Much is written about advocating for our care partners both outside the home with medical professionals and inside the home with family and friends.  Advocating usually takes the form of speaking up on behalf of our care partners/loved ones.  As I’ve considered this topic, a key to advocacy as a best practice is to ensure that not only are we as caregivers being heard by others but also that the dignity and self-worth of our loved ones is maintained as well.  It seems to me that creating a win/win to ensure both the best care AND personal self-worth of our loved ones are key to being the best caregiver advocates we can be.

‘Caregiving’ as a term can be a subtle directive that encourages many of us to think that we must GIVE CARE and that all decisions, care, opinions, etc. must come from us.  Such thinking cannot be further from the best practices of caregiving.

I’d like to offer a way to consider our advocacy that will maintain the self-worth and dignity of our care partners while ensuring that they receive accurate and excellent levels of care.  Consider these three levels of advocacy for our care partners:

1) interactions with medical professionals,
2) interpersonal interactions with family and friends, and
3) situations which test our ability to make aspects of care more dignified.

When we caregivers interact with medical personnel, faith and spiritual support providers, social workers and other professionals outside the home, we need to really examine the approach we take and become more aware of how we talk with these professionals and our care partners.  For example, do we include our care partners/loved ones in the discussion and decision making about care?  Or, do we make unilateral decisions, referring to our partners as “he” or “she”?  Obviously, there are situations when our loved ones can’t speak for themselves, but to the extent we can include them in our conversations, the more we build and maintain a feeling of dignity and self-worth which are key elements of healing.  To the extent we can put our loved ones “in the driver’s seat” regarding decision making, we help create a collaborative environment.  We set the pace and remind the professionals that our loved ones must be included in the conversation.

Second, we need to apply the same principles to our daily interactions with family and friends at home or play.  To exclude an ill person is to diminish even further their sense of personal capability and dignity.  Again, we set the tone and the approach when other family and friends are around.  When a family member or friend refers to the loved one as “he” or “she” or even talks as if the person isn’t around, we must step up and correct them with words/phrases like, “What do you think (name of care partner)?”  Use your body language and eye contact to directly address your care partner; your signal will provide a powerful model to everyone else.

Third, dealing with situations that have the potential to create embarrassment for your loved ones are the most challenging for maintaining dignity and self-worth.  Often areas of eating, toileting, and bathing provide the greatest challenge.   What are some ways to ease these concerns?

-Identify what the person CAN DO ON THEIR OWN.
-Ask the person WHEN they would like a bath, the bed changed, etc.
-ASK the person how they want something done and PROVIDE AS MANY OPTIONS  as are physically possible.  For example, “Shall I stay with you or would you like to call me when you are finished?”  “Would you like me to help you with _____?”
-Use music or storytelling to ease the mood.

Keeping the focus on the care partner’s needs is key to their choosing what will suit them best.  When we provide opportunity for our care partner to make choices, self-worth and dignity follow.

Listen to Margery Pabst host the Caregivers’ Speak radio show on, ‘You Can Do This! How Caregivers Can Break Through Negativity”.

Margery Pabst is eCareDiary’s caregiving expert and the co-author of “Enrich Your Caregiving Journey”, a book of tips of tools for the family or professional caregiver.  Margery hosts two BlogTalkRadio shows for eCareDiary:  “Caregiver and Physician Conversations” and “Caregivers Speak”.  The next Caregivers Speak! show on Tuesday, July 10 at 2PM EDT will discuss the issue of “Maintaining the Dignity of Your Care Partner” with a panel of caregivers.  You can access Margery’s information on her website at www.pivotalcrossings.com.

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