Paul's Heart

Life As A Dad, And A Survivor

The Power Of The Living Directive

There are two things that make us squirm to talk about, death, and how to prepare should something go wrong during an illness or injury.  We go through life assuming, or perhaps just wanting to ignore the realities, because, “that kind of talk is for old people.”  I know that is the way that I thought, even having gone through cancer.  I was immortal, or at least for as long as I could tell, for decades to come.

That thinking changed obviously in 2008 with my heart surgery, and the realization that it was likely I would face many other challenges to my health.  I could no longer make it about my age for my reason to put off the discussion of preparations.  I got lucky the doctors saved my life while I was in the grips of a silent killer, a “widow maker” cardiac event.

For the sakes of my children, I needed to not only have a will for if I died, but a living directive if something would go wrong with any procedure or any kind of event.  Time was not going to wait for me to get old.  For me, it was fairly simple.  I made it very clear, no artificial means to keep me alive, and not to let me be in pain.  I have had to make some changes in both will and living directive following my divorce, but I have kept everything pretty much the same.  I am not a complicated individual.

For others, this may not be the case.  When my father was in the process of being diagnosed with lung cancer, he made the decision to make me his medical proxy.  He did it for two reasons.  One, my extensive history and experience with medicine (in spite of not being a doctor), he knew I would be able to explain things to him clearly, as well as help him to express what he needed to have explained.  The other, having watched both of his parents suffer in their ends, he believed in me, that I would not let the same thing happen to him.

This came at a personal cost for me, because, being in that position, I could not allow myself to feel any emotions that might jeopardize anything my father wanted to happen, or not happen.  This loss of emotion admittedly makes me realize I can have quite a cold personality in situations like this, almost robotic.  But when my father was in his best mind, he made it clear to me, what he wanted, and what he did not want to happen.

If you are hospitalized, or having to go through any medical challenge like cancer, you are likely to face these life and quality of life decisions.  As I said, I have things in place.  But recently, I came across some information, once provided to me years ago, called “Five Wishes.”

This pamphlet is a very well thought out document, to help plan out the “what if” so that there is no mistaking what a person’s wishes are.  I know my personal physician has disagreed with my directive in that I have made it too simple, too black and white.  But it is how I feel.  Don’t get me wrong, I do not plan to be in that situation anytime soon.

Five Wishes is a form of living will that talks about your personal, emotional, spiritual, and medical needs.  The one thing that this form makes the author aware of, is that there are still some states that will not recognize the document or your wishes.  That is a big deal.

The first thing necessary to do, is like my father chose, someone to make decisions in the event he was not able to do.  This is a big deal because that representative has to put all personal biases and beliefs aside to respect the wishes of the patient, no matter who it is.  And that is a big deal, it does not have to be a family member either, as family members, not me in my dad’s case, can be too emotional when it comes to decisions.

I will tell you, the hardest part for me to get family and others to understand, was when the time came, to stop giving him access to certain maintenance medications (like for cholesterol, etc.).  Because legal decisions had to be made in his care, handled by my stepbrother, insurance changes to allow my father and stepmother to be in the same care facility, and the fact that he was going to die, made these medications unnecessary.  But other challenges would come if a serious illness like pneumonia were to develop or some other issue.  It was difficult for others to understand, there would be no treatment, to prolong his inevitable passing.  A simple concept, not to allow him to recover from one illness, to eventually suffer as the cancer spread causing more pain than what could have spared him.

There are a lot of other responsibilities that this advocate must take on.  Keeping the emotions in check is not only necessary, but unavoidable because of all of the responsibilities.

You should decide what efforts or treatments are done to keep you alive.  This is where my doctor and I sort of disagree.  The two most common terms you quickly become familiar with are DNR (do not resuscitate) or being put on life support.

With Covid19, this becomes a very difficult reality for me.  I have made it clear, I do not want to be kept alive on life support mechanisms.  But if I were to contract this virus, because of my frailties, there is more than a good chance I would end up on just that because of what the virus does to the lungs, which mine are compromised.  It then becomes a choice if the life support is used to save my life, versus sustain it.  But my directive says what it does.  Therefore, I need to avoid this virus at all costs.  Needless to say, a fatal end caused by this virus, your five wishes mean nothing.

Two other aspects or wishes pertain to the humane aspects of this directive, comfort or quality of life, and what is expected from others, especially loved ones.  From medicines to control pain, to location of where the passing might occur, and the overall atmosphere of those around the ill person.

The final wish deals with the patient themself, and what they want their loved ones, family, friends, and in most cases, their caregivers to know.  These can be kind words, actual gifts, perhaps asking for personal differences to be resolved before passing, and of course, post end of life plans.

No, this part of life is not easy to talk about, let alone go through.  And there is no minimum age that is required.  Though definitely as you get longer in the tooth, it definitely becomes a priority.

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