Twelve Rights of Informal Caregivers

Being an informal caregiver is a demanding and often unacknowledged role that involves a range of physical, emotional, and mental responsibilities. It is essential for caregivers to understand and assert their rights to maintain their well-being while caring for others. This list of Twelve Rights of Informal Caregivers provides a framework for recognizing and honoring their own needs and identities alongside their caregiving responsibilities.

1. I have the right to my own self-care.

“Talk to yourself like you would talk to someone you love.”- Brené Brown

Self-care is the practice of tending to your physical, mental, and emotional well-being. It often includes nutritious food, physical activity, and healthy sleep habits. At its core, self-care is an act of loving-kindness toward yourself. While loving-kindness includes these habits, it is much more encompassing. Is your self-talk loving? Are you compassionate toward yourself? How do you value yourself? What boundaries do you set? Care for yourself with loving-kindness by guarding and valuing the unique person you are.

2. I have the right to my own identity.

“Remember always that you not only have the right to be an individual, you have an obligation to be one.” – Eleanor Roosevelt

Role engulfment—becoming overly consumed by the caregiver role—is a major contributor to loss of self-identity, leading to anxiety, depression, and isolation. Yet, you are a unique individual with a purpose beyond caregiving. While caregiving is a profound and meaningful responsibility, your worth exists before, during, and after this role. You are not defined by caregiving alone—you matter, you are valued, and you are significant.

3. I have the right to grieve and mourn non-death and death losses.

“Caregiving leaves its mark on us. No matter what we do to prepare ourselves the hole left behind looms large.”- Dale L. Baker

In many ways, we are grief-averse. We often want grief to disappear quickly and long for life to return to “normal”. On the other hand, a sense of indifference or detachment may set in, leaving us feeling unmotivated, "blah," or generally numb. Grief is also not linear; there are no clear-cut stages. It’s more like a scribbled piece of artwork—moments of sadness, anger, and depression can coexist with feelings of moving forward and coping. Take comfort in this perspective from Earl Grollman: “Grief is not a disorder, a disease, or a sign of weakness. It is an emotional, spiritual, and physical necessity, the price you pay for love. The only cure for grief is to grieve.”

4. I have the right to set boundaries.

“Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another.’- Peggy Speers

Have you ever considered nurturing your energetic aura? As a caregiver, you are incredibly attuned to the needs of others, balancing the care of your loved one with the demands of your children, spouse, family, co-workers, church, school, and an endless list of other responsibilities. You are also exposed to a wide range of energy, from anger to peace and sadness to joy. But are you attuned to your own needs? How do you protect your precious energy? Establishing personal boundaries is key to nurturing your energetic aura and fostering self-inclusivity in “loving one another.” Give yourself space, set clear expectations, and define what you allow to consume your energy.

5. I have the right to be understood.

“Perspective is an incredibly powerful tool. It tempers how we receive information, and guides what we choose to do with it.”- T. A. Sorensen

Caregivers are the frontline defense for their loved ones. In addition to providing social support, emotional care, and assistance with daily living activities, informal caregivers are often called to perform tasks outside the scope of their expertise, such as administering injections or providing wound care, with minimal instruction or support. As advocates for their loved ones, caregivers have the right to be heard by medical and health professionals and to have their concerns validated. Communicate clearly and effectively, seek educational support, and navigate the complexities of caregiving to protect your loved one and make informed decisions.

6. I have the right to privacy.

“Within you, there is a stillness and  sanctuary to which you can retreat at any time and be yourself.” – Hermann Hesse

When it comes to informal caregiving, we often lose intangible aspects of life—independence, control, and relationships, to name a few. Privacy is one of those intangibles that you can protect. When privacy is invaded, a sense of hopelessness can set in, leading to negative emotions, stress, and anxiety. Protect your privacy by setting and maintaining boundaries, creating an off-limits space for yourself, and nurturing your inner environment with mindful affirmations and meditation.

7. I have the right to ask for and receive assistance.

“Asking for help is not a sign of weakness. It’s a sign of strength. Oftentimes our society tells us that if we ask for help, we are weak. But the strongest thing someone can do is take that first step in getting help, whatever shape or form that is.” – Demi Lovato

Asking for and receiving assistance with the care of your loved one is not a sign of weakness. On the contrary, it is a display of great courage. Recognizing your limitations, strengths, and weaknesses and reaching out for help brings comfort to both you and your loved one. Research community resources, engage family and friends, and set clear expectations. Monitor the process and allow yourself to accept support.

8. I have the right to put myself first.

“When we truly care for ourselves, it becomes possible to care far more profoundly about other people. The more alert and sensitive we are to our own needs, the more loving and generous we can be toward others.” -Eda LeShan

You are important—just as important as anyone else. To truly serve others, it is essential to value yourself first. Honoring yourself and putting yourself first is not selfish. It is a universal truth that, when applied with the right understanding, fosters unbounded compassion and energy. Give fully of yourself, but when you begin to feel depleted physically, mentally, emotionally, or energetically, take a moment to pause and breathe. The breath has a profound impact on our nervous system. Make it a loving practice to live in peace and harmony within yourself.

9. I have the right to be unapologetic for my emotional fluctuations.

“Never bend your head. Always hold it high. Look the world straight in the face.” – Helen Keller

Caregivers face an onslaught of emotions every day, sometimes within minutes. Worry, fear, laughter, sadness, fatigue, unhinged grief, and unwavering love all converge, creating a tumultuous emotional landscape. We often chide ourselves for these wild fluctuations, insisting that we should be able to perfectly handle whatever comes our way. Others may misunderstand and quickly criticize. Stop living in condemnation of your emotions. This emotional fluctuation is normal and is a natural response to the deep love and care you have for your loved one.

10. I have the right to be respected because I matter, I am significant, and I am worthy.

“One of the greatest regrets in life is being what others would want you to be, rather than being yourself.” – Sharon L. Alder

Respecting yourself is vital for everyone, and especially for informal caregivers. The caregiving role naturally calls us to serve others, but it is often this very act of serving that becomes disproportional and undermines our self-respect. Yes, your loved one may have a disease that causes them to lash out in anger, but what you can control is your response and the boundaries you set. Remember, what you allow implies consent and will only continue and expand. You have the right to inform your loved one that demeaning words and gestures are hurtful to both of you. Your self-respect is strengthened when you establish space, respond calmly, and set clear boundaries.

11. I have the right to heal and personally transform into the best version of myself.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep, loving concern. Beautiful people do not just happen.” – Elizabeth Kubler-Ross

Caregiving, a beautiful experience of giving back to someone you love, also profoundly impacts the caregiver. Caregiving becomes our personal change agent. Beyond the stress and emotional variability, it brings an awareness of our inner beliefs. What beliefs are limiting you? What repetitive reactions are holding you back from becoming the best version of yourself? It’s not about perfection, but about discovery and growth. Let the journey of caregiving heal and transform you, and in doing so, you will uncover beauty, joy, and opportunities in ways you never imagined.

12. I have the right to live out my dreams, goals, and aspirations.

“Your work is to discover your world and then with all your heart give yourself to it.” -Buddha

Be wary of yielding your right to your dreams, goals, and aspirations. Discover what brings you joy deep within your soul. Engage in activities that feel good to you and nourish your spirit. Even if only for a few minutes, doing what you love is enriching and valuable to yourself. Remember, the more you give of yourself, the less of yourself you have. Preserve your personhood and your personal pursuits.

Embracing these rights is essential not only for your well-being but also for the well-being of those you care for. As you navigate the complex landscape of caregiving, remember that respecting yourself, acknowledging your emotions, allowing for personal transformation, and pursuing your dreams are not selfish acts but necessary ones. They strengthen you, enabling you to provide better care while sustaining your own health and happiness. Always hold in your heart the truth that you matter greatly and deserve to live a life filled with respect, healing, and fulfillment.