Thursday, March 17, 2016

They Mean Well - Execution is often the Problem

We are doing well.....but we've been smacked by a bit of reality this week. Maybe because Michael's second med has been doubled and we've had to be aware of effects it is having. Maybe because of the VA appointments....but certainly reality has been served up to us by folks who mean well.

We've had a couple of conversations with well-meaning people who tried to encourage and educate us about Parkinson's.  In both cases they had family members with the condition. The stages of the disease were highlighted, ending with "....and then he couldn't get out of bed, we put him in a nursing home and he died alone. But you have a long life ahead of you - at least 10- 15 years before this happens."

Um - Wow. WOW!!!!! I suppose that seems encouraging - though you are 70 and Michael's 55 - it doesn't seem so long if you think about yourself in his situation. Empathy vs. Sympathy....

Spring walks - good for what ails you
I'm reminded again empathy never begins with "at least," and "I" or "my" statements should be carefully evaluated to make sure we don't forget the audience we are trying to encourage.  I've heard a lot of "at least" statements this week...


We've processed. We realize  this is a progressive condition.  We are living FULLY PRESENT because we desire to make memories and experience as much as we can now. We don't need others to remind us  there are 3 more stages of this disease....."soon" you'll need a cane, then a wheelchair and then you'll be bed-ridden.  WOW - that's helpful to know - none of the doctors or neurologists have thought to share these stages with us. 

Poppies are back! 

Here are some conclusions we've reached: 
  1.  Not every patient progresses through every stage. 
  2.  We ARE at the start of this journey and need to listen to our neurologist who tells us to get out and chase our dreams and goals. 
  3. I need to keep trying to learn to pull the caboose, while we continue to save for a rig that will be easier for both of us  to drive. 
  4. I'd rather move into an assisted living center together, than stay in a big home alone.... the tiny home movement has great potential. Those decisions are in the FUTURE and can't possibly be decided now. 
  5. New discoveries are being made, research is on-going; we trust our neurologist, who belongs to a teaching hospital, to be abreast of the latest developments.  She tells us not to give up, not to make life about Parkinson's, to go travel,  we'll fight this together.... we are at the start....
  6. There is no need for us to focus 10 - 15 years down the road and let anxiety of the  future rob us of the present! 
  7. People mean well - they really do. 

BOO - Parkinson's; conversations meant to help which depress

YAY - Beautiful spring weather, poppies blooming, VA appointments getting done, no terrible side-effects due to med change, lots of family time, Michael is enjoying sermon prep for Sunday, we're two weeks ahead of schedule in School, lovely breakfast with Cheri and Benjamin! Life is good. 

*Note the photos have nothing to do with the subject matter of this post - other than we're enjoying spring walks interspersed with helpful conversations. ::snort:: We need to get out with real cameras and take some spring photos. 

I've tried very hard to keep my gift of snark in line during this post. I apologize if my tone seems snarky or harsh. 

6 comments:

Linda said...

My grandfather had Parkinson's for as long as I can remember. I was born in 1962, and I don't have memories of him without the disease (though I'm sure he wasn't laid low by it when I was born). All that to say, he died in 1984, and he lived in a house with my grandmother up until the day he died. He was never in a nursing home. They had 8 children who almost all lived in the area, so I'm sure that made it possible for them to stay there. But I would think treatment is better now than in the 70's. As you said, not everybody experiences the same thing. Hope this is somehow encouraging to you, dear friend.

Beth Bowers said...

Dearest friend of my heart, if it is true that Michael had P back when his tremor started, this is progressing SLOWLY!
You are incredibly WISE in not allowing a future fear (that may never materialize) to rob you of all of today's joy. The truth is, things are changing some, but you will get used to it, and it won't seem so hard or scarey in time. You two are doing very well. And looking at new RV'S is far more useful than deciding if you want to live in an assisted living center because any of those kinds of choices are FAR down the road, and don't really even need much consideration at this point. Maybe a passing discussion about what you might want eventually, like you would discuss desired aspects of your next S&B house. Do continue to celebrate each day. Soak up the precious times of the remaining younger gherkins and celebrate all today has to offer. You've got this, Gods got ya'll and its going to be a wonderful ride.

Beth Bowers said...

Dearest friend of my heart, if it is true that Michael had P back when his tremor started, this is progressing SLOWLY!
You are incredibly WISE in not allowing a future fear (that may never materialize) to rob you of all of today's joy. The truth is, things are changing some, but you will get used to it, and it won't seem so hard or scarey in time. You two are doing very well. And looking at new RV'S is far more useful than deciding if you want to live in an assisted living center because any of those kinds of choices are FAR down the road, and don't really even need much consideration at this point. Maybe a passing discussion about what you might want eventually, like you would discuss desired aspects of your next S&B house. Do continue to celebrate each day. Soak up the precious times of the remaining younger gherkins and celebrate all today has to offer. You've got this, Gods got ya'll and its going to be a wonderful ride.

DeEtta @ Courageous Joy said...

Yes, friends. Your words are helpful! Full of hope and reality. Love you.

Renee said...

Sounds like y'all have been blessed with encouraging medical folks -- keep listening to them. Medical advances are made every day and each individual's journey with any condition is so unique.

DeEtta @ Courageous Joy said...

I think we have been,Renee.