Friday, October 20, 2017

Advance Care Planning- Prepare NOW!

Making decisions in health care and ethics.

Why prepare?  Prepare for the unexpected.

It seems we often go through the motions of preparing for unexpected life events without really believing that they might happen.  Investing the time or energy, or thought required to be adequately prepared for something serious illness is not always at the top of our to-do list.  We may not have much money to put aside for a rainy day, thinking about life or health Insurance many of us may or may not have.

 How often do we complete and sign off on these documents, only to file them away and forget about them with little, if any discussion with loved ones impacted by these decisions? Because some of these discussions are not easy, it is common to want to avoid them.  I know i did.  It was a good time to honestly sit down with my family, because in my case (AIP) my attacks were changing and increasing no matter what we have tried and with age other things in the body, honestly do not get any better.  So no more excuses, its time to be honest and talk and think about the options and be prepared.  

The worst thing you can do is NOT BE PREPARED!  
Speaking from experience when one of my parents passed away unexpectedly, their was nothing really written and sealed as to their wishes, and after things, home, items what to do with them and how.  It caused a lot of stress to take that upon and in my case having AIP and stress is a big trigger for me.

That's why I want to talk about this.  All of these preparations are important in ensuring that our choices and wishes are honored through-out life.  It is very clear that preparation, however, without discussion can often be inadequate and incomplete.  

When sick with Porphyria we already feel defeated and are extremely sick or in so much pain we still have to be very alert and our own advocate.  Confronted with multiple decisions regarding our healthcare, both patients and families can be overwhelmed.  When discussions have been part of the preparation , it can ease the burden of decision making, reducing the stress for loved ones, especially when a crisis actually occurs.  

When we have the opportunity to share our health care goals, our wishes, values and that which gives us quality of life, with our loved ones and our professional caregivers, it becomes easier to make the necessary decisions if that time should arrive.

Remember the importance of those difficult conversations and consider them a part of your health care discussions and decisions today.  

At first,  I personally had to think about it, timing things out with my family members, choose the time.  I had to do it swiftly but also ask, am I ready to discuss it?  How will they react?

If you have not already done so i encourage you to explore Advance Care Planning.
It is a process to explore, understand and document your wishes for future health care if you become unable to do so.  Seek out a health care professional today and ask for a Health care document, ask for a social worker to help explain the document its purposes and how it benefits you. 

Preparing today will bring you, family and friends peace of mind.

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Judy Snyder Personal Story of AIP

JUDY SNYDER TYPE OF PORPHYRIA Acute Intermittent Porphyria (AIP) It was early April 1997, and I was truly enjoying my job as the...