By Claudette Roper

What is true advocacy as a caregiver? I spent nearly my whole life navigating the complex and emotional undertaking of a caregiver.  Although advocacy can present itself in many ways, one thing I have learned is that advocacy is built on trust. 

When many people are faced with caregiving, they view it in terms of something that has happened to them as the individual in need of care or as the caregiver. I am proposing a mindset shift. Caregiving starts long before a diagnosis. It begins with building a strong relationship that includes transparency, love, and respect.

Advocacy starts with trust!

My caregiving journey started in my teens, caring for my grandmother and included the care of my father, mother, and other family members. Although every situation was unique, a common thread is that each of them trusted me profusely, and I trusted them. 

My grandmother was the first to provide me with a powerful example of what advocacy looks like. She was upfront with her wishes, long before her illness, with my mother and me.  She openly shared her desires in reference to her quality of life, funeral plans, and the distribution of her assets.  I am thankful for her gift of knowledge and preparation! These tools allowed us to confidently advocate for her, right down to her last days.

In my early twenties, I was my father’s primary caregiver. That journey started when I noticed his voice changing and suggested he see his doctor. It turned out to be an indication of throat cancer.  At that time, I worked in the media, which allowed me access to some of the top medical experts on my father’s behalf.  That skill set ensured he received the best care as he battled that dreaded disease. 

Advocacy for my mother started with our open, honest relationship. My mom was my confidant and the person I trusted most in the world, and I earned that position with her as well. I witnessed my mother building a medical team based on their respect for her and her individual needs.  Eventually, she integrated me into that team as her most trusted representative.  That positioned me to discuss the addition of doctors, therapists, homecare aids, and legal advisors when necessary to carry out her desires at every phase.  My mother prepared me for this privilege and sacred walk.  

Advocacy is self-love!

Lessons in self-love came at an early age. When eavesdropping on one of my mother’s phone conversations as a child, she said she loved herself more than anyone else.  Later she explained to me that YOU are the most important person in your life. And that she could not raise me to be a remarkable individual and positive contributor to this world if she did not love herself foremost.  

Not only did I hear this, but it was illustrated in how she cared for herself.  I never heard my mother speak of herself in detrimental or disparaging ways. Even down to my mother’s final days, she would see photos of herself and say “beauty,” which she conveyed in countless ways. Mom was the embodiment of self-love.

Advocacy is creating a welcoming, safe space! 

When caring for my mother, my goal was always to ensure she maintained as much independence as possible. I watched her move from able-bodied to a cane, followed by a walker and finally a wheelchair. By the time mobility issues set in, I already had a chairlift installed that enabled her to go up and down the stairs with ease. In fact, I remodeled our entire home to make sure it was completely accessible long before the need.

Many battles and pushback take place with sudden transformations for the person in need of care. Our loved ones have a right to mourn the loss of their health and independence. We as caregivers must become active listeners with respect for their wishes at the forefront of all decisions.  Thoughtful shifts integrated over time tend to make many of the necessary changes easier to cope with for all involved.  Their comfort, well-being, and dignity within their living environments – physical, emotional, and spiritual – are a must.   

Advocacy is maintaining dignity!

Caregivers tend to exist on fumes, feeling tired, overworked, and overwhelmed. Just getting through the day without any sign of relief is an accomplishment. We may respond in haste, not due to a lack of love, but because we are physically and emotionally exhausted. Humanity becomes a casualty.  

Maintaining dignity looks like this:

• A gentle conversation on why a wheelchair would benefit them as opposed to a walker when going to a concert. 
• Making their favorite foods or reasonable substitutes in forms that they can still enjoy while aware of individual issues (e.g., dietary restrictions, swallowing, digestive, mobility).
• Advocating for their right to enjoyment with appropriate accommodations beyond their homes in public spaces (e.g., restaurants, museums, theaters, restrooms, and parks). 

As caregivers, we must do everything we can to maintain the dignity of our loved ones in all environments.

Advocacy is handling business – theirs and yours!

There are legal matters involved in caregiving that many people can miss. This can include what documents are needed during a medical emergency, how to deal with finances when bills are piling up, and what end-of-life provisions are in place.   An action plan should be a priority for everyone while they are in sound health.  Here are a few things to consider with loved ones, preferably with the help of a legal and/or financial advisor:

• Long-term care insurance – covers a host of services not covered by regular health insurance. 
• Living trust – a legal document used in estate planning to address desires related to your assets (e.g., home, bank accounts, vehicles, etc) during your lifetime.  
• Healthcare proxy – allows you to designate another person as your agent to make medical decisions on your behalf.

My mother and grandmother gave me the gift of handling their business.  The impact of them trusting me with the knowledge of their wishes continues to be immeasurable. I urge you to do this with those that you trust and love. 

Giving yourself grace as the caregiver

You cannot care for anyone else until you take care of yourself!  As Black women, we often feel we need to be outstanding at everything we do, and this belief can backfire on us at times.  We are indeed resilient and strong, but we are not superhuman. We must be able to seek out grace.  Have daily conversations with yourself that include “I did the best I could today. Tomorrow is another day.” 

Advocacy is also taking a hard look at whether you are the right person for the job and what that means. Do you need to hire help to assist with daily care or to clean the house?  Would another family member better manage finances or deal with the doctor?  If you are not the right fit, what do you need to do to become that? 

One of the most heart-wrenching elements of caregiving can be when family members don’t step up.  Know that you cannot care for a loved one on a stack of resentment because it will creep into everything you do.  Being consumed with what others “should be doing” removes the focus from the person that you’re caring for.  An intentional demonstration of joy is necessary to get your loved one through the life-changing challenges.

Say yes to those God puts in your path to fill the voids.  Yes, to the meals, transportation, an extra pair of hands around the house, or an offer to sit with your loved one so that you take a leisurely bath. I am genuinely grateful for the amazing village of supporters who stepped in and showed out repeatedly as I cared for my mother.  

We must be diligent about developing trust at the heart of all forms of advocacy.  Pray, meditate, and dedicate your energy to making the best decisions for the person in your care and you.

 Continue to follow our caregiving blog series at https://www.drjeanneporterking.com/caregivers-corner/