Monday, September 22, 2008

Called Daddy yesterday.

He was just as confused as ever. Guess that miracle cure didn't work. Idjits, all of them.
The Nurse that answered the phone call was really quite confused herself...she asked me 3 times if I was asking to talk to my Dad. The way she spoke sounded like she had a gag in her mouth, it was really strange. More and more I feel I get sufficient evidence to prove my theory that the doctors and Nurse's are nipping into the patients drugs.
Once my Dad finally got on the phone, which took quite some time, he was very tearful and thought he was in Los Angeles. He asked me where I was living now. He also said that the Doctor's been telling him that me and brother "are in big trouble". It's stuff like that that makes me wonder if I can believe anything, or even bits, of what my Dad thinks or says...because that last part I would wholly believe if there was no reason for me to question Daddy's words.
Anyway, not much of our conversation took place in reality, and much of it was spent with me repeating myself several times because he couldn't hear me, and then about 10 minutes was used with me trying to tell him mine and brother's phone numbers...he ended up flagging someone down to write it down for him. And they were NOT nice. At one point, Daddy put the phone down and started walking away to ask if one the Nurse's could write my number down for him and I immediately heard her YELL, "HEY! What do you think YOU'RE DOING????". There was no asking nicely...it was zero to screaming in half a second. She wasn't much nicer to me when she was taking down my number either.
Why do these people take these jobs, and how is it that they qualify to be hired or keep them? Is there no one there that sees or hears clearly that supervises?
These things never change. It's just disgusting.
I know first hand just how frustrating it is to care for someone with my Dad's mental status...but these people are supposed to be trained...they purposely sought out this job...and are being paid to do it...then they get to take breaks and get to go home...to get away from the craziness as it should be. They knew what they were applying for when they took the job.
Not a whole lot else to report. I am still making phone calls about funeral pre-arrangements, trying to find EXACTLY what Daddy would want, making sure everything is cemented...which is hard because asking him questions isn't very fruitful most days.
I still don't feel at ease despite the fact that I am clearly getting some respite from Lewy. I don't know if this is just how I am wired...to be a worrier...but I am just not okay with my Dad being where he is and how this all happened. Lately my only real rest (in my head) from this all is to try to pretend I "don't know"...which doesn't really work, but sometimes I get a stretch of time when I don't think about all of this and feel tears start to form. I guess that's something.
I am hoping that nothing happens before Thursday, that is my Alzheimer's group day. The reason I say that is because I feel that I compromise a good 15-20 minutes of every meeting because SO much is always going on. Of course they ask and want to know what is happening...and we are ALL learning from my experience with this stuff for sure...but I need a break from myself and this. Even if there is drama in the next 3 days, I am keeping quiet at the meeting, let someone else talk.
I just laughed out loud at that.
Is that even possible? Ha.

Saturday, September 20, 2008

That "vacation"-sickness thing. And ranting.

Have you ever noticed that you can work your butt off and somehow get through all of life's nonsense relatively unscathed...but the second you finally decide that you will take a break or an actual vacation...you get sick? I've read articles about this in the past...it has to do with finally "letting go" and relaxing...and your immune system, being overwrought, is struck with the reality of your exhaustion and you get the first little bug that comes along. I know many people who have complained of getting sick when they finally take a vacation. I am assuming that this is what is happening to me. Not that I am on any vacation...ha!...but now that I am not under seige 24/7 by Lewy and actually have had some peace to have the option of sitting down for 5 seconds...I feel that I am more exhausted and in that "being on the verge of getting sick" than ever before. I feel horrible. I am in that state of 'about to get the flu' every day. Yes, it could be my stupid thyroid nonsense, combined with the weather change, combined with life in general, combined with stress and those harrassing phone calls from the VA combined with, well, everything and the above...but this is ridiculous. I am more tired than ever, how is that possible?

In other news, the phone calls have not stopped. The VA has left message after message about "urgently" needing to talk to me. I ignored them all until a few days ago when that Resident jerk-off Zambrano was leaving a message...and he said something to the effect of "never speaking to me before"...he'd said something like that before and I thought I heard him wrong...but no...he was really saying that he had never spoken to me before. These people are nutty. I've talked to this loon at least 7 times, probably more.
I think when the meds go out to patients it goes something like this: "Okay, Mr. Smith, here's your haldol...soooooo...that's one for you and one for me...and here's your Xanax...that'd be one for you and two for me...".
They are wiggedy-whacked, plain and simple.
This is the majority of the reason why, way back in the stone ages when I was in college... that I dropped my Psych major. After far too many classes with crazy teachers who would bring in their "highly accredited" speakers who were clearly medicated (or needed to be)...I knew there was absolutely no way I could handle having to deal with colleagues who were crazier than the people they were supposed to be treating.
So while that snickers bar Zambrano was saying he'd never spoken to me before, I couldn't help it, I picked up the phone. We got in a heated discussion about how they were harrassing me and Dr. Snickerdoodle thought he'd use his overly animated ego to try to trick me into thinking he knew some big words that I might not know. What transpired was me saying, "Listen, honey" and talking him down to his actual 3 year old mentality. I do not play well with people who have narcisstic personality disorder...people who have themselves SO high on a pedestal...who think that because they attended a few 1/2 hour seminars and had the money to buy a 3000-page medical book (that they never even read)...that they are superior in any way. I know that people like this use their false, "book-smarts" intelligence on the majority of people and get what they want...they are condescending to someone who may not know all the terminology or legal jargon...and trick these unsuspecting people into doing things they don't have to do. This doesn't work with me. I happen to know a few big words myself.
Then there was the call from Ackerman the Social Worker...this time her message was calm and almost pleading, but in a, dare I say...friendly voice?...that she "really, really just needed to speak with someone 'knowledgable' about a few issues they desperately needed to take care of". I'm not buying it. She can be nice (now) and plead and try to stroke my ego all she wants...I'm not biting. All the things she said she absolutely couldn't do are now transpiring...such as how she said they could never get Daddy Medi-Cal...well now they are signing him up...or how they insisted my Dad would never get transferrred to any VA Nursing Homes because his medical state isn't "service related"...but now they are waiting for his bed at one.
Funny how things work out, isn't it?
What really steams me, and I spoke to my friends at the Alzheimer's group about this, is how people like this bully family members until they break...most people will cave under pressure and won't stand up for themselves. I did that to an extent...caving in...I kept on going and going with these issues with my Dad until I was living on fumes...and this is why 30% of caregivers of every age die BEFORE the people they are caring for. Stress and exhaustion are no laughing matter and it is NOT in your head and not something you can pray away or wish away or ignore. This stuff will kill you. And people like the Doctors/Nurses and Social Worker at the VA are the people who will drive you to insanity or death...and they will not bat an eye about it.
People like my Dad DESERVE assistance from the county and state. We shouldn't be being harrassed to the point of not answering our phones because the VA and state will not take responsibility for what they had a part in. I know far too many people who are getting free benefits, food stamps, Medi-Cal, Unemployment and other aid when they do NOT deserve it or are defrauding the system with lies to get it. My Mom and Dad lived on wages just above the state's poverty level my whole life. We had NO medical insurance, and my Dad had limited VA benefits that he had to fight tooth and nail for. We did not get free anything because we looked too white or had $10 dollars too much...but neighbors of ours who made more than my parents who were more ethnic looking got every form of assistance and also had plenty of money to get their nails done every week and carry Gucci bags. Things are still like that. I love it when I am waiting in line at the grocery store when the person in front of me is decked out in runway clothes, has a perfect french manicure, is carrying the latest Kate Spade bag, in high heels, layered with jewelery...and my ice cream is melting because of the 20 extra minutes it takes to scan those damn WIC certificates. Then I go out to the parking lot and see this woman loading her free groceries into her souped-up Denali.
I will not feel bad about expecting my Dad to get HALF of what that lady is clearly getting.
And I could fight for benefits/state assistance if I really wanted to. Though I "look" white, I am actually enough American Indian and Mexican to have gone to college for free. I could get lots of free stuff if I were so inclined to do so. But I am not the type of person who takes hand outs because I was born with a certain heritage. If I was, I would also try to cash in on this "restitution" crap that some people claim they are entitled to because their family members 100 years ago were slaves.
Hmmm, well so were mine. And less than 100 years ago.
My Mom's family were slaves on a farm...they even had to take the last name of the family they worked for. Then the American Indian parts of both sides of my family had their land taken from them. Does that mean I am entitled to restitution? Back pay? To open my own casino? Hardly.
But my Dad deserves to have the state finally pony-up and take care of him. When my Dad served in Korea, he just wanted to hurry up and go home. He didn't make a big deal about the fact that seeing people die haunted him and gave him nightmares. So, because he didn't complain and cry about his experience, his numerous mental ailments were deemed "non-service related" which is far from the truth...so while I am usually not the type of person who expects something for nothing...which isn't really the case here anyway...I think that the VA should do what they should have done years ago. And that is taking responsibility for what my Dad's service did to him. NO ONE gets through military service without harm. No one. And it's time that we all acknowledge that. We all owe our servicemen/women our respect and gratitude...at the very LEAST, they deserve to have life-long, EXCELLENT medical benefits, if not medical benefits for their entire family to boot. Taking my Dad to the VA as many times as I have, I have seen barely 20-year old BOYS with missing limbs trying to get medicine and given a hard time about it because their VA benefits don't cover it. And I've seen some of these young men with pregnant wives or small children...I've heard them talking and was horrified. Some of these BOYS...who went off to war and left families behind...are now back and will probably never work again due to their injuries (missing arms, legs, head injuries)...and they receive very little monetary compensation AND they don't make enough to carry medical insurance for their families BUT most of them are too white or own a car that is worth more than $2200, so they CANNOT get Medi-Cal or any other state funded assistance. That is so far beyond bullshit. Most of these guys are coming home with serious injuries and many are coming home with head injuries so severe that there is no room for them in VA hospitals...so they are sent to the Geriatric Psych units...because the injuries they sustained have made their mental states as bad as somone with a dementia or schizophrenia. And yet they do not deserve full and complete medical benefits for life?
My God.
If you kill someone on the street just for the hell of it, you would be sent to prison (maybe) where you would get 3 complete, nutritionally balanced meals per day AND free, state of the art medical care.
But if you serve your country or work for a living and pay into taxes that are filtered into state funded "aid" to people who "need" it...and someday YOU need some sort of assistance? HA! Good luck because the state is too busy fumbling the budget deficit for all the people already getting those benefits who are here illegally, or are okay with defrauding and lying to get it. I can honestly say I do not know ONE person who is receiving any kind or type of county/state/government aid that is doing it legally, or who is even a citizen here. And the people I've known who are getting their "free" (at the low, low cost of their physical and mental health and stress on their families) VA benefits are given such a hard time about it that most of them do not even bother going unless it is a dire necessity.
And so this is why I am not budging. I refuse. Realistically, my Dad's life will be over in the next couple of years if not much sooner. The VA and state is getting off pretty cheap if you ask me. It's long overdue that they compensate my Dad for what he did for them. For us.
Off my soapbox now.

Saturday, September 13, 2008

Re-entering the real world.

I have not posted because I have been attemtping to re-enter the real world, sans Lewy.
This, I now know, is impossible, but I tried it.
What really happened was...while I was trying to get back to doing "normal", healthy things, like playing with my kids and running errands without deadlines or fear of screaming Lewy looming over my sweating head...I kept getting tag-teamed by the VA. Oh my.
There were Doctors and many, many nurses calling me...even the Social Worker there was in on it. For example, last Friday I was called 7 times within an hour by 3 people. I assume they planned it that way...they are trying to break me down, play with my emotions, play on my overly stimulated sense of guilt...to get me to come pick up my Dad and bring him home.
It started off with Nurse Nancy...who called me on her personal cell to, I kid you not, tell me that my Dad was "all better now"....they had CURED him...he was "as right as rain" and "as clear as a bell". HER words.
She said, with my Dad standing right next to her, that he was "just so sad that IIIII refused to come pick him up because there is just NOTHING WRONG with him anymore...he's ready for US to take him home"!!!!!!!!!!! Can you BELIEVE THAT?
I told her that if, indeed, they had found a magic pill or cure...that we'd better inform the media right away since millions of people will want this CURE for dementia they apparently have. It was unfreakinbelievable, the things this woman said. I said it was pretty unbelievable that she felt it was appropriate to say things like this to my Dad, and in front of my Dad.
The resident Doctor Zambrano also tagged me...saying more or less the same thing...then the Social Worker, this Laurie Ackerman...who said the opposite, admitting that my Dad was NOT magically cured...but that she was "able to talk ANYONE into anything"...like what? Talking me into coming to pick my Dad up? My consistent "NO's" frustrated her to no end.
I held my ground with these people, but when I finally got a hold of brother, the stress of it hit me and I broke down crying. They HAD played on my feelings and guilt. They KNOW I'm the one who clearly has no common sense when it comes to my Dad...and oh did they try to use that in their favor. But my exhaustion has pounded some sense into me afterall...and I did NOT allow them to get anywhere with me.
Long story short, what happened on their end is that the usual Social Worker (Ackerman) was on vacation and the one filling in not only dropped the ball on filing the Conservatorship papers...but did not even ADMIT my Dad into the facility properly. So, according to their paperwork, they were keeping my Dad against his wishes and illegally.
THAT is not my problem.
They went from being astounded that little ol' me had been taking care of my Dad all this time, to not caring who took him off their hands ASAP.
I've seen the VA number a dozen times on my caller ID since, but I've been screening my calls and only answer when it's my Dad...who, needless to say, is nowhere near sounding "right as rain". He's just as paranoid and delusional as ever.
The Social Worker got a hold of my brother in an attempt to sway him...she left a message basically saying she wasn't getting anywhere with me and that I sounded "stressed".
Uh, really?
When I went to my Alzheimer's group and told them the latest, they couldn't believe it either. Every one of them said to ignore the VA's calls, and to NOT visit my Dad until he was placed somewhere else and made a ward of the state. They all said the same thing...that if me and my brother went to visit Dad this weekend as we planned, that these idiots could easily discharge my Dad and say they suddenly had no bed available...and god forbid if we took him out to lunch as we probably would have...that when we came back, he would have "magically" been disharged as well. I would not put that past these people. Not to mention that I'm sure we'd get cornered by all of them.
Some of my support group friends also said they might consider changing their phone number or consulting an attorney in this case...if for no other reason than to handle the abuse these people are dishing out to my Dad by telling him they are just waiting for US to take responsibilty and come pick him up. They're right, it is abuse. You just don't play with someone's head like that...especially someone who's mental function is not normal, it's cruel.
Yesterday the Resident Zambrano left another message...it said that Dr. Fenn, the "real" (chief) Doctor...wanted to talk to me RIGHT AWAY. Too bad. I've left SEVERAL messages for this Dr. Fenn and he has ignored them. But now that HE has something to say apparently and they are dying to get rid of my Dad, via MY car, he wants to talk to me. Nope. Not gonna happen. And what really boiled my blood was that I could totally tell that the phone call was made on speakerphone...so I can only assume that several of them were in the same office, all dying to hear what I had to say and planned on tag-teaming me yet again...but all on the same line this time. I mean, why bother with separate phone calls when there's SPEAKERPHONE? They could all yell at me and tell me again how they're "trying not to pass judgement on WHY I won't take RESPONSIBILITY" simultaneously that way!
Anyway, inbetween all this nonsense, I am trying to catch up on normal life...which has really equalled me falling asleep at 6pm and not waking up until the next morning. And I'm still tired.
I also finally got some thyroid test results back and they were far from normal, again. So, another change in my meds...but at least it gives me an explanation for why I have been feeling like a complete slug everyday.
Other than that...we celebrated my daughter's 6th birthday and that was great...it's the first low-key, non stressful occasion we've had in years. YEARS!!!!! It was nice just being able to concentrate on the task at hand...which was making sure my daughter had fun. Amazing how the obvious slips away when your priorities are so tangled up in everything but the actual task at hand.
Life.
Lewy.

Monday, September 1, 2008

Just the daily...

We are in the midst of ripping out all the downstairs flooring that Lewy ruined. I couldn't have imagined just how messy this was gonna be...but it should be all over in a few days, right? Then we'll have new floors that haven't been stained with 5 different bodily fluids or flooded. Looking forward to it!
The "Resident" Doctor called yesterday...more nonsense about the Conservatorship...and that they don't want to do it. I basically repeated what I already told him...I can't take care of Daddy. He asked if we were abandoning him then...?
My gawd, please. I reminded him that I have devoted myself to making my Dad's life better (or trying anyway) for over 3 years...to the detriment of my own family and health in the process. Just because I am finally taking a step back and saying I need help...I am abandoning him now? He was trying to get names and numbers of "other" family members HE thinks should take care of him. I laughed and said good luck with that...and gave him no information.
Honey, if there were "other" help out there...dontcha think I'd have utilized that by now?
A nurse dialed my number for Daddy today. When I saw the VA number, I assumed it was more Conservator questions...but it was actually my Dad. For the first time in a really long time, I was really, reallllllly happy to hear his voice. Maybe that's awful to say...but I have been neck deep in Daddy for over 3 years. I have now had over one week of silence from Lewy's screaming and acting out...so I was able to actually enjoy talking to him...my Dad, not Lewy.
He sounded okay, actually...slurring his words a bit, but he was making some sense today...asking how we all were, how the kids were...but asked where I'd been and why I haven't visited "in months", though it had only been one week. I told him I was planning on visiting him next week once we got the kids back on their school schedules (they start back tomorrow).
All in all, he sounded good...at least, a lot better than recent months, and that's something...I'll take it.
Oh, and today is Nany's birthday. She's been gone a year and and 9 months. She would've been 93 today. I don't think Daddy remembered because he would've said something about it. I wasn't about to remind him. If there is a positive thing about this damn disease is that it's robbing him of the bad memories too.
Sigh...