Whew!  That previous post I couldn’t hardly type.  I thought it was me just being excessively tired, but then I realized it was the medicine I was on.  It was so bad I had to get off the medicine.  Part of the caregiver journey is figuring out our own health as well.

So 8 years now.  It has been way longer than expected.  You never know how long this journey will be and that’s really hard a lot of the time.  It’s hard to make plans financially, personally, and in every way possible.  But it’s par for the course.

Currently my loved one is in the weight loss stage.  That’s not a good stage.  Their body is starting to change in a not so good direction.  Not sure what this year holds but it isn’t exactly looking great. There have been many more health challenges in the overall picture–UTI’s, increased choking on water, legs have stopped working for the most part, increased confusion, etc..

I think back on 8 years and it has honestly felt like 80 years.  One day at a time.

It is a lonely journey in so many ways.  Even your very best friends don’t understand.  They don’t know why you ‘don’t get out more’ or ‘get on with your life and put her in a nursing home’ or other things.  It’s so hard to not have that understanding and it really doesn’t get easier.  You wish people would stop trying to tell you how to do things better, but they don’t.  It’s part of the journey if you choose to keep your loved one home.

Some things are better.  LBD has so many stages and the nice thing is they come and go.  Mom hasn’t done the “falling tree” scenario where she just falls over backwards stiff as a tree.  I think honestly that came from the medicine that she is no longer on.  Also the Lewy Lean is much more mild.  Again I wonder if that was part of her former medicines.  And Capgras.  Oh my, thankfully that is gone with only a few occasional returns.  That’s the syndrome where there are 3 of you and the one in front of her is never the one you are.  That one is exhausting.  She also is sleeping through the night which is a God-send compared to a few years ago when she was up night and day and very active, keeping everyone up with her.  Sleep zombie doesn’t even describe.

I am different in every way I feel like, in some good ways and in some bad ways.  The first 3 years you are one person, and then you change.  It seems like at 5 years you change again.  And at 8 years I’m not the same as 5 years in.  I have overall less patience with people and feel more aggressive.  I’m so internally tired people can’t even fathom it’s depth.  I set boundaries better though and and in some ways I’m stronger emotionally.  I don’t need to go out and save the world.  People would probably say I’m not so nice as that’s true.  Deep fatigue and people issues can really contribute to some problems.

These times too are very changing.  We are seeing the collapse of Western civilization.  Bad things are on the horizon and sometimes you wonder about things.  Being a caregiver is so all consuming that you just can barely take on the stresses of this world as well.  It’s all just a lot.

There has been so much sacrifice in caregiving.  I sometimes wonder if I’ll ever turn back into a normal human being.  And maybe I won’t.  Maybe it’s like those who falsely assume we will go back to “normal” once this virus ends.  It won’t.  The world has changed.  I’ve changed.  You’ve changed.

But enough for now.

I want to do a post of some of the more unique caregiving helps we’ve made.  Things others probably don’t have as we’ve rigged them ourselves.  But this is just a check in.

8 1/2 years in.