ALS Misery

The caregivers are trying different ways to move Sarah around when they have to move her.

At times, when I walk her, her legs give out and I have to catch her from dropping to the floor.

One caregiver failed to catch her as she stood her up and I was called to pick Sarah up.

Going the same distance from even a year ago takes twice as long as then.

Sarah exerts herself so much when being walked that she is almost out of breath.

Sarah can only really move about twenty feet at the most. A year ago she could walk to the van outside.

God damn the day when she can no longer stand with someone's assistance. Then what do we do?

++++++++++++++++++++++++

I finally added up the checks from our asshole con man and it is over $100,000. I had no clue that he sweet-talked my mother all those months at the kitchen table while I was at work and my father was in his bed. When I bring an estimator in to tally up what should have been a "true" amount for the work that wasn't even finished, I am certain he will come up with a number of $35,000 or so and that won't include the hundreds of hours and my own money I had to spend to cover up the "average efforts" of his helpers.

And so the damage done by the "literal" motherfucker has spread to my job as I was written up for "blowing up" while a customer was in front of me because of a stupid employee's mistake who should have been fired years ago for various reasons including picking his teeth and nose in front of customers while putting their food in bags. Of course the manager blamed me for the whole thing as he has only sucks up to customers and his employees are "always wrong". Screw him and God damn ALS for putting me in a shit job with stupid people that help to fuel my anger from having a motherfucker "take" my mother's and father's hard-earned money which we could really use now to start thinking about what the hell to do when Sarah can no longer stand on her two noodle-thin legs. And so, with my criminal warrant for the asshole coming due at the end of the month, I keep finding new ways to "hang" him legally. Forget my family, he has screwed so many people for so long that finally the "wagons" are banding together and his time is coming due. Personally, if I were him, suicide would be his best option.

Every single day, something he did or did not do causes more work, more effort and more time which could all be better used just to take care of Sarah and now, my parents. He has caused my family to waste hours and hours of time (that he has neither clue nor care) from all his lies and deception. With a few more days, I can finally stop working on completing the projects he started almost a year ago. "See ya in court - you lying loser"....

What goes "thump" in the middle of the night in our house?

My mother.

Or maybe my father.

Let's hope 2012 doesn't bring any more physical harm to them and that Sarah can get the speech equipment she so desperately needs. That my parents can get away from this rigor more often and find some tranquility that they so sorely require. Simple enough.

Oh, and "the asshole" gets what he deserves.

Have a Healthy, Wise and Prosperous New Year and thank you for reading my account on living amongst ALS........................................................

Returning home from work yesterday I noticed both cars were not in the driveway which was very unusual. Apparently my mother fell while trying to go into a store and was rushed to the hospital. Having gone through this type of scenario with her proneness to falling, I took it in stride but Sarah did not. Of course Sarah panics as she is in a horrible situation which would become so desperate if my mother actually became incapacitated for once and for all. In the end, my mother came home in one sore piece and was moving around this morning. Tack another $1000 for the ambulance ride and who-knows-what for the all the tests (which came up negative). So Sarah can relax as things returned to "normal" tonight. Every time my mother has a fall, my mother becomes increasingly aware that her days of mobility are catching up to her own daughter's. Then, throw in my father's ever-so-slowly degrading mobility and it becomes very clear that the way things are going; this family will have to take another course. If my future is to be the "main" mover around this house then I really am going to question my reason for going on. Currently, it is depressing to see the three of them degrading to where they are at so I become really anxious to think about where they all will be in another year or with another serious fall. God does this suck all to hell and so now I live for just one day at a time and block out the thoughts of ever having a single, active life ever again at least until they all are buried or cremated - but by then, ALS and old age will have depleted my energy and the aloneness will push me to?

The asshole that ripped my mother off has no conscience and no regard to how much distress, mess, cost, and trouble his abandoning the work he was supposed to complete caused my family. The fact that he sat at our kitchen table and, day after day, week after week, came up with lies to get more money out of my mother, the idea that he lied to all of us for weeks about things that were never, ever going to happen, the truth that he caused so much stress for my mother (as she later came to doubt him) - all of these things just piled up and I can attribute my mother's fall to this bastard and everything else that happens around here I will pile on to "his Karmic Debt" to our family. EVERYTHING. He heaved a huge amount of stress on all of us and then, he just backs off and disappears with no regard to us as people. What the fuck did we ever do to him and his fecal wife? He pre-meditated his escape and for that reason alone he will pay dearly. Thank God the politicians around here created a law for losers like him and his life will be wrecked for decades. There is no "turning the other cheek" on this son-of-a-bitch. EVER.

JUST for the two stairwells to get carpeted (at last) my uncle spent $400 to fly up here for a week (time away from his job) and he and I spent over 24 hours each to get the carpet put in over three of those days (I had to take off one and a half days from my job too). An additional $200 for miscellaneous tools, the carpet we had to "re-purchase" for a very marked down price of $399 and all the time I spent to pull it all together. Screw that asshole. He believes he is "something special" but by the time I get through with him, he will come to the realization that all he is a low-life, white trash, pathetic, soul-less, condemned-to-Hell, piece of garbage. Karma (and with my help) will come to find the asshole and hopefully ravage his body in ways that his infinite suffering will make my sister's 20 years of ALS seem like just a one second itch. For months now I have worked my ass off and spent hundreds of hours to get things completed so with more time available, I can begin my revenge on this fucker with a vindictiveness that will not stop until he crawls back with the money and an apology--(holding my breath). As long as Sarah lives on, so will my revenge towards this motherfucker as what else is there to do while living amongst ALS for almost 14 years now? 

I, like most sane and normal people, do not want to create friction in the world. I try very hard not to make enemies in this world and have done a fairly good job at appeasing those who need appeasing. So, to have dealt with a "man-child" like the one I have been writing about for months, I have to personally make some changes in my personality to cope with the potential conflict of having to see this fucker when the time comes. The anger and rage is different towards him then it is about living amongst ALS. The anger I have towards the asshole is very primal and savage which are sort of new to me. As ALS has essentially reduced my life to living like a cave-rat with no social outlets, how in the hell can I not fester and fume for long periods about this crime? The anger comes in waves and I just wonder if behind the waves is a tsunami which will unleash what? So, with the stairs still in disrepair from the asshole who "took the money and ran", everything that needs doing around here takes more time than I have. This morning I was all set to drive a hundred mile round trip to get some carpet squares which I thought was a way to cover the stairs at a very low cost (since the asshole stole over a thousand dollars to do THAT particular part of the stairs -- eee-gads when I found out the amount he ripped my mother off for that). Yet, talking with a guy at the carpet mill on the phone, he recommended against it as it wasn't the best way. Son of a bitch, now what? We will have to PAY AGAIN to get it done by a professional installer plus buying the carpet -AGAIN. Honest to God, the damage wrought by this bastard will go on for another year (or longer). I know there are some really fucked up people on the earth, but this guy is mostly just a greedy, selfish, narcissistic, delusional, opportunistic, and who preys on those in bad situations to help fund his hobby of becoming a movie fat cat. Who in the hell would even listen to him in the REAL business world as they can easily check his background and find the load of bullshit he has cranked out his ass-butt-mouth for YEARS! No one in their right mind would give him a dime and so I believe he will ultimately resort to "being bad where being bad is good and good is bad" or some such faulty belief system which will inevitably cost him his pseudo-family and his own life.

Sarah is now "comfortable" with being taken into the downstairs bathroom in her wheelchair which is a very sad thing to see happening. Last week she had a series of bad days with one heavy on the tears as she seemed to realize that her days of standing with assisted walks are coming to an end - God, how that sucks for all of us caregivers as well in so many ways. Naturally, the house "repairs" were not truly made to adjust to this scenario for the bathroom is too small for a 260 pound electric wheelchair and certainly not big enough with the chair, my mother and me in there as well. Fuck it again....I screamed today in the car that I just want to get out to the beach and stare at the sunset.

Each day I recount some things that he did that now make sense as to his "ultimate" plan to take all the money he could before "his heart" started to hurt"  Poor boy. How this fat ass can live himself and be a role model to his stepdaughter of 18 is tragic. She is going to be one fucked up "girl" as she will never mature in a normal way thanks to the grandiosity and crookedness of this very low human being that somehow attracted a similar low, conniving whore. Thanks motherfucker for turning me into a bastard (for now) but I use that energy to do the things that are necessary to find redemption and justice as you piece of shit scarred my mother and family in their trust in people as was never known to us before at this level. I say to myself that "this is a process to become a whole person" before entering the "Pearly Gates". Oh, and all of my evidence, documents and other items related to this case? It is all now uploaded on "the Cloud" (or should I say "Clouds" as I learned never to keep the eggs in one basket). So when I finally sit on the balcony overlooking the ocean, I can access the information and then notify the locals to keep away from the cocksucker.

I wonder how many more days and nights this family is going to have to endure the wrath of ALS. My whole outlook on "life" is suffering from not just ALS but the incompleteness of punishing the fucker that hurt my mother and ripped us off. Essentially, we were robbed in plain sight. So the investigation drags on and the lawyers are taking their time but moving forward. I will refrain from any more on this asshole as I need to use my mental capacities to find other ways to fuck him and counteract all the lies he keeps spewing across the Internet to gullible victims. Naturally, going to work is not the same as how in the hell is one to "be upbeat" and pander for charities with supervisors breathing down our backs while having to make small talk to the multitudes of strangers and their spoiled little brats. God help it when they grow up and become "occupiers of the occupiers' federally-subsidized housing basements".

In the meantime, I am more concerned with the condition of Sarah as I have noticed more notes from her left by the caregivers in the kitchen each day it seems. The notes range from "new sleeping directives" to the type of food she wants to eat. Her body is much more wobbly when she is helped and the wheelchair knob for her right hand is almost to the point of mute as she does not have much muscle left in that hand to hold the knob and push it. It is quite sad to me but she has not "broken down" about it -at least while I have been around.

For me there is just nothing to get excited, optimistic, thrilled, or even the remote possibility of getting laid with anyone, male/female or even a large animal with a broken leg at this point in this ongoing drama. ALS is a painfully slow degradation of removing the quality from life and with Sarah's taking over 21 years, living amongst ALS is so ritualistic more than ever that it is almost torturous for me as I, too, have to live in a ritualistic way so as to be available more and more as "it" continues to droll on. Like the asshole who fucked us, I had a breaking point to call the police on him. I wonder what the breaking point will be when I have a breakdown about the whole cataclysmic, life-sucking ALS. Keeping up the false pretenses sucks and is very draining. Taking care of three people now is not what I signed up for almost 14 years ago. Yet, after watching my father for so many, many years, sucking it up and keep on going, I struggle to follow in his shoes as he at least had an amazing wife to share the road with and talk it through each night. I  myself, sit in silence in this fucking basement (although much nicer now) but still, with no one to get me through this as I can't give any "more" to my lost friends as ALS/job steals my time, the house steals my energy and the thief stole my money as well. No wonder my boss today came up to me and told me to 'quit the negativity talk" and "complain upward". Where else can I go to unload all the shit that happens at home? I used to go to the bars and do that but I have been sober now for six years and I don't know how I have pulled that off under these circumstances.....