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Old 03-12-2008, 01:08 PM
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MaracaSalesman MaracaSalesman is offline
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Join Date: Dec 2007
Location: Where the 40'N parallel and the US-31 meridian meet
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15 yr Member
MaracaSalesman MaracaSalesman is offline
Junior Member
MaracaSalesman's Avatar
 
Join Date: Dec 2007
Location: Where the 40'N parallel and the US-31 meridian meet
Posts: 23
15 yr Member
Default Love

Quote:
Originally Posted by befuddled2 View Post
I've delt with one such person who I was a caregiver to with the power of love and the need to be needed.

befuddled2
Thank you for your reply. It was short but very profound. I had never seriously considered the relevance of love. Also, the "need to be needed" thing is something to chew on... I think it's like validation, right?

I had a discussion with my parents/caregivers where to say the least, I was not very nice. I asked them if they truly loved me, and if their attitude reflected that. All I got was "we pay for your medicines, we pay for your healthcare, we give you food and shelter, what else is there to giving love?". My personal interpretation of love (note that their culture is Eastern and mine Western!) is that love from a parent to an adult son, love from a caregiver to the ill person, is manifested in a positive attitude and at least attempts at understanding the situation "on the other side of the fence". The caregiver may be unable (physically or fiscally) to give all the ill person needs, but at least should understand why the ill individual needs certain things.

Right now, it feels largely as if I have to put in a "purchase order" for anything I need. And argue with my parents, often heatedly. And say/do things I'm not very proud of (to say the least!) in order to get these "purchase orders" fulfilled. For example, my father replaced our dining nook lamp with something extremely obnoxious, bright, and shiny, which caused me to be blinded by V-shaped shadows from its burning bulb filaments (I have intermittent hydrocephalus resulting in photophobia, and the nook is central to the house and has to be passed through a lot, with lights on!). I asked him repeatedly to return it and use a more 'humble' fixture, but he firmly refused, despite the reasoning I gave him. So, the following ensued:

Me (holding very bright Mag-Lite LED flashlight behind back): "Do you know how looking at that ugly fixture in the nook feels like?"
Dad: "Yes, and you're overreacting, and don't know the value of money. I'm not buying you a new one... you're like a little kid asking for candy."
Me (whipping out flashlight): "It looks like *this*". (Aims flashlight at Dad, turns it on).
Dad: "You idiot, are you trying to make me blind?!?!"
Me: "Maybe I should ask you that, instead?"

The fixture got replaced within two days, with one that was a lot more tasteful (and had frosted shades so I wouldn't have to see the super-bright filaments) and the same price, might I add.

I think fortunately, my parents are coming a little closer to understanding my neuro-infection's symptoms (and also my high-functioning autistic disorder). My dad (who's 56) informed me that people his age tend to become very arrogant and stubborn. You have no idea how shocked I was that he admitted something like that. Normally, he's very controlling and doesn't understand how he could possibly do anything wrong (or how others could possibly be different from him!).

As for Mom, she does love me very much (like I said, we are similar in many ways and close in age!), but her issues (think borderline personality) make her say extremely hurtful things to me on occasion (e.g., "Go get a job, lazy boy!", in *THAT* tone of voice [n.B. - I would get a nice job and get the hell out of the house, but my fevers, intense body aches, and fatigue come unpredictably - I've been long looking for a job that I could work at home with.]). This is why I hide from my parents, especially her, whenever they're around.

I don't mean to hurt any caregivers on this board by "complaining" about mine. I have to re-emphasize that my parents are coming closer every day to understanding my situation, and are working to get their attitudes more appropriate (as I do the same!). Yes, there will be many months more of psychological (and for me, physical) pain, and most nights I'll be crying myself to sleep (and my parents probably will do so, too).

In any event, if anybody here has any advice I could pass on to my parents (or advice that I could personally use), I would appreciate it. Thank you for your patience, and befuddled, for your reply.
__________________
*Sorry if I take on the order of weeks to reply to posts or messages. I have verbal difficulties now and it's hard to write.*

Neuro issues: Peripheral (1999-) and brain (2002-) neuropathies w/parkinsonian syndrome, chronic infection w/fever (2001-, fevers became daily in 2006), major depression (1993-), neuropsychiatric bipolar disorder (2005-)

Other: Marfan-like disorder (congenital), VSD (congenital, fixed 1984), Existence (1983-)
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