Devastating exhaustion. Defeat.

The last time Daddy stayed with us was a nightmare. I swore last time that he would never stay here again. Between the not sleeping and the hallucinations, the messes and complete disruption to every aspect of our lives (what little "life" we could claim), including that of my small children, I swore: never again.
But here we are with him here...because it was getting beyond ridiculous with every single facility...of course NOW I know that the "assisted living" facilities are completely not for someone like my Dad. Either way though, I shouldn't have so much work to do when we're paying out the nose for "care".
What is puzzling me is that each facility has their own system of figuring out what each resident's monthly cost is. There is a base fee, say, $3900, plus "care points" according to how much care is needed. In my Dad's case at the Stratford, with the extra "care points", the monthly charge came to $4205/month. And that was with him showering himself and taking care of all his own hygeine needs. No one told me that they'd been helping him in the bathroom at all. None of them mentioned they needed to help him get dressed, even though dozens of times when I came to take him out, I had to help him do just that. I thought maybe he thought I was in a hurry and he'd take too long, so I always just helped him when he asked or clearly needed it. The monthly rate never went up and I can only assume that we would be charged more for having to shower, clean and dress him. Of course we would, there are no freebies.
Every day here though, we've had to basically do everything for him, and he now told us that they were helping him with everything. Jesus. I would have never brought him back here if I'd known that. Or I would've already had a nurse or something set up to come in...although hubby and I had discussed that we really don't want people we don't know in our house 24/7.
I printed out a list of Nursing Facilities, and this morning is my Alzheimer's Caregiver support group, so I will start the process of looking. It makes me completely ill thinking that he will have to go to a Nursing Home, but these "assisted living" facilities are ridiculous. As "nice" as some of them are, there really is no level of care that takes the stress of the family members...at least not in our case. And for me to admit defeat....Arrrgh. And after, what has it been...6 days?
But I am admitting defeat. I can't do this.
Last time he was here, my health wasn't good, but this time around it's much worse. Everyone warned me, asked me what I was thinking trying this...but I'm too stubborn. What the hell was I thinking? Why did I think I could do this? Why?
I know my intentions are good, I want what's best for my Dad. But I'm beginning to see that what that saying means now..."the road to hell is paved with good intentions".
Touche. Got it. I'm an idiot.
Last night I actually got a few hours of sleep. But it did nothing to make up for the days of sleep lost. I think I have officially lost it.
This morning, I was, as usual, the first one to go downstairs.
Hoo-boy.
Every room down there was rearranged and upside down. He'd been on an eating binge again and had gone through almost the entire supply of snacks I've kept stocked in his room...I just went shopping yesterday too. And he'd had another accident and had tried to clean it up himself, which really just made the situation worse.
I went upstairs and told hubby to get down there and help ASAP as I started mopping. Then I got the sheets off his already wrecked and stripped bed and started a load of wash.
THEN.
As I was putting the new set of sheets on his bed, I heard something.
Clear as freakin' day, absolutely without a doubt, it sounded exactly like my Mom's voice calling my Dad's name.
I immediately looked around the room, looked to see what was on the TV (it was a cartoon) and went quickly into the the other room to ask hubby if he'd just heard that...and I started crying.
I AM losing it.
Now, for the record, I truly believe in that stuff. I've had far too may odd experiences in my life related to things like this to deny that. But this made me question my sanity in a huge way.
Hubby said I must just be way past my limit, under too much stress and beyond exhausted.
Yes, well, I passed that limit a couple of years ago, so now I must just be fried. Irrevocably frizzle-fried. Or showing my OWN signs of Lewy. Dear god.
More later.

Financial, Legal and Nonsense Matters.

I have tried to touch upon these issues in my entries, but as I type each detailed entry, I forget some things that happened...so I figured I would do a separate post JUST about these matters (and add to it as I get the time). These are all issues I've had to deal with since "taking over" for my Dad.
Okay, so from the very beginning, I knew we'd have to get some sort of legal advice. I was only 32 when these issues started coming, and I had never had to think about any of this before...and frankly, from what few things I have dealt with, I don't necessarily trust lawyers or people who deal with money for a living. That may sound bad, but it's true.
My first real legal experience came when my Mom died. My dad was losing it at that point and so I "volunteered" to call and close out all of her accounts, etc. For about 4 months I had daily (Monday through Friday anyway) arguments with Medi-Cal. My Mom had no insurance and they were saying my Dad was liable for the close to $90,000 in medical fees. My Dad owned nothing...nothing except a car that was worth basically nothing. There was no property, no expensive pieces of anything. He was broke. At the time, hubby and I (well, hubby, since he had the "real, money-paying" job) were paying for everything Daddy needed. When I stupidly mentioned that, Medi-Cal then insisted that WE should be liable for the fees since we were taking care of my Dad. Now...I need to make my point very clear here. I literally yelled at a few people Medi-Cal employees. I kept calling and they kept calling. There seemed to be no end to this. But I pursued it eagerly. In the end, I must've spoken to about 20 Medi-Cal people before I got the "right" person...who told me that OF COURSE my Dad (or we) didn't owe that money.
Seriously. After MONTHS of hell, it was over just like that. So if you have a situation like that, please do not give up. Ask to talk to EVERYONE...every Supervisor alive. Most people may have given up long before I did...but I knew in my gut that my Dad should not be liable for that money. Medi-Cal informed me that "poverty level" was earning $934 or less a month for a COUPLE (sickening!) and my parents made $1200 a month and were clearly above poverty level...so Daddy should be "capable" of paying it off in installments. I'm sorry, but hell NO. I don't what state you live in...but we're in central California...and NO ONE can live reasonably off of even $1200 a month for two people...but someone decided that poverty level was barely over $900 a month? Ridiculous!!!!! And...uh...a 70 year old man with dementia (read: will die soon) who only gets a Social Security check every month could somehow pay off nearly $90,000 if we set up an installment plan? Kiss my ass, Medi-Cal! So I fought. And fought. But it was worth it, damn it.
Then, also surrounding my Mother's final expenses...she had a credit card with about $5000 on it. After about 10 phone calls to several states and the credit card's "legal department", they told me my Dad owed nothing...because he wasn't the card holder...he just had a card with his name on it from my mother's account. A person not willing to make phone calls or question it wouldn't have found out this information. I had to dig, and get on a few people's nerves to get the answers I needed.
Then there were a few small things that happened after I closed accounts for my Mom. In the process of closing things and having final bills sent to me...even though I NEVER gave any of these people any info about me other than my name or address...alllllll my mother's credit information "somehow" ended up on MY credit history. All the credit cards she'd ever had, lists of their addresses I never lived at, and bills she's paid late...all on MY credit. It took about two years to get that all straightened out...and actually, there is still one credit card that was hers that the company refuses to take off my credit because they don't believe me. So be very careful.
When Nany (my Dad's Mom) passed, we didn't know how we were to handle the sale of the house and all the tax information about Dad getting inheritance. We already had Power of Attorney, but I had already been given mixed stories about what our roles and rights would be in helping my Dad. We spoke to a lawyer in New Mexico and he admitted he wasn't sure of California laws, but that he could help us with a "better" Power of Attorney form and issues with the house in New Mexico, but that we should consult a CA attorney as well. All in all, I paid the NM attorney about $2000 for the P.O.A and calls he made on our behalf.
While in New Mexico, getting Nany's house up for sale, we ran into all kinds of fun. Brother was thankfully with me and extremely helpful with the initial house nonsense, so that was great. We had to go close out Nany's CD's and other accounts...and all the cousins came out of the woodwork and wanted to make sure we split the money with their mother...my Dad's sister (Nany's daughter).
Now, legally, we did NOT have to do this. Nany's Will clearly stated that my Dad was the Executor. He was named on the house as joint tenant (not his sister), and the CD's were also only going to him. The checking account that his sister had been helping Nany with had her name on it, but nothing else did. Nany and Papa (before he died) was very sepcific about the fact that they did NOT want our Aunt getting that money. Period. This was not because they didn't want the her to get any...but because after a whole lifetime of knowing my her...she wouldn't use it on herself...she would give it all to her kids that my grandparents absolutely refused to help (because there had been some loans unpaid and they had stolen A LOT of money over the years). BUT...my Dad, being afraid of his own shadow and feeling bad for his sister, and after being brow-beaten by her, decided to split the CD money with her, which equalled them each getting $200,000.
Little did we know that Dad would be liable for that "gift" to her and the taxes involved. More hell. And his sister DID give the majority of the money to her kids...and then they got whatever was left a few months later when she passed away after a long battle with cancer. I really had no problem with HER having that money...I just wish she'd used it for herself, gone on a trip, something. And I feel like I let Nany and Papa down by not trying to override my Dad's decision and doing what THEY had wanted done with that money. Oh well. It's money he didn't have to begin with anyway (right?).
Back in CA, we opened CD's for Daddy with his share. And we also decided that no matter what Dad said, once the house sold, we were putting it in an account for HIM...and no matter what any stupid relative said...we were NOT giving them any. They were not legally entitled to any of it, and we had huge expenses to consider to take care of our Dad now. Wells Fargo said it was easier for me to open them in my name since I handled everything...the lady said that way we could have easier access to it whenever we needed it. So that's what we did.
Then I consulted a CA lawyer. He said I needed to get that money out my name ASAP because tax-wise I was gonna get nailed. He also said that our P.O.A was fine, but he should write us up another one for CA. Okay. Easy enough, right?
More questions popped up and my brother went with me to see the lawyer again. This time he said it would be better to get a Trust, which would be just as easy for us to access, but no tax ramifications for anyone but Dad.
Then I start talking to people at the support group. They said NO...that if I do a Trust then things will have to go to court and if there is any money left over it will be split 3 ways (amongst us 3 kids) by the financial institution the money is in. I don't like that idea because I am NOT going to go to court to get money that wasn't mine anyway...and I was NOT going to use whatever WAS left of "my share" to pay for all my Dad's final expenses. Sorry, but that's not fair. I'm not after this money, but there is no stinkin' way that I am paying for burial out of my "third" of whatever money may or may not be left. That's not right. Especially considering I've been doing all this work and getting nothing but brownie points in return.
Then I see a financial advisor. Super nice, knowledgeable guy, but everything that can make decent money is at a risk...like annuities...and I can't risk this money, it's all I have to take care of Dad.
At the end of the year when I was doing my Dad's taxes, all hell broke loose. Not only were there mounds of paperwork for all this god-forsaken money, but then there's the house that finally sold after 11 1/2 months, the fact that we'd "gifted" my Dad's sister $200,000 in another State, the account that had been in MY name that we now had to transfer interest, AND the tax lady just happened to ask me just who was handling all of my Nany's taxes. Huh?
Nany had passed away in January of that year (2007), so there could be something to file. GREAT. So, more hours of phone calls and piles of paperwork. And during the process of trying to find out what may have been left undone in regard to Nany's financial affairs...I found out the checking account that my Dad's sister had been handling for Nany was still open. Oh, did I have fun trying to close that account. I got my brother to go with me one time and we got nowhere. They wanted to talk to our DAD...saying that he was the only one who could close it. I explained that WE were legally liable for all of our Dad's issues because he couldn't make those decisions. We showed them our P.O.A form. They didn't care.
It took a few weeks for my Dad to have a decent enough day for me to take him to the bank to close that account. And he acted weird and said some weird things about being held hostage. Well, they ASKED to talk to him, so haha!
Also along these lines...there were many, many times when I had set up my Dad's utilities or phone, etc. when he moved. Now, these places will let just about ANYONE set up service...to rack up a nice fat bill. But when it comes to cancelling service...oh no, they want to hassle you. Even though IIII set it up. Even though IIIII always wrote the checks. Even though IIII knew all the passwords. Oh yes, many times these places would ask to speak to my Dad ONLY. I warned them, then I'd put him on the phone.
Uh, yeah, he'd identify himself (usually) and sometimes he'd even agree that it was okay for me to close whatever account we were discussing. But he also always had some comepletely bizarre things to scare the hell out of them with. Like the day I was cancelling his phone at his Senior apartment...I put him on the phone after the girl INSISTED on talking to my Dad. Then Dad proceeded to say things like, "can you come over and ask this bastard in my chair to leave me alone? He's stolen my food, my wallet, and he keeps harrassing me and won't get out of my chair so I just sit on him".
I took the phone and said, "Are you quite done now?" and she said, "Oh my gosh, I am SO sorry." I said, "Hey, I warned you. Have a nice day".
Meanwhile, sister is saying things about how if we, (meaning my brother and I) mishandled "the money"...or, hint, hint...use it for our benefit and the money is ever gone, that they would never help us take care of Dad.
While I see the general point, that pisses me off.
If anyone knows just how much money it takes and what money comes in and out, it's me. IIIIII am not going to "clean my Dad out" when, let's be honest, I would be taking care of him anyway....money or not. And my brother? I, uh, kinda think that he would realize that if HE cleaned Dad out, that I would be immediately drop Dad off on his doorstep and then he'd have to pay for everything anyway. We're not stupid. We're the ones here seeing that you basically have to sell your organs to pay for one of these facilities for a month AND that we would be taking care of our Dad if there was no money anyway...my god!
It wasn't the accusation or thought that we'd clean my Dad out that that bothered me...because that is not going to happen. It was the fact that my sister said that she wouldn't help our Dad...? What if the money was stolen or who the hell knows what...they would hold that against our Dad and not help HIM because the money was gone? I dunno. These situations bring out the worst in all of us, so I am just going to let that comment go.
So...I set up CD's in DAD'S name, but with me and brother as joint account holders. The bank said that way we can turn them over when they mature or take the money out, etc. Fine.
But then the first CD's matured and I was hassled. I wasn't told about the fact that you only have 7 days to turn them over, otherwise they are reinvested for another term and a lower rate. Arrrgh. Yes, I'm NEW.
I continued to handle all the other banking and paying facilities, etc., and anytime I had questions, I was hassled by bank employees. They acted like I was there to somehow sneak money out or trick them into telling me something. But we were supposed to be able to be told everything and handle the money as if it was our own. But it didn't work that way.
The next term comes and I rolled the money into another CD. I'm hassled. They act like I'm some punk kid...I wasn't taking money OUT, I was reinvesting it in THEIR bank.
I spoke to another attorney. This guy says that our P.O.A. should be completely sufficient until my Dad dies...so he doesn't get why I keep getting hassled. Another $600 to hear that. He recommends that I consider putting the money back in my name if we don't want to do a Trust...which he says can sometimes cause problems anyway.
????
The CD's matured again and this time I put it in the checking because I was reading up on other banks that have higher percentage rates. I decide to leave it there until I figure out which one is better. Yet again, I'm hassled. The Banker guy helping me goes to talk to one of the tellers to authorize the deposit, and the woman starts saying how she can't believe what a large amount of money it is...asking did he check my ID...and what was up with my name...she said at least 3 times that my name "was weird". I start fuming. Banker guy sits down and I ask him if he thought that was a bit RUDE....and also why he didn't say something to her about that being INAPPROPRIATE. He freezes. I ask again...did he think that was rude that she was commenting on my "weird" name...and did I look unwashed or dirty or something...could I not have this amount of money in the bank? He said nothing. I told him I changed my mind about deposting the CD money back into the checking account...to give me the cashier's check, and that I would NOT be redepositing it with THEIR bank again...and that he could go tell his teller friend that she just lost their bank $200,000. I left.
I researched CD rates for a few weeks. Bank of America had better rates than Wells Fargo or anyone at the time, so I decided to go with them.
Next, we have all the medical bills. With all the ER visits and changes of addresses (even though ALL bills have ALWAYS come to my address), there is a good chance this money is going to vanish quick AND that bills will get sent to a wrong address. When facilities send Daddy to the ER for a $3000 dollar bandaid once a week, you have to unleash your inner bitch, ASAP. That's almost a month's worth of rent at one of these places...and it went to pay for a bandaid at the ER? Um, NO. Treat the money like it's yours and that once it's gone, the world will end...otherwise you WILL get billed and billed and billed for things that are completely avoidable.
And, as I started to mention, with address changes, stupid people make stupid things happen. My address has always been the only address bills have gone to...however...because there is obviously a real address that exists where Daddy would actually "live", things can get screwy. I don't have any idea how this could've been avoided, but several of my Dad's bills were repeatedly sent to the wrong address until it was sent to a collection agency. Another nightmare. By the time I would find out about this, usually by a barrage of sudden phone calls when they tried to trace my Dad's whereabouts, I had disgruntled, rude people yelling at me for not paying a bill. And, typically, these bills that ended up at the collection agency were the $35 ones. Well, of course! Because ALL of the $3000 and up bills sure as heck always found the right place to go to!
And, uhhhh...Hiding money: This, I will not fully comment on as to not incriminate certain people, but there are "ways" to hide money when, well, you just have to. I will use my Dad as an example.
I applied for the VA Aid and Assistance for my Dad back when he'd already used half of his inhertitance on assisted living rents. So, he had about $100,000 at that time. Figuring in the costs of his medicines, ER trips, rent and other costs, that money would be gone within the year. And he owned nothing else. Just that money was what he had. We had no secret stash of diamonds or bonds or gold teeth that could be melted down for cash (you think I'm kidding?). But they said to "come back when his money has run out".
Now, if someone were to not mind dealing with the tax nonsense, and were able to, say, put the money in their name, then Daddy would have been eligible for that aid and assistance. Had I known that, I would've done it...because, let's face it, that money is being spent on his care one way or another...and to "come back when it's run out" is ridiculous. He served his country, and he's in need of a good facility, so I do NOT feel guilty saying that they owed him that. But we didn't get it, so life goes on.
Same with Medi-Cal. If you own anything or have ANYTHING, and I do mean anything...they want to know and they want it sold or cashed in before you even dare to ask them for help. My Dad has never had any medical insurance besides what the VA would cover on certain things, so when you are faced with privately paying for facilities, you get screwed. If you are on Medi-Cal, Medicare, etc., you get a fair rate...private payers are like walking dollar signs to these places. From what I have heard from support group people, even lawyers, and now from my own experience, Medi-Cal only looks back about 3 months in someone's bank information. So, if someone were to, uh, safely and legally transfer some money, wait some time, then reapply, you might get the help you need. One warning about Medi-Cal too...if there is ANY money left in your loved one's name and they are receiving Medi-Cal, get it out ASAP. Medi-Cal absolutely WILL pursue anything left in "the estate", even if that "estate" only equals a few thousand dollars you could use for burial expenses. Oh yes they do. If there is a cent in your loved one's name, it will become theirs. Many a family has been blindsided by "doing the right thing" and leaving all the money in their loved ones "estate"...thinking that after all was said and done they have money left to pay for burial...then they find out that Medi-Cal already took it. Beware. And one of the most absurd things about agencies like Medi-Cal is that they even want to know if your loved one has pre-paid funeral expenses. They figure that it's reasonable for you to sell that before they help you...even though that will leave no paid funeral arrangements and can ultimately leave someone ELSE in dire straights or the State left to pay the expenses anyway. How does that make ANY sense? What we did was pre-pay for the burial plot in MY name with MY checking account and then did all the paperwork for the funeral arrangements and had the payment on hold until his death occured.
We all pay taxes, we all pay into the Medicare system, and too many people who are law-abiding, good citizens cannot get aid no matter what they have or don't have. So cover your loved ones ass, so to speak. To me, I had a real problem at first bending rules because I didn't think it was right...until I went to the Medi-Cal offices and saw that most of the people there getting aid had Denali's and gold "grill" teeth and full manicures...while we struggled to find out how to make every dollar stretch to pay for halfway decent care for Daddy.
Now, as far as legal advice, all I can say is do what you know is right, but talk to people who have been there before making major decisions. DO NOT take the advice of just one lawyer, and do NOT take the advice of one person who has been in your shoes. Research in books, online, ask people, and do not be shy in being finding out what you need to know. Be your own advocate and do what is right for your loved one.

Lewy. Guilt tripper.

Didn't hear a peep from Dad until a little after 7am, which is good considering I didn't get to bed until 4:45am. And the 'peep' in question was seeing him flitter by my bedroom door...which is UPSTAIRS. He was walking into my 5-year-olds room...luckily she was already awake and in the next room with her brother or she may have been startled as well.
I was freakin' beat and I used my dark-circled eyes as daggers until Dipshit got up to help him so I could get up oh-so-slowly. I am in serious this morning.
Half a second later Dipshit's back in bed and says Dad's "fine". I let out kind of a growl and say NO WAY...sending him back to help Daddy down the stairs.
I mean, seriously, my Dad can't even sit down without falling half the time...how he gets up those stairs, I don't know...but I'm sure as hell not chancing him going back down the stairs alone. What then-husband was thinking, I dunno.
I get downstairs as quick as I could move myself and Dad's going in circles. I ask him what he needs and he says he just needs to get warm. So I take him into his room, and see his bed's a disaster. I remake the bed and he tells me how he's already tried to go to the bathroom but couldn't. He tells me he is SO thirsty and hasn't had a drop of water since last night. I help him put his shirt on, open the window for some fresh morning air, get him a cold water bottle, and he starts asking me...looking all hunched-over and sad...
Dad: "Is it a possibility that you can just forget how to go to the bathroom?" Me: "Uh-huh" (heart breaking into a million pieces and trying not to start crying)
Dad: "Really?"
Me: (clearing throat) "Well...yeah. Unfortunately the disease you have is making your brain forget how to do everything."
Dad: (voice cracking) "Oh. (pause) Well then I guess that's what it is because I can't seem to get my legs or anything to do what I want them to do. They won't bend or anything when I want them to."
Me: "I know. Your muscles are very stiff most of the time."
Dad: "Yeah. Uh-huh. So is it okay if I drink some water now?"
And his moment of clarity was gone.

When Lewy uses reasoning.

Okay, so to back up a little, I left off Monday night and I was planning on giving Dad Benadryl to help him (us) sleep. He had been VERY restless and grumpy at the end of the day and kept dozing off, so I didn't get to give him anything until about 8pm again. I decided to instead give him a dose of his Xanax instead...to calm him and maybe (?) help him sleep. I am not a fan of these types of meds, but now that he's been off the zillion other drugs he's been on, I hoped maybe we could see just what effect it would have on him, and either continue with it, or discard it altogether (I've still got all his med bottles in case he ends up actually needing them).
Over the next couple of hours, he got REALLY grumpy. He was doing circles in the kitchen again, and when we'd try to ask him if he needed help, he'd blame us for ruining his pattern. Whatever. He finally went to bed at about 10 pm, a decent hour in my book. We went to bed too.
At 5:45 am, I woke up when my 5 year old got up and came in our room. The time jolted me, because I realized Daddy had NOT woken us up that night. Thoughts of him being dead rushed through my brain. How bad is that...that my first thought when we actually get some sleep is that he's passed on...?
I go downstairs and find lights on, crumbs everywhere, several empty water bottles, and even an entire (blue-colored) gatorade bottle empty (and spillage).
So he didn't really sleep, he was just quieter, I was zonked out, or both.
As I assessed the "damage", I headed to Daddy's room, and he was totally out...but alive. Phew!
Hours passed. We all were awake, had eaten breakfast, showered, gotten dressed...and Dad slept.
And slept.
I took advantage of the time and read.
And read.
And read.
Finally at about 11:45 am, Dad scooted out of his room dazed. He just stood there, staring at me on the couch, like he wasn't sure if I was real. I asked him if he needed anything...and he said, "Yeah, I'm starving." I said, "Well, I suppose you would be, you slept through breakfast and almost lunch!".
So he ate, and I hoped he'd take a shower since he wouldn't the day before, but he said he was going back to bed.
He slept off and on all day and didn't really stir much until about dinner time. Then-husband helped him get his showering necessities together and we heard the water run for approximately 2 minutes before it was off. That can't be good. I knew my then-husband wasn't "going there" with Daddy...and I thought I just couldn't either. Cleaning up bathroom accidents has already pushed me to my limit as it is. I'm going to have to call some of my contacts to find about hiring someone, or revisiting the skilled nursing idea. Daddy is a big guy and used to be quite overweight...and showering him...I won't get graphic, but the remains of being extremely overweight does things to your body...and, well, I am just not showering him. Not gonna.
Anyway...
For the most part, his waking hours were okay. We found out he'd somehow broken the pole that holds up his clothes in his closet, and he did a bit of wandering, but nothing too exciting.
I was contemplating what do to about the sleeping issue tonight. Clearly, the Xanax helped him sleep, but obviously too much, and that was the smallest dose. As much as NOT sleeping makes him (and us) crazy, I don't want him drugged or not being able to stay awake during the day. That's one of the things that really burns me about facilities...all the residents are so drugged that they basically stay unconscious...and when they are awake, the effect of all their drugs makes them too woozy to have any sort of conversation or real interaction with anyone...as if their disease doesn't already do its part in that department. I don't want that for him if it can be avoided.
At dinnertime (5pm), when I was making his plate, I decided to crush up the same dosage of Xanax in his food, and see if giving it to him earlier, and with food, would make any difference. Worth a shot.
He ate a big dinner and ice cream and stayed up until about 9:30 pm. He had a few of his hallucinations about that weirdo "string" he always thinks is coming out of his hands and got agitated with me when I said I didn't see it. There are differing opinons from everyone on what is more appropriate to do about hallucinations. I personally just try to change the subject. It's always come back and bit me in the ass when I've gone along with it...those are the times he seems to remember all too well...and then the next time when you don't go along with it, he'll say, "but you said last time that you did see it". Oh, Lewy.
Right before bed he called out (but didn't scream) for help. I was right in the next room. He was annoyed that we'd given him a lopsided bed (?). I tried reasoning that his bed was fine, and level, and he argued, "See...right there...one end of the bed was higher, and lopsided!" I was so tired and I just couldn't say anything. He just stared at me and kept saying it was busted. I said nothing as I folded a blanket. He finally let out a big "arrrgh" and then said that he guessed he'd just have to make it work then.
I guess so.
Thank you, Lewy, for finally trying to be reasonable, because I think I was about to argue back if he kept pushing the issue.
I came downstairs at about 10 pm before I went to bed to make sure he was in bed and he was...and he'd turned off all the lights, so I turned on the bathroom and hall light for him.
I heard a noise about an hour later and went downstairs to check and the lights were off again and he was still in bed. I left them off and went upstairs and to sleep.
1 am rolls around...noise downstairs.
As I walk slowly downstairs, I hear this awful sound...but it's totally dark. As I near the corner of the kitchen, I can see the faint light from his bathroom...but as I walk into the DARK kitchen, in the shadows...is Daddy...standing at the open cabinet, eyes closed, one hand holding a bag of chips, and the other shoveling them in his mouth so fast that, seriously, it was almost frightening. It was this fast paced crunching and whoooooshing sound...it was like, well, Gremlins. You know when the Gremlins are eating everything and they are eating so fast and so loudly...? That was the scene.
Dad cracked his eyes open just enough and saw me. He immmediately started talking really, really fast, almost stuttering...
Dad: "Well, so, I was, just, just, just...soooo hungry...and well, I had to go to the bathroom and well, I, I, I, just...couldn't find, I, I, couldn't, I didn't, I, I didn't make it...and well, you said not to scream, and then I was hungry...and but...but, I couldn't help it and there's a big mess..."
Me: "Huh? Mess? Where?"
Dad: (annoyed) "Like I said, in the bathroom. I didn't make it. But you said not to scream so I didn't...and then I was hungry."
Me: (crickets)

I slooooooowly walked toward the bathroom, totally afraid of what I was about to find. I'm still looking at my Dad (it was like slow motion) as he continues to barrel through the bag of chips, and I turn my head as I walk to 3 or so feet to bathroom. Holy crap. It's everywhere. Simply everywhere.

I look toward the sky and imagine that my Mom is saying, "I told you so! Haha!!! Neeeeener, neener neeeeeeener!!!"

As I'm cleaning up, he is now crumpling the chip bag over itself, like, to close it up...and not only does the noise make me think he's going to wake everyone else up, but it dawns on me that he probably didn't even wash his hands and he's probably got stuff all over his feet...and he's in my kitchen...the kitchen we prepare meals in...that my small children get their snacks from. I shoulda known giving him his own snack pantry in his room wouldn't keep our food uncontaminated. I shuddered at the thought. Kid locks are going on the kitchen snack cabinet and fridge tomorrow.

I get the chip bag from him and throw it out. He asks if he can help with anything. I tell him that not drinking so much liquid before bed would help. That spurs the thirst conversation allllll over again and I remind him that he drinks about 3 bottles of water, gatorade and a (caffeine free) diet soda after dinner time (on top of the other 4 or 5 bottles of water or other drinks he has throughout the day). I get nowhere in this conversation. He's trying to reason that he MUST drink when he's thirsty, and he MUST eat when he's hungry...even if it IS at 1 in the stinkin' morning.
Then, as I'm finally mopping the floor, he's sitting in his chair and says to me, "You know, what IIIIII think would be a good idea is that you wake me up a few times a night".
Me: What?
Dad: I think what would help this situation is for you to wake me several times a night so I don't do this...
Me: Do what?
Dad: (getting irritated) If you would just wake me a few times in the night to use the bathroom, then maybe I wouldn't make a mess in there.

(Because me being getting no sleep is reasonable, and because me picking certain times to go to the bathroom would make him go when I wanted him to go. Sure, sure.)

Me: I think what would actually help is you not arguing with me over everything, backing off the liquids before bed, and staying in bed.

Silence.

By the time I got everything cleaned, it was almost 2 am, and I am painfully awake. I went upstairs to grab something and then-husband asks me if I heard a noise. Uh, yeah, I sorta heard a fucking NOISE. I explain the whole scenario, how I've been downstairs cleaning for 45 minutes, and he seems to (not really) feel bad that he got to sleep through the whole thing.
And so here I am telling you all about it. And Dad (and Lewy) are sound asleep.

Sleep Shmeep. Who needs it?

The day went okay today. Daddy pretty much just wandered all day. He sat on the patio for a little while, did his usual circles in the living room, and then-husband had to help him get ready for a shower again. It's new to him everyday now, and his rigidity is impossible. We have to bend his limbs for him several times a day to get him to be able to sit, or turn, or move. His brain is definitely shutting down. But it's so interesting that when the rigidity would be a NICE thing...like when he's getting out of bed every 20 minutes, he moves just fine.
In the evening, after the last two nights of very little sleep, I decided that I would give Daddy some antihistamine (one dose of Benadryl at 8pm) to see if it helped him go to sleep earlier than 1 or 2 am. Then-husband had a test that he needed to leave at 4 am for (and drive two hours to get to), so not sleeping could not be an option. Period. Dad's been off all of his other meds for a few days now, so I wasn't afraid of any drug-interactions...unlike all the craziness with the prescriptions he's been given for far too long. What I was afraid of was that it would have the opposite effect on him. My ESP was right on target.
Then-husband and I watched a movie downstairs and Daddy sat with us for about two seconds, then he got up and started wandering. Then he tried to bring a kitchen table chair to the living room, turn it around backwards and sit in it like a cowboy or something. I had to catch him from falling over...and this is not an easy feat, as my Dad weighs about 225 pounds and I am about half of that. Then Dad said he "needed to go cool off and get air" which we thought meant he wanted to go outside, so we said it was still pretty hot out...and he laughed at us as if we were just making excuses to ruin what he wanted to do again. He said he just wanted to go to his room, so WHY were we trying to confuse him? The nerve.
He laid down in his room for about a half hour until he started the peeking thing again. Peeeek outside the door, scoot inside. Peeeeeeeek outside the door, scoot back inside. Then he poked his head out and started saying loudly that we needed to come take care of the tub before it overflowed. This went on for a while and he was getting genuinely pissed off that we had "built his bed on top of the damn tub of water". How unbelievably rude and stupid of us! He was completely amped up and had NO grip on reality.
About the time we were done with the movie and were headed upstairs, Daddy came out and started doing circles in the kitchen. We asked if he needed help getting something and he very flatly said that he was just trying to get to his room (Duh! How could we NOT see that?). We pointed the direction of his room and he laughed again. He said, "Well, I KNOW that, just where the hell did you think I was going, anyway? But now you screwed the whole thing up and got me all turned around, so now I have to start over and it's going to take me even longer to get there."
Because turning around, going the RIGHT way and walking 3 feet to your room is JUST not an option. Sigh.
So we go to bed. Then-husband points out that I am the only one on night duty tonight. Really? You mean, like it usually is? Well that's weird.
Within minutes, loud banging was coming from downstairs.
To shorten this slightly, I will do a summary to cover the next 6 hours. About every 20 minutes, Dad rammed into the wall, fell off his bed, or walked into his TV (which is mounted high up on the wall). There was finally a brief period of time where I think he actually fell asleep, but then at about 4 am, our idiotic next door neighbors weiner dogs started going ape shit over god knows what. Daddy woke up and started screaming.
At about 4:30 and 5am, same thing with the dogs and Daddy screamed that people were trying to get in the house, that they were banging at the door and coming out of the closet. I assured him that we were the only ones there, and reminded him about the NO SCREAMING RULE. He said I just didn't understand.
We've had nothing but problems from the a-hole and his dogs next door. For the two years this guy's lived here, the first two dogs he had barked all day and night. A week before we knew Daddy was coming, I excitedly received my order in the mail...a sonic dog shutter-upper. I've mounted it at our upstairs bathroom window facing the side of his house where they come out of their doggy door and start wreaking havoc on everyone's sanity.
Last night the sonic thing didn't help because they were barking from inside the garage (an echo chamber of doom) and so it didn't set off the sonic blaster. There's a remote that I kept hitting that turns it on, but since they were in the garage, it helped very little.
On top of everything else, I will NOT have these dogs be yet another reason my Dad won't sleep. Not that talking to the guy will help, because he's this 20-something year old, stick-up-his-ass, white-bread boy who thinks he's black when he's drunk, and any attempts at reasoning with him in the past has been pointless. He's the idiot in your neighborhood who thinks he's "hot" and doesn't come outside unless his shirt's off...and he's the guy that only remembers to take his garbage out at 11 pm, which is also when he decides it's a good idea to tear up and stuff a year's worth of cardboard in the recycle bin...loudly. This guy says us being annoyed at his dogs barking could be remedied by keeping our windows closed. Yeah, this guy is FULL of common sense.
I did call the city about his dogs recently though when suddenly there were EIGHT dogs...3 adults and 5 puppies...all barking every 10 minutes. Animal Control came out and it sounded as if none of the dogs were licensed, which would mean big fines, but the freakin' dogs are STILL there. Maybe I need to call them again.
Anyway, at 5 am, I gave up on any sleep. The kiddies wake up around 6 am, so what's the point?
Another day of running on fumes.
Daddy ended up sleeping from 5 am to 10 am. 5 solid hours of sleep. Another record...but can we rearrange the TIMES, please? I made him breakfast and he went back to his bed and is asleep again.
I've notice from personal experience now, and from others' stories, that maybe a sleep aid can help...but it seems that people with this disease metabolize everything much slower and it doesn't take effect until everyone else is already ready to wake up for the next day. Tonight I will try the antihistamine again, but I will give it to him hours earlier.

Make Lewy go to SLEEP quietly.

Though the first night could've been better, it also could've been the second night. OY.
I had called my sister and was on the phone upstairs. I'd only been up there for about 20 minutes and Dad started yelling. I called down to him downstairs and said we were upstairs and that I was on the phone. He walked away.
About 30 minutes later, he started yelling again, "Helllllooooo? What the Fuck? Is anybody HERE, or WHAT?", and as I walked down the stairs, I was getting off the phone with my sister. My Dad was SO mad. He was yelling at me about the fact that we (me, my then-husband and our 5 and 9 year olds) were ALL inconsiderate assholes...WHY weren't any of us downstairs? What were we doing? Was he not welcome there, or WHAT? is what he wanted to know.
With phone in hand, I said that IIIIII had been on the phone, to which he screamed, "For a whole fucking HOUR?". I said, "YES! For a whole hour!" (How dare I! I mean, really! What rudeness!). Then he wanted answers about JUST where the kids and then-husband were...and I explained that the kids were in the bath getting ready for bed. This apparently satisfied him and he stormed off...which really means he waddled off into the wrong room, almost fell over, looked around in confusion, and then stared straight-ahead while he ran his hand along the wall until he found his room. He did this all with such determination though...so I could tell he was really trying to get his pissed-off point across.
After the kids were in bed, we tried watching a movie...downstairs...within feet of Daddy's room. My then-husband wanted to watch UPstairs, but I saw no use in trying that when it wasn't "officially" bedtime and Daddy would probably just start yelling at us from downstairs anyway.
About halfway through watching "The Notebook" (suiting, I know), Daddy started learing out of his room every few minutes. He'd poke his head out, then quickly pull it back in. Then again. Then again. This went on until about 9pm, and by then I was just too tired to finish the movie anyway. We went upstairs and got ready for bed.
By 9:30PM, Daddy was screaming. That damn lightswitch had disappeared again. 5 minutes later, he had to pee and someone had moved the bathroom. Then screams for help with, um, well, he couldn't remember why. Then more screams that he was blind. Then screaming for water. Then screams of having to pee. Again.
By around midnight, I was fed up. Daddy was cursing us repeatedly and would NOT stop yelling. He was yelling about how we should just open a door and let him run away, that we were useless, that we thought he was a fucking idiot, that we were trying to make him look crazy, that we weren't helping him with ANYTHING. In my exhaustion, I am not proud to say, that I yelled back. I yelled that I didn't see anyone else in our family (my sister or brother...) here helping him, that no one in the last 3 years had let him live with them, that neither my brother nor sister were here cleaning up his pee all over the floor, and that if he insisted on continually YELLING, I was going to YELL back. He screamed that it wasn't HIS fault that someone 'kept moving the fucking bathroom and that he had to piss but couldn't'. I reminded him that he had drank a WHOLE lotta water and diet soda since dinner and that maybe it was a good idea to cut back on the liquids so he wouldn't have to pee (or think he had to pee) every 25 minutes. He started coming at me with his fist flying toward me as he was yelling that we all just think he's a fucking idiot asshole.
I yelled that he'd better get in his room RIGHT now, and then I stood there, quietly, with my arms crossed and eyebrow raised until he walked to his bed (I was trying to be firm with him even though I was actually scared that my 225 pound Dad was gonna whoop my butt right then and there).
He got in bed (at 1 am) and didn't wake up until 7am.
With the exception of the night before, that is seriously the longest he's slept or actually laid in a bed for over 2 years.
This morning he was very calm. He did a LOT of wandering, and needed A LOT of help with everything. Again, he didn't remember how to use the shower, and couldn't remember how to sit down. I literally had to stand him in place at the table, scoot the chair beneath him, and bend his body to get him to sit. He was just completely frozen.
It's about 5pm as I type this, and I am a little stressed at what the next few hours will bring. The last two nights have been extremely draining. I feel awful that I yelled at him, and as much as I know that most of this is Lewy coming out, I also know that my Dad has never been a very easy person to reason with. Though I know from experience that some of the things he says are out of frustration, what he says are STILL real words...and when those real words are being screamed at you at 1 am, when you haven't been allowed to go to bed and after not sleeping much the night before either, it's hard to reason with your exhausted self that you should just not respond or at least be a lot calmer than I was about it.
Please GOD, let there be peace and SLEEP tonight.
Amen.

The First Night is Over.

The first night went better than I anticipated, but I still didn't sleep.
Then-husband and I were beat from the day of moving so we went to bed early. I was dead asleep by a little after 9pm.
10:45 pm came with screams. Downstairs, my Dad was yelling, I think as loud as humanly possible, "Hellllllllooooooooo? Helllllllllloooooooooooooooooo?".
I was on my feet and heading toward the stairs before I even realized I was awake. I've never done that before. It scared me, I must say.
We go downstairs and he was "lost" between the two feet of hallway that separates his room and his bathroom. He couldn't find the lightswitch. So he decided it was a good idea to scream bloody murder. I think I was calm and just showed him where it was and he apologized.
We went back upstairs.
I was so amped up that I tossed and turned until about midnight and then got online.
At about 2 am I decided to head to bed to try sleep again and I noticed that my Dad had turned on EVERY light downstairs. I went down and turned them off and I then noticed that he'd opened his blinds and curtains...BUT...he was actually asleep in his own bed. Miracle! Except for when we picked him up, he hasn't slept in a bed in eons.
I didn't hear a peep out of him until about 7am.
Glad someone slept. After he'd screamed, my nerves were so shot I couldn't come down from it, so I never did get back to sleep. I am exhausted.

Bringing Daddy back to our house.

Everything went rather smoothly. I admit, I am shocked, actually. He was sleeping IN HIS BED when we got to The Stratford to bring him to our house again.
But...they had taken his chair out and shampooed the carpet...and did not put his chair back...which basically forced him to HAVE to use his bed. I'm a little peeved that they felt the need to shampoo the carpet before my Dad was even gone. Seems a little pushy and/or tacky. But whatever, we're outta there.
When we got home, we got everything out and sorted, and I started washing everything. I felt the urge to wash ALL of his clothes and sheets, etc...stuff in facilities just never smell right and I want a fresh start! We got him all set up, hung his fancy TV on the wall, and got him organized. He paced a bit while we were working. He seemed to be turned-around a little.

Will any place ever be good enough?

So.
Dad moved into the Private Room at the Stratford. I was so happy I could barely contain myself. I was looking forward to what it was like when he was there before...I had a little time to rest for once, and I had peace of mind that he was actually being fed and given his meds and, hmmm, not being harrassed over intercoms...
But this time around something had changed. Dammit (shaking my fist at the sky).
Within the first week, I was called about 13 times...not by my Dad, but by the people that worked there. If they didn't get me at home, they'd immediately call my cell, which I ONLY use for emergencies. These weren't emergencies. It would be "to let me know" that Dad had bumped his elbow, Dad had an accident (didn't make it to the bathroom), or something else that they really didn't need to tell me right then or at all. Of course, if he had a new bruise, then yes, let me know so when I came in I wasn't wondering, but it never was.
Then I started getting phone calls at 2 and 3 am. Uh, NO. And again, NOT emergencies...Daddy wasn't on his way to the hospital, they were calling me at 2 am to tell me that he'd had fallen out of bed...but that he was fine. Uh, okay, then call me at freakin' 8 am! Maybe that sounds cold, I don't know, but waking an entire household of people for a bump...please.
Then they started sending him to the ER. Oh, here we go. I got bills for MONTHS just for the first ER visit...for a goddamn bandaid. NO, not kidding. He'd wandered into someone else's room, scraped his elbow somehow, and when a caregiver asked him what he was doing, he said he "thought" maybe he'd bumped his head. So, though they saw no SIGN of a head injury...no bump, no swelling, no redness, no word from him at an area that hurt...off to the ER he went...and $3000.00 later, that was one hell of an expensive BANDAID.
Then there were the Stratford caregivers. Some of them were the same from before, some weren't. A few are really great people and are definitely in the right career...they are compassionate and caring and try to use common sense before only utilizing "policies" that don't help anyone. They help us and don't make our lives harder. Unfortunately they are the exception.
The dementia area is divided...there are two little dining areas to keep some people separated...some get a little loud and rowdy at times, so I can see how having "separated" areas could be beneficial. Each side also has this long row of recliners in front of the TV's each side has. One caregiver would ALWAYS be sitting in a chair behind a recliner (a recliner that had a resident sitting in it), resting her head on the back of said chair...ASLEEP.
Another caregiver, who called me one of the times at 2 am to tell me about something completely ridiculous, wouldn't even make eye contact with me anymore after our badly-timed call. Apparently when someone gets called at 2 am, you're supposed to be AWAKE, perky and ready for pleasant conversation...? Uh, no, I will not apologize for being groggy and saying "what?" at least 3 times at TWO in the morning. Not only was I dead asleep, but I JUST couldn't wrap my head around the fact that I HAD to be called at that time to be told, "Hi, this is Annoyalita from the Stratford...you're Dad is fine, but he scraped his knee."
I replied, "Uhhhhh, okay...so wait, he's okay?" to which she replied, "Yes, he's fine". Back to me: "So...then couldn't you have called me at say, 7 or 8 am to tell me this?"...to which she said she was "just doing her job".
I had to have an actual conversation the next day with the Director about the fact that, no, it really was not necessary to call me in the middle of the night unless it's a real emergency. I mean, why the hell would we go against everything we believe in by putting my Dad in a facility and pay out the rear for care and false peace JUST to be woken up at all hours with stupid nonsense...? Hmmm. Me thinks we wouldn't.
So anyway, lots of little annoyances kept happening this time around at the Stratford. Some things were not their fault...like the fact that they must go along with the exact Doctors med. order...if that makes no sense it's because you haven't been there yet. When you get a prescription, clearly it (and/or your Doctor or Pharmacist) tells you what dose to take. And, usually they tell you if that dose doesn't work, to take more, or half, etc. In my Dad's case, he's always given some prescription that has the possibility of making his symptoms worse, to which, if that happened, we would change the dose or stop it altogether. If he needs to change dosages, it takes a ridiculous amount of time to do this. There are faxes, too many phone calls...and then if the Dr. even responds, it's more calls and faxes. Too much waiting when I could just change the dosage myself or stop calling in for refills! I am pretty well versed on on these insipid meds by now, and I use a pill-cutter like a champ. Facilities can't do that. There are too many regulations that prevent any sort of smooth flow to anything, and it really becomes more work for family members.
All of the residents of these facilities are on so many drugs, it's insane. Probably none of the meds are doing them a damn bit of good, but most of these people have been dumped off and no one speaks for them or the fact that their sleeping pill is actually keeping them awake or causing them to roam the halls all night. Then there are the drug interactions, the "possible" drug interactions, the side effects you can definitely expect, and the side effects you "may" expect. And then with my Dad, there is a huge list of drugs that he should NEVER take because of his particular disease. You can find this information everywhere, yet most Doctors are just pill pushers. They say that the benefits "probably" outweigh the risks.
NO.
I think I can say with confidence that my Dad on over half of the available anti-depressants, anti-anxiety meds, anti-psychotics, cholesterol lowering drugs, blood sugar stabilizers...you name it, he's taken it. Never have I honestly seen any of these drugs help him more than they hurt him. Even the "miracle drug" Aricept that he's been taking has "coincidentally" caused complete insomnia, more rigidity (Parkinson's symptoms) and an overall sense of doom. When I've asked his Doctors about this, they just stare. My Dad is a lost cause to them. He has a terminal illness, and all of these issues with meds are inconsequential, like...why does it matter?
Anyway, life in a facility is harder, not easier. The only people I've come across who are truly happy with how their loved one's life is like in a care home, are the one's who don't visit or are completely numb to anything really happening.
It's true that my health had gotten worse since taking all of this on, and that I have had to sacrifice time with my children and friends (the ones who stuck around anyway) to take care of what I think my Dad needs and deserves. I know that I should've maybe built up some sort of immunity to all of my Dad's complaints or my expectations...well, I don't know...I guess. I know that if I were the one with dementia, I would be heartbroken if my kids had to go through what I've gone through with my Dad...all the hassle, frustration, tears, guilt...and nothing really ever changed or made him happier anyway. I just don't know. It's a struggle to find balance. Maybe the people who drop their family members off are half right and I'm half right. Where is the happy middle ground? Where? Is it better to be selfish and go on with my life, knowing that he is in a facility, miserable and sad? Would I even be able to do that? How could I move on at all without guilt overriding everything, including sleep...oh, beautiful sleep that I have missed...when he is lonely in a facility with strangers?
BUT...how am I really doing anyone else in my family, or myself, any good by being completely burned out, exasperated beyond belief and unable to enjoy life...what little life I have, anyway?
All I know is that there's been no real peace in any facility he's been in so far. I fail to see how paying over $4000 a month but still receiving phone calls at 3 am, having to rush over, stopping everything I'm doing, dragging my kids from their lives and dealing with pissed off or lazy caregivers makes any sense. But does it make sense to bring him here, knowing that, yes, we won't be shelling out $4000 a month, but our lives will be 100% devoted to him and his hallucinations and needs?
I was still at odds with what was the right thing to do here, versus what is reasonable...am I really supposed to not have a life to make sure my Dad has a resemblance of one?
All I do know right now is that no facility we've found is good enough.
Some are so horrible that no living thing should be there.
Some have potential, but I doubt they will ever live up to it.
And ALL of them are failing to see that whether you are one of the family members who drops your loved one off and never returns, or you are like me and comes in probably too much...the decision to place someone in a facility is hard. REALLY hard.
Every facility is only as strong as the people they employ and most are sorely lacking in people skills, understanding or sympathy for the reality of the situations the residents and family members are truly in.
After far too much deliberation, and being sent to the edge of insanity, we decided to bring Daddy to our house again.
At the very least, even if it's going to be temporary, one thing I hope to accomplish is to detox him from all his medications. Once this is accomplished, we can see where Daddy really is in this damn disease. When sleeping pills chase away sleep even more so, diabetes meds are keeping his blood sugar dangerously low, the depression and anxiety meds seem to be about as effective as a candy bar...something has to give. No Doctor is willing to admit the drug they've prescribed is making things worse, and the facilities are not allowed to stop or change any prescription without the consent of the ignorant Doctors, so I feel this is a necessary evil to face....to, at least for the sake of getting him off all of these drugs...to bring him to my house in order to do that. Bringing him home, my God, the thought makes me nauseated...but I refuse to pump my Dad full of more drugs and keep him in a vegetative state so he's easier to deal with. He's been on and off soooooo many drugs over the past few years, it seems impossible at this point to even know what behavior is caused by what...is it the progression of the disease? Side effects? What?
While I am ALL for people taking medications that help them, I don't see how anyone with diseases like this are being helped by adding more drugs. There IS no cure. There IS NO wonder drug that really even alleviates symptoms long enough to be worth the trouble they cause.
Aricept can cause more symptoms than anything it can really help. I don't see how taking a drug with so many possible side effects is worth it when you might have an extra 10 minutes of clarity a day. If it was me, I would want nature to take its course. There is no quality of life anymore. Anxiety, paranoia, restlessness, and wandring rule the day and most nights. No drug has changed that. If anything, they've made things worse.
So detox here we come.
We've been frantically getting everything into place...setting up the downstairs rooms, dementia-proofing everything with locks and deterrents, and the thought crossed my mind too that he should have his own pantry of snacks in his room too. This, because, well, he snacks...a lot...and honestly...unless we are going to start washing his hands every half hour...ew...I just can't bear the thought of allowing my little ones to be sharing the same box of crackers with Grandpa when god only knows where his hands have been or if he washed properly after using the bathroom.
Ugh.
His room is all freshly painted and waiting for him. The downstairs portion of the house is ready. I hope. We'll see.

St. Satan's Assisted Care Facility.

So, once again I got everything ready to move Daddy. The room Daddy was to have at St. Francis was getting new laminate flooring and they were going to paint and upgrade the fixtures. But, right off the bat, the day we were moving him in, there were outlets with loose hanging wires, the flooring wasn't even completely finished, the patio door didn't lock, the screen was hanging off, there were 3 cable outlets (one worked) and the shower head...dear god, that shower head was so disgusting and covered with god knows what...I took it off and marched it downstairs to the Administrator myself. She acted a little put out but agreed that it needed to be replaced, that they had extra and one of the workmen doing renovations would bring me one right away. HOURS later, we returned after taking my Dad to eat, and I noticed the "new" shower head. It had what appeared to be spackle, dirt and caulking all over it. Whatever it was wouldn't scrape off, I tried. I removed the shower head and took it back to Betty, the Administrator. Again, she was "put out", but said that the owner had just come in and he would just go get one at the store. Um, yeah, ya think? I also said that I expected the loose wires and everything else to be fixed. Apparently I am QUITE the Primadonna.
So we finally got Dad all moved in to St. Francis. His room was a good size, and he just had the one larger room and a bathroom this time. We thought that may help him not misplace everything. He was excited about the fact that the facility had a large outdoor grounds area, so he had plenty of room to walk himself senseless...it had an automatic fence for the cars to come in...they called it a "wanderguard" to keep the wandering alzheimer/dementia residents from escaping. Despite the initial problems with the lousy shower head and wires, etc., I was trying to stay positive that things would get better.
Within a few weeks, The Chair Man was back from vacation. Again, the caregivers and residents were having orgies. Dad said he was being cussed out daily by the caregivers. He said they'd tell him he couldn't leave his room. He said they'd yell at him. He said that people were talking to him through the TV and Nurse's Intercom.
But then "actual" things started happening...and I began questioning the previous incidents that appeared to be hallucinations. Daddy knew that at night, he took 5 pills. He'd call me and say he'd only gotten 3, so I called to make sure. Turns out they DID let his meds run out and "forgot" to reorder. A few times they didn't feed him...either didn't remind him to come eat or didn't wake him when he slept through breakfast AND lunch. Of course I complained because CLEARLY my standards are far too high, right? This is how I was treated...that I was overreacting. Clearly no one else really expects their loved ones to be fed or given their meds.
One afternoon, Dad said that Betty and Michelle, the Administrators, had "taken off". For whatever reason, this "delusion" struck me as extra-odd, and I decided to call the front office to ask if they were there. I did have a few things to ask them about...like the fact that no one ever painted or finished the floor or fixed the sliding glass door...it still didn't lock and the screen fell off daily. Betty and Michelle weren't there. Some new Med. Tech. said they'd left the day before without notice...left no notes about some of the resident's care, where keys were, nothing. Just took off.
A new Administrator came on board that week...and the way I found out about and met this Administrator, Gina, is quite a tale in itself.
One afternoon I had gotten home from errands. I was listening to my messages, and as usual, there were about 7 messages from my Dad. He was having serious hallucinations this day, so I was hitting delete without listening to them. I'd found that Daddy would have forgotten all about his daily traumas, but I didn't, and it disturbed me, so I deleted everything and just called him instead, knowing that he wouldn't even know what he said on my machine. So, there I am, I'm hitting delete over and over and just happen to push away from my desk while the final message continued to play...
I froze.
Inbetween my Dad saying it was really, really, really, reallllllllly important that he talk to me, there was a noise, a voice. I literally got goose bumps. I replayed the message at least 6 times. To be honest, my first thought was to question if my Dad had been right all along...what if all these people he saw were REAL...that they were ghosts or spirits...and that my machine had freakin' caught one talking to him?! But after each time I listened to it, literally pressing my ear up to the speaker with the volume up as loud as possible, I realized what it was. My Dad was talking, then there was a beep (the alert that someone is about to talk to you on the Nurse's Intercom), then a woman's voice was saying things like, "I'm the man in your chair! Look at your chair!"
My Dad was interacting with the voice, asking the voice where they were, to which they would answer, "Look at your chair! I'm in your chair! Look! It's bumping up and down!" He said, "Where? I don't see you!" and the woman just kept antagonizing him.
To say I was floored, my god...my adrenaline was pumping like never before. The anger building up inside me made me realize I am capable of murder. If the person who did this was in front of me at this time, they would have died a horrible death, or would have at least spent months in the hospital.
I phoned St. Francis, and this "Gina" answered. To say our introduction was less than stellar would be kind. I was mean. I was loud. I had no idea who she was and I was loudly explaining what I had just "accidentally" come across on my answering machine. She seemed horrified, so I calmed down a bit. She told me it was her third day as the new Administrator, and I tried to play the message for her over the phone. I ended up in the car within minutes and she called a meeting with the 3 caregivers on duty at that time. I was not nice. I was not calm. We called my machine from Gina's office and put it on speakerphone for them to hear. They all denied it, despite the fact that minutes before I got there, one of the caregivers admitted she knew what happened, but that, of course, she didn't do it.
I called the Police, the Ombudsman, and every reporting agency that dealt with Elder Care or abuse. The Police Officer initially took the report and recorded the message, but he would never return my calls after that. Not once. The local Ombusdman, to this day that I know of, did nothing. No charges went through. The caregivers weren't even fired. They ended up leaving on their own because I was there ALL the time now, many times a day at odd hours, watching them. And Gina was watching them. Clearly they didn't like working anywhere they were held accountable. Good riddance.
I felt impossibly horrible after this. What ELSE had happened that we didn't know about? Were any of his other hallucinations true? He had flat out TOLD me that someone had been talking to him through the Nurses Intercom. He TOLD ME...and I didn't believe him.
The owner, Baleir Dhillon, called me after this incident. He seemed genuinely apologetic, and he and and Gina promised that nothing like this would ever happen again, and they asked if I could please give them a chance to prove that. Knowing I was up against a wall to find another facility ASAP, I let him stay to see how it went. Surely it had to get better now, right? They would be on their toes and be ridding themselves of all the irresponsible, sarcastic, annoying caregivers, right?
Screeeeeeeeeeeeeeeeeeeeeeeeeeeeech!
That is just the sound of Satan's front door opening a little wider, so they get a good look at you while you walk through.

So. Over the next two or so months at St. Francis, his meds ran out at least 4 more times. Meds that he had to take every day...for diabetes, cholesterol, depression, anti-psychotics...some of these meds are such that, if missed, the effect/benefit can just stop. Or, you can have serious complications, side effects or withdrawals. More times than I can possibly count, he wasn't fed. I kept dozens of receipts for meals I had to go buy him when he'd call me crying that he was hungry...or I'd just pick him up and bring him to my house, or bring him food that I had cooked if he wasn't feeling well enough to get up. My Dad was saying that caregivers were being mean to him and that when he would respond, they would say, "What are gonna do, huh? go get your daughter to come teach us all a lesson like she did last time?", and that they would laugh. I brought everything I saw or heard to Gina's attention. She said she was doing everything she could do, but that she couldn't just fire everyone since it was really difficult to find any help at all.
I started believing almost everything he told me and questioned everything.
Other residents, because they saw me there constantly, started asking me if I could help them fix something for them too, and I also began bringing baked goods from home for people. I fixed door knobs, put batteries in smoke detectors that beeped for days or weeks...this place was a HOLE. My Dad's complaints got so bad that I started coming to the facility at odd hours. One time I came at nearly midnight, hopped the fence and came in through the back entrance so no one would see me drive in the gate. There were no employees anywhere. I went from room to room on both floors. Either the rooms were dark with the door closed or doors were open with no one in them or residents sleeping. I checked all the bathrooms, the usual smoking spot for the lazy caregivers...there was NO ONE working. NO ONE.
During this same time, right before Christmas, we had finally found a buyer for Nany's house. Oh, yes, all this time it had STILL been for sale...all this time, dealing with all this other crap, I was trying to sell a house two states away. I went through two real estate agents, bastard cousins going into the house and helping themselves to appliances, the roof leaking, the water heater exploding, water damaging walls and flooring that had to be replaced, finding out that the "someone" had filed a false claim on the roof AND had been mailed a check for thousands of dollars...oh and there's SO much more, but basically...everything that could go wrong DID. So, 11 1/2 months after Nany died, her house finally sold...and Daddy would get that money...so he had a little bit more to work with as far as finding a facility, but it still burned my butt knowing that there had been another $200,000 out there that could make his care situation/life so much easier. But life goes on.
So Christmas and New Years came and went with what became just usual behavior: drunk people in and out of St. Satan's. I tried to ignore it, knowing that he'd be out of there soon, and I was so freakin' happy about finally selling Nany's house, I really, REALLY tried to focus on the good. It's not as if ANY of the so-called agencies that exist to help elder abuse or neglect were doing a damn bit of anything about this situation anyway. NO phone calls were ever returned, even after the harassment over the nurses intercom. This system is a fucking joke. Unless someone DIES, they do nothing...and even then, it's not enough. Unless a relative is accused of stealing MONEY, nothing is done. All the poor, mentally and physically abused and neglected elderly residents sitting in their own filth, barely being fed, not being given their medications, being left in a hallway to rot in a wheelchair...they are expendable. They mean nothing. These agencies know that there is a never-ending supply of these people and that eventually they'll get around to helping "someone", but not until they feel like it. We were on our own, and I knew it.
I brought my Dad back to St. Francis on X-Mas after he spent the day with us. ALL over the front lawn were alcohol bottles. Two trashy looking men sitting in some 70's looking Trans-Am type of car were sitting in the car inside the PRIVATE parking lot. They got out of the car when they thought I was inside, but I watched them from the window since I was ALWAYS there and I had NEVER seen these guys before. They staggered out of the car and left their bottles on the ground next to the car. I told the first caregiver I saw, Tracy, who was really the only one who ever did any work or seemed concerned about anything or anyone about the men, and she was very upset. She then found the other caregiver on duty, who basically said she knew that these men were family members of a resident there...she wasn't at all concerned that they were rip-roaring drunk. Tracy just walked away when the other caregiver didn't share her concern. So I called the Police and gave them a description of the men and the car...right before they drunkenly drove off. I have no idea what ever came of that...when I told Gina about it, she acted like this was just another one of my "ridiculous" complaints.
New Year's day I came early to visit Dad, about 8 AM, and ALL over the front lawn were about a dozen beer cans. Litter was everywhere. I can only assume that the caregivers on duty the night before had their own little celebration. Nothing ever came of any of this either.
At this point, I was asking Gina every few days that I wanted the owner to call me. He didn't. For about a month and a half, I asked that he call me. Nothing.
In the meantime, we found out that a private room was about to be available back at the Stratford. I was ecstatic at the thought. Besides the fact that my Dad was constantly upset about having the roommate who ended up passing away the last time, the Stratford had been amazing. We had about a week until move in and I could NOT wait.
The last (prorated) month of rent had been due at St. SATAN'S, and for whatever reason, be it fate or complete coincidence, the check I had given to one of the caregivers to give to Gina never found its way to her hands (never was cashed either). She called me during that last week and asked if I had paid it or...?...since I was never late with a payment before. I told her I had given the check to a caregiver weeks prior...but after I got off the phone, I thought about it...and then told Gina that I had canceled the last check and would write a new one when the owner decided to call me. Gina said that wasn't fair. IIIIIII said "what wasn't fair" was all the harassment my Dad endured, the meds not given to him, the FOOD not being fed to him. She said nothing to that.
And...wouldn't ya know it...after nearly TWO months of basically being a pest with my requests for a call from the owner and no response...when I said I wouldn't pay the rent...he called me within 3o minutes!!!!!
We had a very heated conversation about all the things that occurred during my Dad's stay. All this idiot could say was that he had "put $400,000 into his facility"....and there is NO freakin' WAY that place had that amount of money put ANYWHERE unless they had buried it in the yard. When I continually pointed out all the things caregivers had done and said and how he was SO completely absent and neglectful as the owner of a facility that should be EXCEEDING the State's far too low standards...he had the nerve to tell me that I was RUDE and had NO idea what kinds of 'personal problems he was dealing with at that time'...that I had NO right to assume ANYTHING about 'his person' and that he was NOT absent or neglectful and that though we had been through some hard times at his facility, he had APOLOGIZED for that and I should just pay the rent and be done".
AHEM! (that was me clearing my throat for the severe tongue lashing that was to come)
To sum up, I basically told the worthless piece of crap that he was a slumlord and that he was not only NOT going to receive the final rent, but that he should consider JUST how lucky he is that I had not filed a LAWSUIT against him, AND held him responsible for all the meals and expenses we paid when we had to rush order my Dad's meds or for all the meals his incompetent idjits didn't give my father.
He said that I should come visit his facility again in a few months and he would "prove me wrong"...that I would SEE what a fabulous place he'd have THEN.
But apparently he agreed with me, 'cause I never heard a word about paying them again!
All I know about that facility as of now is that a woman from my support group placed her husband there after I pulled my Dad out and 5 days later he was DEAD.
I hope the place burns with the owner and caregivers inside.