Dead Ringer.

Phone Ringer, that is. No one really called me back today...of ALL the calls I made yesterday, the only calls I got were from the Modesto VA Social Worker and of course, Laurie Ackerman...and I didn't even want HER to call me. Eric Andrews, the Modesto VA Social Worker called Ackerman for more info about why I was calling him in regard to my Dad. Laurie then left me a message saying that Mr. Andrews said that I am wanting to work with her on getting my Dad discharged, and she was oh-so pleased. Is she psychotic? Or is it because the bridge betweenthe check they wanted leads to me...you know, the money I don't have "control over" anymore...and this has stalled him being released.
Good.
Because they need to find him an appropriate place FIRST. Idiots.
Hubby and I went to Las Palmas this morning to check it out.
The place itself is okay. Yes, it's older, but it's pretty well kept up...as far as these places go. That was good. There is a foul musty stench, which was kinda gross, but I know that sometimes there are smells involved with these places. Yuck. But...pick your battles, right?...so I held in my disdain.
What got us was the fact that there are 3 or 4 areas where there are dozens of people (residents) smoking, and there is NO avoiding it. You absolutely MUST walk through the smoke from 10 smokers to get through one gate...then through the smoke of about at 6 more people to get to where my Dad would be...the area with the wanderguard system. I should have just left then, but Linda was quite nice and I didn't want to offend her. We went in. Again, the place is older so it had its issues. But then two very large dogs came right up to us. No. No. NO.
My Dad absolutely despises dogs. It was a dog that kept me from moving him to Season's in Modesto 2 years ago because it had a bed right outside the door my Dad would use...and the dog had marked its territory very, very well.
THESE dogs as Las Palmas were big. They seemed friendly enough...but I know my Dad. That would not fly and I wouldn't even try it. I have no doubt that some situation would come up where one or both of the dogs would annoy him and he would be too rough and push or hit one...and who knows what that could cause.
Now, if it was ONLY the dog situation, I may try to work something out with these people. But the fact that there is no entrance you can walk through without causing an allergic/asthmatic reaction? No. My Dad has emphysema as it is, and I was so completely saturated with the smoke that I showered and changed my clothes when I got home. Yes, it was that bad. We're not talking some random annoying smoke we couldn't avoid from some inconsiderate SINGLE smoker. I'm talking smoke clouds like that in a bar full of people puffing away. Isn't there a law that smokers have to be 20 feet from entrances? Not that 20 feet makes much of a difference...but these people are sitting literally in the way of the gates...and you have to pass through two crowds of cancer-inducing smoke just to get in. I already had cancer, thank you very much. Kill yourself somewhere else please!
So, Laurie's message also said that obviously my Dad is not being discharged now...with the implied undercurrent that it's my fault. Too bad.
And everytime they try to send him to another place that isn't qualified to care for him I will do the same thing. Weird how this all worked considering they were trying to say my Dad makes his OWN decisions, huh? These people are ALWAYS trying to scare you into doing things you do not have to do....threatening you with lies, trying to use some big word they assume you don't know. But I know a few things after being the caregiver of a person with Dementia, and I am jaded as hell. And more than a handful of times I have CORRECTED someone's use of a word they thought sounded good at the time. So go bully someone ELSE!
In the meantime...I will be searching on my own for a suitable place.
Please someone send me a miracle.
And by the way...what is it with these places filled with people whose room and board and everything is being paid by county or state funds...and yet they have money for CIGARETTES? The state bitches and moans about budgets and blah, blah, blah...but these places are packed with people on 100% aid/assistance...which means they are being GIVEN the money to smoke. Most of these people can't even shop or leave the residence alone, so that means an aid/caregiver is actually BUYING and BRINGING them the cigarettes. Most of these people have medical issues and/or mental health issues but they are given cigarettes. I do not get it. Shouldn't the focus be on getting these people healthier, to promote well-being, to teach them what toxins in their bodies can do? Yes, what a great idea to give a man with down syndrome an unlimited supply of cigarettes! What a fabulous idea to give the guy with one lung, who can't get out of his wheelchair, free cigarettes courtesy of their county aid check. Even better to give the guy with Alzheimer's packs upon packs of cigarettes considering he will probably light himself on fire or forget what he's doing.
Freakin' awesome.
Genuises everywhere, it's great.

Evil, Evil people.

Pretty much all week I've been on the phone. Enough time has not passed for me forget what this was like before, so it all seems to blend together into one long phone call with the same idiotic person.
I had been talking to this woman, Robin, at CEPS, the people who will thankfully be taking charge of handling my Dad's bills now...they are "the payee" now. Basically, my Dad's Social Security check will be deposited into their account and they will pay my Dad's bills from that. Did I already say THANK GOD? But back to Robin. She seemed very well-meaning and nice. She seemed to understand that though I am not in charge of *everything* in my Dad's life now, I am still extremely concerned about his welfare and want him in a place that is equipped to handle him and treat him well. She seemed to get that I felt like a failure for not being able to do it myself.
I was clearly delusional.
Robin informs me today that Villa, the place Whackerman wants to send my Dad, is ready to take him.
She says that I need to bring her a check for transporting my Dad from the VA in Menlo Park to Villa...oh, and about $600-700 on top of that for the cost of the rest of the month at Villa....TODAY. I didn't really have that time today, and I was more than a little concerned that suddenly this place is going to take him when they told me they couldn't handle someone like my Dad, but I also did not have time today to deal with this or even the thought of it. I told her I would make it there in the next couple of hours.
On my way there, I got that feeling. I decided to go to this Villa place to check it out and ask when I could bring my Dad's things (I have all his clothes, etc.)...and I also wanted to talk to that Lourdie woman again to see just why and what changed their minds into taking him.
The street scared me. Hellhole. Ghetto. Random tweaky, dirty people walking the street, a street paved badly and with no sidewalks...just dirt and dumpsters in front yards. It was right off the freeway.
I pull into the crushed granite driveway and walk up to the metal screen that doesn't shut. The door was barely on its hinges. I walk in. I see no one. I walk around inside unnoticed. There is no alarm, no wander guard system, no locked doors. I go in farther and a man walks in from a patio where I see a twitching woman smoking. The man is shaky and literally grunts at me. I turn around and walk the length of the building, still unnoticed. I see another man walking in, rubbing his hand furiously together, not unlike what the character does in "Slingblade". The place smells like stale smoke, urine, and musty...something. The floor is all jacked-up and uneven...JUST perfect for someone with balance and falling issues. Great. I keep wandering until I am beyond annoyed. I never found anyone that "worked there".
Instead of following my route to CEPS to deliver the check, I went home. I felt utterly sick and irate. Hubby informs me that Robin had called. Oh, and there's a message from Laurie Ackerman, saying that my Dad is being placed at Villa because they were "willing to give it a try"....and that she hopes that I am in contact with Robin because she DESPERATELY needs the funds to transport my Dad and for care and board. She's trying to sound ALLLLL concerned and as if she's someone who gives a rats ass about anyone but herself. I'm NOT buying it. I know her better than that.
I am SO pissed.
I call Robin and immediately say I'm sorry that I am probably going to be seen as difficult...but that Villa is completely inappropriate for my Dad because of the unlocked doors, etc....uh, maybe the fact that he could escape, walk down the street and end up on the FREEWAY?
Nice Robin turns into not-so-nice Robin.
She acts like I am personally attacking her, as if me saying this place is not right for my Dad is telling her to fuck off. She doesn't want to deal with me anymore. She gives me the number of someone with "Patients Rights" and I call them. From what Theresa with Patients Rights says, she seems to understand what I am trying to get at: that I am the only one actually looking out for what my Dad really needs and am the only one being realistic with what and who he is and what that means for someone caring for him. I am beyond done fooling myself into thinking my Dad can be peaceful and cooperative. I know that he has his moments, but for the most part, he needs, needs, needs, and he is not nice about it. He screams, he demands, he expects someone at his side within milliseconds of his call for help, or ELSE. Even Dr. Fenn told me last week that my Dad yells and screams curse words and racial slurs even when unprovoked...so WHY people like Laurie Ackerman are trying to sugar coat the truth is beyond me. It creates an unsafe environment for my Dad AND the people caring for him. Hell, even when you ARE informed about what he may do, it's not easy to deal with.
Anyway, Theresa refers me to a few more people...Marilyn Ricketts with the County Conservator whom I've already spoken to before, a woman who runs a place called Las Palmas (they have a wanderguard system), the Social Worker at the Modesto VA, and a nurse who helps handle people like my Dad...she is also through the Modesto VA.
I left messages with everyone, but did get a hold of Linda at Las Palmas. She was very candid with me about what I should do and whether her place would be okay for my Dad. I will go look at it tomorrow.
I ran some errands and came back to see yet another message from Laurie Ackerman, Social Worker from HELL. To sum up what she said, hoo boy...and don't forget to add the cheap-sounding, condescending-toned, east coast (Yenta) accent while you imagine this:
"I got a call from Robin who said that you had a conversation that did not go well, that you are not happy with where your Dad is being placed. Well (with a Hmmmmph! in her voice), your Dad makes his OWN decisions and has decided ON HIS OWN to go to Villa. YOU are not in charge of his money anymore and HE decides where he goes and he has chosen to go to Villa."
Go ahead and laugh. Hubby and I did. Ackerman has more mood swings than a man taking hormone replacement to become a woman. 'Nuff said.
But...Hmmmm. Let's actually analyze her two messages...
My Dad, who is highly demented, who doesn't know how to wipe his own ass anymore because he doesn't realize what an ass IS, doesn't remember his family half the time and thinks that pictures on the wall talk to him...HE makes his OWN decisions? And, uh, IIII am not in charge if his money anymore...? Does she mean his Social Security check that I couldn't hand over FAST ENOUGH? That money? Or is the only account in his name...that whole $2000 they've been BEGGING for access to? THAT MONEY? What the "F" are these people ON?????
Seems that the now not-so-nice-Robin had some pretty interesting and not-so-TRUE things to say to Laurie Whackerman then.
What is it with these people and LYING? Is that a job prerequisite: big fat liar?
And it also seems that Burning Bridges 101 is another prerequisite. They burned this bridge, that is for sure.
Tomorrow, when they inevitably call me asking WHY I haven't brought the check to cover the cost of transportation and for the room and board for the end of the month...hmmm...well, if as Laurie said...that I am "not in charge of my dad's money anymore"...then, huh...I think that writing a check from an account with MY money in it is a really, really bad idea. They can suck it. Laurie Ackerman went from begging for money, to telling me I am not "in charge of the money". Seems that Laurie Ackerman is also dipping into the patients meds over at the geriatric psych ward. And if she isn't, she should.
Tomorrow I will start my own search for a suitable place for my Dad. Again. And if what Whackerman said is true...that he "makes his own decisions"...then he will see that IIIII will find him a nicer place and will go there "on his own".
I am also going to find out who to send a complain to for this whackjob of a Social Worker.
How do people like this sleep at night knowing they are purposely putting someone like my Dad in harm's way? HOW?
Bastards, every one of them.
I spent the day fielding and making calls about my Dad when I am not supposed to be doing any of that anymore. I got ONE of my own errands done and nothing else. I missed my Alzheimer's group again...for the 4th week in a row...all because of the same crap with the same people.
Ha...Well, at least they're consistent.

Back from the Dead.

I didn't realize I hadn't posted since September 22! It's been THAT long? Wow. Anyway, I have basically been sick this whole time. My "vacation sickness" turned into a full-blown flu/cold, bone numbing pain and nausea. Not having insurance right now, I hoped that this was just one of my weirdo thyroid-related flare ups or something related, but I got increasingly more lethargic and then got some awful infection, which I tend to get from time to time with my horrible immune system. Anyhooo...broke down my fears of the cost of a non-insured Dr. visit and went in. Thank god my Dr. office knows and likes me, because I got a fat discount and free anti-biotics from them. I am feeling soooo much better. And I started this new vitamin regime too, so I have no doubt that's helping.
Okay, so onto the latest Lewy news...if I can even catch up to what's happened...?
There wasn't a "ton" to report in October...the harrassment from the VA subsided, and the calls I did get I screened with our re-instated Privacy Manager with AT&T. How did civilized people get on without Privacy Manager? WHAT a Godsend.
I only got about 2 dozen calls (quite a cut-back) from random people about placing my Dad, bank account information, the Conservatorship process, and also questions about whether what that nut/liar Social Worker Laurie Ackerman was saying about us was true...? Oh, and what was she saying, you ask? Only that me and brother want nothing to do with our Dad, how NO ONE has been able to reach me for 3 months.
!!!!
Yeah, all those harrassing phone calls were in my head. My husband and kids saw me crying and screaming on the phone to imaginary people. All the calls I placed to my brother about yet another person calling to "not pass judgement on why I won't take responsibility for my Dad"...yep, I made it ALLLL up. Uh-huh.
So, today...
I get a call from a very nice woman from this place called CEPS. ONE thing the VA did do was contact this place that will be taking care of my Dad's money now...CEPS will be handling the payee part of my Dad's care from now on. She tells me he's being placed on Thursday close-by and tells me the name of the place...Villa...it sounds familiar...oh yeah, that's because it was one of the almost 40 places I got denied from!!! I didn't say anything to her at that time because I wanted to make sure...a lot of places have the word "Villa" in them...maybe I was mistaken...?
Nope.
Called Villa up and the woman, Lourdie (sp?), knew my name when I said I was calling to find out admitting information about my Dad.
Yeeeeeeaaaah....so apparently the already known liar and hood-rat Laurie Ackerman has decided to spread yet more lies. She told Villa that my Dad does NOT have dementia, that he is quite pleasant, and needs little assistance.
?????
Lourdie said that she plainly told Ms. Ackerman that they can't care for someone with anything other than very mild dementia...and hello? My Dad is the Dementia poster boy.
There is NO way I am allowing that scumbag Laurie to lie just to rid of my Dad and place him somewhere who is outwardly admitting they CANNOT care for someone with dementia.
I then called the "head" Psychiatrist, Dr. Fenn, who is now caring for my Dad himself (no Resident Doctors doing it for him). I asked him if they had changed my dad's diagnosis...and of course he responded as anyone should...that I was off my rocker. We ALL know my Dad has dementia.
So Dr. Fenn says that he doesn't want to get "involved" (in whatever is brewing between us and Ms. Whackerman)...but that he JUST can't see how there could be any lying in this situation because when my dad's records are sent over it will state "DEMENTIA" all over it. I told him what Whackerman told Villa about my dad not having dementia and all he could say was "I really just don't know what Ms. Ackerman is saying".
Then I left a message for Whackerman. I told her about my conversation with the Lourdie at Villa, reminded her how she had told me how she can "talk anyone into anything" and that now I know she does it with LIES...that I know she did plenty of lying about me and my brother already...that I hoped she could act with a little more professionalism and try to place my dad somewhere equipped to care for him. I closed with the fact that I know she already has my number, that she can call me back but I won't answer...and that I have nothing to say to her because she's a disgusting, despicable person.
Oh...and as I was typing that last paragraph...Whackerman just called and left a message saying that OF COURSE she told Villa my Dad has Lewy Body dementia and that whomever I spoke to is misinformed. She said that he has NOT been wandering while there and that he had improved quite a bit while in their care. She also said that if for some reason Villa did not work out, that my Dad would be sent right back to the VA and be right back in her care.
LIES!!!
Once they get him out of the VA, they are done with him. I know this for a fact. Why do these people have to lie?
Uh...hmmm....but she is right about one thing: Of course my Dad can't wander at the moment...they have him so drugged that he apparently can't walk AT ALL anymore on his own. Everytime I call him, a Nurse asks me "if I'm someone important" because it takes them a solid 5 minutes to lift him and lead him to the phone. They literally told me that if I wasn't someone "important", they would say he was asleep. Nice, huh?
BUT anyway...the second he is placed in a new facility, he will inevitably be taken off the Haldol since no Nursing Homes I know of approve of that drug...and then he will be back to wandering again.
These people are sacks of spew.
So, Whackerman said that unless IIIIII do something to change things, that she is planning on admitting him to Villa...but that I am MORE than welcome to come pick him up anytime.
This is all just sickening. Every single day I am sick that my dad is at that VA facility. They are obviously heartless bastards over there and all they are doing is keeping him drugged beyond belief. What have I done? He was supposed to go there to get his meds straight, get the conservatorship process going and get placed in a suitable facility. THAT was the plan I made with his Doctor. I was supposed to be free from the "responsibility" of making decisions and onto being able to visit him, care for him...but not kill myself and neglect my own health, children and husband in the process. Instead I've just traded all that for even more assholes to deal with and my Dad STILL isn't getting adequate care. I can't give him adequate care, no facility seems to be able to that either, and the VA is run by monkeys.
Where do I go from here?

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.

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.

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.

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...

Contradictions.

Uh, yeah...so in a much earlier post, I wrote about how my Dad had been sent to the Geriatric Psych Ward over a year ago under the pretense that he'd be getting his meds straight, etc., then we'd bring him home...but what really happened was that they told me to walk away, that he was too far gone and that they were making him a ward of the state. I wrote how nothing had been even asked or explained, that they just proceeded without my knowledge and assumed we were abandoning him or that I was okay with that. At that time, I knew no more about Conservatorship than I do about the current budget "crisis" in California.
WELL...This time around...I do. I was called yesterday and asked about whether we'd spoken to anyone about Conservatorship and I said I had...and that I was not going to contest it like I did last time, since now I not only realize what it is, but have also thrown up my white flag in defeat of this disease or being able to care for my Dad.
Uh, yeah, no...they don't want to this time. They told me that IIIIIIIII needed to finance a Conservatorship...that "the family" needed to be the one that pursued this. Hmmm. If WE, meaning me, are not trying to BE the Conservator...why would III need to pursue anything? And what if I was dead...? Then what? Do they think they're going to track down my brother or sister and get them to do any paperwork that isn't in anyone's best interest and would shackle them to this like I've been? That's ludicrous and out of touch with reality. While yes, he is our family, our Dad...he is "just" our Dad. He is not my SPOUSE or CHILD. Everyone I have now talked to is in total agreement that I should've never tried to take the role of caregiver to begin with...I am "only" the daughter. Now, not that I totally agree that I "shouldn't" have tried to take care of my Dad...but when I obviously can't and have been sorely neglecting my own family and health in pursuing my father's 5 seconds of happiness per day...mustn't something give?...besides me?
I swear, everytime I turn around, I get a totally different experience/answer from the same situation. Are there no universal standards followed? What are rules for? Why so many contradictions with everything?
Whether it's dealing with bank issues or whatever...shouldn't there be some basic, universal rules and laws that EVERYONE follows? Why is it that every branch of bank and hospital and facility has their "own" rules and way of doing things? And why are we sent to lawyers to pay ungodly amounts of money for documents that are worth less than the paper they're printed on?
I never signed on as a Conservator or had the Trust papers officially filed when I found out that it would just make MORE work for me. No freakin' way. And since we all now know that the POA forms are looked upon as worthless...then what exactly is my place? I apparently don't have one unless it's convenient for the person saying so at the time. Either I am "authorized" or I'm not...I shouldn't half-ass be authorized at some places but not others when they don't want me to be. I give up. And I don't trust lawyers or this whole system, county and state government AT ALL. It's cracked.

So I had my Support Group meeting this morning. I hadn't been able to go for two weeks because of all the nonsense happening. I am so glad I made it today. I updated everyone on what's been happening, and got SO much input on everything...I feel a lot better now about this decision to not be the responsible one for my Dad anymore. And there was a woman named Rita who I'd never met who came. She has dealt with two parents in this situation and was an abundance of knowledge for me...she even chimed in on the whole money situation because she has been dealing with that as well. Although I have a massive headache right now from being stressed before the meeting, I do really feel a weight has been lifted...there is absolutely nothing like hearing other people telling the same story you are in at this very moment. Everyone had some input either about how I obviously need to let go of feeling guilty...to what they would do about the money...to the fact that they absolutely forbid me to sign ANY documents regarding my Dad's stay at the VA so I am not held responsible...and was even offered to be treated to a massage! My goodness!
I told you my support group friends were great!
I still have a lot to figure out and it appears that I will, yet again, have to meet with some sort of lawyer to figure out all this money nonsense...but for the moment, I am going to just be.

Dad, Psych Ward Resident.

After several calls to the place Dad was supposed to be, I found out Dad had been transferred the day after he arrived...to the Geriatric Psych Ward in Menlo Park. The Resident/Assistant to Dad's new Doctor called and told me that Dad was very combative and that though they had originally hoped to take him off all meds to see what they were working with...he is far too combative to allow that. He screams, tries to hit and generally wreaks havoc every second. Sounds a lot like how he was here at my house. They've got him on Seroquel, Haldol and Olanzapine...all pretty serious drugs...and all drugs that are not necessarily approved for use in the elderly with dementia because of the risk of sudden death. My god.
And apparently Dad needed an X-ray of his hand...the Resident didn't know exactly how that all came about...but it took several people to restrain Dad to even get the X-ray...which showed he had many small fractures throughout his hand. They have no idea how that happened. All I know is that in the last few weeks, Daddy has swung at so many objects, fallen, and thrown TV's...so it could've been any number of things that caused this.
I asked Mr. Resident Doctor Zambrano what he thought about contacting Dad or visiting...and he said I should ask the Nurse's since at least one of them is assigned to Dad 24/7 due to his combativeness. He said that they would be the best to assess whether he was having a good enough day to talk/visit. Really, that makes no difference...I don't know that Dad has any good days anymore...and considering we live a good hour and a half from Dad now, it would be an all-day trip to see him...a trip we'd have to plan in advance...and how can you "plan" for Dad to have a good day? You can't. So I guess we can call or visit at our own risk...and without the kids.
I think it may take me a while to get up the nerve to go...and I may wait until brother can go with me. I'm having a really hard time with all of this. I've been doing all kinds or organizing and cleaning around the house and yard...I mean, it's stuff that needs to be done anyway...but I am definitely using manual labor as cathartic therapy. Hey, if it works, it works. But is it working? I dunno.
I also had fun yesterday with the bank. We are trying to get Dad's Social Security check direct deposit nonsense switched to a new account, so that once the Conservatorship thing goes through, there will be this one, untouched account that has only ever had his SS check going into it. But no, hassled again. I got a load of paperwork and was told to call Social Security directly...which got me 47 minutes on the phone with an agent and no progress. Even though I went with Dad 3 years ago to the SS office to set all this crap set up, there was, of course, no record of this and so, of course, I am "not authorized" to do anything. SS doesn't recognize the POA forms. It seems that no one does unless you don't have one, then they want one. Naturally!
And, it seems that the bank doesn't have brother's POA form in the system either, which makes no sense since we both sat at the same desk on the same day and gave the bank our POA form...that has BOTH of our names on it. If they got the form with MY name on it...they automatically have my brothers name too...but no...so that needs to be done again. Seriously, how this world keeps spinning, I really don't know.

Adjusting to being normal?

I haven't posted because I am not used to this. I have nothing to report about my Dad.
I haven't called him since they took him because I know he's going to be completely confused and crying if I do, so I plan on calling the Dr. there today to see how things are going first.
The last few days I have swung between feeling completely exhausted and useless, to sad and depressed, and then full of energy that my body really isn't able to utilize.
I feel like I have failed my Dad and myself for allowing this to happen, for letting him be where he is.
YES, I know that common sense and logic (and everyone around me) tell me that I have to, for once, think of myself and my own family...that this situation was insane and that I could not go on like that anymore. I know all that. But it doesn't change that I still feel like I failed. And I don't get how everyone else can just go on like it's normal...is this normal? It's normal to be able to be happy while one of your family members is in a psych ward waiting to be made a ward of the state because you couldn't take care of him? If that is normal, then this explains why I am NOT "normal" and never have been.
This is not right, it's just not.

Just Another Day.

I slept some last night.
But I am frazzled, I have hives, and my skin looks like that of a hormonal teenager.
Stress. So much fun.
I called Palm Haven to ask if there was anything else I needed to sign to make it official that my Dad was not coming back...they seemed unsure when I picked him up the day before.
I talked with Christine, who was the first person I dealt with, whom I did all the original paperwork with, who was the one who initially sold me on the place.
She said she and other managers had NO idea what had been happening, or why I took my Dad out. She seemed genuinely mortified when I gave her just a handful of the details of phone calls I received...especially the fact that people kept saying it wasn't the right place for him, that he was being kicked out, etc. Apparently the Nurse who had yelled at me that one night and said he was being kicked out got fired. Apparently there had already been some issues with her tact in the past, and what she said to me was the last straw. I kinda feel bad that she lost her job, but clearly she shouldn't be in this line of work. It's stressful, hard, exhausting...and you HAVE to be able to perform under pressure. She definitely lacked those qualities.
Anyhooo...Christine said she really needed to find out who said what and why...that there is just no excuse for what they did. Unfortunately I was usually in such a sleepy stupor, I rarely caught anyone's name, so I wasn't very helpful there. She, like the Head Nurse (Matt) that I spoke to, said that their nurses are very well trained to deal with people like my Dad and that there should've NEVER been anything said about him being kicked out...that it sounded like the nurses just didn't feel like dealing with it...and she wanted to know which ones those were because they don't want people like that working there. Uh, yeah, I agree...although it's far too late for us, I hope no one else goes through this, it was hell. It's quite enough dealing with everything this disease brings...but when you find all these facilites advertising they care for people with diseases such as this and then they threaten you with being kicked out...well, it's more than most people could deal with.
I feel terrible today. My body hurts and I just feel, I dunno, like a live wire, but too tired to move. It's like an inner trembling.
I hesitate to call my Dad for a few days until he gets somewhat situated. I know they are going to take him off all his meds again to see what they've really got to deal with. But I am afraid that what they're going to see will equal him being medicated into a vegetative state. I know that there is no hope for him now...that he cannot ever have a normal day again, that he will never be anything but confused and paranoid and scared...and that his combative outbursts and even worse behavior during that "sundowning" time will mean he needs to be medicated to the point of being manageable...which basically means being a mindless entity that still resembles my Dad. This is what I have been avoiding, knowing that the time would come soon enough...but I wanted to try to preserve what tiny bits of lucidity he still had left. I know now that he is not manageable in any way anymore without medication...and that not medicating him just for the sake of 5 minutes of clear-headedness is not the right decision. I guess I prolonged it as long as I could, I dunno. Did I?
We're going a flooring place in a little while...we need to get a lot replaced. We already tore up the bedroom carpet...holy stench!...and hubby tore out the bathroom flooring yesterday...it was thoroughly soaked and smelly too. Dad had accidentally flooded the bathroom at least 3 times before we realized just how much assistance he needed in there. What's weird is just HOW much water was underneath. It's a linoleum floor, and our house is 3 years old, and the caulking seal was still intact...so I wonder just how it got that soaked...and it makes me worry that behind the wall is wet as well. That's not good.
Okay, more phone calls to make to get some of Dad's stuff organized.
Groundhogs Day, everyday.

Arrrrgh. Times Two.

Okay, no calls last night...but I took the phone off the hook so I don't know if they tried to call. It really irritates me that I have to take my phone off the hook to sleep...nevermind the fact that if an ACTUAL emergency happened, then I wouldn't find out about it.
SO...
My this morning Dad's VA Dr. called and said that there wasn't a bed available at the Geropsychiatric unit in Menlo Park, but there was a bed available at the Palo Alto Psych unit and they could admit him there and then transfer him when one was available at the other facility.
Okay, I think?
So I call the Nursing Home Daddy's at to tell them I'm coming to take him...to make sure he was awake, ready, etc. before I got there...and they tell me I CAN'T take him...that they need a Doctors order.
Huh?
I brought him there, admitted him...but I can't take him out?
3 conversations with 3 nurses later, they say they will call the onsite Doctor because HE has to give me permission to take my Dad.
I'm missing something.
They say that THEY are responsible for him, so that even if I wanted to take him HOME to MY house, they would have to give ME permission.
Uh, I didn't SIGN my Dad over to them, he is not their "ward"...he is merely a resident at their facility...that we are paying for.
Anyway, they say they'll "try" to get the paperwork done and contact the Doctor.
I say I'm coming in 30 minutes regardless.
I call my brother to see if there is any possible way he could come with me in case Dad gets out of hand. Hubby is home, but bringing him means bringing the kids...not an option. Brother said he could come! Yippppee! So I am going to pick Dad up then pick up brother on the way to the VA.
Then the VA Doctor calls back and says the Palo Alto VA just told her that the bed she was going to reserve was being reserved for someone else...but they're trying to make it official, so they'll get back to her...and that I should just hold on until she (if) she calls me back.
Ummm...so do I call the facility my Dad's at and cancel the whole paperwork trail and "getting permission"...or call my brother first to tell him the whole thing is off for now?
I leave a message with brother.
About 20 minutes later, the VA Dr. calls and says she's got the bed, to come now, before she leaves for lunch. It's a 30 minute drive to get Dad, and another 30-ish minute drive to get brother and get to the VA. No time to spare.
Brother calls just in time, he'd just gotten my "hold on" message...and I tell him we're back on.
I go to get Dad.
I wasn't prepared for seeing the way he looked in that Gery Chair thing. He was standing up in it, but he looked so pale and sad and he started crying as soon as he saw me. He thought he was in Albuquerque, NM...and that we'd left him there. Oh god, please don't cry, please don't cry, I tell myself.
They had already shoved all his clothes in a big plastic bag and he was ready to go except I had some paperwork to get.
I kept seeing this one guy milling around...not a patient...someone who looked like he worked there. But I was too busy to pay too much attention to him at the time.
Two Nurses helped my Dad and me out to the car...and as we're pulling out of the parking lot, the guy who was milling around came and tapped on my window. Apparently he was their Social Worker and wanted to know why I was taking my Dad out so suddenly. Not that I had time anyway, but I wasn't about to have that conversation with my Dad sitting there.
Many Doctors just freely discuss their "demented" patients right in front of them because they figure they won't recall any of it. That still doesn't seem right to me. I told the guy I would call him later.
So of course I got lost trying to pick up brother from work. I am so scatterbrained these days, getting lost is the least of my problems.
But we finally get to the VA, meet with the Dr. and she chats with Daddy for a few minutes. She was alarmed at how much he had declined since she last saw him a couple of months ago.
She tells us to go get Daddy some lunch while she does paperwork and orders the Ambulance.
I am feeling anxious.
Daddy has a hard time eating...he is kind of jerky and shaky. Brother gets the fun of taking to the bathroom afterward this time. That is an ordeal everytime...I should know!
I kept it together pretty well until they got Daddy into the Ambulance. Daddy had already been crying off and on and I had to look away, or think of something that annoys me to keep from bawling. I lost my "composure" when we were walking away from the Ambulance.
None of this is right.
He shouldn't have to go to a place like that. But I know that I have literally exhausted all other options, myself, hubby, and my two kids in the process of trying to make things the way IIIIII want them to be for him.
It's not what is the reality here and I have to accept that.

This will not be easy.

Let me sleep pleeeeeeeeeaase.

At a few minutes before 10pm last night, the facility called. I didn't answer it initially because I was SLEEPING and let it go to voicemail...then I got up I listened to it in case it was actually "something" this time.
The message didn't sound good. The girl left no real information...she just said that she needed me to call her back...she sounded, well, like she had bad news.
NO, no, no...!
So I called right back.
Drum roll....
She says that she was calling to let me know that EARLIER they had noticed a bruise on my Dad's abdomen...EARLIER...and that he was sleeping right now.
I swallowed the words I really wanted to say and asked why they didn't call me EARLIER or tomorrow MORNING, like, when we would be, like, I dunno........AWAKE????
Then she apologized and hung up. I took the phone off the hook again.
So...yet another call to the head Nurse, Matt, tomorrow morning, I guess?
After the call, of course I was wide awake. I started worrying about things concerning the conservatorship...like WHO is going to trim his fingernails and toenails when he's a ward of the state...will anyone do that? Will anyone cut his hair? Shave him? I was making myself crazy thinking that no one will take care of his needs.
Not that he thinks WE were taking care of him. Everytime we didn't get to him within seconds, he'd yell that he'd been waiting an hour...an HOUR...that is exactly what his mother always said too. No matter how quick you got to Nany calls, she would cuss and yell that she'd been waiting an HOUR. Always an hour.
I dunno. I need to stop thinking about all of this. I am making myself insane with worry.
I dunno, Daddy, I hope that you will eventually go to a better place so you will have an understanding of what really went on.
It kills me that there's the possibility that he thinks we didn't try our best to take care of him.
Sigh....

Hmm...but oh, there's more...

At around 11am I got a phone call from the facility. Seems that Daddy is being so disruptive they had to put him in one of those weird new "gery" (sp? like geriatric?) chairs. Apparently Daddy went ballistic again and was in and out of people's rooms...eventually into the room of a woman, which they of course frown upon for good reason...and he ended up throwing a TV table over...thus also throwing her TV on the floor...and it, of course, broke.
I'm sure I'll be getting a nice fat bill for that...wonder if they're gonna splurge and buy an even bigger TV now?
The Nurse said that my Dad is actually sort of "okay" with being in this chair...it's this weirdo contraption made of what looks like PVC pipe, fashioned into this box-frame of sorts...and they can use it as a seat or walker...but it limits the space they can fit into (so they can't be as invasive in other people's space)...and if they become out of hand, it has wheels so the Nurse's can gain control much more quickly.
I tell ya...something new and interesting everyday.

First moment of peace.

The facility let my Dad call me yesterday. It was horrible. He cried the whole time and sounded awful. I tried to be calm and reasonable and calm him down, but I felt like I needed to calm myself as well. It was so sad. He was saying he was lost and needed someone to find him...there is no reasoning with that, especially when he was crying and sounding so pitiful. I ended up talking to a Nurse afterward to ask what they were giving him...they said he'd actually slept the whole night, but he was very emotional all day. They are giving him Risperdal (an anti-seizure drug that doctors found helps with bi-polar) and Restirol for sleep. I don't know a lot about the Restirol, but I don't like that they have given him Risperdal...that stuff is like a chemical lobotomy. I don't know, I hate this. My first instinct is to jump in again...but I know I can't do that.
After that phone call...I had some downtime for the first time in nearly forever. I ran a few non-rushed errands, and then just stayed home...sat around, and there were NO calls last night. I didn't even have the phone off the hook...I actually checked the phone this morning to make sure there was a dial tone...how pathetic is that?
Anyway, this small taste of sleep has me more tired than rested. After I go grocery shopping, I plan on doing a whole lot of nothing today...I have my weirdo whole-body, head-to-toe bone pain today from my so-called fibromyalgia or whatever it is. Must vegetate.

Only IIIIIII get an Opinion on this!

Okay, so Wednesday morning came...time for us to take Daddy to THE only place that would even consider letting him in their facility.
I told Daddy that we were going to a place that would be able to take better care of him, etc., etc., and he was in total agreement. I KNEW his calm response would be temporary.
By the time we got there, he was freaking out. He started crying and begging us to promise him that we would be coming back for him. He told the Nurse that "the only thing they (we) have a problem with is that I can't sleep but I can't help it, but there's NOTHING wrong with me".
Sigh. Poor Daddy. Damn Lewy.
I had to leave the room several times to not start crying.
He was getting pretty agitated and wanted to go to lunch and to get some gum...he says gum calms him down. We'd confiscated his gum at our house after he kept chewing it while laying down (and falling asleep with it in his mouth) and then he'd spit it on the carpet. We still haven't been able to get all the gum cut out.
So we went to lunch. He wanted a burger and pineapple coconut shake...which means Dairy Queen. He was agitated the whole time. When he was done eating, he wanted to go wash his hands and we offered him some napkins first to get the majority of the mess off before we took him to the sink, but he started yelling that we "wouldn't even take him to the bathroom because we think he's going to try to run off".
Sheeeesh. As if he could really get away even if he wanted to. Even at his highest speeds, his shuffle is easy to catch. We ignored his responses and focused on distracting the kids from his bad behavior. I think my kids are going to need counseling.
Anyway, so hubby gets Daddy all washed up and then I ran into Walmart across the street and got him several packs of gum, and we took him back, got him settled into his new room, and went home.
The place had assured me that they understood his condition completely, not to worry, etc., and I looked forward to some sleep that night. I was out like a light early, dead asleep, when...
Uh, no.
At about 9:50-something, the facility calls. Just seeing the number on the caller ID stressed me out. They were calling because I had written down that Daddy was born in 1934 and he was arguing with them that he was born in 1939.
They were calling to settle an argument with a Dementia resident about their birthday?
I was dumbfounded.
I called the Admin. the next day and told them what happened and they were equally as shocked and assured me that would never happen again.
Uh, yeah...so the second night at 8 pm, I get another call.
This time it's the Nurse that doesn't speak very good english and she is IRATE. Daddy was arguing with them about pretty much everything and being combative...swinging at them. He was absolutely confused as to where he was, etc. I could hear him yelling in the background. But the Nurse was yelling just as loud and telling me I needed to come there RIGHT THEN to either give him pills to calm him down or take him home with me because he was being kicked out.
Needless to say I was a little upset. Of the almost 40 places I called, this place was the only one that would take him...and they were kicking him out on the second day?
REALLY long story short, about 5 calls with the irate Nurse later and at around midnight, it was decided that Daddy was staying, at least for that night. The psych-ward behavioral center that she was trying to get him into for evaluation said they wouldn't take him because the 'policy' is that a facility must have the resident for at least a week before shipping them off (yes! finally someone ELSE is being turned down!)...and because Daddy has no insurance.
I called my brother to tell him what was happening and to ask him if he's going to have a problem with Daddy being institutionalized...because I am NOT about to go on another hunt for facilities. I have spent the last 3+ years of my life taking care of my Dad and I am beyond exhausted. I am ready now for the State to have conservatorship. I can not and will not make these decisions anymore...and I can just assume that brother doesn't want this responsibility either. He doesn't. Who really does? This is a nightmare.
I took the phone off the hook. But I did not sleep that night.
The next morning I was up early. I finally put the phone back on the hook at 6:54 AM. 3 minutes later the facility called me.
This Nurse tells me she's "been trying to get a hold of Roy's daughter..." because Daddy had fallen during the fiasco last night and scraped both knees.
They were trying to call me for hours, PRIOR to 6 am, to tell me this.
This Nurse also tells me that she doesn't think their place is the "right" place for my Dad.
I ignore her comment and say nothing because I was trying to get dressed...
I was getting dressed and ready...finally attempting to get out of my house with my daughter to visit a friend who lives out of town a couple of hours south. Some resemblance of a life? What normal people do? Wow!!!!!! Could it really be?
Nope.
What I really ended up doing was fielding call after call on my cell phone about what's going to happen to my Dad. I got a message from my brother that he had indeed made a call to someone at the facility...someone named Matt...and the message really ANNOYED me because he said Matt said they'd "handled everything" the previous night. Uh, NO, they DID NOT "handle it", or I wouldn't have had to calm the NURSE down on the 5 calls I spoke with her. And they wouldn't have been threatening to kick Daddy out or telling me that IIII needed to come there and calm him down, give him pills, or take him home. AND they wouldn't have been trying to call me ALL NIGHT to tell me about scraped knees...if they were "handling things".
I talked to the guy Matt (who ended up being the head of Nurse's) that my brother talked to and told him about the message he left me in regard to THEIR conversation. Then I filled him in about what REALLY happened the night before...because apparently none of his Nurse's told him what they told ME, of course. They hadn't told him that they said my Dad was being kicked out. They didn't tell him that they were YELLING at me. They didn't tell him that they told ME to drive 40 minutes to give my Dad meds or take him HOME.
After all was said and done, Matt profusely apologized and assured me that it wouldn't happen again...that there would be a meeting to discuss the fact that it is NORMAL for residents to 'flip out' and take some time to adjust to new surroundings...AND for them to get on a medication that will allow them to be calm. He said that he was embarrassed that his Nurse's had done what they did, because the are all fully trained and capable enough to have taken care of the problem without calling me. He said they were clearly just looking for what was easy for THEM (thank you!). He also said that the irate Nurse that had called me wouldn't be calling me again...he said that he'd noticed she wasn't the best at handling incidents such as the one with my Dad.
I felt better. But to be honest...even though this head of Nurse's was definitely intelligent and calm and seemed to have all the right answers and knowledge to take care of my Dad...unfortunately he can't be everywhere at all times. He was apparently on duty when the fiasco happened and he had no idea because no one came to him. Clearly not all the Nurses are like him. I wish.
So, I have some things to decide. I can't just hope that this Matt is going to be able to change things. He said he'd JUST come to this facility two weeks ago, so he's new and trying really hard to make it better. But I can't count on that. I know from experience that the very BEST of intentions doesn't necessarily mean success...or that they will stop calling me every night.
And I can't be threatened with my Dad being kicked out anymore, it's too traumatic. I am now accepting the fact that I cannot do this. I won't. I can't disrupt my kids lives anymore. I can't disrupt MY life anymore. I can't make all my Dad's decisions and be running around scatter-brained, too tired to even know what I'm doing if it's not on a written LIST, and not spending time with my own family because my Dad is having yet another crisis. My body is tired, sick and weak.
And so the next phone call I made was to my Dad's VA doctor who had FINALLY called me back that afternoon (after 3 weeks of no response). She said she was on vacation and apologized...but I know for a fact that she's been back for two weeks because her nurse told me so. But whatever, it's not like confronting her about that would get me anywhere.
She wants to send my Dad to the VA Geropsychiatric facility (did I spell that right?). The same one that was a nightmare...the one that made him a ward of the state and told me to leave him, to forget about him. I discussed conservatorship with her and she was in full agreement that that might be the wisest decision...to have someone else, not me, be appointed "the responsible party" for my Dad. She has seen ME for pretty much every visit she's had with my Dad. She knows that I am the one in the driver's seat and that I have not been well and that I have two small children to consider. She explained the whole conservatorship process to me, and I am going to think long and hard about it...although I don't think there's anything to think about really. Someone else (not in our family) would be appointed to make all my Dad's decisions. THEY would find an appropriate facility...and would probably have a lot more pull to get him in to a suitable place than I would...unlike my time-wasting calls-a-plenty to places that shut me down cold. We would still be able to visit and give input...but the conservator would make any final decisions...and would be the one to get the harrassing phone calls.
If thsi happened, I would possibly be able to get rested, spend time with my kids for once, actually see a friend or two more than once every 6 months, get well, and stop TWITCHING.
Sounds pretty good to me.
So I have some things to think about...and NO ONE gets to have an opinion BUT ME.
I may ask for someone's input, because that's how I am. I want family/Doctors to be involved despite the fact that I know they won't actually HELP...but I want the input so that I can weigh the pros and cons and TRICK MYSELF into thinking I'm really not making all the decisions on my own, which is the reality. So, I can ask for all the opinions I want, but in the end...no one has the right to get mad at the fact that I may not even consider your opinion because IIIII have been the one here, living this. I've been knee-deep in phone calls, paperwork, legal fees and meetings, banking hell, people treating me like a ditzy idiot because I "look too young" to be dealing with this, touring facility after facility, Depends undergarments, doing paperwork to move my Dad IN to facility after facility, doing paperwork to move my Dad OUT of facility after facility, asshole Doctors, asshole bankers, asshole Social workers, nutball psychiatrists....seriously...I could do a whole blog about all the rude, inconsiderate people along this path...but I get the final say on what happens next.
No backseat driver's allowed, so run along.

My last resort came through.

After hours of faxing and phone calls, Palm Haven Manteca said they could take him. My god, the relief. And, for once, I actually do not feel bad that I am relieved. My kids are so terrified of Grandpa at this point that they run out of the room when he comes near.
And he has been SO awful today. Literally every 5 minutes for hours he was yelling that he needed help.
Everytime we move him it's at least a 15 minute process because he moves a half inch at a time and he can't turn or bend...we do all the work. So...we'll do all of this and get him in the chair he asked to be in...then 5 minutes passes and he pops right up with complete ease and screams for help into bed again. Another 15 minutes to get him in bed and then 5 minutes later he pops right up and screams to go to his chair. And everytime he screams for us, he says horrible things about how he's been "waiting a Fucking hour for us and how we're monsters and mutherfuckers and how the lord will make us pay for what we've done to him".
Holy CRAP.
I am SO not good with that kind of behavior.
I should be the one that can rationalize that this is a disease, right? That it's the disease making him say these things? The thing is that his mother was exactly like this...but not just with the dementia...that was her personality. And my Dad was like this as a drunk. He really wasn't a very nice person, to be truthful...and this just seems like his old personality coming out again...through Lewy.
I hear about people who were kind, quiet people, preachers even...who, once struck with Alzheimer's or another dementia, become a monster. I have to admit that I think there is some part of that "monster" that was really inside of them all along though. I just don't see how someone who never cussed their whole life would suddenly utilize words they shunned...unless it was a quiet anger creeping in them the whole time.
So...after taking a half hour of being cussed out, I'd remind Daddy about how IIIII am the only one that's helping him...I asked him if he remembered anyone else since my Mom died coming to help with anything. He quieted down.
Then he fell out of bed trying to pop up again and hubby helped him back up...and then he cursed hubby out again.
When hubby left the room, Daddy started banging on the wall and doing this horrible shrieking-laugh...like the Joker in Batman...and started squealing in this truly evil voice...he said the second hubby went to bed tonight, that he was going to make sure he woke his ass up right away...and he laughed and laughed and said that he'd show US who's boss and in control.
Lewy is scary, scary, scary.

And the 'accidents'...hoo-boy. Today was another doozy huge one. We are seriously going to have to replace our flooring downstairs. It stinks. He had more or less marked his territory LAST time he lived here...and I got the carpets cleaned and it turned out halfway okay. There are certain areas that have still have a "scent"...but after this time around...dear god...no use in trying to professionally clean it again. Our carpet cleaner needs to retire. There have been so many different kinds of spills, stains and accidents...ick. Bewteen the "accidents", Daddy spitting and smashing gum into the floor numerous times, and all the times he SPIT god-awful things on the floor...I can't even fully think about it or I would probably never take my shoes off. I just hope that I got the carpet clean enough so it isn't posing a health hazard.
Blech.

So, anyway, in closing...

One more night with no sleep.
One more night with no sleep.
One more night with no sleep.

No Facilities for Old Men.

I didn't even get a chance to post yesterday, that's how crazy it's been.
Daddy is the typical Jekyll and Hyde now. Going from completely insane and angry one second, to crying and apologetic the next. I'm not good with that, so I've been doing a lot of walking away from the situation...giving myself a time-out before I react badly. Especially when he starts these conversations with, say, the floor, and he's arguing with it, cursing it, and then I stupidly ask him if he needs something. Bad move. He acts like a mean drunk. He was a mean drunk back in the day. I remember it well. It's as if he's somehow regressed into a drunken stupor without the alcohol.
WELL, the place I was counting on...the nursing facility that caters to people with psych-oriented issues denied us. They said they thought they already had too high of a ratio of people like my Dad. Oh, and that they already filled the bed anyway. 'Nuff said. No one wants to take my Dad. I almost cried on the phone when they told me this. Honestly, I have been turned down by about 35 nursing homes since Friday.
One place did refer me to a locked nursing home in Manteca, which is about 30-40 minutes from here. Within minutes of being turned down for the other place, I found out about this place and I immediately wanted to go look...but...that crap-hole place I talked about with the bratty girl LVN's was sending their Nurse to assess my Dad, so I had to wait.
Take a guess what happened! We sat there, time wasting and ticking away, and the "assessment" Nurse, who looked and smelled as if she'd been smoking since age 2, tells me she doesn't think they can handle him because he can walk and wanders.
F***********CK! I TOLD THEM that he was ambulatory on FRIDAY!!!! I TOLD THEM he wandered on FRIDAY!!! Now it's Monday and I am exasperated, and she acts like this is some new development. I'm sorry, but I must say it....ASSHOLES! Why waste their time and MY time? Arrrrrrrgh!
So the second smoker-Sally left, I jetted to the Manteca facility. While it wasn't up to my clearly impossible standards, it's doable. It's a locked unit, the people there all have some sort of dementia, and they SAID they were positive they could handle him. I repeated at least three times that my Dad wanders, he can walk, and that he gets argumentative. Their answer to all that was, "That stuff happens".
Sadly, I am so jaded that this is not making me jump for joy because 3 other places said the same thing, and then they changed their minds.
Someone is supposed to call me this morning...but I'm already planning on calling by 9 am if they haven't called me by then.
At this point, I would've settled for the craphole place. I am so beyond exhausted. I feel like IIIII have dementia...I can't remember anything, I start doing something and forget why I am there...I'm delusional, moody, and fed up. Someone must take my Dad. Right now. This minute.
And this minute, of course...now that it's morning and I just made the kiddies breakfast...and I need to get ready for the long day ahead...guess who is completely knocked out and comfortably in sleepyland?
Yep, Sleeping beauty is finally asleep now that the rest of us have to be up. He got us up SO many times last night that I can't even remember if I ever fell asleep at all.
Hubby is at an interview this morning so I am hoping that Daddy stays asleep. I have a REALLY hard time getting him in and out of the bathroom considering I am half his size and his limbs bend about as well as a broomstick.
If this place today doesn't pan out, I may just have a nervous breakdown.
And then I'll have to start calling facilities that are hours away, because that's all that's left.

The Irony.

What was I just saying?
Oh yeah, so for the rest of the night, Dad was psychotic and pissed off. He was jibber-jabbering about stuff I'm sure I will never understand...things and conversations that sounded like he was repeating from way back when...and they were conversations where he was mad, really mad.
One time he was yelling at the wall and I asked if he needed something...and then I was brought into the argument. He wanted to tell me that his ex, ex, ex wife had shown up without his knowledge and that, now that it was late, he was wondering if I could give her a 'meal ticket and bed'. I questioned him further...especially since he was only married one time to my mom. He said that she was not my mother, and asked what my last name was. When I told him, he didn't know that name, and I told him my first name and then said he'd known that all along (as if I questioned his sanity!).
One of the other 12 times he woke us up last night he said he wished we'd all be crippled or blind for what we've done to him...how we've mistreated him. Of course it made me feel sorry for him and started me wondering, in my obvious delerium, if there was any way I could not send him to another facility.
The last time he woke us up was for another accident. Hubby found him standing in the shower (he didn't know where he was) and the floor was covered in it...ack!...but his Depends was pulled up and fully dry. What the...? He was cussing us out left and right...because we'd made him have an accident. He said if we didn't hurry up and clean up that damn mess we'd MADE him make...he was going to bust through the glass doors.

My horoscope this morning said this:
"You may be wondering whose shoulder you should cry on when usually yours is the shoulder that everyone else likes to use. The collar of your shirt is probably soaking wet by now thanks to all the tears that have spilled on you. Your compassion for others is definitely one of your biggest strengths, but be aware of the fact that it can also be one of your biggest weaknesses."

Wow.
But, Arrrrgh.
As if I didn't know that...but somehow seeing that in writing made me have flashbacks of the last 3 years of dealing with Police, Managers, Doctors, Administrators, the front doors of facility after facility, endless nights with no sleep and my own health getting worse, and then...again, as if I didn't know this too...my kids. My kids, who have been dragged from place to place at all hours because of this freakin' Lewy Body Dementia. My kids who are only 5 and 9 right now...who have also for the last 3 years been thrown into this mess. My babies, who don't even really try to get me to play with them anymore because they already know what the answer will be...that I have to help Grampa, or that I'm tired, or that my body is not working that day from exhaustion. I have to let my guilt go and know that I did everything I could...because it's not just HIS life that is being killed by Lewy Body. It's mine, my husband's, and my two precious babies. I am missing out on important moments with them to help my Dad. Something must give.
My hope is one of two things: that either my sister's philosophy of what happens to us when you die, or mine, is 100% true...so I can let this go.
Her theory is that once you're gone, that's it. You're dead and don't know you're dead...because you're dead. In that case, my Dad would, well, be dead, and wouldn't have all these crazy thoughts about what he now thinks everyone "did" to him. The end would be the end and there would be no looking back at what really happened or what we actually sacrificed to try to help him. There would be no looking down from heaven and seeing us grieving him because he would just "be dead", in the ground, lifeless.
And then my theory is that we go someplace better and finally see what our lives were and the reality of things that happened to us, or that we made happen to ourselves. In that case, my Dad would see that, though I know I was not always perfect or patient, I spent 3 years putting my own life and my little kids life on hold...I dropped everything at all times...to make things better for him...and nothing I did was good enough...and I drove myself into the ground, lost friendhships (although, really...good riddance to those jerks), even jeopardized my marriage trying to prove that I could handle everything. Which I can't.
Anyway, it's now morning and everyone is awake...except Lewy...he ate breakfast and went back to bed.
I have a million phone calls to make. Lewy must go live in a nice place with caregivers who are not me.

And then sleep goes away. Arrrgh!

Daddy did not sleep a wink last night. And every 20-30 minutes he was yelling for help to go to the bathroom. He was very agitated too, and got pretty combative with hubby. Daddy swung at hubby two different times yesterday. He also keeps insisting that he will "get out of this dump one way or another".
Everything is a dump to him. The fancy places I've found him to live and even our house, which is only 3 years old. All dumps. The places that were actually dumps, he really didn't complain about. So obviously, me feeling guilty about what a place "looks like" is really all about me and my standards, because he'll hate everywhere he goes anyway.
So.
After lots of deliberation and asking a few people for their input, I've decided on a place for Daddy. It was the last place I toured, and, honestly, I am still struggling with how the place looks, even though by far it's the best-kept nursing home I saw.
I called, my god, over 30 homes and was shut down cold by all but 3. The criteria for these places is this: they really don't want people with dementia. If the person does have dementia, they have to fit into this category: female and non-ambulatory. So basically they all want the "pleasantly" confused little old lady who sits in a wheechair. Unbelievable.
The 3 places that would even consider taking Daddy were: One was on the busiest street and most ghetto-ish part of town. It's not locked, so anyone can come in or out, and for the people with dementia, they wear a wanderguard bracelet that sounds an alarm if they leave...and considering that when the mood hits Daddy can almost run...I am NOT putting him in a place like that where he could run outside and be hit by a car if someone doesn't get to him quick enough. The second place was, to be blunt, the worst looking place I've seen and the LVN's were all very young, which has not been a good thing so far. In the first few minutes I was there, at least 4 of them were rolling their eyes at either residents or the Administrator. Uh, sorry, NO. I've already dealt with bratty little girls who shouldn't be in this profession, and I am not signing up for that again.
The third place is actually a skilled nursing facility that caters to people exclusively with behavioral issues...people with dementia/alzheimer's and older people with other mental conditions. The facility is older, and it's definitely not "nice"...it could use a lot of work...but the Nurses there were the first ones I've ever come across that didn't look miserable. They seemed to actually be enjoying themselves and the residents. Many residents there are kind of easy to love, many have such mental deficits that they are mentally like an 8 year old. Most of the employees have been there for at least 10 years, and one has been there for 30 years, since the place opened. I think that says something. One person there even said that they absolutely loved their job there. Not one time have I EVER heard someone in this line of work say that. Not once. Their program sounds impressive...and though I am still struggling with the whole idea, I think this place could actually handle my Dad...because everyone there is JUST like him.
Tomorrow I will start the paperwork and see where we get.
Daddy has been unusually happy and calm today...and he hasn't needed as much help in the bathroom or with anything really today, which is so truly bizarrre, but very typical of this damn disease. But all of this, of course, makes me feel bad because it doesn't matter now...temporarily calm or not, he must go live somewhere else. I know that tomorrow, or even within a few hours (or minutes), he could be back to screaming and fighting and being completely unbearable. My decision is made and I CANNOT let my guilt make me think I can have him here. I tried. I tried twice. Three times. But...even knowing that I've done a hundred times more than anyone else would've even thought of doing, I still feel bad, I just do. I may not have had the best relationship with him growing up, hell, no one ever has...and maybe he really did suck as a Dad and never really took care of us...he's still a human being that deserves to be treated with some sort of dignity. I wish I could provide a better environment for him, but I can't. Case closed.

Sleep finally comes...like a boulder.

Last night we gave Daddy his dose of Xanax. Need I mention again that I do not necessarily approve of these sorts of drugs...?...but he was SO very agitated that we had to do something. All day he'd been getting irritated over everything. Then he was yelling at us, saying he was going to "call the law", and then, my favorite...he yelled at my 5 and 9 year old and said they were letting the "jiggaboos" run up and down the stairs. I tried really, really hard not to respond to that, but I couldn't help it. I did raise my voice and tell him that my kids are not racist, and we do not say or think things like that in my house. Period. The he got even more mad and hubby tried to help him to his room and Daddy swung his arm away so fast that he came within an inch of elbowing my 5 year old in the face. Both kids started crying and we told Daddy it was time for some quiet time in his room. Then he yelled more.
Arrrrgh!
But whatever took place between then and bedtime, I don't know. At 9 pm we were beat so we headed to bed. I checked on Daddy one more time before I tried to go to sleep and he was in his bed already sleeping. I couldn't believe it.
Then this morning I woke up at about 6am and realized Daddy hadn't woken us up ALL night. That dread started creeping up my throat.
I went downstairs and he was laying on the floor, halfway inbetween his room and the hallway that goes to the bathroom. There was no sign of blood, or "trauma", but I couldn't wake him. I got hubby and we couldn't get him to respond.
Then we nudged him as we said his name very loudly and he finally started slurring that he needed to go to the bathroom. We tried and tried, and Daddy could not open his eyes or move his limbs. We mangaged to get him on the bed and we put a Depends on him in case he had an accident. He was asleep within seconds, he was barely conscience of the fact that he was being moved.
I can only assume that the Xanax just finally helped him sleep...and that when sleep finally came, his body wasn't giving it up. He finally woke and ate at about noon, but went back to bed and napped most of the day.
My brother came by before dinner and saw a little bit of what's been happening...although I admit that I wish Daddy would've "performed" for him like he's been doing for us. But, no show.
After dinner, Daddy went into his room and sat in his chair.
I hope he gets some sleep tonight...and that last night's sleep-coma on the floor was some strange fluke. Scared the hell outta me.

Air: A fat-free, no-calorie treat.

I've noticed that Daddy has been doing one thing in particular a lot lately, and he just did it again...he ate air. What I mean is that he thought he'd grabbed something to eat and was walking with nothing in his hand, leaning over taking "bites" out of it...and even chewing!
I asked him what he was eating. He had NO idea he wasn't eating anything.

I was on the phone with my sister and he was doing strange things that she heard me talking to him about...like he grabbed the mop and was "mopping" invisible crumbs off the carpet. Then he got on the phone and had what seemed like a fairly normal conversation. It actually rather annoyed me because we haven't had anything resembling a "normal" conversation with him in weeks! But right after got off the phone with my sister...talking to her like a normal person would, he did the eating air thing.
Pfffft!
From people I've talked to and things I've read, people with Lewy Bodies in particular seem to be able to "keep it together" for just enough time to make a few people think they sound normal...like they are either 'pulling one over' on the rest of us, or are great actors. But then it's back to the same weird behavior. This disease is truly bizarre.

My hunt for a facility today left me scratching my head. Very few places will even consider taking people with dementia if they are ambulatory (able to walk). I toured two places today and one might be a possibility, but everyone there is JUST like Daddy...most are able to get around and they all have some serious mental impairments. This worries me because Daddy is so quick to argue, I'm afraid that he will be in a constant scuff with someone else is also combative and quick to argue...but, as my sister pointed out, our Dad hates confrontation, so that may make him keep quiet. I don't know. I hate making these decsions.

Lewy, Energizer Bunny.

Daddy did not sleep last night. Period.
And considering he was frantic the entire day and really didn't sleep the night before either...his day of pacing, sweating, freaking out over anything and everything and having Oscar-winning hallucinations, you'd think he would pass out from delerium. But, no. Seriously, every 5 minutes there was an "emergency" with him yesterday. If we dared to go upstairs to do laundry, go use the bathroom, whatever...he was yelling for us. If he couldn't SEE us, we'd abandoned him.
Last night, about every 20 minutes, one of us was down there helping him in the bathroom or turning off lights and getting Lewy back in bed. His main focus all night was that he didn't know when he was supposed to go to work, so he was all amped up about being late. Oy.
But now that it's time to get up, feed the kiddies, start the day, he is sound asleep. For how long, I don't know...but I do know that I searched all day yesterday for a nursing home that take people with dementia. I was on the phone half the day, looking at places and then of course, attempting to do the things we actually need to get done for our lives and our children's lives to somewhat continue on. This is so ridiculous.
Of the 13 homes I called, there were two in my city that would even consider taking Daddy...one looks like a meth lab and the other doesn't have a bed available anyway.
My search continues today. I must add that on "the" Alzheimer's website, they have this search you can do for facilities...USELESS! One would think that on an Alzheimer's site, they would only list the places that would accept people with dementia's...but, uh-uh...the list they have is like looking in the phone book. I expected more from the Alzheimer's Association, how disappointing.