What are You Waiting For?

Three months ago I wrote my last blog post. Things are certainly different now.

Over a decade ago, Andy’s dad was diagnosed with Parkinson’s Disease. Until three years ago, he was working and driving 40 miles to work. Until one year ago, Andy’s mom was still driving him around but having a hard time. Now, no one drives.  No one leaves the house. Charlie is bedbound most of the time and his wife just counts the minutes until she can sleep.

This is not a post about what it’s like to live with Parkinson’s. This isn’t mushy commentary on how it must feel to watch a spouse die. I’ll get to those things some day I’m sure. Tonight, the post is more of a venting of my own feelings.

If you will be offended by humor in light of death…don’t read. If you will be bothered with the crass reality of this disease…hit the “back” button.

Some abbreviations to know:
PD=Parkinson’s Disease
PWP=People/Person With Parkinson’s
PC=Personal Caregiver

Did you know that the mortality rate for people that care for a spouse or close relative who has Parkinson’s Disease is 60% higher than those who care for any other type of chronic debilitating condition. The majority of nursing home admissions for people with PD are the result of a caregiver’s illness or death.  Reaffirms my feeling that if we didn’t have Hospice care for Charlie….we’d soon need it for me and Fay.

Today I am just trying to find the humor in all of this. Six weeks ago, Charlie’s PD began to seriously kick his ass. Blood pressure changes uncontrolled by medication. Serious agitation which caused him to ask to die. I mean, crawling out of his skin and unable to function kind of irritability. Blood sugars generally run high since he’s diabetic…suddenly…he’s really low…really really really low.  Can’t walk without leaning sideways.  Pain in places he forgot about.  Seeing people and talking to people that aren’t there. Hallucinations.  Forgetting things like what he had for breakfast or where he was.

Two days ago he fell over while out of bed without help because he was cold.   He forgot he can’t walk anymore.

Ten days ago he knew who I was. Today he thought I was a patient in his nursing home.  Trouble is..he’s not in a nursing home.  He wants to know “Who’s in charge of this place. I need to make some changes here and I want to know who’s in charge.”

No one is in charge, dear. Only Parkinson’s. He’s in charge.

Sunday afternoon he visited an amusement park. He was helping the Merry-Go-Round operator fix the machine. It sounded like fun. Later that day he was at a football game in Williamsport listening to Dragnet on the radio.  He had a great time.

Yesterday he wanted me to water the flowers in his room. After that “please tell that guy in the other room that my legs don’t work, otherwise I’d do it myself.”

So, I cried while I laughed.

It sucks. It really really sucks.

He’s smart and intelligent and educated. It’s not fair.

But he’s also still 140 pounds of dead weight and my arms, legs and back can’t handle much more!!!

Thank God for Hospice and home aides.

Just can’t figure out what he’s waiting for. Nothing left to live for here.

I’ll have to find out who’s in charge of this place to let him know it’s okay to go.


2 Comments (+add yours?)

  1. Lisa
    Sep 02, 2009 @ 21:59:50

    I can’t imagine how hard this is for all of you. Keep blogging, we are reading.


  2. Rosanne
    Sep 03, 2009 @ 11:12:54

    I echo Lisa’s comment.

    You aren’t the only one to ask those questions, Audrey…there are times when life sure doesn’t make sense and doesn’t even seem fair either.
    Exhausted and worn out is still exhausted and worn out even when you love someone, no matter how you cut it. Thank God for Hospice caregivers!! We weren’t in your shoes and we still gained a huge appreciation for them.


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