To My Caregivers, RE: Weekends…

It’s Friday.

Most people I know are out enjoying the night life there is here.

I sit here in the dark enjoying a Gordon Ramsey fit-pitching episode on TV.

Tomorrow, there’s an arts and crafts show down by the river less than a mile away from me.

Tomorrow, I will sit here wanting to do something, ANYTHING other than just sit here.

I am tired of being alone here.

I am tired of being abandoned by those who are supposed to care and see me further my cause of recovery.

I am tired of waking from what little sleep I get to find my dreams are ghastly

but more tolerable than reality.

I am fed up with having to live under these conditions and no one seems to care.

I am frustrated with my own attempts to correct the situation, but to no avail.

I curse the drugs I have to take that seem to do nothing and dull my thought processes. Drugs YOU push to keep me quelled.

I damn the dawn on a daily basis for bringing more problems of daily survival and the pain of failure. Problems you give a shit about.

I want to scream out in pain and yet I find no comfort in the process so I hold it inside. My rage explodes and you call me “irrational”. This is not living, it is not existing, it is limbo at best.

My rants and raves brings no solace to me anymore.  No one is listening to me.

No one wants to hear of the dark side of this cursed life I lead.

So be it.

Live in your quaint little reality that dictates all is well in your life and pity the fool that writes this. I hope you never have to go through this, but secretly I hope you do.

Go to sleep tonight thinking you did good for people this week, but know this: you failed.

You will not feel bad over this, as you have fooled yourself into thinking you are a good caregiver. You are a phony to your soul.

You followed the rules and made money for the company, but you failed to provide help to your people who depend on you to help them.

Was your dinner OK? Did you have enough? Are you lying on freshly cleaned sheets on a matress that is comfortable in a house that is clean and bright? I am not, but who the hell cares? Not you, caregiver, not you.

Will you spend your off-hours out and about? Will you stop by Burger King and grab a hamburger? Take in a movie? Go shopping or get your hair done? We can not. But does that disturb you? No.

You tell us there are choices. You too have a choice to make.

Care for those who make it possible for you to enjoy the weekend.

Or not.

Your choice.

— Pax.

Daze Of Our Lives…

If my mind is already adrift in a sea of frantic thought, it seems the last thing I would need is a caregiver hurricane to churn everything into the perfect mind storm.

As I sat here in the wee hours of the morning, trying to sort everything away in my mental roll-top desk, making notes to remind me to this and that and checking bills and reading the weekly coupon ads for entertainment, I froze.

My mind short circuited again.

I sat here for a couple of hours, just staring into space. Zoned out, hearing shut down and vision focused on a spot of no significance.

Complex thought seemed to turn to one word flashes…

Dirt… Phone… Moving… Doctor… Food… Pain… Files… and so on.

Disjointed. No real extrapolations for actions. Just items as if they were on a shelf and you were just aware of them.

This is not the first time this has happened, either. I do this quite a lot, and I wonder if there is something in my brain (physically) that should be addressed.

And yes, I told the psychiatrist about it. He said this was “interesting” but made no other comment or action.

This also happens a lot when I am in a crowd or a store, albeit I do not encounter either that much.

As best I can figure, it’s like a safety valve on a hot water heater. My mental fuse box. The red button on the electric socket in the bathroom.

But leading up to that auto-zen cutoff is the problem. It’s like a panic attack where you can not scream or melt down. You get third-person on yourself. Your reality merges into the super fast lane and repetitively skips exits you see whizzing by.

Brief flashes of lucidity. The answers are so clear. It’s so simple. Wait… what was the answer again? There WAS an answer, wasn’t there?

I realize that as I sit here, I’ve spent three hours writing this. I think it happened again a few times while typing.

It makes me worried that I can’t control this. It worries me more that my caregivers could not give a damn.

There… it just happened again…

— Pax.

Getting Ripped Used To Mean…

In my youth, I used to get ripped on the weekends. Now I get ripped every day.

Ripped off, that is.

Since I have become affected by my illnesses, I seem to be more of a target for gouging, over-charging and a general attitude of “that’s good enough for him”.

Sorry I didn’t post yesterday… I was a bad, BAD day.

I was so mad yesterday, I could spit teeth (and I did), over the whole Medicare/Medicaid crap where my condition of COPD is not covered, I have to pay over a grand a month for Medicaid to kick in and so forth.

Then I get a call from my caregiver that I have been given an appointment to see an MD to which I will have to pay some damn $160+ to cover a deductible.  Not only that, but the COPD drugs will still not be covered.

WHY?!?!

When I signed up for disability, I told them of this condition and it was “covered” according to the SSA rep I spoke with. I would have to wait 2 years before Medicare would cover it, but at least I had a glimmer of hope. So I lived for two years on multiple emergency room visits and the occasional “Primatine Mist” to get me through.

Medicare kicks in, and nuttin’ honey.

To top off a real pleasing afternoon, It’s the monthly delivery of my psychiatric drugs. I look at the paperwork and notice I pay about $2.60 each for them. Wondering why, I call the care team and ask the insurance “expert” what the deal is. Seems the prior nurse signed me up for a Part D program she liked that covered psych meds but not much else. When I asked why this happens, I was told that the point was to cover the psych meds and other meds were not their concern.

But wait… the care team KNEW my other problems for 2 years running. THEY are the ones who would take me to the emergency room, etc… WTF???

Not to mention the fact a nurse is making decisions on MY insurance, and not consulting me in any way, but that’s typical in this kind of care. I’m not sure as it’s legal, as I am autonomous and they are not designated as a legal guardian, but I digress…

I’m also informed there are premiums that are being paid from my payee account.  I understand premiums must be paid, but who authorized this? how much?  When?

The point of the exercise is this: If you or a loved one or friend is under care, do yourself or them a favor… DO THE MATH. Chances are there are as many problems with the finances of care as there are phony charges on the cable and  phone bills.

I’m tired of people making a buck on my condition.

— Pax.

Mr. Smith Goes To The Asylum…

Today is the GOP primary here in Florida.

I wish I was able to get to some of the local rallies here, there have been several from all of the front runners over the last week. One rally was just a mile or so away from me down on the riverfront.

I wish I could have got there… I’d like to ask several questions.

If you DO get to go to one of these, please do me a favor and ask a few of these on my behalf:

—

When my disability status was approved by Social Security, I was told Medicare would not come into play for two years. Medicare said because of prior employment, I would have to pay $964/mo for medical care before they would begin helping. I was awarded $16/mo in food stamps. In this two year period, I went with little or no health care because I could not afford it. How does that help get me OFF the public assistance as soon as possible?

Medicare does not cover dental or vision for the most part. Thanks to the meds I take, I have brittle and broken teeth and I can hardly see my computer screen unless I am right on top of it. Again, how does this lack of coverage help me?

Lousy as the job market may be, there are some of us in the mentally ill community that would like opportunities to compete for employment, but we need training and education. When a person loses a leg or an arm, they are placed at the head of the line in vocational training. why must a mentally affected (but functional) person be placed last?

And finally the most important question: If your family member were diagnosed with a persistent mental illness, how would you want them treated, and why don’t you treat US that way?

—

There are more questions, but these are the major three that could directly get many people in the mental health community back into the tax-paying roles they are striving to return to.

So why don’t politicians pay attention to the mental health crisis in America today?

As you may or may not know, stories on mental illness get little or no coverage in the media. less when it is in politics. I was once a respected radio talk host, journalist and market manager for a major network, so I know.

I killed many a story regarding mental illnesses. Most of the time, I would allow a simple PSA story (a “puff piece”) but nothing hard-core about the system or it’s abuses.

I regret each and every one of those decisions today.

So ask your local reps and leaders when you can about these issues.

If I ever get the chance to get back on the air, I know I will.

— Pax.

The Caregiver’s Survey…

 

Every few months, the behavioral company that runs my care team sends out a “how are we doing?” survey on purple paper. It’s mandatory we fill this out, and it’s supposed to be anonymous.

The only problem is that the sheet is handed to you by your case manager and they wait for you to fill it out and collect it from you right there.

No sealed envelope, no locked box, just their clipboard. Hmmm.

I see a lot of problems with this system (as could anyone) but it’s the game of the system. Make them look good and you’ll get to stay on the team. Say something bad and suffer the fates.

I tried once to tell my opinions to the powers that be. Explain the lack of services, the attitudes and such.

From that point forward, they trained me to mark EXCELLENT for everything. It is a time of my recovery I needed to recover from.

I had to call the cable company today to fix a minor problem with my bill. A charge for a movie I did not watch or order. The employee insisted it was ordered from my set and there was nothing they could do. She even suggested someone else may have been in my one-room apartment watching movies while I was out. fifteen minutes later, the charge remained and I resigned the argument. Thanks for nothing.

The employee on the line said at he end: “When my company asks to rate your interaction with me today, can I count on you to tell them it was EXCELLENT?”

Froth with fear, I uttered “Of course.”

I feel like such a trained lab rat.

— Pax.

Caregiver Abuse DOES Happen…

Hospitals, group homes, assisted living and other in-patient facilities are ripe with dangers like this. Most of the time, they go undetected. When reported, the big-money kicks in and keeps the matter “internal”. At least this time, the slime got caught, albeit by accident. Any wonder why we are scared of these places? It happens more than you know…

Cops: Caregiver Performed Sex Act On Unconscious Man Brought To Hospital By Cops | The Smoking Gun.

Top 10 Life Skills My Caregivers Taught Me…

So here I am, pre-dawn, fearing how to get through Monday, let alone the rest of the freaking week. So I tore a page from my caregiver’s playbook that suggests me to write down all my positive aspects of what I am able to do. Once I looked at the list, I felt I could write a book about each one so as to help others in need. Or maybe not.

10.)  THE SINK: A BOUNTIFUL BOWL! – From bathing to laundry, there’s more than you think you can do with your sink!

9.)  SAUCE PACKET CUISINE – Why cook when it’s already done for you in a serving-size packet? For an extra treat, warm them up with hot water in the sink!

8.)  UBER-RECYCLING – Take an empty meds bottle, heat the end of a paperclip and melt several holes in the lid and viola! Instant salt shaker!

7.)  DECORATING WITH FOIL – Why spend money on window treatments when tin foil is just as good? Plus, it keeps out the governmental thought rays!

6.)  BETTER BADDER BEDDING – Don’t think of that bare, spring-protruding mattress as a nightmare to sleep on. With all the tossing, turning and getting up, you’re getting one hell of a workout, too!

5.)  BELLY UP TO THE BAR SOAP – When processed the right way, you can make shampoo, dish and laundry soap out of the those tiny little bars you get at the hospital!

4.)  FABREEZE IS YOUR FRIEND – This is for the time the sink is backed up or the water’s turned off. Laundry? What laundry!

3.)  MINI-MART MARVELS – When you do 90% of your grocery shopping at a drug store or gas station, let me show you how Slim-Jims can be a refreshing meat alternative!

2.)  FILTER ORAGAMI - No coffee filters? No problem. When folded just right, toilet paper, paper towels and certian fabrics do just as good and gives that joe a little extra kick! Take THAT Starbucks!

And finally…

1.) SALT – THE MINERAL YOU CAN USE AS A MEAL –  This one I’ve been learning about since last Thursday, so stay tuned!

Thank you, caregivers for helping me expand my horizons on these and other activities for daily living.

— Pax.

Separation Of Church And State (Of Mind)…

I’m about to pen an entry that will get a lot of hate mail, but as an ex-talk host, I’m used to that… and now I say unto you:

GOD.

A three-letter word that has a gazillion interpretations.

Chances are that my views and your views on a Supreme Being are not the same, although we try to “standardize” sects of the masses through Bibles, Korans, Torah and the like.

Who or what God is, and does not do, is NOT the focus on this entry. That debate would be futile and quickly turn into a “believe my way or burn in Hell” episode.

What IS the main point here is that my religious views are MINE and not my caregivers’.

Like A.A. :

The idea that one program or another will work better with a hearty AMEN is ludicrous to me. Yet most 12-step programs are centered around it. I see the platform as an indoctrination to a zombie-like state where you give up control to a higher being who guides you through your day free of whatever demon you’re trying to escape.

But this “higher being” usually winds up to be the leader of the group or a sponsor who controls your actions or tells you what to do or not do.

Now before you get all bunched up in the colon, I am not saying these programs do not work… they do. Kinda. They just do not work for ME because I refuse to relinquish my self-control to another person’s faith-based interpretation of how I can recover.

Not only this, but because of the way I perceive God, I abhor organizations who mandate that you pray with or attend their rituals so you can participate in their food bank or other social service outreach they do.

The organized religions of the world are filled with people who are doing good, but there are more of them who are doing it to further their economic or social status, absolve themselves from other evils they do,  or just plain ego stroking.

Look… God and me have an agreement between us. It’s private, OK?

So if you want to help me get to a laundromat, or take me over to a non-denominational food bank or have a group discussion about how to cope with depression, great.  Thank You.

If you feel the need so strongly to pray over my problems, I will stand in reverence out of respect while you do so. I don’t mind that.

Just PUH-LLEEEEEEZZZZZEEE don’t ask me to say AMEN at the end.

Thanx.

— Pax.

Ah, To Be Insane….

I asked a question in a group therapy session a few weeks ago, and I’m still trying to find an answer: “Is it better to be out of touch with reality when you have a mental illness?”

I realized the rage I had built up against the system, my own mind and my inability to combat it.

I recognize my daily battles for the basics and the loathing of the morning sunrise bringing another fun-filled day of disappointments and delusions.

This very blog shows my self-awareness of my plight, and my struggles within.

But are the “out-of-touch” in the community better off because their version of reality is working for them?

Many of them seem happier. Contented, even.

They suffer the same fates at the hands of the same people caring for me, but they seem oblivious.

Granted, their states of mind can be torture of another (and worse) kind, but they handle it better than I for some reason.

Some in my care group who are self-aware like me have resigned themselves to point they are numb and it doesn’t affect them anymore. I feel I am not far from this mark.

But I WANT to get better. I WANT to LIVE and not just exist.

I follow the rules, swallow the meds, go to the groups available, see the doc once a month… but I can’t get the HELP that was promised and it makes me frustrated. Angry. Desperate.

After so many years of this now, how does one go forward?

Am I asking for too much here? Raising the bar too high? I’ve asked that question several times too.

Is it the “flies with honey” syndrome? If I make nicey-nicey and smile vacantly into space, God Blessing everyone I meet and thanking them profusely for the scraps I’m thrown, would I get better care?  Dunno…

I’ve tried it all, it seems. But the fact remains I am S.O.L. on a my life right now, and I don’t know how to get through this.

Perhaps I’ll turn on the all-night Gilligan’s Island marathon and get to that “out-of-touch” state.

Then the first birdsong of the morning wouldn’t sound so vile.

Maybe.

— Pax.

As A Voice-over Artist….

An Iconic voice has passed. A voice from my childhood that followed me through my career. A man I’ve interviewed and admired. Rest in peace: Dick Tufeld obituary: ‘Danger, Will Robinson!’ voice actor dies at 85 – latimes.com.