Acknowledging my mortality out loud makes my friends uncomfortable. Life coaches, internet memes and country singers exhort us to “live like we are dying." What about those of us who do?
I'm nearly recovered from battling an infection that hospitalized me twice in the past ten days. The first time, my fever was so high my heart briefly stopped. The second time, I was found on my sofa feverish and raving. It became clear that I had been there for about 36 hours. My friends and family knew what to do; call 911 and grab the Red Book which answers every question they may not be able to answer.
Every wheeler faces those moments when the every-so-often UTI turns into sepsis, a bout of AD takes you right to the edge or a pressure sore goes south and things look grim. Many of us faced the reality of death in the first moments of our injury. I did.
Although I've always had a will, it was a septic event six years ago that caused me to get serious about my end of life planning. My only family member was my young son. How could he make the needed decisions that come with death – plan a funeral, sort my papers, clean up my estate? Who would decide if my organs should be donated or if I should be buried or cremated or put out to sea in an old wooden boat?
I got very serious and revised my will, created my medical power of attorney and my living will. I even met with a funeral director and created a plan' although I did not prepay. I went through all the decisions my family and friends will be asked to make when it comes time to actually plan my funeral. Now all those original documents live in a small document safe in my home along with passwords for everything from my computer log on to my online banking and bill paying information to my social media accounts. I review these documents from time to time to ensure that they remain current. The last time I made a major change was when my son became an adult. My next revision will also include a modest bequeath to the Reeve Foundation
or, if I should die without heirs, my entire (meager) estate.
I also created my Red Book; a 3 inch thick red binder in case I am unconscious or too ill to properly assist in my care. Page one contains my medical history including all my doctors, regular medications, allergies, base line vital signs. Page two includes the Reeve Foundation autonomic dysreflexia card
and the next page is the standing orders I hope an ER doctor will write upon admission including my need for an air mattress, to being regularly turned, the schedule for flushing my supra pubic catheter and my bowel program needs – these all require doctor's orders in the hospital. There is a checklist of the things I'd like to have available while in the hospital from my glasses to my tablet, phone and chargers and my shower chair. The next pages deal with my service animal and my rights to have her with me and when that's not appropriate. Then, we get to copies of my organ donor form, my MPOA, my living will and finally, my Last Will and Testament and my funeral wishes and other instructions upon my death.
I'm not fixated on my death but I am aware that my spinal cord injury adds a layer of risk to the possibility that I may die much younger than expected.
It's not made me afraid nor has this awareness of my mortality stifled my life. In fact it's made me bold. I no longer fear new situations to the point of avoidance. I reason: “I've already been broken, what's the worst that can happen?" Sometimes I can still get caught up in the opinions of others but then I remember that time is fleeting and I could wake up tomorrow with the UTI that ultimately runs out my clock.
I no longer leave the important unsaid waiting for a better moment. I've learned the hard way that those moments may not come. Just as the final days of vacation seem so much sweeter because they are nearly at an end, I personally find I have more appreciation of my day-to-day existence knowing my life is finite.
So, after another near-miss, I will review my plan again. I may update those letters of final goodbye. I may add a letter to someone who was not a part of my life the last time I reviewed my plan.
Although no one wants to contemplate the end of their life or loss of a loved one, I can think of little that will compound that loss and grief more than leaving a mess to be sorted through and tough decisions to be made at a time when decision making feels so difficult.
I have also found that having my estate tied up in a pretty little bow makes those moments of crisis easier. It's all in the red book, ready to go. It allows me to simply hold my son's hand and tell him what's truly important; how much I love him, how proud I am of who he is, how fortunate I am to have him in my life. I don't have to struggle to remember the name of my life insurance agent, I can instead remember my favorite moments from my son's childhood.
Most hospitals have pro forma living wills and medical power of attorney forms. Creating a will for a simple estate can, in many cases be done using online resources, although everyone would benefit from consultation with an attorney. If you've not yet done so, I recommend you consider your final arrangements in advance.
There are several ‘for fee' sites on the internet; I've chosen these free pages to get you started.
From USA.gov: Write a Social Media Will
From wikiHow: How to Create a Will
From Oprah.com: Suze Orman's Estate Planning Checklist
© 2013 Jennifer Longdon |
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