12 caregiver rights everyone should know

A caregiver is a person in charge of providing specific and often specialized care to older adults and people with chronic diseases. In other words, they are committed to accompanying and improving the quality of life of the person they care for. Caregivers fulfill the task of facilitating and providing care for the basic and instrumental activities of daily living that an older person cannot perform or in which they require some type of support, due to physical or mental disability.

Taking on the commitment of caring for a loved one brings many satisfactions and is fulfilling because of the affection one has for the cared-for person. However, being a full-time caregiver has daily physical, mental, and organizational demands, and can conflict with the caregiver’s own personal life.

The Red Cross has detailed 12 rights of caregivers on which it is important to reflect and which are valid for any person who provides care to a dependent family member or loved one.

Caregivers are entitled to:

1. To be recognized as valuable members of society. The selfless contribution of these people has a social and economic value that is often invisible and unknown, measured by the hours of devotion or personal projects that have been postponed or abandoned. It is a commitment mostly made by women in the family context, who take care or took care of their children and now also take care of their parents, their partner or another family member or friend.

2. To their own self-care. It is very important that caregivers value and learn to take care of themselves, following the advice of experts. Their own wellbeing, as well as the wellbeing of the person they care for, will depend to a significant extent on self-care.

3. To educate and train themselves in caregiving. When any disease develops in a family member, it opens a path of doubts and uncertainties about what to do or how to act. Receiving training and specific information about the disease and understanding how other people deal with similar situations is a very helpful resource.

4. To receive information from professionals about available resources. Sometimes, caregivers are not able to benefit from resources because they are unaware of their existence or do not know how to access them.

5. To experience negative feelings about witnessing their ill loved one. Sometimes, caregivers may perceive some of their thoughts as unacceptable or experience negative emotions toward a sick person. To avoid negative consequences for the caregiver’s mental health, it is essential to understand that all feelings derived from such complex and disconcerting situations are valid and that it is essential to learn how to identify and manage them. This requires the support of the entire family and the acknowledgment that the entire burden of caregiving does not fall on one person.

6. To set limits to excessive demands. Feeling obligated to respond to all demands or assuming more responsibilities than one is capable of is often a precipitant of overload, or the so-called caregiver burnout.

7. To ask for help. Often, caregivers are reluctant to ask for help, something that may result from a lack of assertiveness or not being considerate of their own needs. In other cases, caregivers do not know how to ask for help effectively, something that can be learned and will benefit their own well-being.

8. To dedicate time to themselves without feeling guilty. Caring for a family member often increases levels of stress and physical, mental and emotional strain. It is essential that caregivers set aside time for themselves, allowing them to distract and relax.

9. To express their feelings. Caregivers may fear being judged by others if they express or show their feelings, or think that they may be misunderstood. Having spaces to share feelings and emotions without being judged, such as those offered by various therapeutic groups, has proven to be of great help in the well-being of caregivers.

10. To make mistakes. Caring for a person involves a constant approach to complicated and changing situations that requires making an infinite number of decisions, making even the most self-assured person feel doubt. It is a continuous learning process that is nourished by experience and, therefore, by successes and mistakes.

11. To be treated with respect. The fact that one person is assuming the responsibility of caring

for a family member should not lead others to make many assumptions or disregard the situation. Understanding and managing one’s own emotional skills and being assertive are key tools for being respected.

12. To take care of their future. It is undeniable that caring for a loved one invades the agenda and future plans of the family, especially of the caregiver. However, it is important to think about one’s own future, something that can be helpful in coping with grief when the family member is no longer around.

Although it is true that the care of an older adult may be provided by a trusted family member and the family takes on this responsibility, it is not a family-only problem. Any relationship between a caregiver and a cared-for person is also a social, economic, political and sanitary problem. Acknowledging this problem today helps us defend the rights of caregivers and to embrace a commitment for improving the conditions of caregiving.

This article is from the National Hispanic Council on Aging and part of an ongoing series by the Diverse Elders Coalition, examining different senior demographic groups.