How Can I Be a Good Advocate?

Most children who are fortunate enough to see their parents enjoy a longer lifespan will, at some point, find themselves in the role of a caregiver.

Caregiving can take many forms, but it will almost always require children to be an advocate for their parents, especially regarding health matters. As an advocate, children are faced with the responsibility of speaking or acting on behalf of their parents, whether that’s hiring caregivers, assisting with financial affairs or overseeing medical needs.

But knowing the right time and place to do this is tricky. You don’t want to do too much or too little, so how do you find the perfect balance?

You must evaluate the circumstance and situation, and let that guide your actions. Like with driving a car, sometimes you need to accelerate, slow down, or stop. Carol Cummings, an expert in the medical field, learned this first hand when she became an advocate for her 83-year-old mother during her breast cancer diagnosis. She uses her experiences to explain how to determine which approach to take.



Ask yourself: Do I need to accelerate, slow down or stop completely? 

Here's how you know which action to take:

Accelerate: taking a full advocacy role.  

Acceleration is appropriate when there is a safety concern and a quick decision must be made. Your parent doesn’t have time or the proper mental state to make an informed decision so you need to step in and decide for them. 

"When my mother (a lifelong smoker) was hospitalized for shortness of breath, the doctor and I both suspected lung cancer,” says Carol. “While we were waiting for the results of a biopsy, a consulting cardiologist asked my permission to do an invasive procedure to check out an aneurysm that we had been aware of for many years. I asked that doctor to hold off until we knew more from the biopsy and he agreed.”

In this instance, Carol did not discuss this decision with her mother, who was very ill and trying to get her breathing under control. Her mother did indeed get the diagnosis of cancer and never had the cardiology procedure.

Slow down: stepping back and knowing when to empower your parent. 

Slowing down is important when you are making a decision for your parent that might make them feel helpless or hopeless. An advocate should always consider their parent’s feelings, and sometimes this requires stepping back in order to let the parent feel some control.

“I was present when the doctor told my mother her cancer diagnosis. He presented her with options which included a chemo regimen that I knew would be hard on her frail body,” says Carol. “Without hesitation my mother made the decision to try the chemo. I knew her well enough to know that her decision represented hope for her.”

The chemo did indeed take a heavy toll, which alarmed one of Carol’s siblings. Carol had to advocate for her mother to that sibling -- reminding him that it was her choice and that the children did not have the right to take away that choice even though we may not agree.

Stop: knowing when enough is enough. 

Sometimes being a good advocate means being able to step aside and let go of a certain situation. It’s often one of the heaviest duties of an advocate, especially when it involves stopping medical treatment or intervention on a loved one.  

“During her chemo treatment my mother was hospitalized for pneumonia. While we knew she was ill, she was not expected to pass away during that hospital stay. But one morning I got a call from her doctor saying she had stopped breathing. The doctor wanted me to decide if he should stop performing CPR,” says Carol.

“While the family had not discussed a Do Not Resuscitate (DNR) order, my mother had mentioned to me that she wanted to ‘die fast.’ It turns out she had said the same thing to her doctor so we made the decision together to stop CPR and let her go. In that moment, I was acting on her behalf and carrying out her stated wishes.”



Become An Advocate Right Now

You don't need to be faced with a great crisis to start being an advocate for your parents. One of the best things you can do now is to focus on pre-planning. Start conversations early -- long before there is a need or a crisis.

Carol was able to be an effective advocate for her mother by doing the work long before her mother became seriously ill.

“We worked together as a family to implement advance directives that stated my mom’s wishes in the event she was seriously ill, and she named me her health care power of attorney –also known as health care advocate,” says Carol.

“I accompanied her to doctor visits and kept a list of her medical history and medications. We also established roles for my siblings, including financial management and general assistance with tasks like medications and shopping.”

Don't Stop Educating Yourself

Familarize yourself more with Advance Care Directives. And check out these related articles for helpful conversation tips: