Monday, May 28, 2018

You May Ask Yourself, "Well how did I get here?"

As you can see, I have not been active here on the old blog. I plan to change that. Or at least, at this moment, I think I will feel like writing and posting more often.

Part of my hesitation is that I stopped pretty abruptly and haven't had the strength (?) emotional strength, I guess, to fill in the backstory from there to here. I have many "pre-written" posts that I put together as our life was changing. I will probably post those at some point.

Last year, my sweet Jordan's illness began to move incredibly fast. I quit work and moved us to Wilmington to take care of him myself. Wilmington was more affordable and (according to my spreadsheet) we could make it (for a while) on just his disability. Our lovely daughter also lives there and I wanted to give both Jordan and D. the opportunity to spend as much time together as possible.

All good ideas. I knew because of the disease progression that I would not be able to care for Jordan forever. But I really thought I had several years ahead to care for him on my own. Sadly, I only had a couple of months. Many of the hard decisions became clear. The fact is, as he became less ambulatory, it became physically impossible to properly care for him. Just writing this is hard. Placement was not easy and required replacement. Medicare benefits began to be maxed out. Medicaid is the only way I can get him the care he needs. Nothing in SSI services or benefits goes quickly. So, there were months where I was putting financial band-aids on his care while I worked on long-term solutions.

There is little time to grieve when you have to continue to advocate for your loved one.

Getting his care in place is the most important thing I can/could do. But, it means I no longer wake up with him. I can't kiss him goodnight. The reality is I now live alone.

I live in a twilight zone of having him and not having him.

He is now in an amazing facility in Fayetteville, where he is getting excellent care. The care he needs was simply not available in Wilmington.

So, I moved back "home" and returned to work. It's familiar but different.

Look at that. I gave you a relatively succinct update.

Jordan - May 27, 2018
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again, after the money's gone
Once in a lifetime, water flowing underground 
And you may ask yourself, "How do I work this?"
And you may ask yourself, "Where is that large automobile?"
And you may tell yourself, "This is not my beautiful house"
And you may tell yourself, "This is not my beautiful wife"

Read more: Talking Heads - Once In A Lifetime Lyrics | MetroLyrics 

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