"I Don't Want to be a Care-'Taker'

“I Don’t Want To Be a Care-‘Taker’”

I’ve been thinking a lot about this lately and every time I read an article about caretakers for people with PD, I just well up with tears on the outside and grief and anger on the inside.

I don’t want someone who is a ‘taker’ of someone’s care.  I don’t want to need their help because of this thing called PD.  I watched my mom care for my dad who had a form of PD with dementia, supposedly caused by brain surgeries he had when he was 15 years old.  He fell, often, flew into rages from frustration over his body not doing what he wanted it to or his mind not working the way he needed it to.  Words would fail him, the ability to read - - one of his favorite hobbies, evaded him, his body wouldn’t move the way he wanted or it would fall, in spite of his effort to stop it.  Mom grew impatient with him, resentful, thinking he wasn’t TRYING hard enough to help himself.  Thinking he got mad too easily when he couldn’t carry his own drink to the living room without spilling it. She didn’t understand why he could do some things with no problem at times, then at others, couldn’t do them at all.  ‘He wasn’t trying hard enough’, she would say.  ‘He wasn’t paying attention to what he was doing’, was her feeling when he would fall.  Or, ‘He just wanted attention’, when he flew into his rages.  She became a prisoner of his disease the last couple of years before he went into a nursing home because of the care he was ‘taking’ from her.

I don’t want to have to be ‘taken’ care of,  to ‘take’ the care from my husband or kids.  At this point in the disease, I feel dismissed by them already.  I feel they no longer believe I am a contributing member of the family or to society.  I’ve heard from my girls that I ‘just don’t try hard enough’ to do the things I yearn to do.  I feel my husband thinks of me as a ‘needy’ person out of my desire for sympathy instead of the actual needs this stupid PD imposes upon me.  Do I want to ‘take’ resentful care from them when I need it?  Do I want to ask for care when I need it?  No.  And no, and NO…

Yet, I DO need help with things, especially around the house, and get frustrated to tears when I ask for help and get an answer such as, “Just DO it, Mom, you have plenty of time.”

So, things pile up, I get criticized more and more for ‘letting things go’, and depression threatens to set in and make things worse.

No, I don’t want to be a care-‘taker’ and I don’t want a caretaker, and it hurts and scares me when I read about all these ‘classes’ for caretakers to ‘cope’ with their loved ones with PD. 

I feel like I am an annoying shadow walking thru the house, thru their lives.  PD has become a ‘robber in the night’ that works in the daylight, too.  I want to put a sign on my head saying, ‘Hey, I’M still here - - I can still hear you, I am hurt by your overlooking me as a person.’  I don’t know how to get ‘back’ in the family, to be considered a useful member, one who still has wisdom (ok, I’d like to think I still have some wisdom J) and a lot of love to give.

I love my family with all my heart…  Maybe, that’s why it hurts so much.  Sometimes, more and more, I think my real family are those who have PD who don’t consider me a burden in their lives, who understand I’m not yearning for sympathy when PD robs me of the ability to do the things I supposedly should be able to do.

I know I’m absent from the Parkinson Meeting Room chat site often lately.  It’s selfish on my part.  I don’t want to be a ‘Parkie’.  But, I am, and I’m not dealing with it well.  Coming to chat with friends who have Parkinson's has felt like an acceptance of this PD in me and I JUST DON’T WANT TO ACCEPT IT…. 

I’m not rejecting these friends - - far, far from it.  I pray they know that. They are all beautiful people - - compassionate, caring, and hurting, too.  So, what keeps me from joining in?  Only those with PD really understand...

I HATE PD AND WHAT IT’S DOING TO this body of mine AND I DON’T WANT TO BECOME A CARE-‘TAKER’, I WANT TO GIVE....  Lord Help Me to GIVE...