Watch and Wait

 I have noticed now that I'm more toward the end of my working career than the beginning, that certain skills I've gained along the way have come in handy in my personal life.

Right now, my job as a data nerd is to review well-child exams to ensure that all exams, immunizations, and screenings are complete.  Sometimes it's tedious, sometimes I learn things that adds to my Grey's Anatomy Medical Degree, and sometimes I learn stuff about the families that I don't need to know. 

 These records are very different than the patient summary that is given at the end of an appointment.

The structure of these records is (usually) this:

• Health History: any diagnoses, surgeries, procedures, relevant family history, allergies, meds.
• The patient's narrative (subjective), which is what the patient and/or family member reports at the beginning of the appointment.  
• Then comes the exam notes, which are the results of all the tests and vitals.  
• Then there is the summary from the doctor, reflecting on both the narrative and the results.
• Finally: any action plan. (referrals, prescriptions, etc.)

About a year ago now, I think, because it's all blurry, the parents agreed that I could register for the website where we could see my m-i-l's medical records.  She has since forgotten about it which is exactly why we did that.  They are horrible reporters and always seem to "lose" the visit notes between the office and the way home.

I don't usually look at her health notes but with this last trip to the E.R. I have been.  I reviewed the E.R. notes and the follow-up visit the following day and now weeks.  I wanted to make sure that we were on the same page and that there weren't any surprises for us.

I can't remember if I mentioned this before but while reading her records I'm all "THIS IS A WEB OF LIES"   I do know that I've mentioned before that caring for elderly parents is like raising teenagers. They are lying lying liars.  It's because they want to remain independent and appear healthy and all that, I get it.  But mygawd, the lies. (i.e. she's walking unassisted, she's "eating" properly, she's fine cognitively)

Now it's good to know all of this information that I have gleaned from the records.  However, it's extra frustrating because now we know what is supposed to be being done and also know that it's NOT.  Kevin and I have wavered over whether it's worse or better knowing.  I have had to remind myself/us/them that this is the reason WHY they live with us: so that we can help.

They both will tell you that they are doing good.  If I hear "I'm fine" never again, it will be too soon.  In fact, it just occurred to me, if she has a headstone I am going to lobby to have "I'm Fine" chiseled onto it.  Or "I'm tough", that's the other one that makes us grit our teeth.  It's clear that they're not fine and I think they know they're not fine. But being anything other than that will create the need for big changes.

Along those lines, we can't make them do anything.  We can just explain what the doctors said, we can remind, and we can try to support.  Lesson number 236 of Raising Parents: Say the thing then let it go.

Which brings me to the next part:  After this last fall, there were EMPHATIC discussions throughout the family. EMPHATIC.   Part of the cause of those discussions is that both parents were flip and nonchalant about this whole thing, (see: "I'm fine" "I'm tough") which was making everyone frustrated.  

While WE were feeling all the kinds of frustration with the situation, THEY were feeling judged and browbeaten.  I suspect there was a little embarrassment mixed in there as well.  Again, it's like parenting teenagers and having to decide how much independence to give them before they drive the car into the neighbors mailboxes.  (just an example, not a real thing)  And finding the balance of how to handle it when they do.

As a result, everyone took a giant step back and just stayed in neutral corners for a few days.  That's lesson #237 of Raising Parents - give space when it's needed, even when it feels counter-intuitive.  Kevin has had to stop with his daily "Is everyone alive" calls because they just end in frustration.  And example #eleventy of we're horrible children: She's not going to remember if he called anyway.

Also, to quote my BFF K "the 15-20-minute goldfish-mind reset" has also come into play.  The m-i-l has forgotten some of what has happened, including the post E.R. follow-up visit and it fades more each day.  This was confirmed in the visit notes "the patient is quiet and is having trouble answering questions; such as what year it is, what season it is, and what she ate yesterday."  Also, she will respond "I forgot" when you ask her why she isn't using her walker, etc.  

Gleaning anything to be taken from this post, these are the highlights:

If you can't/don't get a power of attorney, have a family member designated (WITH EVERY DOCTOR) as an advocate so you can call the doctor for updates, advice, etc.

Sign up for the online medical records with each clinic where the parents are patients so a person can read about what's actually happening.

This is the most difficult: Say the thing then let it go.  Back to the teen analogy: you can tell your daughter tens of times that this boy is trouble or they need to study for that chemistry final.  They're only going to listen so much and will still make their own choices.  Sometimes they are going to get hurt and sometimes they are going to fail.

Sometimes all a person can do is watch and wait.