Most of us who have the good fortune of seeing our parents live in to their older years will at some point find ourselves in the role of caregiver. Caregiving for parents can take many forms, but will most always require us to be an advocate. This was the case for me with both of my parents, most recently my mom who passed away a few years ago from cancer at age 84.
There are many ways we are called to advocate for our parents, but none more critical than in matters of health. This can take the form of hiring caregivers, assisting with financial affairs or overseeing medical needs.
To advocate means to act or speak on behalf of someone. And this can be tricky because circumstances can dictate different actions. So how do we manage this balance? I think of it like driving-we have to know when to accelerate, when to slow down, and when to stop.
- Accelerating, or taking a full advocacy role. Acceleration is appropriate when there is a safety concern and a quick decision must be made. When my mother (a lifelong smoker) was hospitalized for shortness of breath, the doctor and I both suspected lung cancer. 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, I did not discuss this with my mother as she was very ill, trying to get her breathing under control. My mother did indeed get the diagnosis of cancer and never had the cardiology procedure.
- Slowing down, or 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. 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. 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 on her, causing one of my seven siblings to question the chemo decision. I advocated for my mother to that sibling – reminding him that it was her choice and we did not have the right to take away that choice even though we may not agree.
- Stopping, or knowing when enough is enough. Making the decision to stop treatment or intervention when a parent can’t is one of the heaviest duties of an advocate. 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. 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.
It is important to note that pre planning is critical when a parent is aging. Start conversations early – long before there is a need or a crisis. My ability to be an effective advocate for my mom was made possible by the work we did long before she 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. 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.
If you have questions about Advance Care Directives, or how to start the conversation with your parents, read Kim Estes’s blog on planning for the future. It will guide you on the right path. Keep in mind, there is no one way to advocate for a parent. You will do the right thing if you keep their medical history, health and wishes in mind when making important decisions. Act with love and you won’t go wrong.
Be Well on Purpose.