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.

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.