The Caregiver’s Bill of Rights: A Powerful Self-Care Tool for Caregivers

Self-care is often easier said than done when you’re parenting or caring for a loved one with Down Syndrome or another disability.  As parents we put our children first leaving little time or energy for ourselves.  We tell ourselves “I’ll get to myself later” and “later” never happens. We face added pressures and expend more energy trying to give our children all the opportunities that are available to their non-disabled peers.

You’ve heard it many times but it’s worth repeating:  Self-care is not self-indulgent or selfish nor is it a luxury.  Self-care is a necessity and has everything to do with health and wellness.  It makes us better equipped to face challenges as we experience them, making us better caregivers.  

When we hear the term self-care we think of physical care.  Attending to your psychological, emotional, and spiritual needs are just as important.  It’s also important to remember that self-care doesn’t require hours but can be effective in small increments throughout the day. Everyone’s self-care needs are unique and personal.

The Caregiver’s Bill of Rights

One of my favorite self-care tools is the Caregiver’s Bill of Rights (originally share by Jo Horne in Caregiving: Helping an Aging Loved One).  This is more than a document or checklist: it serves as a reminder that it’s okay, and even encouraged, to pursue personal interests, take breaks, and care for ourselves the same way we’re caring for our loved ones.

So, what are the essential elements of a Caregiver’s Bill of Rights?  It includes identifying your personal wants and needs that aren’t currently being met, documenting them using a variety of “I have the right to” statements, and building and setting boundaries, including saying “no”, so that you can both protect and communicate them to others. 

The best part about this document is that it can be adapted and changed over time as your needs and issues change.  Everyone’s experiences will be different, and this list offers us, as caregivers, the opportunity to give ourselves more credit, let go of guilt or negative feelings, and ultimately help us be better caregivers.

Your Caregiver’s Bill of Rights might include statements like these:

1.      I have the right to ask for help.

This can be a tough one for those of us that are fiercely independent. It’s about both asking for help and accepting it when offered.

2.     I have the right to say “no” and not feel guilty.

Remember this is about what you need.  You have the right to set this boundary.

3.     I have the right to take care of myself.

This might mean a 5-minute routine or spending time with a good book and cup of tea.

4.    I have the right to my feelings.

Maybe everyone else has moved on and doesn’t feel the way you feel. You have the right to process, grieve, or move at your own pace.

5.     I have the right to privacy.

People are naturally curious and mean well.  Set aside and protect your private time.

What makes this process so powerful is that it’s personal and explores your specific needs on the caregiving journey. Establishing your rights can help you take back some control over your days.  Repeat them as often as you need to so you can communicate your needs to enjoy a more peaceful life.

Wishing you joy on your journey as you practice self-care as a caregiver!