MaryAnn’s Family Bill of Rights

As a colleague shared with me a piece called Joan’s Family Bill of Rights, written by Barbara Lewis, my mind went right to the journey I had taken with my own mom. My mom had dementia, and although Barbara’s experience was in a hospital setting, I see such a crosswalk between her insights and mine from a memory care unit perspective, that I decided to write my own family bill of right’s, in honor of my own mom and our journey together.

MaryAnn’s Family Bill of Rights

Staff who care for the elderly, especially the frail vulnerable population that has dementia, are the greatest people on earth. They take care of our loved ones and provide compassion and care “24/7.”

Throughout nursing care/memory care/skilled care facilities are posted “Residents’ Bill of Rights and Responsibilities,” which outline the expectation of residents. Nowhere did I see the rights of the families who spend long hours at the side of their loved ones, sometimes watching them slip slowly away from them, until their final breaths. After spending months being with my mom, MaryAnn, in a memory care unit, here are my suggestions for caregivers when dealing with families:

1. Don’t treat elderly people like they are children. They have endured many many years of hard work; this is a time they should be treated like wise, priceless individuals.

2. Don’t treat elderly people like they are objects. Shouting at them and pulling them around by their clothing is not humane; they most likely are some one’s most priceless gift, treat them with loving kindness.

3. When you enter the room, first notice what the person is doing. If he or she is resting, exit with quiet respect. If family is present, don’t make the family invisible by not making eye contact and ignoring them.

4. When the fall alarm goes off, have a sense of urgency when you respond. We as family members can hear it ringing in the hall and are afraid some frail person may be hurt. Laughing at the desk or making light that the alarms are going “off again” is neither funny nor reassuring.

5. Don’t complain about anything. We don’t care if you are short staffed, the computer doesn’t work, you can’t find what you need, etc. Family members don’t want to hear your complaints, no matter how valid they may be. We want the room filled with as much love and tenderness as possible.

6. Don’t see the family’s involvement as meddling in your work. Some people can only cope with the loss of their loved one’s identity by trying to feel in control of a world that feels like it’s eons away from everyday reality.

7. Determine the families’ energy level before you make a high-energy entrance that may feel chaotic or disrespectful to others. Your energy level should match the resident’s and family’s. Know when to laugh and when to be quiet; the emotions we feel vary from sweeping sadness to gratefulness just to have our loved ones with us one more day. We appreciate when you know where we are in the spectrum of emotions. Meet us where we are, not where you are.

8. When you care for the elderly person with kindness and compassion it is the best gift you can give any family. We worry all the time; we carry guilt, remorse, sadness, regret and many other emotions. Your ability to make our loved one smile and feel content, gives us unbelievable peace.

9. Remember we are grieving. Our loved one is no longer our mom, dad, uncle, or aunt, as they have resorted back to a different time. Words cannot describe what it feels like when your own mother looks at you and doesn’t know who you are. Ask the family what they need, how they are, and what you can do for them. Sometimes just asking is enough.

10. At the end of the elderly person’s life, demonstrate concern for his or her family. Although you may think the family will be at peace to be at the end of their difficult journey of having a loved one with dementia, this may not be true. The realization that they will never have this person in their life again is overwhelming. Their emotional pain is internal, and there is no cure. Your kind words can soothe a breaking heart.

*Adapted with appreciation from Joan’s Family Bill of Rights (www.joansfamilybillofrights.com) by Barbara Lewis.

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