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June 19, 2020

Let My Story Be a Reminder

Starting the conversation about advanced care planning is hard, I understand. No one wants to think about death. In 2001, my parents divorced after thirteen years married, and nearly twenty years together. Part of their divorce agreement was that my Dad, a successful businessman, carry on all benefits for the sake of my sister & me. I never questioned this because I remember hearing the conversations. I knew a secure future was important to them so, I had nothing to worry about.

It wasn’t until I became a mother, and my health began to decline in my mid-twenties from a genetic condition that I remember the importance of advanced care planning. At one point, I felt certain that I would not live to turn thirty. I navigated this alone in private and completed the advanced care planning documents. The last thing I wanted to do is worry family. I knew the importance of providing my daughter with a secure, stress-free, future. Otherwise, this would not have been on my radar, I’m sure.

On July 9, 2017, I found myself celebrating my thirtieth birthday while overlooking the beautiful sunset across the bayside in Annapolis, Maryland. Shortly after, in the opposite direction, I see the full moon in all its glory. I find myself in the moment and present. I am happy and relieved to be alive. I survived what I thought I couldn’t.

Just a few months later, on November 7, 2017, my father passed away suddenly from a pulmonary embolism at the age of fifty-three. What’s happened since has been nothing but an avoidable predicament. Looking back, I shouldn’t have looked blindly to the reality of life. No one is promised tomorrow. I turned a blind eye to his stubbornness. It was a way for him not to face reality, and in turn, I accepted this because it kept me from facing reality as well. Ultimately, the patient advocate in me learned a lesson when I was not able to help my own father.

I had to search for his advanced care documents after he passed. What I found was paperwork showing that he had cashed out all his retirement while waiting the 3 years it took to get approved for Social Security Disability. I found credit card statements with thousands of dollars of debt on them, one still with my Mom on it. Also, documents that needed to be sent in for life insurance to be given to my sister and me, signed, sealed, stamped ready to go. But, they were never mailed, just lying in his file of other unorganized paperwork.

That life insurance policy ultimately lapsed a year before simply because he forgot to mail it. I found one of his vehicle titles in a boot. This was only the first of many issues like this I faced. However, no advance care documents were found or filed. Not even a living will, a document that we knew he once had. Due to this, the day after he died, I had to go to the county courthouse to file and become the Administrator of the Estate. I was the oldest of two siblings and was not working at the time unlike my sister, so I had to take on this role.

I was left to deal with many duties such as dealing with the funeral home, doctors, vehicles/DMV, mortgage, credit card, and other billing companies. I had to organize everything to be moved out of his home and sell everything. It all needed to be documented through the estate since he had debt, no will and we would need to foreclose on his home due to it. It was emotionally straining and caused lots of arguments within our family.

That life insurance policy would’ve enabled us to provide him with a proper funeral and burial that he deserved, but that wasn’t the reality. My grandmother took over control of this situation since she had money. However, her choices did hurt when they were made without anyone else in mind when it came to his headstone and funeral services. His headstone reads, “I told you I was sick” – Beloved Son. 1964-2017. There was nothing about beloved father, grandfather, or any actual dates. Also, the quote is what my Dad told my Grandmother he wanted if he died anytime soon. Therefore, it was that or nothing.

I’m glad my Dad received a proper burial even though my Grandmother forced the funeral to be private with no viewing. You see, when you want to keep the peace within your family because you respect your father, you bite your tongue and move on. All because there weren’t any advanced care planning documents to be found.

To this day, two years and seven months later, I still receive daily calls, mailings and police serving me with papers regarding my dad’s finances. I have yet to find his living will and birth certificate. I can tell you the bit of unease, and time it takes to start the conversation right now is nothing compared to when it’s too late.

There is no better time to take action than right now as we are in a global pandemic. Let my story serve as a reminder to start the conversation before it’s too late.

I’ve listed three easy steps to guide you from start to finish.

1. Acknowledge that you have a say in your health care and that’s it’s never too early to make a plan.

2. Check out the National Patient Advocate Foundation’s care planning page.

3. Make sure you complete ‘Your Medical Care Plan: Three Action Steps’ on NPAF’s website.

Afterward, relax and breathe. You have become a hero to not only yourself but to your loved ones who will never have to go through a situation like mine.

 

Ashton Nesmith-Kochera is a NPAF grassroots volunteer.