Hi all.

I guess this is my first thread on this sub-forum explaining my own personal caregiver role (which is grossly overshadowed by my role as someone who receives care!). I also have concerns regarding that latter role as a patient with dementia (see next post down on this thread).

First off, just to get this out of the way, my own conditions include a body-wide infection whose biggest symptoms are a parkinson-like disorder, hydrocephalus, verbal-cognitive issues, and, well, one hell of an attitude problem. At this time, the infection is in the process of diagnosis and timely treatment (but was allowed to progress unnecessarily for 15 months due to a misdiagnosis at a previous clinic. There's a reason the clinic is "previous"). I also have major depressive disorder, which I've had since the age of 9 (i.e., 1993).

But back to caregiving... my mother has severe generalized anxiety disorder (it's bad enough that she has had a history of crying out of pure panic). She also had some sort of explosive disorder when she was younger (say, 24, which is my age now -- I was 5 at the time!). She also has some form or other of pain disorder (perhaps RSD or other CRPS issue/s) that started when she unwittingly fell on her tailbone while playing ping-pong with me several years ago. Interestingly, she no longer plays that game.

In any event, I am able to give care to my mother partially since we are so close in age (not quite even 20 years apart!). I'm also more familiar with my mental illness (I admitted to myself that I was mentally ill in 1993, and she didn't do so herself until about ten years later). I have always had the opportunity to talk to her quite a bit, on the phone when I lived away, and now in person since I'm at home and unable to work for the time being. As far as caregiving, of course, I get to talk to her about her illness and how it affects her functioning, and sort of function as an ad hoc therapist when she can't see one (which is unfortunately all-too-often, her work hours don't jive well).

Back to my story... I do have issues with my caregivers (who at this time include Mom and Dad), and for this, I feel terrible. In my next post on this thread (call it a 'self-reply'), I'm going to talk about those and ask how y'all, as caregivers, deal with people who act as I do.

(P.S. - I would put everything into one post, but it'd get a bit lengthy and difficult to read, and even more difficult for my verbally-impaired mind to proofread!)

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.