Today...

It is 3 weeks since Daddy kicked Lewy to the curb.

And it's Mommy's birthday.

My Horoscope this morning said...

"Secure your bunker and make sure it is fully stocked with heavy artillery because there is bound to be a battle, dear Aquarius. Trust that you need to be fully prepared in order to enter the fight today, because you do. There are some battles that you actually like-the ones that get things rolling and that produce results. It will soon become clear which type this is."
Hmmmm.
Lewy...are you out there somewhere...?

And the Award goes to...

It's okay, admit it, the relatives I've brought up, you thought I was exaggerating. It's alright, I understand.
Just to show what Grade A people they've been, and to show how much respect they had for my Dad...here is the letter I received yesterday (exactly as she typed it):

Hey! Laine,
How are things your way? Everything is good down in the valley.
Well I have a few things to say: First of all I am so sorry about your dad. He was a very awesome man. I enjoyed him while he was down here. That breaks my heart how you and your family in California treated all of us down here like we were dirt or something. My Grandma Shirley new how you guys would handle everything especially when it came down to her and Uncle Roy's share from Nanny's Inheritance. You know what she didn't care one bit about the money or all of the things that were really supposed to go to her. After all Nanny always favored Uncle Roy and you guys anyway. My grandma went up to heaven with peace in her heart and she was happy. She loved you guys even under the circumstances with you guys. That sure was nice of you to write about us in the paper, about Nanny's house. We all wanted to help, but apparently you had it under control right? That's okay. In the long run we know that we will pass on with peace in our hearts, and YOU? Will you pass with peace in your heart? Yes, This part of the family forgives you and your siblings. We would at least appreciated a phone call about Uncle Roy. He was so excited to spend time up there with his children, but from what I understand he was kept from everything, including my grandma passing away. He wasn't that awful either. He was fine down here. Well I pray for all of you guys. And we do forgive you. May God be with you.
(then hand signed) Leana

I can't remember now if I wrote about this here, but what she means about "writing about them in the paper" was when (over a year ago) I had sent a thank you to the paper, acknowledging the second realtor we had while selling Nany's House. I wanted to publicly thank this woman and let her community know what an above-the-bar job she did for us...because she was put through absolute hell while trying to help us sell that stupid house...oh, you have no idea! I had written how she was so kind and patient when everything that could go wrong did go wrong, which included the house being looted and flooded. I didn't name names. That's all I wrote. Clearly they did what I mentioned or they wouldn't be offended by it. I didn't think THEY would see it in the paper, I didn't even think about it...because, oh yeah, I wasn't writing it for their benefit!
This is just one of many cousins who have spent their entire life screwing up, complaining how they're stuck in a two-bit town with no prospects. Drugs, drinking, and a new 'baby daddy' at every turn. Funny how that stuff just gets "forced" on people, isn't it? How they have no choice, because that's ALL there is to do there?
Well, this, after dealing with Lewy, is a small drop in the bucket. My response has already been mailed out, nicely folded and placed in the middle of a much-needed dictionary.
Yes, that's rude of me.
But I will not tolerate such nonsense from people who don't even get their facts straight before writing some chicken scratch based on what their pickled brain tells them is true.
And they're mad that we didn't let them know about my Dad...that's the real purpose here? They didn't even have contact with my Dad, and he didn't WANT contact with most of them because of how they continually drove their mother/grandmother in the ground and stole money, drugs, and everything they could get their hands on from Nany's house.
And saying that we "kept my Dad from everything including her Grandma (his sister)'s death"...?
MY GOD.
So apparently we were expected to fly our incontinent, and by then fully demented father from CA to New Mexico for his sister's funeral...a funeral he wouldn't even have fully understood? When I told my Dad his sister had passed away, he cried for a few minutes then seemed to forget what he was even crying about. The next day he tried to call his sister because he'd already forgotten she had died.
Really. Abso-freaking-lute GENIUSES!!!!!!!!
Yes, THANK YOU SO VERY MUCH for forgiving us...oh god-fearing and all-knowing cousins of mine...because we didn't torment our very ill father with his sister's death. We are so very sorry that we didn't do things YOUR ass-backward and completely ridiculous way...thankyouthankyouthankyou for forgiving us.
And, I'm sure I should clarify before someone reads this and gets offended AGAIN...but not ALL of them did this...(I think?)...and not ALL of them were this way...(I hope?)...but unfortunately in this type of situation...had we invited one person to the funeral...yes, OUR DAD'S funeral that WE barely even made it to...then who knows who would've shown up. Not to mention that any of the phone numbers we previously had aren't even valid anymore...they get their phones disconnected, changed or move constantly. I tried calling a few of them after my Dad's sister died to find out where and when to send flowers, and the number's were disconnected. So I called the Church she went to and THEY gave the information. HOW we would've gotten in touch with anyone who would've had anything respectful to say would have been impossible anyway. WE however, have had the same number and address for years, and they knew where WE were...but we didn't hear a peep out of one of them. Family love, respect, and forgiveness? If they loved my Dad so much, why didn't they contact him?
Clearly from the fact that this cousin (who is the granddaughter of my Dad's sister, by the way) was disgusting enough to send such a note the second she heard my Dad died, just imagine what would've happened had they known we were THERE.
Jerry Springer, anyone?
Klassy with a big ol' capital K.

But this just goes along with the territory with these types of people...and I know that many of you have dealt with this kind of nonsense with family/friends...especially when your loved one has a disease like Dementia. They aren't around, they disappear, and basically show how they really don't care about you, your loved one, or what you're all going through. But the second someone dies...AFTER it's too late to do the right thing...AFTER all the time has passed when they coulda, shoulda, woulda done all the things they NEVER did...that's when they show up or write you a note like the one I got.
They didn't have the decency to take part in my Dad's LIFE, but his death was important to them? Why...so that all those phone calls they DIDN'T make had a real REASON for not happening now?

Typical.

And don't you adore how she opened with that 1st grade "how are you I am fine" type of nonsense, then accused, forgave, and ultimately "blessed us" with her god-fearin' words of Family LUV, all in one ignoramus package? Gotta love it. It would've been better written in CRAYON.

Lewy's Last (Cackling) laugh.

This picture captures what we felt during this whole trip...defeat...or, "Screw It, I'm Going HOME!!!!"
But Lewy's last stab at us was just NOT going to work!


January 14th, 8am. We missed our first flight. By two minutes. Oh, no...the plane hadn't left yet, it still had about 28 minutes until take off. But there's some new thing since I flew last that states you have to have gone through security 30 minutes prior to take off or too bad for you. It didn't matter that we told them we were flying in for our Dad's funeral...that we were going to be the only two people there. In a "series of unfortunate events", we just didn't make it there in time. Car windows frosted up, traffic, whatever. It just was not going to happen. No one's ever bent the rules for me before...so why, even though passengers were still getting organized on the plane, even though they weren't done loading luggage yet, would they forgive us two minutes now?
We were rescheduled for a flight quite a few hours later. Went to eat, called the car rental place and the hotel we were supposed to stay at to let them know when we "should" arrive...and got back with plenty of time to board this time. Okay.
6-ish pm. We get to our first destination where we are supposed to have a short layover. We go eat.
When we're on the tram that spans this enormous airport, I see the time and it doesn't make sense to me...we're TWO hours ahead (it say's 8-ish pm)? Huh? We ask someone on the tram and they confirm that time is correct. We RUN to the desk. Our flight left a half hour ago. When we finally figure out how the hell we could've missed another flight...it turns out that NO, we did not have any time to go do ANYTHING. We thought we were only one hour ahead. We were two. So that ultimately meant that we actually only had about 6 minutes to get from our first flight to the flight we just missed. Not an HOUR and 6 minutes like we thought. So really, we may not have made it either way. Forget about it.
We were stuck overnight. NO luggage. Which means no clothes, toothbrushes, etc.
We're just laughing at this point.
We get rescheduled again for the next flight to Roswell, which isn't until the next morning at 9:45am...and it will get us there with barely enough time to get to the cemetery for the service at 11am (the flight is 1 hour 35 minutes, minus the 1 hour time difference). We will have to go straight to Dad's service with the clothes we still have on. Forget the clothes I so carefully picked out to be presentable for saying goodbye to my Dad one last time. Forget the warm jacket I made sure I had in case the weather took a turn, which it did. Prepare to freeze.
Seriously, just laugh, that's what we did.
We called to get a hotel for that night. They gave us toothpaste and all those necessities...at least we had that! The girl gave us the room card/key and told us what floor we're on. It doesn't register as we say thank you and were walking away toward the elevator.
I stop.
I say, "What floor are we on? What did she say? What room number.........?" We are on the 13th floor in room 1367. 13...and then 6+7=13. 1313 on the 13th floor.
We are just dying from laughter.
I thought there wasn't supposed to be a 13th floor!
We get on the elevator and this woman boards also, asks us how we're doing tonight and we are laughing, telling her we missed two flights, blah blah blah...and now we're on the 13th floor in room 1367. She starts laughing, which we expected...but then she says, "Well, it happened to the right people!".
Crickets.
Then we just start busting out laughing again.
We get to the room, RE-call the car rental place and cancel the hotel room we should have been in by then in Roswell (I still don't know if they are going to take mercy on us on not charge us).
Miraculously, nothing happened to us in that hotel room.
We got up the next morning and showered. Stupidly I washed my hair and didn't think about the fact that I did not have a BRUSH! So I weeded through my mangled, wet mop and tried to dry it. We head to the elevator, go down and grab a quick breakfast snack at the front, and get on the shuttle to the airport.
The shuttle driver had said something about making sure we check our gate before settling in any section...and we found out why. We were supposed to be at B24, so we check in at B24. They say go to B12. At B12, they say go to B1. We run what seems like miles to B1, and they say go to B9. Over the loud speaker there is a recording that repeats something to the extent of, "Please make sure you check your gate, as your gate status may change at any moment". No kidding?! The girl at B9 says we might as well wait until a few minutes until our flight is due to leave to check our gate. Hmmm. Me thinks that is how people keep missing their flights!
But...we had PLENTY of time to sit and wait for our flight this time. So we sat, read, drank too much coffee, and laughed at the people and the things they do and say. We kept checking our gate, which changed two or three more times. A few pretty comical characters and dazed stewardesses later, we got to Roswell in one piece. Right off the bat, brother tells the car rental guy that we are in a hurry to get to our Dad's funeral and that was the fastest I have ever been helped in my life. Thank you, Roswell Hertz!
We got to the cemetery just as the funeral director was telling one of the Vet's for the service that we should be hopefully be there soon. (I had called him that morning to tell him we were arriving that morning instead of the day before...he seemed a little concerned that we wouldn't make it). We had about 10-15 minutes to spare for our Dad's service when we arrived. We were wearing jeans, sneakers, and sports-type sweaters...yes, and the same underwear from the day before.
There were about 8 chairs set out for people to sit...of course we're it...but the director asks if we want to wait to see if anyone else shows up after they saw the obituary. I tried to calmly say, "Um, but we didn't give you the obituary yet..." to which he said, "Oh, that's right, you're right."
I panicked a bit when he said that. If any obit. had already run, that would mean that the relatives that live there would've seen it and possibly shown up. Dear god.
For those who may not have read my entire blog and don't understand the "why" behind the decision to exclude certain people from this occasion, the summary is this: inviting one, or the few people who have been supportive over the years would've meant they'd all know...and from the drama that ensued after Papa, then Nany's, passing, we chose to avoid the dramarama. This was OUR Dad. Ours. And Daddy was not that happy about how things went down when Papa and Nany passed either, not that he would've ever said anything to anyone but us, but it just wasn't right. It was downright ridiculous, actually. And we really didn't need anyone showing up high, drunk, or out of some ridiculous obligation to prove they are someone they are NOT, and we honestly didn't need sympathy from people who in the past demanded furniture and personal belongings (or money) in a situation they should have stayed away from. If any relatives see this and get mad...then they are the people who did these things. Those who were caring and supportive would understand and move on. Those who were caring and supportive don't even need this explanation because they know what really happened. Those who were caring and understanding and knew our Dad in the slightest know EXACTLY what I'm talking about. Enough said.
So the director told us that some woman had called the day before to say they were sending a check to help pay for funeral expenses...he couldn't remember who it was. I didn't know if it was some sort of credit from the nursing home, or what...I guess we'd find out later when we signed the paperwork before our flight home.
When we were standing next to our Dad's casket, but facing our Nany and Papa's headstone...we saw the date that had been engraved for Nany's date of death was WRONG. The engraving had been done after we'd gone back to CA in Jan. 2007. The director said that someone in the family had to have signed off that this was the correct date...he seemed a little disappointed that it had been done wrong too...but oh well, what can you do? It's literally engraved in stone, so that's it.
Anyway, the service was short and sweet. We had the local Vet's do their thing, and it was really quite nice. One read all about our Dad's military service, awards he'd received...some things that I didn't even know. They saluted, presented me with the flag, and marched off. Well, in one vet's case, he actually got stuck in a clump of grass in his wheelchair and was mouthing obscenities to himself, but the whole sentiment was really great. I actually rather enjoyed seeing the little things that didn't go "perfectly"...because, hello? Then it wouldn't be tailor made for US...not to mention that anything that would distract me from crying was completely needed.
We left, drove by Nany's old house, drove by the house Dad grew up in (it had been leveled...just a concrete slab remained), and ate some lunch. Brother's phone showed that he'd missed a call from our area code (no message though) so he called it back. It was Robin from CEPS. Remember her? Well she was calling to say that they were going to send the remaining portion of our Dad's Social Security check to the mortuary to help pay for the funeral expenses. She was sickenly sweet and said that "they were so sorry to hear about our father's passing". Right. But we'll gladly accept that money to deduct from the thousands we were about to sign a check for.
We went to a few of the UFO places and got this gnarley alien "skull" that my husband saw on our last trip there and wished we had for Halloween ever since. Then we went to the mortuary to sign paperwork and write out a check, and we were able to deduct the money CEPS was going to be sending.
We had stopped to get some flowers to put in the vases on Nany and Papa's headstone, and some for our Dad. A few relatives from out of state (nice ones that we like) had sent two arrangements for us...one for our Dad and one for the middle vase on Nany and Papa's stone. It looked really nice when we were done.
We headed to the airport to GO HOME!
Everything there went very smoothly...well, except for the fact that I tried to order an iced, decaf mocha from the cafe there and the woman made me a hot, caffeinated drink twice. When I asked for "iced", she came at me with a scooper full of ice, saying, "you wan' ize?".
Yes, I wan' ize. The thing was so hot that there was no way it'd be cool enough to drink by the time our flight left. Brother got me a cup of ice, which made it undrinkable, so I threw it out.
The plane from Roswell is one of those really small puddle-jumpers, so not a lot of people to deal with or nonsense. There was a young mother and her little girl seated in front of us for the flight. The little girl had to be around 2, but she didn't have much of a vocabulary...so she kept making these noises that sounded like funny things that we would repeat to each other, and we played with her as she peeked over the top of the chairs and made her funny sounds. She was much more fascinated by my brother than me, so everything she said was aimed at him. One thing she kept saying sounded JUST like she was saying "you're gay"...well, more like, "Yagay!", and my brother would say, "No I'm not!" and she'd laugh. When she made noises to me, it sounded more like, "Yeahya!"...I don't know if you've ever seen Dave Chappelle's imitation of Lil' Jon, but she said it just like him. Too funny. Another nice distraction.
I came across this online...and I think it pretty well sums up this whole trip.
www.youtube.com/watch?v=iEZo84KNxKs

We got to our final destination at about 10pm that night. Getting "home" was another hour and a half...and I pulled into my driveway at 2 minutes past midnight...but we made it.
And Daddy is at peace now.
Lewy might've gotten in a seriously long last cackling laugh, but that's his FINAL laugh...for us anyway. I know that Lewy lives on in others, and that some people's fight with him has just begun, and I honestly feel sick at that thought. And I can only hope that no one else in our family is introduced to Lewy in this lifetime...and/or that a cure is found. I dunno. There is no right thing to say here except that I wish no one else had to go through this.
It has been a long, tear-filled road of frustration, anger; sadness; guilt; sleepless nights; broken dishes & furniture; flooded flooring; Depends undergarments; lost shoes, keys, wallets, minds, etc; "stolen" everything (both real and imaginary); horrible facilities; horrible caregivers; wonderful facilities and caregivers; Financial worries from hell; imaginary people who can meld into any shape they wish; a-hole Social Workers; losing friends; finding friends in the oddest places; finding out who is behind you and who never was; really expensive, useless legal paperwork; watching someone slowly forget you; watching someone forget themselves; seeing yourself age 10 years in 3; and all-but-giving-up until you realize you are the only one who hasn't...a never-ending list in a spiraling journey never to be forgotten (unless Lewy someday gets to us too).
Tomorrow: anything is possible.

Tomorrow Morning...

...we leave for New Mexico to bury Daddy.
I'm stressed for that simple fact, and because I do not want to run into any of the far too numerous relatives that live there.
This burial signifies the true end to Daddy's path with Lewy. It brings relief and sadness.
I don't know what else to say about it other than that.

When Everything is a Reminder.

Ya ever notice that certain things carry reminders wherever you go? I know that obviously I am completely saturated with my Dad's passing right now, especially considering we are just days away from flying to Roswell to bury him...but this darn song keeps making me teary eyed, and it's everywhere on the radio right now. I am not exactly a fan of the band who sings it (Linkin Park), but the lyrics somehow hit home for me...from the standpoint of someone with Lewy Body, and from the caregiver's standpoint as well. I have no idea if I'm allowed to reprint these, but until told otherwise, here goes (I've shortened it a bit and taken out the repeating choruses)...and I hope they're all correct:

"Leave Out All The Rest" by Linkin Park

I dreamed I was missing, you were so scared
But no one would listen, 'cause no one else cared.
After my dreaming, I woke with this fear
What am I leaving, when I'm done here?
So if you're asking me, I want you to know
When my time comes, forget the wrong that I've done
Help me leave behind some reasons to be missed
Don't resent me, and when you're feeling empty
Keep me in your memory, leave out all the rest
Leave out all the rest
Don't be afraid
I've taken my beating, I've shared what I've made
I'm strong on the surface, not all the way through
I've never been perfect, but neither have you
So if you're asking me, I want you to know
When my time comes, forget the wrong that I've done
Help me leave behind some reasons to be missed
Don't resent me, and when you're feeling empty
Keep me in your memory, leave out all the rest
Leave out all the rest
Forgetting all the hurt inside you've learned to hide so well
Pretending someone else can come and save me from myself
I can't be who you are
I can't be who you are

And Life goes on.

Okay, so before I launch into the frantic goings on of these past few days since Daddy's passing, I want to fill in the gaps of what happened before...when he was still at that damned VA facility and I was searching for another place for him.
So...I think I left off with me veto-ing Villa. I ended up touring a few places, including a place called Country Villa in Modesto (see, I told you a lot of places have the name Villa in them!) and one called Kiernan Village in Salida. Between a zillion phone calls with that lady Theresa from Patient's rights and many other places, I had "other" people communicate with that a-hole Ackerman and the now jerky Robin. I refused to return any of their calls.
There were many disagreements and miscommunications before I finally said that either Kiernan Village or Country Villa would be okay. Kiernan Village is only an "assisted living" facility, which I really didn't think could handle him, but the caregivers seemed to understand what my Dad's needs were, it had a wanderguard system, and it was close by. Country Villa is a Nursing/Rehab Center, and I thought it may be better suited right off the bat, but because he didn't have Medi-Cal and had the CEPS payee program, they weren't even sure if they could take him.
Longer story short, and days of phone calls, Kiernan Village came through. But we'd have to go pick Daddy up at the VA, because he suddenly "wasn't eligible" for transport like before (even though we'd have to pay for that transport anyway). What that was about, I don't know, but after talking to the director of Kiernan Village, we thought it was better that someone he knows picked him up to lessen his anxiety. I was a bit nervous about going to the VA since at this point, with everything said and done with Whackerman...I can honestly say I didn't completely trust myself to do or say the right (or calm) thing if she felt inclined to brow-beat us one more time with her hormonal personality disorder.
I had already brought all my Dad's belongings to Kiernan Village the day before we picked him up...I wanted everything "just so" when he got there. December 4, 2008, my brother and I went to the Menlo Park VA Geriatric Psych Ward to get Daddy and bring him to Kiernan Village.
We got there, were buzzed in, and waited in a hallway near a sitting room while the Nurse tried to find Daddy's Nurse and his things. I caught a quick glimpse of a woman in the office with Whackerman's name on it...I was confused, thought it had to someone else, and kept walking. I watched all the patients in that sitting area, all of them mentally affected in some way, and COMPLETELY overlooked that my own father was sitting right there. As we waited, Whackerman walked by us. I'm not sure she knew who we were because she looked at my brother and said "helloooo" in her trashy accent...that's how I knew it was her. I didn't look at her until she passed us. Wow. I've got to say that for someone with SUCH an ego, I expected her to be some sort of goddess. But no. She looked more like an Oompa Loompa with mousy brown, extremely thinning hair and a serious thyroid problem. We couldn't help but laugh. Such a miserable, horrible, liar of a troll. Now I see why.
The first Nurse finally came back, bringing our Dad near us. He didn't seem to realize who we were, but when he got close enough to me, he started crying. He looked so incredibly pitiful, his hair was long, his eyebrows were unkempt, and apparently they said they'd had a "clepto" in their midst, because Daddy didn't have any of his own clothes on. Daddy was walking okay with our assistance, and he was talking fairly clear and in full sentences. Brother went to use the bathroom before we left and Daddy asked who that guy was. He wasn't sure if it was my husband. When I told him it was his son, he started crying. Sigh.
So we headed back, stopped for some lunch, got Daddy a haircut, and brought him to Kiernan Village. I had gone through the huge bag of meds we were given upon his discharge...and there were dozens. DOZENS! I couldn't believe all the nonsense they had him on. Drugs to calm him down, wake him up, to combat the side effects from other drugs...unbelievable. I had Daddy off ALL his meds before he went there, and now they had him on 3 times the drugs I had weaned him off of.
He seemed pretty content with Kiernan Village, and we assured him we were close by and would be over or talk to him daily. We showed him around, got him settled, and left.
Over the next few days he suddenly spiraled. The Director, Ray, let us know that Daddy was refusing to eat or get out of bed. Because I know Daddy does that sometimes, even once a week, I told Ray to wait a day to see if he perked up the following day. He didn't.
On Decemeber 11th, 2008, Daddy was taken to the ER, they did tests, and found that he was in complete renal (kidney) failure. The Doctors said they can only assume it was due to all the drugs they (the VA) had him on, namely the cholesterol med Simvastatin...apparently kidney failure isn't an uncommon side effect? My God. I had fought with Daddy's Doctors for years to get him off Simvastatin, among others...he did NOT need them, his levels were always well below "healthy" levels...but no, they argued that the benefits outweighed the risks. How can that be, especially with his diagnosis? His life was limited...and even IF his cholesterol or blood sugar or any number of other things spiked...what is a better way to go...by sudden heart attack/stroke, or by lingering aimlessly like he inevitably did? I know a few people in my support group whose husbands have things like aortic aneurisms...and under normal circumstances, they would have surgery. But with dementia, they had to come to the unfortunate decision that going by aneurism is far kinder, so they've left it alone.
Such a horrible reality.
So, day by day in the hospital, Daddy got a tiny bit worse. More than half the time he wouldn't open his eyes, and he couldn't really move, but he was still eating...and still getting extremely agitated with the Nurses. He yelled and screamed at them when they were trying to clean or move him. Lewy was definitely in full effect because some of the things he said were regarding things and people at least 30 years ago. Or he wanted to "get out of the helicopter now", or go get his wallet out of the glove compartment. He even asked to get the car keys of a cousin's car...a cousin that has been in a semi-vegetative state for about 15 years.
They did dialysis 3 times before we had to make the decision to not do anymore...since if dialysis was his only way of staying alive, it would fall into the "being artificially sustained" category, and Daddy did not want that. So the dialysis stopped, and the hospital searched for a suitable Nursing/Rehab facility to discharge him to...he would be on "comfort measures" which is basically Hospice. We knew the end was near.
They said we needed to go sign him up for Medi-Cal to make sure we could get him placed quicker...that a place called Country Villa could take him if he had Medi-Cal (the same one I toured). So my brother, my two kids and I headed to the Medi-Cal office one day after visiting Daddy in the hospital. Over 3 hours of sitting in the Medi-Cal office later, we were told Daddy was approved for emergency long-term care Medi-Cal. That place was, to say the least, scary. It would be a whole other entry just explaining the hilarity that ensued at the Medi-Cal office, but anyone who has ever been to one can imagine, I'm sure.
Word came that Country Villa accepted Daddy, and on December 18th, he was moved there. There was a little bit of nonsense involved as far as paperwork being signed...the Director was not that sensitive in understanding or caring about the reasons we didn't want to sign his paperwork. I already knew from past experience that if you do not sign as anything other than his "agent", you WILL be sent the bills and held accountable for absolutely everything. Not knowing what I had already gone through in the past 3+ years, maybe she just thought I was some bratty kid, I don't know...and I know she thought that about my brother because she didn't mince words sharing that opinion. I had to assure her that we had no malicious reasons, and that my brother not signing was because he didn't want to end up like I've been the last 3 years. Who would, I mean, it was hell.
What annoyed me was that when my Dad had been transferred from the hospital to Country Villa, the hospital failed to share important information...such as regarding his Medi-Cal status and a few medical issues. I got it all resolved, but it's just so annoying when people don't do their job and you have to do it for them.
So Daddy was at Country Villa, and day by day he was slipping away a little more. Everytime I went there, I had the intention of telling him it was okay to go, that we understand, and that there were lots of people waiting for him whenever he was ready. But anytime I tried to get that out, I crumbled. I did ask him if he saw my Mom yet, Papa, or his sister...and he just fluttered his eyes, no real response.
I brought him one of his favorite ice creams everyday, and he'd eat about half of it. He slowly stopped being able to swallow food and they even added thickener to his water.
Maybe this sounds silly, but it was the day he refused to swallow his ice cream that the reality of Daddy dying hit me, and I knew it was just a matter of days, if that.
Over the course of the next couple of days, I went there sometimes twice. My brother and I would go, and sometimes I would head back over, and just sit with him and read for an hour or two. His O2 saturation levels had dropped to 75% so they'd put him on oxygen. He wasn't responding to any stimuli. He was getting so thin and frail, and due to the fact that he wasn't even drinking any fluids at this point, his tongue was like a hide of leather.
One evening I was there, I tried putting a few drops of water on his tongue and I thought I would have a heart attack...he started choking on it. Two drops of water caused him to gasp. I never tried that again.
Though I had already made phone calls and sent a check reserving a burial plot, we still had to go to the local Mortuary, pick out a casket and do the paperwork to cement all of his final wishes.
I had almost forgotten that he would need clothes, and that shopping trip just killed me. I was in a complete stupor worrying about what size, what color I should get, and whether he needed underwear? For a good day after that shopping excursion, I was a drained, mindless mess.
The afternoon of January 4th, we had made the very difficult decision to take him off the oxygen. We were getting mixed information about whether this was prolonging his misery. This was the same day that, when I returned on my own later, I got the words out. I told him how sorry I was that he had to go through all of this, and that anytime he was ready to go, we understood, and that we all loved him very much. I told him I got him a place right next to Nany and Papa, and that Shirley (his sister) and Mommy (my Mom) were waiting for him. I thought I would die saying these things. I gasped and shook and used half a roll of toilet paper in the bathroom blowng my nose trying to get these words out, but I did it. Sigh...
The next morning a Nurse called and said she wanted to know why we did that...taking him off the oxygen...that she didn't agree with our decision...that the oxygen was only keeping him comfortable...and that if he showed any sign of struggling to breathe and we insisted on keeping him off the oxygen, we'd have to meet with Nurses, the Social Worker, and an ETHICS COMMITTEE.
No, really, I don't feel bad enough already, make me feel worse. Thanks.
We were already on our way to see Daddy anyway, so we told them to re-instate the oxygen when we got there.
His eyes were glazed over and he was just not there anymore.
My brother and I stayed quite a while, then went to eat and I took him home. I was going to go home myself and that's when this nauseating brick hit my stomach and I went back to the Nursing home. Looking back, I think that maybe by the time I got there the second time, he was really already gone, but that his body still had to go through the process of completely shutting down. Of course I'll never really know for sure.
I am still not done making phone calls, even though realistically we don't have that much family left to call.
We have all our arrangements made for our flights, and Daddy was flown to Roswell yesterday. I went to the Mortuary early and "approved" how they groomed him. Hubby came with me, thank god, because it was like seeing Daddy die all over again. The person who prepared him really did do a good job, but it just wasn't my Dad. It didn't look like him. I truly realized, looking at him then, that it wasn't him. You'd think by now that I've seen enough death to come to a concrete conclusion already...but it wasn't until I saw my Dad there like that...that I think it cemented my belief that we go on from here...and that was just the body he had used during this particular lifetime. There is just no way that was my Dad. No way. It wasn't.
He had already vacated that body. What he really was had just left behind its shell, like when a snake shed's its skin.
Nothing now will ever convince me otherwise.
Oh, and before I forget...
I have obviously not been shy about naming names and ratting out facilities in this area that should be BOARDED UP...but I need to publicly state that Country Villa in Modesto was GREAT. Two Nurse's in particular...Sabrina and Nicole...they did a wonderful job taking care of my Dad. And just overall, I must say that I had a really positive experience with Country Villa and ALL their employees, and wish that more places were like them. They were compassionate and sensitive to what we were going through, and my Dad's needs were promptly and carefully taken into consideration...even when we weren't even sure what to do. I am extremely grateful that we had a good experience to walk us out of this nightmare.

The Blur Before We Depart.

Clearly, I cannot keep up with a blog. Life keeps happening and blogging does not.
Much has happened since my last post...much that I hope to get down in writing at some point, but right now it's down to this:
Daddy passed away this afternoon.
January 5, 2009 just before 4 pm.
My brother and I had already visited him today, but when I dropped my brother off, I just, I dunno, had this dread fill my gut. I went back to the Nursing Home, and Daddy already looked different. He wasn't moving, but something was happening. He felt cold. I checked his feet...they said that "mottling" would occur when he "was close"...and there it was. I kept running my hand over his forehead and cheeks. I told him I was so sorry he had to go through all of this, and that I loved him.
Then he was suddenly burning up, sweating even.
I was standing beside him, my eyes watching as his breathing slowed at a steady pace, then ceased, my fingers feeling his pulse drifting away one beat less each time. And his temperature was dropping rapidly.
In those last beats of his heart...he seemed at peace. I have to hope that is true. He did not struggle in those final moments. He simply slipped away.
As I realized that this was his final goodbye, this was really happening, this was it...that Lewy had finally won...I watched as the oddest thing occured: I could not completely focus on him...there was this...this "static" around him, a blur to the edges of his entire being. About an inch of "space" surrounded him...a fuzzy layer of distortion. My heart raced.
Is this what people are talking about when they say they've seen a soul leave a person's body? I have to say that I am holding on to that theory...that I witnessed my Daddy's soul lift out of his tired, confused, withered body...and that he was on to somewhere with no pain, no hallucinations, no arms and legs and brain that betrayed him at every move...on to a place that Lewy cannot enter.
Roy C. Frie was born in Dexter, New Mexico on October 29, 1934. He enlisted as a Marine during the Korean Conflict, and moved to California shortly thereafter. He has been a CA resident ever since. His main line of work was heating and air until his retirement.
He enjoyed reminiscing about days gone by, his days in New Mexico, when times were simpler and a whole day at the cinema cost about a dollar.
In the last few years he was preceeded in death by his beloved stepfather, his mother, wife, and only sister. And, actually, at least a dozen other family members that I honestly couldn't organize names to if I tried.
Services will be private and he will be laid to rest in Roswell, New Mexico alongside numerous members of his family.
He will be missed, and we will try to remember him as he was before Lewy took over, before the funny parts about him were stretched and twisted into what Lewy made him into. He is survived by his two daughters, his son, and 3 grandchildren.
I will hold on to that remarkable sight I saw this afternoon for as long as my mind allows me to...that fuzzy, bright aura that lifted itself from a body that could no longer hold a soul on a mission...the blur before we depart this world.
I love you Daddy. Be at peace now.
(And can you please tell Nany [or whomever it is] to stop messing with all my electricity!?)

{{{{{{{{{{one last hug}}}}}}}}}}

Dead Ringer.

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

Evil, Evil people.

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