Pre-article note: I really like the date today! 02/20/2020. The lucky number for the day? 20…or maybe 02/20/2020/202020 in just (sort of) keeping with the pattern?!?! But I digress. Wait…can you digress before you have really said anything from whence to digress? Oh, forget it…off we go!
I trust that all of my fellow Cornbread Table residents are doing as well as possible. 🙂 I have been up to my neck in life and work for sure. Yesterday I went to an all-day HIPAA training. For those unfamiliar, HIPAA stands for “The Health Insurance Portability and Accountability Act of 1996” and deals with the careful transferring/protection of personal healthcare information. (A truly super exciting topic!!! 😉 ) Originally the need for this law was tied intimately to ***COBRA and dealt with sharing employee health records when you changed jobs. (The COBRA program allows job-changing employees to bridge the insurance gap between employers.) HIPAA was created with privacy in mind and is designed to be much more thorough. When you fill out paperwork at any doctor’s office or other location that holds healthcare info, you will be interacting with this important law, especially in privacy and consent forms. Today, whether we like it, we hate it, or we fear it, HIPAA does a great job of providing incentives and safeguards for keeping healthcare info from falling into the wrong hands. My employer is very serious about this kind of privacy!
Sitting in the session yesterday got me thinking a little about our topic. (Go figure….) Getting from a teeth-filled federal law to the teeth-filled monster of dementia is as easy for me as getting from my couch to a box of HoHos. I think of mom’s first 8 years of having “a mild form of dementia”. She worked diligently to keep her “healthcare information” (aka, her worsening condition), completely secure and hidden away from most people. She had safeguards in place to prevent herself from being put in awkward situations that would expose her forgetfulness (as do most with the disease in early stages). She probably assessed her situation, especially early on when she was first diagnosed, and she set up a structure to help her remain in charge. She exercised. She worked hard. She read and did brain games. Her diet was pretty darn good for a non-nutritionist: mostly local fish and fresh veggies, very little fast food/snacks, and lots of water.
A breech in HIPAA law, according to our presenter, can be rephrased “The loss of control of healthcare data.” Mom fought tooth and nail to maintain her secret and to maintain her health all at once…and it worked until it didn’t. It fell off of our radar for nearly a stinking decade. (Note: I wish we would have figured it out earlier, because there are some meds that help extend early stage dementia, easily the more “desirable” part. These meds do not extend life, but they rebalance the stages to the favor of the “better” parts.)
This tangents another related concept in HIPAA and in mom’s case is related: denial. Mom thought she had her situation under control, and was (sadly) very wrong. In HIPAA and in dementia, being honest and straight-forward is a much safer position than going it alone and trying to fix what is broken quietly such that it isn’t noticed. It takes a team to secure healthcare data and it takes a team to fight through this terrible disease. I have written many times and certainly will again of the need to gather together experts and loved ones to fight. Bottom line: Take care of yourself! If something needs to be hidden, have at it. However, going it Lone Ranger-style isn’t a good plan and will make it worse.
Update: Mom is still working through her sore problem. I will check on her again today to see what the team says. Stinkin’ disease! 🙁 We need to fight to #EndALZ
***”Wax on, Wax off!” comes to mind any time I think of the word COBRA.