What’s your plan?

By Leslie Lilien

Standing in the emergency room, they kept asking me, “What’s your plan? He may die. You need to sign these papers for surrogacy.”

My head began to spin. But I am already his surrogate.

Stunned, I thought, “My husband only fell and hit his head.”

Paralyzed? Quadriplegic? For life!?

Surgery?”

“Mrs. Lilien, what’s your plan?”

There are times when we all need help. Incidents happen. We are in shock, dealing with trauma and don’t know which way to turn. Even when the trauma has passed or when dealing with a chronic disability or condition, we want to rely on the people we think should have our back, not make a plan!

On Dec. 4, 2012, my husband, Richard, who was alone in our home, fell down and hit his head on his desk where he laid in a pool of blood, in and out of consciousness for a few hours until a neighbor found him.

I did not plan on my husband being a quadriplegic, so, no, I didn’t have a plan.

In that moment, life shifted forever, and I began the process of becoming the best advocate I could be for my husband. This on-the-job education became our lifeline and my calling.

Over the nine years since Richard’s accident, my advocacy experience and strength has grown. I find myself becoming the disciplined voice required for dealing with different personalities and opinions of doctors, nurses, case workers and hospital administration.

Just like my voice, my leadership qualities get a familiar workout, navigating the ever-changing health insurance conundrum of billing, codes and medical jargon; the fast paced, overworked environment; treatment and therapy research; and fi nancial decisions while ensuring the medical team is honoring family decisions with our patient’s care plan.

It’s heartbreaking that families have to deal with bureaucracy while under pressure or sick and tired in times of concern and stress.

Would you know what to sign and what not to sign when you are in the emergency room, hospital or at the doctor’s office? I needed help understanding and navigating when my family was in crisis mode.

Lifting the burden from the patient and easing family care burnout taught me to become a medical advocate with a clear vision, a good listening ear and a strong voice. And it blew open my heart’s commitment to help Richard and those who seek patient medical advocacy and emotional support so they can focus on healing.

Richard now has the best care in the world and is in the best place for his needs. I am called to be of service to patients and their families and to help educate others on what to do to prepare for a potential unknown medical crisis, long-term illness or simple medical and insurance issues.

I am passionate about bridging the gap between families and the medical system, helping patients and their loved ones navigate a chronic illness or crisis emergency care, with an understanding of patient rights and the complicated medical system’s tests and jargon. I keep them organized and updated so that they can stay focused on the most important element in this relationship, the patient!

My dream is to find other like-minded people who want to help me help others.

Who do you know? Do you have resources, health care, financial and legal referrals? If so, join me in my dream of making life a little easier for families in their time of need.

And, if you have a story to share, I want to be here to listen to you.

You can contact me at 239-404-5984 or email me at Leslielilienfamilyadvocate@gmail.com.