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April Update

  It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.   Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We

November Update

 

A New Day

It's been awhile.  To be honest, I was on the fence for whether to continue blogging.  The original purpose of this blog was to write about travel, coffee, and beer.  Each of those subjects have taken a back seat in my life for the past six months.  Travel was to be a driving force for our early retirement, but it just hasn't worked out that way yet.

Turning 60 early this year also forced me to take a closer look at how my body was handling alcohol and coffee. An occasional problem with heartburn/acid reflux became more frequent.  I hadn't weighed myself for a long time and was disappointed when I weighed in at 191.

This fall, Julia went on a diet in hopes of losing a few pounds and lowering her cholesterol.  I decided to go on my own individualized diet and exercise program.  I knew that if I quit drinking on weekdays and exercised more, the pounds would come off.  Within a couple of weeks, I dropped to 180, and the heartburn went away.   I'm trying to stabilize at 175-180. 

To make sure that we stay on a healthy track, we are eating less red meat and more chicken, fish and vegetables.  I've found that one cup of coffee per day is just fine for me.  I'm still hiking at least five miles per day.  Julia does boot camp three days per week (getting up  at 4:50 a.m.) and swims the other two days per week.  Twice per week, we play pickleball together in local social leagues.  It's more fun than I thought it would be.


Devil's Lake State Park

 

The second piece of individual exercise for me has been wood harvesting and hand splitting rounds each day. 

Are you done yet?

So, I think the personal funk is over, and I'm ready to start blogging again.  My plan is to first document the rest of our trip out west from early last summer, and then a trip I took  to the Michigan's Upper Peninsula in August. We will see how it goes from there.   There are no trips currently scheduled, due to local commitments with Justin.  

Justin is finishing this semester at UW-Whitewater and then will move to Madison.  I'm proud of Justin for the four years that he spent in Whitewater trying to make college work there, but we've come to the end of the line in trying to make the available resources meet his increasing personal care needs.  

Before Justin started college at Whitewater, there was one personal care agency that met almost all of the disabled students' needs.  They stopped taking new patients just before Justin's first year and then moved completely out of that small market.  None of the remaining agencies filled that gap, focusing on private care for the elderly.  This year, every agency that we contacted  refused Justin due to "staff shortages."  At present, he has only two part time workers who moonlight after full time jobs.  That isn't sustainable, safe or fun for Justin.  He has raised the white flag. 

Julia is doing well.  Travel next year is one of our priorities.  I would like to hike in Scotland or Ireland. Julia has Machu Picchu on her bucket list.  If neither of those work out, there are Scamping opportunities nearby.  We've really enjoyed our short getaways to the banks of the Mississippi River this year.  Julia calls it her "happy place."  We've especially enjoyed the small towns on the Iowa side.  Iowa for natural beauty?  Yep.




Comments

MFH said…

Nice to get an update. I was wondering how you all have been doing.

Glad to hear you and Julia are continuing with exercise. At the expense of stating the obvious: it's critical if one expects to keep going. Over the last decade I've watched myself slow down, seen the subsequent weight gain and railed against the vicious circle. I'm at the point where I'm just grateful it works as well as it does.

Sorry to hear of Justin's caretaking difficulties. I may have mentioned how we blew through $250,000.00 over the last few years as Susan, Michelle's mom, slowly transitioned. I spent innumerable hours interviewing folks from Craigslist and following up other leads to find people. Albuquerque's wage scale (in 2015) was still back in the early '90s (or not even) and caregivers were getting $12.00 an hour...some good people too. But for full time care it came to around $8,000.00 a month.

Good luck with your plans and bucket list!
John said…
For people with significant assets, the need for round-the-clock care is a certain way to lose those assets fast. The money issue isn't a big one for Justin because he has no assets, no income, and is legally independent. There is a theoretical government safety net for young adults like Justin who are disabled to the point of requiring nursing home level of care.

In actual practice, there are still terrible problems that put his safety at risk. Managed Care organizations administering the program still were paying $12 an hour when we were told last year that no caregivers were available for Justin and that he would need to be put into a group home or nursing home (which costs the government significantly more but not the MCO). Justin transferred to a self directed program called IRIS where caregivers are paid about $15/hour, but he is responsible for their hiring, firing, and training.

Unfortunately, for Justin, wages have surged this year for entry level jobs. The pay for Justin's caregivers is less than the pay for fast food restaurant workers. Additionally, a new government oversight program to prevent Medicaid fraud now requires Justin's workers to be physically tracked by an app during the work day to make sure they are right next to Justin.

The good news is that Justin has become much more independent this year in managing his life. The bad news is that he often doesn't listen to his parents (like most 21 year olds), and we worry a lot about his situation. Everything seems to be falling apart to us, but he tells us not to worry, despite the appearance of the building burning down.



greg said…
Funk or no funk, that age thing will sneak up on the waistline!

Glad to hear that Justin is getting a handle on living independent and, just an FYI, sometimes I realize that The Daughter (40 this year ! ) not always listening to my expert and always correct sage advice wasn't such a bad thing.
John said…
I think it's the beer, cookies and ice cream that settled on my waist line, but I think you are right. I've got to be more careful about what and how much I eat as I age.

I hear what you're saying about Justin. I'm used to people not listening to my expert and always correct sage advice. Julia is especially good about that.

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