are open to it.

        You are not alone. There are countless people and resources available to help you navigate your life as a caregiver.

      Build a Trusting Relationship

        It is difficult to draw hard lines between dependency and independence in the caregiving relationship. This relationship must be negotiated, and respect the boundaries of both the caregiver and person receiving the care. As a caregiver we cannot expect to fully dictate someone else's life. Similarly, we cannot allow our loved ones to take advantage of us.

        There may be a conflict of dependence and caregiving or transitioning from care to independence.

        We must ask these questions:

        • How dependent is my loved one?
        • Are they capable of more independence?
        • How much support is enough? Too little? Too much?
        • How much should I push and when do I let go?

        There is no right or wrong answer. But, keep asking the questions.

        To read more on this, check out our blog, which features several articles from a long time family caregiver:

        Family Caregiving: What I wish I had known

        Caregiving: The subtle line between protectiveness and dominance

    Come to the edge.

    We might fall.

    Come to the edge.

    It's too high!

    COME TO THE EDGE!

    And they came,

    and he pushed,

    ---and they flew.

    -- Christopher Logue, English Poet (1926-2011)

      Caregiver Support Guide - Care for the Caregiver

        Tips for Caregivers

          Allow the person to do what they can comfortably and only assist them with the things they cannot do comfortably. Do not do for people what they can do for themselves.

          Have empathy for the person for whom you are caring. Actively listen so you may understand what they need and want.

          Be patient. Get the required sleep you need to be able to give good care.

          Do not rush. Take the time to provide care properly. The person for whom you are caring may need more time to complete tasks. Encourage them to be as independent as possible. Be prepared to set aside time for them to do what they can.

          Be an advocate. There may be times when you will have to stand up for the person for whom you are caring. You will know better than most people what they need and want in daily living.

          Empower the person for whom you are caring. Help them to be as independent as they can be. Do not answer for them, if they are capable of answering.

          Take care of yourself. Rest when you are weary. Take a break. Go outside and let nature heal. Have a hobby, or take time for other family and friends.

          Ask for help when you need it. Asking for help will lend strength and longevity to your caregiving. Lean on your spouse, siblings, parents, grandparents, neighbors, or close friends.

          Set reasonable expectations for yourself, your family member with a disability and the rest of your family.

          Use humor to lighten life's load.

          Study relaxation techniques - deep breathing, yoga, meditation.

        Taking care of you!

          This cannot be stressed enough. The first, and most important responsibility of a caregiver is caring for yourself. Your ability to care for another is only as good as how well you care for yourself.

          Studies have shown that more than 60% of caregivers experience caregiver burnout. This burnout will not only impact your own mental and physical health but could also create an unhealthy and dangerous environment for the person receiving your care. It's important to identify the signs of burnout, such as withdrawal, feelings of anger or resentment, changes in appetite, exhaustion, feelings of hopelessness among others.

          Seek help from a health care provider or therapist if you recognize any of these signs.

          While burnout isn't always preventable you can lessen it's impact through self-care:

          • Set clear boundaries
          • Rest when you can
          • Eat healthy, but don't skip your favorite treats
          • Normalize asking for help
          • Seek guidance and support from fellow caregivers
          • Take advantage of Respite programs in your area
          • Do something that brings you joy everyday

          For more ideas on Self-care check out our blog articles Self-Care for the New Year and Self-Care in an Overwhelming World

          Additional resources include 5 Caregiver Relaxation Tips from Nurses in the Know and Go Ahead, Have a Good Cry: 5 Reasons Why Its Good for You 

        Caregiver Guilt

          Most of us will eventually confront the guilt of the possibility that we could have done more, should have known better, or would have done differently in retrospect. This increases not only our guilt, but our grief as well. We long to spare our loved ones from any kind of suffering or difficulties; but it is simply not possible all of the time. It's easy to put the blame solely on ourselves.

          Here are some tips that may help deal with Caregiver guilt:

            1. Acknowledge the things that are out of your control and focus on what you can change.
            2. Identify and celebrate the successes
            3. Look for and use the resources that can help you thrive as an individual and caregiver
            5. Be compassionate with yourself. Good and bad days come and go. Be confident that you are doing the best that you can. There is no one way to be a Caregiver, just trust you.
            6. Take action to meet your own needs.
            7. Ask for help in order to meet those needs.

          Below are some helpful websites with resources, support, and advice to help better cope with being a caregiver and guilt.

        Help for the Caregiver

          Much of the time, caregiving is continuous, 24/7, 365 days of the year. Continuous caregiving will take its toll. Family caregivers who are caregiving out of love are the least likely to ask for help. No one should feel ashamed or weak because they need to ask for help. Look upon asking for help as a strength, because you will be able to assist the person you are caring for better. Do not wait until you are exhausted, tired, unable to take care of your household or the person for whom you are caring. A good caregiver knows their limitations as well as their strengths.

          The American Medical Association provides a Caregiver Self-Assessment Questionnaire in both English and Spanish that can help you evaluate if you need to ask for help in your caregiving.

          "This tool will help caregivers analyze their own behavior and health risks and, with their physician's help, make decisions that will benefit both the caregiver and the patient. The Caregiver Self-assessment Questionnaire will enable physicians to identify and provide preventive services to an at-risk, but hidden population and improve communication and enhance the physician-family caregiver health partnership. By using the self-assessment score as an index of caregiver distress, the need for supportive services can be discussed, and the physician can then encourage utilization and make appropriate referrals to community resources."

        Help from Family Members

        Receiving help from family members for the time needed to rejuvenate yourself may be challenging. Your needs should be expressed to family members to ensure their participation in providing respite care. As you begin to incorporate family members as respite care givers you may want to start by exchanging words about daily activities, or the schedule you keep to ensure all needs of your loved one are being met.

        Resources on creating a family care team are available from the Wisconsin Family and Caregiver Support Alliance.

        The Family Caregiver Alliance also offers many different resources for caregivers. One of the resources provided by the organization is their Caregiver training. They offer a variety of webinars on planning for care, self care, daily care, legal and financial issues and much more.

        Respite Care

          Respite care is the break given to the family caregiver. Respite care has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect.

          Finding a Respite Caregiver

          Choosing Someone to Provide Respite Care

            If you are looking outside of family or close friends to provide respite, the process can be nervewracking. But once you find the right fit, it can open up a whole new world to family caregivers. ARCH provides a comprehensive resource center on How to Choose a Respite Provider

          Different types of Respite Care Providers

            The Lifespan Respite Care Program overseen by the Administration for Community Living helps create coordinated state systems to provide accessible, community-based respite care services. Respite care can be provided in the home by am agency, home care provider or can be self-directed by the family. Respite is also available in the community via day centers or service organizations

          Financing Respite Care

            Cost of respite care will vary with the kind of care provider. The Home and Community Based Services Waiver via Medicaid is a very common way to cover the cost of Respite care. Most children and adults with significant disabilitis should qualify for medicaid. Each state determines the eligible population for their waivers.

          Caregiver Support Group

            One of the hardest parts of being a caregiver for a disabled family member, regardless of the family member's age, is the feeling of isolation. You are mostly alone, all day and every day, because the person you're caring for needs too much help for you to leave. This means that one of the things that make it so hard to break your isolation is time -- time to get away for a while, maybe even talk to people in the same boat as you with a disabled family member of their own.

            Support groups have been shown to be one of the most effective ways to recharge caregiver's "batteries." If there isn't a support group near you, or one that can meet at a time you have free, consider starting your own. If you do start a caregiver support group, be sure to write to us and tell us about your group. We can put information about your group on our website.

            Technology has made connecting with others incredibly easy. However nothing can replace the human connection we recieve by meeting in person. This Google Search can help you connect with caregiver support groups in your community.

        New Horizons Un-limited assumes no responsibility in guaranteeing the services, programs or conditions as described. If you are interested in a resource listed within, call or contact the resource to verify the current situation. Evaluate information and make your own decisions when using this guide.

        Share Your Caregiver Story!

          Tell us your own personal caregiver story or share a caregiving tip, vent to us, or share your resources! Submit only your own original art, stories, poems, jokes. If you wish to send a picture, it must be in .jpg or .gif file format and all parties are giving us permission to publish the picture. If you have questions or ideas, information and solutions that you would like to share with us, e-mail us.

          Thank Your Caregiver!

          Do you have a caregiver who has been extraordinary, that you would like to honor with praise and thanks? Send us, in your own words, an article about your caregiver and we will publish your article. See others at Caregivers Making a Difference. Submit only your own original stories, or art, poems, humor of the caregiver you wish to honor. If you wish to send a picture, it must be in .jpg or .gif file format. E-mail us your story.