Sometimes you just need Instructions….

Okay, I’ll admit it, I usually try to bluster through everything, and try to get things right without reading the instructions.  Do you know what I am talking about?  You buy something new, and put it together and end up with 4 extra screws, and sit there scratching your head, wondering where they go.

Unfortunately in life, there are no instructions.  So, you sit there scratching your head and wonder where are the instructions.  I think if you have a Disease, it should come with instructions.  Forgive me for a few minutes, but I have been totally flummoxed by Parkinson’s.

When Momma was diagnosed 8 years ago, with the Disease, it was a very slow progression.  About a year and a half ago, I quit my job, because the progression seemed to be moving a little bit faster, and the Farmer needed my help.

When I quit my job, I did every known research, and I mean hours of sitting at the computer reading anything and everything I could find.    I talked to Doctor friends, and Nurse friends and Caregiver friends.

When Momma went downhill fast, I got scared, but slowly over the past year we have reached something that is called the “Plateau” stage.  Me?  I call it the “status quo” stage.

The only thing I have noticed lately are small things.  Momma seems to be more confused lately, which is attributed to PDD (Parkinson’s Disease Dementia).  Momma talks to a bunch of folks who are Dead, and expects me to answer them when they are talking to me.

I have noticed Momma seems to be a little bit weaker than normal.  I will say, My Momma is a fighter and refuses to give up.    Sometimes, she seems so strong, and at  other’s, I think a little wisp of wind would blow her over.

I will say though, some of the “other things” that are happening I am not a fan of.  (I’m about to be graphic here so shield your eyes), in the past 2 days, I have been pee’d on, (it was an accident and Momma was really sorry), today, when Momma was passing gas, well, it wasn’t just gas, and DAMN….I have figured out that from now on, I will wear my hair UP in a pony tail or a bun or something, I will wear gloves AT ALL TIMES, just because.

I never knew how hard it would be to be a Caregiver.   I never understood how hard it was to balance everything in my life and still be okay at the same time.  I think I have learned something about myself in this process.  I have learned that I will try to take care of everyone else, sometimes at the expense of myself.  The Farmer asked me recently, “Why are you sick all of the time?”.  I think it may be NOT just because I smoke, but also, because I am to worried about taking care of everyone else instead of me.

I have noticed a trend, so to speak, some of my friends that are Caregivers, do the same thing.  We tend to “take Care of” others, at the expense of ourselves.   I guess, I am starting to understand, that I cannot take care of someone else if I cannot take care of myself.  Does that make sense?

That’s why I need an instruction manual.  I might even read it…..

 

3 Responses

  1. This is amazing – we are totally on the same wavelength!

    1. I totally understand, and had the same thought earlier….

  2. and that is why I am where I am at right now………………….it takes its tole. you can not be a caregiver without being involved day and night, even if you are not physically there. your mind takes on a new level as you watch someone get better or worse. your heart gets so involved that it becomes like sticky fly paper. it is what it is, but now i have to stop and take care of me. taking some space a way from Al and healing myself before i want to be on the same path he is headed

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