Thursday, May 29, 2008

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.

Monday, May 19, 2008

Enter the Assisted-Living Facility.

After an intensive search, exhausting all of my patience and time and faith in myself to care for Daddy, I found an assisted-living facility that didn't resemble an abandoned whorehouse: Paramount Park in Turlock.
The cost was astro-freakin-nomical. $3700 a month (of course now I know that is CHEAP as far as facilities go, which is just UNbelievable), which Daddy could afford for a while since he got the money from Nany's passing.
I was very upfront with the staff at Paramount Park about my Dad's symptoms and that he'd been diagnosed with some sort of dementia. The Administrators seemed confident he would do well at their facility, but of course, if he became too much to handle, he would have to move to the other end of the facility, which was the "dementia unit". The facility was really very nice, hotel-like. His room was much like a regular apartment...he had two rooms, like his Senior apartment...a bedroom, bathroom, and small living room. There was a small kitchenette where he could have a microwave and refrigerator. They would take care of all his meals, laundry, even meds. We'd been storing all his stuff from his old place at my house, so we moved it in. He was set. Things were going pretty smoothly.
But within a few weeks, the hallucinations started back. The Chair Man returned. The staff was having sex with each other. The residents (all at least in their 70's) were having orgies on a daily basis. Someone kept stealing his keys, his money...and his car...the one I'd sold quite a while back.
My visits became a daily thing again...sometimes more than daily. The calls, because he had his own phone, were too numerous to count. The nasty messages, the yelling, the urgent need to have to me come over, right then, and not a second later. Of course I'd go and find everything he said had been stolen right where it should be, or maybe just on a different table, but still in plain sight.
The management at Paramount started telling me he was "scaring the girls"...the girls, meaning the caregivers. I said "the girls" needed to get a different job then...because unfortunately this is exactly what came along with assisted living facilites...illnesses of old age...what's to be "scared of"? He wasn't violent, he was wasn't threatening anyone, he was just anxious about these DAMN people that he saw everywhere! "The Girls" were all barely 20 years old and looked scared of their own shadow to begin with. I thought perhaps they should go back to the Burger King drive-thru window where they belonged.
The facility started calling 911 and sending my Dad to the ER because of the hallucinations. Ridiculous...what is an ER going to do? The ER doctors, even after the 1st visit, were furious with the facility. They treated EMERGENCIES, not hallucinations caused by an incurable illness. One of the caregivers talked to me privately and told me there were other things going on there that weren't right, things I won't list here ONLY because they are heresay and I didn't see it myself...although I do believe she was being truthful and it wasn't pretty.
After one of the times they sent him to the ER, Paramount Parks Administrator told me they were refusing to allow my Dad back at their facility. Uh-NO. Oh, to be able to replay that conversation...if only I could. Long story short, I reminded them how they INSISTED they were fully equipped to care for my Dad...that I had asked if he needed to be in the "dementia wing"...but at their "assessment", their opinion was that he was able to live on the "assisted" side. Oh, I went OFF. And the ER Dr., this Hector Lopez jerk, was SO unbelievably condescending and basically denied ANY sort of care to my Dad, but they couldn't and wouldn't release him. Uh, how the hell does THAT work, exactly? After about 18 hours in the ER, no food, barely any water (yes, you suck Emanuel Hospital), and a few choice words later, Daddy was released, and Paramount Park DID allow him to go back that evening. Bastards, every one of them.
On the last trip to the ER, there was an actual reason for him to go...he'd "accidentally" drank peroxide. Daddy said he thought it was a bottle of water and was very annoyed that we thought he would purposely drink peroxide. My argument to him was this: what's worse...that he drank it on purpose knowing it was peroxide, or that he thought the enormous brown bottle of peroxide was water?
I got into the conversation with the Nurses at Paramount about moving him to the actual "Dementia Unit" portion of their facility. They told me they were not trained to deal with him. This was frightening to me. They advertised being equipped and trained to care for people with dementia's, alzheimer's, etc., but they couldn't handle my Dad? His disease was only in the beginning stages at this point...so I wondered outloud just "who" they accepted or were "able to handle" then? They actually admitted to me that "they preferred" dealing with residents that were "pleasantly confused".
Pleasantly confused.
Show me ONE person with any kind of dementia that stays "pleasantly confused" and I will show you this tree in my backyard I genetically modified to grow real money.
The idiocy is magnificent.
So the search for another facility began. Again.
And my search for more advice from a lawyer and/or financial people began. My brother had come with me to set up CD's for our Dad so he could gain interest and hopefully not run out of money. But everytime we dealt with people they acted one of two ways. Either they looked at us cross-eyed, I'm assuming because of our ages and the amount of money we were open accounts with...or they'd take one look at those zeros and say stuff like, "Wow, well, I can see that you are one of our executive clients" and practically drool all over the place. I wasn't shy with these people, I flat out said that this was NOT my money, I just handled it for my Dad, who they'd never see, so the drooling and fake fawning could stop.
I toured so many facilities I lost count how many I saw. I revisited a few I'd crossed off my list the first time and crossed them off again. Some places that advertised they cared for Dementia patients now said they didn't. Some acted like Dementia was the plague and said they didn't admit people with Dementia. Turlock Rehab and Nursing told me that they can't care for demented people, but I now know that at least half of the people in my support group (for caregivers of people WITH Dementia) have had their loved ones at this facility. Some places welcomed me to come visit their "home-like residences"...many were listed with a zillion gold stars and touted as "so great when my Nana was there"...and they were actually ghetto-riffic ratholes whose caregivers sat in a circle of cigarette smoke outside or looked like THEY needed to be "cared for". I was disgusted.
Some smelled like dog urine (Season's at Modesto). Some had people sitting in wheelchairs drooling on themselves in hallways, clearly neglected. Some had people sitting in wheelchairs drooling all over themselves OUTSIDE with flies swarming all around them (Lifesprings in Turlock). Some had caregivers so young I knew there was no way in hell they'd be able to handle much more than a frail little lady who just wanted to be served tea. Some had mostly foreign caregivers that seriously spoke so little english even I had a hard time understanding them, so I knew someone with a mental impairment would be completely lost in their mumbled words.
My Dad was "lucky" that his mother had passed and left him money, because there was no way any of us could contribute to the costs of any of these facilites, if I ever found another one I could even stomach the thought of leaving him at.
I found a support group in my area and got my brother to come with me the first time. I needed answers from people going through this nonsense. I needed advice from people who'd dealt with this...talking to financial people and lawyers was a waste. If you talked to 3 lawyers, you got 3 different pieces of advice. I didn't want their "facts and figures" and "what's supposed to happen". I wanted reality.
I came across the Stratford in Modesto (angels singing!!!!) It was this really nice, hotel-like residence with one "assisted" side and a side solely dedicated to people with dementia.
The Staff would take care of all his needs...meds, food, etc. The only catch was that he'd have a roommate because it was the only room available at the time. But we had to compromise. Daddy was against the idea, but we had to try. We told him it was temporary until a private room opened, which was true because he was first in line to get one, not that we planned on doing that unless he didn't adjust (everyone I had talked with so far had said they thought having a roommate was better for him since he tends to isolate himself constantly). The place was great...they handled his hallucinations and everything with ease. So much so that I never really heard about what he was doing unless I asked them. And they'd just shrug it off because they knew he was just acting like someone with Dementia. What? This must be Heaven! I felt like I was getting a mild break from all the madness.
But then came the GUILT. How could I have put my Dad in a home? What was wrong with me? Was he really that bad, or was I just remembering his behavior wrong?
Now, they only let Dad call once a day, but he was freaked out when he did. And when I'd visit, he was SO upset about the roommate thing, I just couldn't stand it anymore. Then his roommate 'went away' to get his meds straightened out because he'd gotten combative. Poor guy never came back, he passed away in the hospital.
So, Dad's roommate was now gone and there weren't any moving in yet, but Daddy didn't even want to look at the empty bed, knowing what it meant. His hallucinations, while they (finally) weren't bothering anyone else (like the previous insipid caregivers), they were bothering me. My Dad was also upset because this new place really didn't have a lot of room for him to walk, which was "his thing". He loved to walk now. It was his only outlet. And of course, the whole issue of him being "locked" inside was not going over well. Though this place was awesome and I was getting the first break in quite some time, I wasn't happy because my Dad wasn't happy. I wanted him to be able to have an area to walk outside. I wanted him to be at ease with where he was. And I caved. I was stupid. I let my guilt at the fact that he "wasn't happy" get the best of me.
Sigh.
I began looking at facilities again.
This time, out of exhaustion, I allowed my Dad to look for himself at the ONE facility left in my area that would even take him...that I could with any conscience let him stay in: St. Francis Assisted Living in Turlock. It was one of many I had crossed off my list twice because it really wasn't very nice. It was older, and in need of repairs. But this time around, they were doing renovations. This gave me hope...?
My Dad was happy about the place. With the upgrades, and what was supposed to be coming, I hoped it wouldn't be so bad. He'd be MUCH closer to me, so there'd be no commute to hear about hallucinations, it was gated but he had tons of room to walk on the property, and like the other places, they were to take care of his necessities...AND it was "only" $2500/month versus the $3800/month at the Stratford.
When I gave notice at the Stratford, the Administrator, Nicole, warned me that my Dad was never going to be happy...that I needed to look out for myself too and just let him be settled somewhere. Deep down, I knew that she was 100% right, but I am stubborn. I was sure I could make it work...and that having him closer would be better. I am just one of those people who is determined to find a way to make things work and I was NOT going to be defeated by a disease. I saw that half my family had died in the past few years and that I had gotten through cancer treatment myself, so THIS would not be my defeat. No way. Nicole WAS right, I knew this. And I really did love everything at The Stratford, but I just had to do this.
Although I felt like I was going to let him live in a place I really didn't like, he wanted to live there. He said he didn't need anything fancy (god only knows some of the dumpy rentals we'd lived in growing up) and he just wanted room to walk and have his "own room". Well, he'd have that at St. Francis, so I just...I dunno...had to try it to see if he could be happy somewhere.
We could make it work, right? I'd be close, I could check in on him daily, and he got to pick the place himself so he felt independent again...he'd be happy...and safe, right?
Wait, what's that?
Hear that horrible screaching? That creaking noise?
That would be the gates of hell opening.

Tuesday, May 13, 2008

Life After Mommy.

Daddy started floundering after Mommy died. Big time. He didn't really seem to get how to take care of the rent or how to call about the utility bills. I watched him (try to) fill out checks for his bills. It took him over an hour to write one check. My Mom had done everything all along. He didn't even want to tell the landlord where they'd lived that he was moving out. He was too afraid, or didn't know how. Socially inept, I thought.
Though I never had any kind of close relationship with my Dad, I knew he wasn't going to make it on his own, at least not right now, and I was going to have to step in somehow and do something. He was saying all this stuff about how Mommy was haunting him. Her wishes were to be cremated and to have her ashes strewn "somewhere fun", which I hate to admit, we still haven't done (nowhere has been good enough). We have 3 separate containers with her ashes...one for Daddy, one for me, one for my brother. My sister didn't want any. Daddy had his container of ashes and was convincing himself that she was sticking around because she needed to be buried...that she needed a headstone and she'd keep taunting him until he got rid of her. He said he knew she'd keep coming in his room at night poking him, filling his room with cigarette smoke until we buried her.
I thought maybe he was in shock, that he needed to be with someone until he got things in order in his head. I told him he was welcome to come live with us. He sort of hesitated, but said okay. We helped him have a garage sale, go through Mommy's things, and get his life in order.
He moved in with me and my family within about a month of Mommy's passing. For the first two or so weeks, he seemed okay. Yes, it was annoying having my father living in my house. My father, who was never really much of a father...the man who, while I lived at home, seemed more afraid of me or annoyed at my existence than anything else. His presence, I admit, irritated me. I couldn't believe that, after all the non-committal fathering he did, that I was taking care of him, helping him. But it was the right thing to do, what I had to do.
Growing up, there were too many incidents I can think of where Daddy took the high road and guilted us kids into doing his dirty work...the adult work. When I was 13, when my Mom had her last breakdown, my Dad was a wreck. He let my sister handle almost everything...my sister who had already had enough, had furnished our house with the first new furniture my parents ever had with her own money...who had been taking the brunt of the lack of adult decisions longer than any of us. And then he had me forge my mother's signature to the Divorce Papers he never filed. Years later, when big sister was long gone and my brother had a few scuffs at school, my Dad said I should handle it, because I was "better at that stuff"...more like he just didn't want, or know how, to. So at 23 I was my brother's legal guardian and had to go to the school anytime there was a problem, which luckily was only a few times.
Funny how things work. And interesting how now, looking back, there was a pattern of irresponsibility on Daddy's part all along. A total disengagement from making adult decisons. I was convinced that this part of his personality, along with the fact that he never had any friends and isolated himself in front of the TV, was part of why he was degenerating now. That, and after losing my Mom...the person who'd taken care of his life thus far, he just crumbled under the pressure of being responsible for himself. Or I thought maybe it was karma catching up to him...that this was his lesson for all that he'd done to my Mom. Or maybe my Mom really was haunting him...maybe she really was in his room smoking and poking him, laughing at him? How the hell did I know? I've heard weirder stories. And to be honest, I wondered if he deserved it.
It occured to me that Daddy had gone from his Mother taking care of him, to my Mother taking care of him...to me. And now, with whatever this post-traumatic stress or mental thing that was plaguing him was...there was no way in hell he'd ever be able handle life on his own. One of us was going to have to help him. It kind of made me mad, but I knew we had to because it was the right thing to do. He was still a person, and a person in my family. I couldn't just watch him crumble, despite the fact that I was crumbling trying to shoulder all of this on my own. But, this was me...I am the epitome of the idiotic "fixer"/caregiver person...I think I can fix everyone. I thought I could fix people I'd dated, thought I could fix friends, thought I could fix the guy I married...so of course I thought I could fix things for my Dad! So far, I had fixed absolutely NO ONE, but hey...let's give it a shot!
During the first 5 or 6 months after my Mom passed, and all the stuff that I was doing for my Dad, I was also dealing with daily calls to settle all the hospital bills and Medi-Cal claims and all the calls to basically shut down my Mom's life...cancelling credit cards, finding out if my Dad was liable for her debts, and slowly going through her address book and writing notes to people I didn't know to tell them she'd died. This stress, compounded with my continuing health issues, a failing marriage to someone who'd been diagnosed with bi-polar, and taking care of two small children, was unlike anything I have ever experienced. Cancer treatment had been far kinder than this.
The exact amount of time is a bit of a blur now, but Daddy'd been at my house for a few weeks when he decided to go visit his Mom (Nany) in New Mexico. She was all alone since Papa died and he'd been talking (fantasizing outloud) about moving back to New Mexico forever anyway (dying to get back to the magical land of an all-day cinematic masterpiece and all-you-can-eat candy bars and malted milks for only one dollar!). So now, with my Mom gone and no one to stop him from being with his Mommy, he went. Nany had been chomping at the bit to get my Dad back there too. I think in the same phone call informing Nany about my Mom passing away, she was asking when he was "coming back to her".
But by the end of the first week with Nany, Daddy was dying to leave. Nany had always been difficult and it was as if he always fooled himself or got some sort of amnesia when it came to being honest with JUST how difficult his Mom was. We all loved Nany, don't get me wrong, but she was one tough broad to understand and get along with. My brother picked him up from the airport and Daddy stayed with him and his girlfriend for two weeks. Drove them bonkers. He insisted on doing their laundry, which meant folding my brother's girlfriend's underwear. Not something any of us want or need, ya know? I vividly remember talking to my Dad while he stayed with them because he kept saying how he was so cooped up at their house. I told him to go take a walk to the park they had...but he insisted that someone needed to stay and take care of their two dogs "in case they got into something". Any excuse to avoid the world.
Then Daddy came back to my house.
I had two children. They were 3 and 7 at the time...one was in preschool, one in elementary. I was still pretty fresh out of my own surgery and radiation, still reeling from Mommy's passing...hell, I was still reeling from Papa's passing a few years back to be honest, moving 3 times in 3 years, having a mother-in-law from hell, bi-polar husband, life in general and everything inbetween...I was just beat overall. Then we added Daddy to the mix and he was a full-time job himself. At first it was just little things, like Daddy would go to bed really late, yet would seem to be up at the crack of dawn clanking dishes, vacuuming, dusting, and generally making me insane. Many mornings between 4 and 6 am, I went downstairs, bleary-eyed, and said, "Do you really have to be doing that right this minute? It's a little early." I know he was thinking he was being helpful, but he was losing grasp at the "appropriate-ness" of certain things, like time. He never seemed to know what actual time it was.
He started telling us to come look at the people outside...people playing "the statue game". In neighbor's yards, there were tall green men that suspiciously looked just like the tall bush Daddy'd seen there the day before. There was a lady with bright rose-red hair, in the same exact spot the other neighbor's red rose bushes were. There was the 7 foot tall "shadow lady" that lurked in the entryway of the neighbors house across the street. And, of course, then the little kids showed up, my Mom started blowing smoke in his face at night so he couldn't sleep. Even people in my backyard were dancing at all hours.
It had been about a year after Mommy's passing that Daddy started saying he'd like to get "his own place". Of course he didn't know how, so I helped him. I didn't realize what was really wrong with him at the time, and any doctor visit I went to with him proved fruitless. One doctor said he was just depressed, despite the fact that depressed people don't hallucinate. I was asking his doctors if they thought it was even a good idea that he live alone...but they thought maybe he'd snap out of it, you know, since nothing was really wrong with him anyway as far as they were concerned...so we figured we'd give it a shot, helping him get a place.
After looking at many apartments, and considering he lived only on Social Security, I found a pretty nice, quite, affordable Senior Complex in my city. I would've lived at this place, it was really nice and well-kept. All the people who lived there were so friendly and warm, and everyone checked in on each other and tried to involve everyone in their gatherings. I knew he wouldn't socialize, but it was worth hoping something else inside him would snap and he'd make a friend or two. I got him all ready with furniture, got his utilities set up, daily necessities, food, etc. and he was set.
For about two weeks.

Then the calls began...and I had to go over there everyday.
The manager would call saying that Daddy was getting the other residents upset...he was insisting there were people trying to steal his TV, or car, or clothes, or silverware.
The Police were called when Daddy was screaming and running down the sidewalk because there was a group of hoodlums in his car when he went to get in it. They wouldn't get out and he was having an argument with them to leave.
Daddy started calling upwards of, seriously, 17 times a day sometimes. Someone had stolen his wallet again. Someone had taken one of every pair of shoes he owned. Someone rearranged his furniture while he was sleeping. There were maintenance crews on the roof all day and night, doing work on the air conditioning units. Tiny, dirty, hungry kids showed up asking for food. Daily I spent hours just looking for things he'd hidden from himself. When I dared to not be home to answer my phone, like when I was so rude and went grocery shopping or to pick up the kids from school, he'd curse me on my message machine, then call 5 minutes later to nicely ask if I'd seen his wallet. 5 minutes after that, he'd leave another message saying something like, "I know you don't give a shit about me but I thought you could at least answer your fucking phone!" In another 5 minutes he'd be crying, saying I was his whole life now, and that he wished I would love him back.
Then the Chair Man showed up. Oh, Chair Man...the bain of my existence for such a long time! I should have just committed myself to a sanitarium at this point, because he said I was an assholes "pretending" to NOT see what he saw...he said I was trying to make him look crazy. One Dr. I took him to basically agreed with my Dad...with me sitting there. This Dr. said she thought my Dad was just nervous after all the stressful things that had happened to him, and that she felt that maybe us kids were just "too busy with our own lives to be bothered with old Dad and were looking for a way to rid ourselves of him".
Saying I was furious is far from an understatement. What nerve to come up with such nonsense. I was my Dad's freakin' only advocate...I ran over to help him at all hours, I sacrificed time with my kids, dragged them with me most times when 911 was called, and had been literally doing everything for him since the second my Mom passed away. We'd helped him pay for many things he couldn't afford, bought him all the necessities to move, furniture, food. And if time was money, I'd easily spent millions. I was the only one trying to help my Dad, and THIS was what I got? Condescending Doctors with opinions based on what? Unfreakin' real.
After this, I looked for new Doctors. I did more research about meds and whether he even needed any, or was this just nature taking its course? I read everything I could about the types of dementia, Alzheimer's, Parkinson's, mental illnesses, and did searches about his specific symptoms. I kept coming across "Lewy Bodies", and from the symptoms it explained on every site I came across, my Dad's picture could've been posted right next to it. He was the poster boy for Lewy Body Dementia, no doubt.
In the meantime, the Chair Man was more active than ever.
The Chair Man was a man that could mold himself into the shape of Daddy's recliner. He was like a chameleon and could change his color too. Daddy tried putting a blanket over the chair, and Chair Man just blended right into it. Damn you, Chair Man! Daddy and Chair man had screaming matches. Daddy hit Chair man, hit him good. Knocked him out. Then Chair man tried hitting back but he wasn't fast enough. Chair man threatened to kill Daddy, so Daddy had the Police come to get rid of Chair Man. Thank God for the very understanding Police Officers that came, and the manager as well. They just tried to calm Daddy down.
Because I was having to drop everything and haul my small kids over to Daddy's several times a day now to find out what the latest drama was, the decision was clear: despite his idiot Doctors so-called professional opinion, I KNEW Daddy needed full-time help, or I was going to have to move far away and change my name and let my siblings deal with this. My kids were being exposed to things they shouldn't be and they were getting annoyed and scared by Grandpa's antics. They didn't want to go anywhere near my Dad at this point, and honestly, I worried what my Dad's delusions would make him see next...if my kids were even safe around him. I had no idea.
I had to be the bad guy and break it to Daddy that there was no way in hell he was driving anymore. I tried reasoning with him that he could have one of his hallucinations while driving and kill himself or someone else. I got nowhere. He said IIIII was the one "hallucinating" and that he'd get back in control of his life away from me one day and put me in jail for trying to make him look crazy. My brother tried telling him driving wasn't a good idea and that we were doing what was best and safest for everyone. But I was the evil one who'd taken away his freedom. Stupidly, I let Daddy promise me he wouldn't drive (he still had his keys and car), until a few days later he showed up at my house and asked me how he'd gotten there. He got agitated when we said we'd drive him home, so I told my then-husband to secretly follow him when he left. Daddy was all over the place. Then-husband said Daddy kept turning around, making crazy last-minute lane changes, u-turns, and it took him a really long time to get home. I called him when he was home and asked how the drive was, and he said with a snap, "Just FIIIINE, thank you Maam.". I told him what then-husband had seen and Daddy was not happy. We'd violated him. How dare we accuse him of not being a safe driver!
I wrote long letters about what was happening for the Doctors to read before we went to his now numerous Doctor visits. We had to get an official diagnosis, medication, something. Around this same time, I realized we needed to get Power of Attorney because Daddy was clearly nearing the end of making rational decisions on his own. This was just the beginning of far too much legal nonsense and wastes of time and money.
One of his VA Dr.'s gave me a list of his current conditions at one visit. To my shock, Daddy had actually already been diagnosed with "Dementia with nonspecific psychosis" almost 3 years earlier. Why didn't we know that? Did he know that? Did my Mom? How did they even figure that out considering my Dad never seemed to tell the Doctors anything besides answering the few Kindergarten-level questions they'd ask him?
We were having a hard time getting anywhere with his medical care. Because Daddy could sit calmly for 10 minutes at a Dr. visit, tell them what day it was and what his name was, they said he was fine. Fine? What about all the people? What about the delusions? What about the complete lack of common sense or logic that should tell him it really wouldn't make any sense that there would be a man on a horse painting his house? For crying out loud, people!
Daddy stayed living in his little apartment while we figured out what to do. I was over there everyday at least once, usually more. My first search for a senior "care" residence began. In the meantime, his hallucinations...the Chair Man, the constant calls, me going over there to find his apartment in complete disarray, him half shaved, in mismatched clothes, it was just too much to handle even if I was super-rich, on my own, single, with no kids and in great health. I couldn't handle this. No way. He was having some sort of monumental breakdown and nothing I did helped. Looking at all the facilities was overwhelming. They all claimed to be the best, give the best care, and it was hard to find anyone I knew that had any experience with facilites to get any sort of reference. A small handful of people had "heard about" a few places when their grandparents were admitted to one, but no one my age really had a clue where to look or what I should do...and not one had any actual experience in the decision-making process of placing a parent in a home. The few that had little knowledge about places their grandparents had gone to had these half-baked glowing reviews of what they'd "heard" about the facilities...and when I checked them out...oh dear God. Horrible, decrepit pits of despair.
Most of the friends I had in town started disappearing on me when looking after my Dad became a real-live responsibility. People my age were worried about manicures, pre-schools and the PTA. I'd never even had a manicure, the PTA was full of superficial, bored women with some sort of eating disorder, and I just didn't have the time or patience to be worrying about whether I could help sell enough soy candles to send the 6th graders to the cheese factory. Some sort of dementia was ruling my life on top of everything else I was handling, and I am not one to mince words with people with no priorities other than their bi-monthly root touch-up.
Tangent aside, after one too many calls about his hallucinations, someone where he lived had called 911. I don't blame them, but Daddy ended up getting admitted to the VA Geriatric Psych Ward in Menlo Park. It was supposed to be a temporary thing, about a one week stay, just to get his meds straight and figure out just what was happening. I had my brother drive him out there because I was not about to take the kids out of school and subject them to going to drop Grampa off at the looney bin over an hour away. We had NO idea what kind of place this really was.
I found out he'd been on and off a couple of different anti-depressants and anti-psychotics for a few years, unbeknownst to us. And since my Mom died, I found out he was getting mixed up about his meds...taking two doses or skipping them, then taking 3 days worth at a time. I only knew this after I'd started doing my own research online and took a serious interest in everything he was or possibly wasn't doing...that the disease I thought he may have would confuse him to the point of not knowing what to do or when. I read all about every medication he was on, the side effects versus the possible benefits, and it was startling. I started counting his meds and within days he'd be out, so I knew he was mixing his days up. I confiscated his meds and gave them to him myself. He didn't like that, and often argued that he'd already taken what I was giving him, or that I hadn't been there for days to see him. As if I even had a few hours apart from him at this point! We had no idea what was really affecting him...was it this dementia with psychosis we never knew about? Alzheimer's? Was he just crazy? Schizophrenic? This Lewy Body thing?
While in the psych ward, Daddy slid even further. They would let him call on a payphone several times a day and he was more delusional and paranoid than ever. I went to visit him and in one week, he looked like he'd aged 20 years. He had almost a full beard, and, if you knew my Dad, that is just unacceptable...he NEVER had facial hair. He also looked like he had lost at least 15 pounds and his face was sallow and sunken in. He told me they wouldn't let him leave his room, and that someone was beating him. He did have bruises all over him. Dark purple and black bruises everywhere. EVERYwhere.
I asked to see the room he was staying in. The refused to let me in. I questioned what was going on with his meds and when they would have them straightened out so we could bring him home? They said I wouldn't be taking him out, that they'd made him a ward of the State and they would make his decisions now...that he was too far gone. They were injecting him with Haldol every few hours. I asked about the bruises and they said it was from when he was being combative and they injected him with more Haldol.
Holy shit. What happened here?
First, Doctors treat us like monsters, as if we are trying to pawn off our Dad somewhere. Then they say there's nothing wrong with him, we find out he was already diagnosed with Dementia (but he's fine, they say)...but now he's a ward of the state because he's too far gone and we might as well pretend he doesn't exist to us?
I felt like I was being PUNK'd. This was not happening.What. The. Fuck.
Over the next week, I phoned every person and agency I could find, and no one would call me back. The Psychiatrist at the unit Daddy was in wasn't very helpful and discouraged us even coming to see him now. I'm sorry...WHAT??? I was told we should just leave him there, and forget about him for a while. I was NOT doing that. What the hell?
I had a monumental meltdown. My then-husband was telling me to just leave my Dad in looney bin. I was thinking that I may drop HIS ass off at a different looney bin on my way to see my Dad...I was pretty damn sick of his crazy crap too. I drove all the way out there the next day, and INSISTED my Dad be released. Of course, the Doctors didn't want anything to do with me anymore. I'd gone against their decision, and they were GOD. I was told I could have 'legal ramifications' for taking a ward of the State without their consent. Funny though, after I pointed out all the facts: that from what I'd read, people with Dementia shouldn't even be given any anti-psychotics like the Haldol they were continually injecting him with and that for some reason they refused to allow me to inspect my Dad's room, they backed off. I will never know what really happened there. I probably don't want to know. They had their Social Worker contact me to say my Dad needed to be committed full-time and she gave the names of some other psych wards I could consider. I said something to the extent of re-analyzing just WHO should be commited to that hellhole.
So, Daddy was sprung from the nuthouse, and we brought him home to our house. He didn't want to be at his apartment anymore and we knew he couldn't handle that anyway, so I gave notice at his place and he stayed with us for a while again.
Daddy's Mom, Nany, was not doing well, and had some sort of Dementia-like illness coincidentally at this time too. She had caregivers coming in her home 24 hours a day. She thought they were just new friends that liked to hang out with her and help her for free. If Nany had known she was PAYING for these people to sit with her, oh dear god, all hell would've broken loose. Nany had also declined rapidly after her husband's (Papa's) death. It was like something had snapped, broken in her brain that day...sorta like my Dad. She was very paranoid about people taking her things. Granted, there were many pieces of expensive jewelery missing, but she had hidden things from herself before and we had no idea whether they'd eventually turn up like they always did. Nany also had started hoarding papers she thought were important in shoe boxes she insisted on keeping right next to the recliner she 'lived in'. She wouldn't sleep in a bed, and she'd sit all day in her chair, and fall asleep in it at night. She'd put this fuzzy blanket over her head and sleep like that. She was convinced that some sort of "fuzz" from the carpet or air or somewhere was getting into her lungs and mouth. She was constantly trying to get rid of the fuzz.
I had driven alone with just my little kids to visit Nany in New Mexico after Papa died (before the caregivers) and I had to haul out 4 large kitchen-size garbage bags of expired or actually rotten food from her cabinets and refrigerator. And I had to clean her bathrooms from top to bottom. They looked like someone had decided to scrawl on the walls with poo. There was splattered urine or fecal matter on the cabinets, faucet, walls, carpet. Oh boy, and she was livid with me. She said, "Oh you just think your something else, don't you? Coming in here, taking over, throwing out all that food I paid good money for!" I assured her that I was going to use my own money to replace all the food I so carelessly tossed out. I was beyond pissed that the family members back there had done absolutely nothing to help her...they had insisted they were helping her clean and had been doing her grocery shopping once a week. The hell they were. The food I threw out had long been expired or was literally moldy, and it was pretty obvious that nothing was being cleaned, and hadn't been for quite some time.
But now that Nany had paid caregivers there helping her all day and night, we talked to Daddy about staying with her for a while. I really didn't like the idea of him being all the way in New Mexico, especially when I knew the relatives couldn't be trusted, and I knew Nany was gonna drive him nuts. But, I assumed there'd be no more rotten food or foul bathrooms to tend to, and there were 3 caregivers taking shifts with Nany that we could pay to keep an eye on him until we could figure something else out. Daddy decided he could help Nany if he moved there, and we tried to make him think he had made the decision himself. Neither my brother nor I could reasonably take care of our Dad, we already knew that, and our sister had removed herself from our family for her own reasons many years ago...not to mention she lived in Washington and Daddy said he was not about to live there (he hated the cold).
He was fine at Nany's for the first few weeks. Then the hallucinations began again. And the running into walls and falling began. Nany was driving him crazy. He said she was crazy, wouldn't shut up, wouldn't stop yelling at everyone, telling him he was worthless. He said the caregivers were having sex with each other (they were sisters, so I would hope that wasn't really true). He said they'd have all-day parties and there were people in his room, women getting into his bed. He was more agitated than usual with everyone. The whole issue was a nightmare to handle by phone in another state so we decided to visit to see what was really going on there.
My then-husband and I drove with the kids to New Mexico. We'd been paying Nany's Caregivers to take care of Dad too, which was stressful because all Daddy had was his Social Security check every month. No savings. No property, nothing. But they wanted more money, even though family members who randomly came to visit said the caregivers really weren't doing anything for my Dad at all besides occasionally redirecting him to the bathroom.
When we arrived, we found that Nany really had no idea who we were. I'd just seen her about 6 months before this, when she was her usual sassy self. But now, literally every few minutes she'd say, "Well, now, who are you again?" When I'd tell her, she'd say, "Oh, really? We have a Lainie in our family too, do you know her?". I couldn't believe it. Just like that. I didn't exist to her anymore. It had only been in the last 3 or so months that she stopped being able to use the phone, but I'd still call her, and the caregivers would give her the phone. She'd still talk to me and ask all the usual questions like she knew who I was. She'd just known me a few weeks ago, and now she didn't. Was this normal for dementia or Alzheimer's?
We went back home to CA after about a week stay and Daddy still wanted to stay with Nany in NM longer. He said they still needed his help but he wanted to get a bike to get a break from them sometimes. I called around to see who may have a 3 wheeler...I did not trust his balance for a regular bike. I found this snazzy blue 3 wheeler with a basket and bought it for him. What we heard from the caregivers after we left, that's all he did: ride that bike. Unfortunately he took a few falls, nothing serious, but he wouldn't stop riding it. Over the next few months, Nany declined quickly. She suddenly didn't know how to swallow anymore, and couldn't eat or move. She passed away January 3rd, 2007.
Knowing all the family drama that was about to unfold with Nany's passing...really long story there, but my Dad's sister, who lived in New Mexico with her 8 grown kids and theirs, and theirs, etc. were a bunch that my Nany (and especially Papa) did NOT want to get their hands on the house or anything else. These were the same family members that had supposedly been looking in on Nany when her house was full of poop and rotting food. I could only imagine what I was in for.
Papa had made some good decisons with money, so Nany had been left with a few hundred thousand dollars, and a house, and this would all now be our Dad's. My brother was going with me, and we discussed how we knew we were about to have to fight with all the relatives who would inevitably come out of the woodwork and claim love and family loyalty as their claim to it all. Oh and did they.
Because our Dad was the executor of Nany's Will, named as the joint tenant on the house AND on her bank accounts/CD's, and because we were his Power of Attorney given his state of mind, Nany's affairs became ours. Nightmare and a half. Daddy could not reasonably stay living at Nany's house, which he now owned (his first time being a homeowner!) because the family back there could not be trusted and he had no way to really take care of himself, so we were packing his things and bringing him back to California. In the week we were there for Nany's funeral, me and my brother fixed things in the house, got it up for sale, had the vulture relatives put post-its on the furniture they claimed was theirs, and ended up splitting half the money in the CD's with Daddy's sister. Though Nany and Papa strictly forbid it and the Will nowhere stated he had to, Daddy was guilted into giving her $200,000. That is $200,000 that I would have no problem with her having if she'd use it for herself, but she gave most of it to her unappreciative, drug-using and/or thief kids...who ended up getting the rest a few months later when she too, passed away. I guess in the end, it's "just money", and it's money he didn't have to begin with, but I already knew what it was going to cost to take care of Daddy...and him having that money would make it much easier to find a respectable, clean care home for him that had good people working there (if that existed). We had no idea how long his life would be, or if he'd outlive the money he'd have left. I know, I know, it could be so much worse...he could still have no money...but it infuriated me that after everything, all the things that the relatives stole from Nany...(we're talking hundreds of thousands of dollars in jewelery among other things)...that they ended up with even more. It's just not right.
Daddy decided he wanted to go visit our sister in Washington before coming back to CA, so we set him up with a flight there. He stayed about 3 weeks at her house while we looked for some sort of assisted-living situation here in CA. He seemed to do okay while at our sister's house...she said he basically just wandered around and had to be told where things were all the time, but by this time, we were noticing a pattern...that he was always "okay" for the first few weeks in a new environment.
From all the research I was doing online or in books, I was absolutely convinced that Daddy had Dementia with Lewy Bodies. I made him an appt. with a new Dr. when he got back from Washington, and planned on getting this mess straightened out.
In the meantime, I was dealing with a real estate agent in New Mexico via phone, stupid relatives who'd gone in the house and stolen appliances, then filed a false insurance claim, and I was talking to a lawyer about getting all Dad's financial nonsense in order. Literally everyday I was on phone for hours. I never imagined all the crap that could possibly happen. And this was just the beginning.

The late 1980's and beyond.

By this time, Daddy had been sober for a while and things in our house was much more calm. Though our mother continued her drinking and smoking, Dad remained "clean"...a nervous, anti-social, TV-obsessed fiend, but clean. My brother was pretty young during these years, and our older sister had long since escaped. My recollection of these years was that I slowly realized that my Dad had actually been the source of much of our misery, not our Mom...who was used as the scapegoat for our misfortune all along.
I think it was somewhere during Daddy's first "sober" years that he started having the night terrors. He would scream and curse and hit the walls during the night. He and Mommy were already sleeping in separate beds by now...Daddy in a hospital bed obtained by the VA after a few surgeries he'd had on his neck, to remove his gallbladder, these really bizarrre "cysts" he started getting all over his body, and a host of other issues. He had gained quite a bit of weight too, and had been diagnosed with Type II Diabetes. His favorite pastime was TV. Hey, look, it's 6 AM and Dad's in front of the TV. Hey, look, it's 10 PM and Dad's still in front of the TV. He was all about TV. All day and night. Well, that's not entirely true. He'd glance at old movie books sometimes, do yardwork on weekends, and do a quickie dust and vacuum job riiiiight before Mommy would get home from work...but other than that...TV.
Somewhere during this time, can't remember when exactly, Daddy got injured at work and went on permanent disability. He'd fallen through a roof while on the job at work...he'd worked for many years in Heating and Air Conditioning, and this injury was the end of that.
My parents rarely fought anymore after this for some reason. Occasionally, when my Mom would get unusually rip-roaring drunk (her liquid courage), she'd start spouting off truths about Daddy and antagonizing him about his weaknesses. We all got on Mommy's case about her drinking and smoking, but the way she saw it, it was her only pleasure in life. She had no intention of giving these vices up, so we dealt with the occasional outburst from her. Honestly, I didn't mind it so much, because what she said was absolutely true and she needed to get it out somehow, I suppose. Mostly she got drunk and quietly went to her room and fell asleep, while Daddy was in the living room eating and watching TV.
Other than spending every single Sunday with Nany and Papa and going to work, my parents hardly spoke, and spent their time in separate rooms attending to their separate addictions and social backwardness. They had no friends, and I do mean none. My Mom had a few people that she joked with at work, but there wasn't even one person that ever came over or whose house we visited. Well, once when I was 7, we visited some couple they knew (although I have no idea what happened to those people after that), and one other time we went to some lady's house that my Mom worked with to make tamales...but does two times in an entire lifetime even count? Those acquaintances were never even spoken of after those occasions.
In 1997, we got news that Daddy's biological father had passed away. This was the first I'd even heard that his Dad had even been alive all these years, so I was stumped, and it barely registered as a glip on my radar. We'd never met the guy, and no one had ever really talked about him except in passing that he had existed at one point. But, I remember Daddy having more night terrors after this, so for him it was clearly a major trauma. Whatever unresolved issues he's had with his Dad and all of life's other issues came to life at night.
Also in 1997, Daddy's Mom and Papa moved back to New Mexico after nearly 30 years of living in California. My Mom was definitely relieved to have some peace with their move, and maybe Daddy was too...but he seemed to also see it as a void in his identity...it was almost as if because he didn't have someone constantly telling him when and where to jump, he was lost. Though we all loved Nany and Papa, Nany was just, I don't know how to put this mildly...she was a pain in the ass. Sorry Nany, but I think you now know you really were.
During the next year I became quite close with my Mom. She had eased up on her drinking and seemed more at peace...maybe having Daddy's Mom hundreds of miles away was calming to her...she was much easier to talk to now. I was out of the house, married, and was about to start my own family. Me and Mommy talked almost everyday, and I'd hear all about how Daddy was a thorn in her side.
By 1999, though, her stories started including how Daddy's night terrors began evolving into actual sleep-walking events where he'd run through the house searching for "the kids" that were harrassing him in his room. She'd tell me how some nights she'd hear a bunch of commotion down the hall and she'd find him dazed and using the clothes dryer as the toilet. He'd punch holes in walls. Start singing in his sleep. Scream. Yell for help. He was driving my Mom completely crazy, and she clearly never got any rest. And, not that I thought she was lying, but I admit that I thought she may be stretching it a bit because I knew they just couldn't stand each other. Around this same time, we found out that all those years of smoking finally caught up to Mommy. She had lung cancer. Daddy really didn't react. Mommy went through the removal of one lung, chemotherapy, lost her hair (I shaved her head when it got thin), and generally became very weak from the whole ordeal...and Daddy just, I dunno, stayed stoic about the whole thing...during the day. At night, when Mommy clearly needed to be sleeping, Daddy's anxieties woke up and he'd explore the house and swing at things that weren't there. He'd have fist-fights with people, lots of people...in his bed, out the window, knocking at the front door...all people who, of course, weren't really there.
He also started having episodes of really low blood sugar. Quite a few times his blood sugar dropped to the 50's and 60's and Mommy would call and say he had lost his damn mind...that he was now talking about "the people" during the day...the people that only he saw. We didn't know for sure what was causing the low blood sugar (although later, while looking at the side effects for all the drugs the VA had been giving Daddy for anxiety, I think that may have been the cause).
In 2002, we got word that our Papa was expected to pass. He'd had cancer a few years prior and had lived well beyond his Doctor's expectations. Daddy had flown to New Mexico where Nany and Papa had moved back to, and me (pregnant with my daughter), my then-husband, Mom and son (who was 3 at the time) drove by car, hoping we weren't too late. Though Papa didn't come along until Daddy was an adult, I know that Papa was really the only father figure my Dad ever had. Papa's death affected many of us in ways I think we never could've imagined, and I'm sure this was just the first of many issues and death's that would irrevocably speed-up Lewy's arrival.
When I now think back about turning points in my Dad's state of mind, one incident that always sticks out in my mind is an afternoon when Mommy called me and said Daddy was talking about how she'd ruined his singing career...that he would've had a lucrative career as a famous guitar-playing singer if it weren't for her. The reality was that Dad really couldn't carry a tune to save his life that I know of. She had him test his blood sugar and it was in the 40's...which can, from what research I've done, supposedly cause brain damage? I called my brother who lived closer to them at that time...to tell him someone needed to go see what the hell was happening ASAP. My Mom had called 911...and had to do it slyly because Daddy was completely paranoid that she was trying to kill him. She called me and had him get on the phone...and she had to convince him that he hadn't heard the phone ring because of his singing...that IIII had been the one that called them because he was suspicious and asked why I'd want to talk to him. He acted really odd on the phone and would go back and forth from asking what I was doing to humming a tune that he'd just "written" himself. The ambulance finally came, and my brother had shown up by then. Daddy's blood sugar was at 34 (!), so they gave him some glucose to boost him up quickly...and his mental daze improved...but something definitely triggered a change that day because his delusions got worse after that.
At the end of 2004, I was diagnosed with Thyroid cancer at the age of 32. This, after quite a few years of Thyroid disease and knowing something had been seriously wrong with my health. I had gone from Doctor to Doctor, being ignored. After all was said and done, the Doctor that diagnosed me said going by the size of my 3 areas of cancer, I had probably had it for a good 5 years. Jesus. I look back on this part of my life in amazement of the ridiculous crap that was going on. My health was crap (despite never smoking, didn't drink, and I was a vegetarian...), my Mom went through cancer treatment, my marriage was in a state of "what the hell did I sign myself up for here?", and I was watching my fairly young parents fail before my eyes. Shit, and I just remembered that my sister and I weren't even on speaking terms at this point because of some stupid e-mail she'd sent. (rolling eyes)
Anywaaaaaay...my parents came to stay with us after my cancer surgery and during my radiation, so my then-husband could go back to work. My Mom had healed up fairly well after her own surgery, but she just wasn't the same. She was really tired and the arm on the corresponding side that her lung was removed was weak. Dad was just, for lack of a better defintion, "not there". He didn't say much and seemed to just be irritating my Mom with his uselessness.
Shortly after all my treatment, my then-husband and I decided we were going to be move closer to my parents. I wasn't doing that well, and I saw that both of them were failing. We found a house farther north, closer to them. While waiting for our house to be built, we moved to a rental. My Dad insisted on helping us move. He got lost driving to our house, and was having a lot of problems with balance. Quite a few pieces of furniture got ruined during this move because he'd lose his balance and stumble, dropping whatever he had in his hands. It was like there was a button for the aging process and someone had hit "turbo". When I'd talk to my Mom on the phone during this time frame, she had a horrible cough again...like the one before she was diagnosed with lung cancer...but she kept saying she was fine. Dad was just 'out to lunch', blissfully watching the days go by in TV land.
The month after moving, I drove with my then 6 and 2 year old to see Mommy...it was the day before Mother's day. She didn't look like my Mom. Not to get too graphic, but her entire head and face was swollen, she had a terrible cough and could barely breathe. She couldn't get out of bed. I asked my Dad why he hadn't taken her in somewhere and he was completely clueless that anything was even wrong with her. I knew something was wrong with him. He had this expressionless look on his face, it was almost droopy. He'd talk and his mouth would move, but he had no expression, like all these Hollywood freaks with botox-filled faces. When he wasn't talking, his face fell even more so, like a cartoon frown. I
called my brother on my drive home to tell him what our Mom looked like and asked if he could please try to get Daddy to take her to the Doctor. Everything I had tried failed. When I'd been there, I tried to convince them both she was seriously ill, but they wouldn't budge. I think my Mom knew she couldn't be helped and was just too tired to deal with it. She also didn't have health insurance, so I know she didn't want the headache of what it would cost to go in, considering they were broke.
My brother convinced them to go to the ER. She was immediately admitted to the Hospital. After a few tests, we were told she might have two weeks to live...the cancer was not only back, but had basically spread everywhere. After about a week in the hospital, she was sent across the street to the Rehab/Nursing Center where they did Hospice. My older sister came to California from Washington and stayed with Daddy while this was going on. I drove daily to see Mommy and to make sure I said everything I needed to say to her. While our hearts were breaking, Daddy would sit in a chair in Mommy's room, saying almost nothing. He seemed totally unaware.
My sister, who was still not speaking to me at the time, was the one who called me on the evening of June 5, 2005, saying the facility had called to let us know Mommy had passed. It was a quick, fairly "informational" call. My sister said Daddy was oblivious to the news and asked if he could go back to bed.
Lewy had moved in, hung drapes and artwork, and had no intention of being evicted.

A Step Back In Time.

Before we go anywhere else, I must explain where this might have begun, and who Daddy was before all of this, so these first posts will serve as a bit of history into "what was going on before we knew about Lewy".
In all my 36 years, I remember Daddy being a little, well, "off". Even as a small child I remember thinking Daddy was sort of weird. Whether it be his random conversations in pretend Spanish or the fact that he fixated on, "when I was a kid I could get a candy bar for 5 cents", he just, I don't know, never seemed to fully grasp reality. Even when I was young, I saw him as immature, and "out there" which is huge, I think. He was never very communicative with any of us, and the rare conversations we did have, that he had any enthusiasm in anyway, was about his past and the mere pennies he insists he bought it with. "I remember when I could go to the movies, get popcorn, candy AND soda for 50 cents". Tales of paying a dollar to spend an entire day at the Cinema, and afterward stopping at the local soda shop for a malted milk, my god, it was all he could think about. His past life in New Mexico was all he dreamt about going back to. I don't remember him ever really speaking about his present...his life with us...with such technicolor fondness.
Daddy was the oldest of two children. He was born, and grew up in, a very small town in New Mexico. His parents split not long after his younger sister was born and his mother went on to remarry 5 more times. Yes, I said 5 more times, for a total of 6 husbands. His biological father moved on, remarried and had 5 more children...and had limited, then no contact with Daddy in the years after his split with Daddy's mom. From what little we know, most of Daddy's new stepfather's were abusive in some way, and his mother was also a very domineering woman...a woman who would have a pretty firm grasp on Daddy until her death at the age of 91 in January of 2007.
Right after High School, Daddy enlisted in the Marines, supposedly to prove himself...that he wasn't Momma's little boy anymore. This was during the Korean Conflict, and his stint as a Marine didn't last long. From family accounts, he was having some sort of "mental" issues and was discharged...honorably, but discharged nonetheless. He never elaborated one way or another, so I truly don't know the whole story about that. When he came home from the Marines, the girlfriend he'd had before enlisting had given birth to their child...a child, and pregnancy, he apparently knew nothing about. Relatives say Daddy was already a changed person when he returned from the Marines...more skiddish, paranoid, easily distracted and heavy into drinking...and then his girlfriend tormented him with the news she had indeed given birth to a son that looked just like him...and had, by the way, already given him up for adoption. Word is that Daddy's mental state deteriorated and he began drinking even more heavily and got into many a bar fight. Sometime later this same year, Daddy moved to California with his Mother and her 6th (and last) husband...who was our beloved Papa, the only grandpa any of us knew. They moved from New Mexico to Citrus Heights, California into a duplex next door to some young women who had moved to California from Minnesota, and Daddy began dating one of these girls...our Mom.
They dated for a short time and then married in April of 1960. According to one of my Mom's sister's, Mommy thought Daddy was a handsome, charming "man of the world"...she was a naive girl (the youngest of 11) from Minnesota, who had really never been anywhere, so Daddy was really "something" in her eyes. Supposedly, in Daddy's "day" (which was in High School before enlisting), he was quite the ladies man and had girls falling all over him, and he played that role to a "T". From what I know, most of my parent's first few years together were spent doing a lot of partying, drinking, etc. They didn't plan on having any children.
And then...surprise...their first daughter was born in 1963. By this time, both Mommy and Daddy were alcoholics and Daddy was already absent from their marriage and had extra-marital affairs. For the next several years, both of them dealt with mental health issues, alcoholism, and clearly couldn't decide whether they were going to stay together. During their fights, Daddy always ran back to his overbearing Mother, which caused even further problems in my parent's relationship. Mommy always had to compete with Daddy's Mom for attention. Oh, the never-ending saga of the dreaded mother-in-law!
In 1972, their second daughter was born...and that's me. By the time I arrived, Mom and Dad already had a relationship of convenience and obligation, Mommy had been diagnosed with a mental disorder and Daddy was guilted by his Mother and Papa to stay and take care of her...and the two kids he now had and didn't truly want to be bothered with. More years passed...more fights, more alcoholic rages, and more of Daddy running to his Momma and never really acting like an adult who was responsible for anything or anyone.
In 1978, their 3rd child, a son, was born. The third child of an alcoholic, mentally unstable couple who never wanted any children. How one "accidentally" has 3 children, I don't know, but I do know that my Dad's Mom blamed my Mom for not getting her tubes tied after the first 'accident', and my Mom said that my Dad could just as easily get HIS tubes tied. Nany said that "real men" don't get vasectomies, and shouldn't be expected to. OY. Momma's little boy.
Mommy said Daddy questioned the paternity of every one of us and that if he even dropped her off at the hospital, or showed up to see her (or us) afterward, she was "lucky". I remember the day Mommy had my brother because I was 6 and we were grocery shopping when her water broke in one of the aisles. I remember Daddy saying something to the effect of "finally having a son, someone he could be proud of and actually do things with". Unlike us pesky, useless girls...
In the years to come, we grew up with a Dad and Mom whose relationship was rocky at best, littered with calls to the Police and/or to Nany and Papa to come pick us up when they'd be drunk and fighting. Mommy's mental status was always called into question and we thought Daddy was the stable one. Well, that's what he told us. It was always thrown in our face that Mommy was crazy, and that we should trust Daddy...he was the one who would take care of us. But that's not really how things really were. With each episode Mommy had, Daddy would turn to his Mom and Papa. But as we got older, we got to take care of things. One of the last times Mommy "flipped out", I was 13, and my Dad came to me to make phone calls, and to forge Mommy's name to divorce papers (which never went through because he didn't file them). It took us well into adulthood to truly realize that, yes, perhaps Mommy had some emotional issues, but that maybe Dad's complete lack of responsibility and ease in pawning off everything on her or someone else (including us) could make anyone act out or scream until someone called the men in white coats. The second Mommy got back from wherever she'd go, everything was back on her shoulders once again. I wasn't all that close with my Mom until I was much older, and she didn't interact with us socially much, but I know she did the best she could, and overall, she was a sweet mother and loved us the way she knew how. I learned plenty by just watching her quietly...cooking and sewing...and I ate up all the little bits of conversation and insights she gave me.
Daddy was pretty absent as a "father". He wasn't one to ever give us advice or tell us what was right and wrong...we learned that on our own as we went along...or from seeing what they did and deciding not to follow in their footsteps. Mommy was, despite her drinking and problems with Daddy, a pretty loving Mom. She tried, I know that anyway. She was diagnosed with Manic Depression (now called BiPolar) and we'd go live with Nany and Papa every once in a while, when we had to move again or Daddy couldn't handle us when Mommy was "away". Daddy could never handle us...he was always a very nervous person. Even when we were all young, we knew it had something to do with his relationship with his own Mom. His mother always had some sort of power over Daddy and could make him do pretty much anything she wanted, even at the expense of his marriage or family.
In about 1985, Daddy finally saw, to an extent, what their behavior was doing to us kids. Maybe it was the fact that I yelled at him and said he was immature when he asked me to sign Mommy's name to divorce papers. Maybe it was the fact that I had to point out that I was only 13 and that I shouldn't be watching my younger brother all week by myself. All I know is he quit smoking and drinking "cold turkey" that last day they took Mommy away to the nuthouse.
This would be when I can defintely say, knowing what I know now, that Lewy started appearing. In his sobriety, Daddy's true personality came through. There was no more alcohol covering up his thoughts or cigarette's to calm his nerves. Lewy's foot was in the door and was planning on taking over.