logojpg-01.jpg

Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

Do you have your papers ready?

Do you have your papers ready?

Papers, what papers are you speaking of? It was quite the mind-boggling question when we had the initial conversation, our first visit actually, with the neurologist.

Enter the decision of deciding how you want the end of your life to be.

Our physician is amazing. He's been forthright during this entire process and for that, we are very appreciative. He asked for the paperwork because, in his experience, he's had too any patients express one end-of-life plan and when in the midst of the drama, the family goes back and forth and back and forth and ultimately, the patient is put on life support until another decision is made. As our physician said, "I hate seeing the family struggle with the decision, but yet the patient conveyed to me what they desired for the end. It's too bad they the patient didn't discuss "the end" with the family. They're usually tired , emotionally and physically, and ready to be done. Unfortunately, without that paperwork, there's nothing that I can do."

Bear with me a minute while I digress. I remember as a small child my parents having the whispered conversation about my brother who was in a coma from an embolism that came to be after a surgery. They were discussing "should we disconnect him? Is it our decision to make? He's just a boy ..." They were discussing ultimately going to court and have the judge make the decision based on the information provided by the physician - my brother's life support would be disconnected based on no signs of life and no positive future outcome.

Scoot back to present time and we're having a discussion with the neurologist on what my love's wishes would be "at the end". Really makes you think, right? "Do you want any life saving measures?" "Umm, like what, exactly?" "Do you want us to keep you alive with artificial means?" "Umm, no, I don't think so..." "Breathing tube?" "No ..." "Feeding tube?" "Umm, no ..." "Feed you pizza through a tube?" "Who's pizza?" "Giordanos or Piece?" "Umm, still no. Not even Beef Wellington and I totally want beef wellington before I die ..." "Okay, so no nutrients through a tube to keep  you alive ... you could live about a week with no sustenance." "Yep, I'm good ... nada, nothing, the big zero, please."

This disease is ugly and unpredictable; it sometimes moves in leaps and bounds, or waits in dark cover until you're comfortable and then "BAM" (imagine Marisa Tomei in My Cousin Vinny), you've jumped (or been thrown) forward into the dark abyss and are dealing with things you've never even imagined.

Enter the DNR (Do Not Resuscitate) form and the Durable Medical Power of Attorney  (designating someone to make medical decisions for you in the event you cannot). The DNR, or POLST Form in Illinois, states exactly what you want and don't want for life-sustaining medical treatment. Trust me, it's a very daunting process but I appreciate our physician pushing us in the direction to really sit down and talk out what my love's wishes would be. Through conversation, he had very specific ideas on what the "end" would be ... no pomp and circumstance, just fading away into the sunset (I asked him if there was a song for that).

The downside to this decision is your loved ones. Not everyone is ready to accept the decision to be so cut and dry. "Don't you want to fight?" and "Why are you giving up?" are just a few of the questions that were lobbed our direction. The conversation was almost as crazy ugly as politics and religion at the dinner table. The decision is a very personal one with fear and guilt hovering just out of reach. Let's face it, as a parent, grandparent, and child, we never want to see our loved ones sad and fearful but yet we individually have to make the end journey on our own terms. No one walks in my love's shoes day in and day out. No one else has to wear his skin every day. It's always easier to live someone else's life for them. While I'm only facing this challenge superficially, I do know that my demise will be on my terms, no one else's.

Once the POLST paperwork is completed, make sure that the appropriate people have a copy. For us, it was notifying the local EMS system (just in case), the doctor's office, our executor, a neighbor, and finally, a copy on the back of both the front door and downstairs entry (as requested by EMS). They are happy to  listen to you if you say someone is a DNR, but in the midst of a medical emergency, they have a job to do and without that paperwork presented, they will most likely perform life saving treatment. No bueno!

So get your papers in order, people. Check the validity of the DNR form in your state as not every state is the same or has the same guidelines. Have discussions, think about what you want and enlist the appropriate person with that responsibility. I know that when my love is ready, he will say to me, "I'm ready" and while there will be no possible way to fill that void in my life, I will respect his decision to be done.

For the Illinois POLST Form: click here

Today is Rare Disease Day

Today is Rare Disease Day

Our frazzled reality

Our frazzled reality