Thought Provoking Question #9

“Dying is a universe of its own. ” 

                            ― Arlene Ang, 

                                                                                Seeing Birds in Church Is a Kind of Adieu

The Caregiver’s Bill of Rights 

Do you know the difference between a "caretaker" and a "caregiver?" In this article, I want to discuss the "Caregiver’s Bill of Rights." A caretaker is one who cares more for another person than for their own care and well being. A caregiver is in touch with oneself and cares for both themselves and others.  

So why a Caregiver’s Bill of Rights? Professional caregivers have learned long ago that to be an effective caregiver requires you first not lose sight of your own needs. This must be addressed first if you are to be helpful to anyone secondly. Nurses, hospice care workers, social workers, chaplains and other professional caregivers known the importance of balance, pacing, self-love and taking care of themselves. They also know the dangers of stress, burnout, co-dependence and the likes of depression to name a few caregiver pitfalls.  

Though I’ve seen several versions of caregiver bill of rights over the years, I’ve developed my own which addresses 15 key points that all caregivers must remember as they performed their caregiver roles.  

1. Communication. To be honest and open with all who are important to the patient, to express one's fears and concerns, and to listen and be thoughtful.  

2. Honesty. To safeguard the patient’s resources, financial and otherwise when appropriate. To share opinions and suggestions, even in the face of resistance. To be careful not to not carry personal burdens.  

3. Information. To be informed about patient matters, financial and otherwise. To know patient wishes during life and upon death; such as wills, advanced directives, funeral wishes, etc. To prepare for the unexpected with a sense of peace, and by having patient requests and information in writing.  

4. Self-Determination. To assist the patient and expect the patient to make as many decisions as possible. To encourage that patient "affairs be in order." Care.  

5. Reason. To place upon the patient only those requests that are reasonable; constantly checking with patient and others (medical and non-medical staff) as needed to evaluate what is reasonable.  

6. Guiltless. To provide care and support to the patient while remaining free of guilt. Know you are doing your best. To accept some uncertainty in many day-to-day matters.  

7. Emotions. To have freedom to express feelings and emotions and difficulties with patient and others close to and working with patient. To love.  

8. Limitations. To acknowledge limitations and to seek outside help and assistance when personal limits are met or are being felt. Minimize your suffering.  

9. Personal Life. To maintain a healthy personal life with good health care, good nutrition, exercise and personal growth outside of caregiving role. Enjoy one's Freedom.  

10. Co-dependency. To not manipulate patient illness or become overly enmeshed in patient illness. To not become a co-patient. To Maintain Independence.  

11. Objectivity. To look at situations with a "stand back" objectivity, from time to time free of emotional impact, when possible. Develop a personal support group. to stay factual.  

12. Responsibility. To not take responsibility for patient decisions. To take responsibility for your decisions. To not look back over decisions by either you or patient which did not work. Go forward. Each day is new and unique.  

13. Professional Growth. To stay informed and participate in groups, workshops and helpful readings which enhance your ability to be a better caregiver and better human being. Grow.  

14. Time-outs. To feel free to inform patient of need to take time off and assist patient in finding replacement care as needed. To be free of guilt in so doing this. Take time away to rejuvenate.  

15. Closure. To develop useful, helpful and personal closure processes for leaving your patient, whether through patient death or otherwise. You did your best. Peace be yours. 

Remember: caregiving is an art. Keep the "Caregiver’s Bill of Rights" handy so you don’t lose perspective. We are all called to care sometime, so be prepared. Next time we’ll discuss the "Patient’s Bill of Rights."  

[This article is by Dr. J. Davis Mannino and originally appeared in the community newspaper We The People. All Rights Reserved by the author.]