Friday, March 17, 2023

Song of the Beautiful Journey

 My son Ethan sent me the link to this song.  He said the words expressed how he felt about us now as we move through these last days of my life.  In listening the song, I felt that, at least for me, it spoke to the almost 28 year journey I've had with my wife Stacey.  I also picture this song playing as we walk the backstreets of Sanibel Island before Hurricane Ian.  


I have posted the lyrics below.  Thank you Stacey for the wonderful journey.  Not every day is this beautiful, but more are than not and I wouldn't have it any other way. 


Watch the sunrise along the coast
As we're both getting old
I can't describe what I'm feeling
And all I know is we're going home
So please don't let me go, oh
Don't let me go, oh-oh-oh


And if it's right
I don't care how long it takes
As long as I'm with you
I've got a smile on my face
Save your tears, it'll be okay
All I know is you're here with me
Oh, oh, oh, oh-oh-oh-oh-oh


Watch the sunrise as we're getting old, oh-oh
I can't describe,whoa-oh
I wish I could live through every memory again
Just one more time before we float off in the wind


And all the time we spent
Waiting for the light to take us in
Have been the greatest moments of my life


I don't care how long it takes
As long as I'm with you, I've got a smile on my face
Save your tears, it'll be okay, ay, ay, ay, ay, ay-ay-ay-ay


Yeah, if with me
Oh, oh, oh, oh-oh-oh-oh-oh
I can't describe, oh, oh

Wednesday, March 1, 2023

Sorry, There are no Re-Takes

 It's Okay to have a bad day or make a poor decision.  Just don't do it on one of those days you are taking a test to determine where you will be binned (and thus how you are treated) for the rest of your life...

This happened to my mom a few days ago.  I am so sad, mad, and frustrated but there is nothing I can do about it.  As you may know, my mom fell and fractured her hip.  She was taken to the hospital where they operated and inserted a pin between her femur and hip bone.  They start physical therapy in the hospital, but once the patient has medically recovered, the patient must be transferred to a different facility for rehabilitation where one works towards having the skills to be home again.  In an 'acute rehabilitation' center, the staff works with 4-6 hours a day teaching the body how to walk and perform basic functions.  Focus is on the rehab.  If one is not able to do at least 4 hours of rehab, a patient is released to a 'skilled nursing facility' where they only work rehab with you 2 hours a day.  Focus here is on basic care.

The day (and days) leading up to the transition, my mom made a poor decision.  Although the nursing staff at the hospital explained that pain medication, particularly Morphine, should be used as a tool to manage pain, such that one could work on physical therapy (and meet the 4 hour minimums for acute rehab).  Based on her lifetime of experience, mostly dating back into the 1970s when it was common practice to be heavy-handed on pain meds essentially putting patients into a semi-stupor, pain meds were to be avoided if she could tolerate it.  So, where the average patient was using measured doses of morphine at targeting times, my mom was taking the occasional Tylenol.  Results were predictable.  She could not participate in physical therapy at the hospital to indicate she could meet the 4 hour pre-requisite.  So, poor decision leads to bad day leads to poor outcome.

My mom is now headed to the skilled nursing facility where their rehab staff will work with her two hours a day.  If life were fair, there would be some opportunity to work her way up to more rehab hours, possibly transfer to an acute facility, and eventually work to get home.  Life is not fair.  She can do rehab for those 2 hours but no more.  The facility only has staff to support the two hours (maybe less since staffing in elderly care has been in crisis since COVID).  The rehab folks may prescribe exercises and more walking outside the 2 hours.  However, she won't be allowed to do any walking independently (i.e. without qualified staff) due to safety concerns and regulations.  Also, there is no additional staff to be with her during these times.  There may be some ways to positively impact the situation if family were physically present and willing to strongly advocate for her.  Unfortunately, I am her only son, located several states away, and have terminal cancer.  

What other binning decisions are based on one-time only tests on a given day?

Update:  My mom settled in to the skilled nursing facility.  She is 'sort of'' taking our advice on the pain medication, though she still refuses morphine.  My mother-in-law drove up from VA to check the facility out.  It appeared clean and well organized.  Her overall assessment was that it was 'fine.' The team of nurses will do weekly evaluation on Tuesday as to my mom's progress.  Within 3-4 weeks, they will make decision on what's next - long term care (i.e. nursing home) or go home (if she is mobile and can go up and down steps).  Meeting the 'go home' criteria would look miraculous from where we are now.