Trying for Peace...

"I swear I was doing okay

I was doing so much better

I made so much progress

I was almost even happy

I don't know what happened

Something went wrong

And now I find myself gasping for breath

And I don't know when it happened

But I started losing my mind again

I think I'm losing pieces of myself

And I don't know how to find them.."

Backtracking a few years, you may recall Michael was diagnosed with Amyloidosis several years ago; a deadly thing with no cure but he was fortunate in that his amyloid decided to live peacefully in the back of his throat and leave him alone.  In all probability it was caused by Agent Orange exposure in Viet Nam.  Having tamed that, our life could have possibly been calm but PD reared its' head.  There is some thought that Agent Orange could even trigger that but probably not.  We're familiar with it since Michael's dad also suffered it.  The difference between them is his father was stricken  much younger than M.  Michael doesn't suffer much from tremors either as did his father.  

Many of Michael's difficulties with PD seem to be mental.  

At first, when Michael moved to Memory Care, he couldn't understand why he had to be there.  Ironically he had mentioned to me when upset that he should be locked up in a room and left alone.  We never imagined that would become reality. 

Our sons took the task of moving him on a designated day so M wouldn't lay the blame on me...that was their decision which relieved me.  

He was in a haze,  I think...for awhile at least...until he realized that he could not be allowed out without a companion.  He became very angry one afternoon and lost it.

Michael...

I've taken care of myself all these years; 

I can still take care of myself.  

Why can't I go out by myself when I want?

Vasca...

Because you get up and dress in the middle of the night and get set to go out.

You can't go out because you get lost.  

You weren't taking your meds and you weren't eating.. 

You'll feel better here.  I want you to be healthy and safe.  

As you've ascertained I'm not a psychiatrist so I said the wrong things...I had no experience and it was on the job training.  I've learned so much this year.  Something must be working, he's more calm about it now but he's told me many times he isn't going to live long...especially 'there'.  

If you want to know guilt...what I've written above is a way to find the real thing.  Dirty dog is what I felt like and at times I still do.  How could I have 'punished' him in such a cruel way?  Was it like 'it's either me or you'?  I was not his guard by any means...he's bigger than me and let me know I had no control.  He hadn't even recovered from my selling our car.  That was necessary to prevent him from endangering others/himself.  My bad he still mentions.  Time doesn't necessarily heal everything...not when he's driven since he was twelve.  

He has mellowed with time and beginning to participate in activities...just a little.  I've no idea how long it takes to adapt to the circumstances he's in.  Who knows but God.

He continues reading both the Wall Street Journal and Star Telegram; that's truly wonderful.  His stature is straight (the military in him)...his Neurologist is amazed at that among other things.  He tells Michael that among his PD patients M's tops.  Actually his tremor is unnoticed and insignificant...who would've thought that...surprised is the word. 

He doesn't hallucinate much now which is good.  However he has episodes of panic attacks; actually don't know what to call them.  Bad dreams?  

He's told me a few times recently about waking up suddenly not knowing who he was or where he was.  It's like this: 

"I swear I was doing okay

I was doing so much better

I made so much progress

I was almost even happy

I don't know what happened

Something went wrong

And now I find myself gasping for breath

And I don't know when it happened

But I started losing my mind again

I think I'm losing pieces of myself

And I don't know how to find them.."

Trust me when I say this very closely tells it like he told me...and it terrified him. 

Connie Carpenter-Phinney, Olympic Cyclist shared this in 2016:

"How do we wrestle with this beast?  

Living with an incurable beast like Parkinson's 

is very different from living with a terminal illness.  

This is a disease you're going to live with for a very long time.  

You really must make peace with it."

I began my blog as an encouragement to others.  I cannot say this post is encouraging; I don't see how it could be.

It might be just me, laying out what has been on my mind for more than a year.  My feelings...Michael's feelings as I understand them.  Should I share such thoughts?  Should I keep them to myself?  I've no intention of embarrassing Michael; it might be a little okay if I embarrass myself...certainly isn't the first or last time and I'm not too fragile in that regard...maybe a little but I'm still transparent. 

I can't say what Michael is thinking...I've no clue but as for me?  

I'm simply trying to make peace with it...and I so pray that God helps me.  

From my wide open heart...to yours,

Vasca