Just Sitting Here, Staring at the Christmas box, Waiting for…What?

 

So, I keep watching that box full of my sparse Christmas decorations, waiting for it to spring out and find its way to my walls, curtain rods, door jambs and yes, finally to a fully decorated tree in front of the window (but only a 4′ one).  But nothing is happening.  The box just keeps sitting there, although I think I am seeing out of the corners of my eyes, when not looking at it directly, small movements, shadows flitting, and other sounds artificial trees make when moving about.

 

I know eventually, I am going to have to actually go to the box, and start to put things together and nail them up.  But I am in this nice little cloud, where I feel like I am floating, but if I try to get up and do things in the real world, I am heavy and slow and plodding and it feels like I expend all my energy on each movement I undertake, even just to fill up my water bottle.  I prefer to stay on my little cloud, feeling light and free, without worry, without hurry.  

The boxes will still be there when I am ready.

AN UPDATE:  My ex has never contacted me since the nite we discussed, with my daughter, my daughter’s moving to her father’s. He said he would contact me the following day, but…..well, there ya go.  But he HAS been talking to her.  She still wants to move in with him and they are still talking about it.  But he has not contacted me in any way at all, and I have decided that since I have custody, I will be keeping my daughter here, with me, the parent she has spent all but 18 months with, because she IS my daughter.  Because this is a time I need to PUT MY FOOT DOWN.  Because she and I both need to WORK on our relationship–not RUN from it.  Because this is one of the last times I can show her how much I LOVE her, how to grow a relationship and persevere and NOT run.  Because I am her MOTHER, and I won’t just let her run away.  I WILL show her that I WILL NOT give up on her, no matter what.

And, I have really made a major jump in therapy, and I have been able to not have any arguments with her (she says we might have still had 3 small ones), to not yell at her, etc.  We have been able to be calm with each other since the night we and her father discussed her moving to his home.  And, I think I am only getting better at staying calm and not reacting and that it will just keep improving.  So, the very thing she didn’t like, that she said scared her, that made her want to live with her dad, I am finally gaining control of….So, our relationship can only improve, right?  Right! So, no giving up.

Of course, if he REALLY wants to have her move in with him, he can always go to the courthouse and get the forms needed to ask for change of custody, visitation, and parenting time  and child support/back child support of our daughter.  And then he’d have to hire an attorney to represent him here in AZ, since he is now in OR.  And that would cost money.  And we all know how much he enjoys spending money on anything but himself….so, um, ya.  Not thinking that that is very likely to happen.  I may be wrong, but I don’t think so.

 

IM DONE!

I HAVE HAD IT WITH MY DOCTOR, WITH MY CASE MANAGER, WITH THE WHOLE DAMN CLINIC!  I REFUSE TO GO THERE ANYMORE, EVEN THOUGH IT IS THE ONLY CLINIC I AM ALLOWED TO GO TO.  

HERE IN AZ, IF YOU ARE ON MEDICAID, AND YOU ARE DETERMINED TO BE ‘SMI’ (SERIOUSLY MENTALLY ILL)  YOU ARE ONLY ALLOWED TO GO TO ONE OF FIVE CLINICS FOR ‘SMI’S.  YOU ARE ASSIGNED TO THE ONE CLOSEST TO YOU, AND CANNOT JUST SWITCH.  ALSO, THEY ARE ALL RUN BY THE SAME AGENCY THAT CONTRACTS FOR MENTAL HEALTHCARE FOR MEDICAID FOR THE STATE.  SO THEY ARE ALL THE SAME.

SO I HAVE NO OTHER OPTIONS FOR WHERE TO RECEIVE MENTAL HEALTH CARE.  I CANNOT GO TO A ‘GENERAL POPULATION’ MENTAL HEALTH CLINIC, BECAUSE I AM ‘SMI’.  I CANNOT GO TO A DOCTOR WHO IS IN MY MEDICARE PROVIDER LIST, BECAUSE THEY DON’T ACCEPT MEDICAID PAYMENTS.  SO I WOULD HAVE TO PAY THE MONTHLY PREMIUM MYSELF FOR MEDICARE PART B, AND I WOULD HAVE TO MEET THE DEDUCTIBLE FOR PART B AS WELL BEFORE MEDICARE WOULD PAY ITS 50% FOR MENTAL HEALTH CARE.  IF I USE A PROVIDER FROM AN SMI CLINIC, THEN MY MEDICAID IS ACCEPTED, AND THE TOTAL BILL IS PAID.  ALSO, IF I GO TO AN SMI CLINIC, MEDICAID WILL PAY MY PART B DEDUCTIBLES AND PREMIUMS AND COPAYS.

SO I HAVE NO OTHER CHOICE THAN TO STOP SEEING A PSYCHIATRIST, SINCE I REFUSE TO KEEP BEING TREATED LIKE CRAP AND NOT HAVING MY NEEDS MET AT THE SMI CLINIC THAT IS THE ONLY ONE I AM ALLOWED TO USE.

SINCE I AM NO LONGER GOING TO GO THERE, I CAN NOT GET MEDS ANYMORE.  SINCE I AM NOT GOING THERE, I CANNOT GET TEGRETOL LABS DONE SO MY NEPHROLIGIST DOES NOT KNOW HOW MUCH TO ADJUST MY MEDS FOR THE ACIDOSIS AND EDEMA I HAVE THAT WAS CAUSED BY THE LITHIUM AND WORSENED BY THE SWITCH OFF OF IT TO FIRST DEPOKATE AND NOW TEGRETOL.  SO HE CANNOT HELP ME IF I CANT GET PSYCHIATRIC LABS DONE.

OF COURSE, THIS ALSO MEANS THAT I CANNOT FINISH MY PHP PROGRAM (PARTIAL HOSPITALIZATION), BECAUSE IN ORDER TO BE IN IT, YOU MUST HAVE AN OUTPATIENT PRESCRIBING PROVIDER.  AND SINCE I NO LONGER DO, WELL, THAT AVENUE IS NOW CLOSED TOO.

SO I AM NO LONGER SEEING ANY DOCS OR GETTING ANY MEDS OR PARTICIPATING IN THE PHP PROGRAM.  I AM GOING IT ALONE, SINCE I AM THE ONLY PERSON I CAN COUNT ON TO BE ON MY SIDE. IT IS TRUE WHAT THEY SAY–ALWAYS LOOK OUT FOR NUMBER ONE, CAUSE NO ONE ELSE WILL.

I WILL DO ALL THE THINGS I KNOW TO DO TO TRY TO STAY STABLE, AND IF I CANT, WELL, I CAN ACCEPT THAT I WILL HAVE MANIC AND DEPRESSED AND MIXED EPISODES AND THAT I WILL JUST HAVE TO TOUGH MY WAY THROUGH THEM OR GIVE IN.  AT LEAST I WILL NOT HAVE ANY EXPECTATIONS OF THE DOCTORS OR BE DEPENDENT ON THEM FOR THINGS THAT THEY FAIL TO DO, FOR FAILING TO LISTEN TO ME AND MY SYMPTOMS.  I WILL TAKE CARE OF ME FROM NOW ON, WITH EPISODES OR NOT, AND DO THE BEST I CAN.

OF COURSE, I FORGOT TO MENTION THAT THE SMI CLINICS HAVE THE RIGHT TO PETITION AND COURT ORDER ANY PATIENT WHO REFUSES TREATMENT AND REFUSES TO TAKE MEDS OR KEEP APPOINTMENTS.  IN OTHER WORDS, BECAUSE YOU ARE SMI, THEY HAVE THE RIGHT TO SAY THAT YOU DONT HAVE THE RIGHT TO REFUSE TREATMENT AND THEY CAN COMMIT YOU.  I SAY, BRING IT ON, BITCHES!  

Better, I Guess…

Ok, so I had my Emergency Clinic Appointment, the one to try to help me get more stable after the first 2 weeks of being on Depakote from Lithium.  As you probably noticed in my recent posts, my mind has been all over the place, like it was full of live wires not attached just sending shocks and sparks everywhere.  I couldn’t even see through all the brain activity or hear through it to barely perceive the ‘real’ world that everyone all agrees is there, that everyone sees, the table, the tv, the computer, the room.  It was as if I was about to pass out, when all the colors invade your ability to sense, until the feeling either passes or they give you the smelling salts…and the smelling salts actually make all that distortion fade away and your brain goes back to seeing the world around you properly again, and you ‘wake’ up.  Except, of course, nothing works on a bipolar brain that is like that when it is like that, so you just keep going without actually seeing or perceiving, on the verge of passing out.  

So they gave me an increase in the amount and frequency of trazodone, which i usually was taking only as a prn when and if i noticed i was getting nervous, jittery or anxious during the day. now i take it at a higher dose, and i do it 3x/day.  They also added ambien for sleep, cause with my brain malfunctioning, I haven’t been made tired by my normal seroquel at night.  not only did they add the ambien, they doubled the dose of the seroquel on the idea that more of it would also help with my sleep and it would also add to the anti-psychotic support of the depakote.  But they want to still keep going with the depakote and not go back to the lithium.  And they wanted me to stop the cymbalta, the only antidepressant that has ever worked.  I was afraid to lower or stop it since it has really kept the depression from being strong while I was on the lithium.  But they thought it was feeding the mixed state I’m in.  I think getting off it or lowering it might make me go from a mixed state to a constant depressive state right now.  And if I was unable to get out of a bipolar depression, I might actually be a danger to myself in the very near future.  At least in the mixed state, I am going from one extreme to the other, and I know the depression won’t last, and neither will the mania.  Even though still being in the mixed state is horrible, is almost impossible to function in at all.  Stringing words together to make sentences is such a challenge, so difficult to concentrate, to think.  So hopeless feeling, can’t stay like this either.

So, now that I’m taking the new mix, I am still not being made tired at night, not with the extra seroquel, or the extra trazodone, or the ambien.  It is taking 1-2 hours for me to fall asleep after taking them.  But during the day I am much more somnolent, much more removed from the world. I am kind of like a zombie, but I can still get up and do things, just a lot slower and harder to think through what I am doing.  And it feels like most of my emotions, my feelings in relation to any situation I’m in, are extremely blunted.  I smile when something is really funny, but no more.  I make no movement or change when something is very sad.  I can think clearer, but it takes so long to put together the thoughts.  My brain is so wrapped in cotton or saran wrapped it seems to be protected from any emotions at all, but the smallest, in response to the world around me.

So, I guess I’m feeling better.  No big ups or downs.  No running around like a chicken with its head cut off.  No crying endlessly for no reason, wishing with all my might I could go to the hospital or find a place alone to end my sadness.  But knowing I can’t because what would happen to my kids?  But now although I am ‘stable’, I am also removed, slowed, and dulled and blunted.  I lack almost all emotional response.  And I am still not sleeping well. This is not how I want to live either.  So, is it really better?

I wonder if I will ever be able to get back on lithium?  Or if they will just keep adjusting my peripheral meds until it is more tolerable?  How long until I feel like myself again? (if ever).  Was it all my mistake when I gave in to the pressure from my psych doc to try other mood stabilizers? Maybe I should have stood my ground, even though it seemed to be childish?

So, my next appointment is in 8 days.  Guess we’ll see then.

Bad Time of Year?

Just seem to be noticing that lots of us in blog land are feeling more scrambled and out of control than normal.  maybe its the coming of the fall, maybe the days starting to get shorter.  i don’t really know.  but i hope all of us start to get back to our normal level of discomfort really soon.  this is tiring and wearing and i am about done.

all because i felt some real or imagined pressure from some rather real doc to change my mood stabilizer.  anyway altho i resisted i gave in eventually feeling that i was acting like a child with a tantrum by not even considering other options that who knows might work just as well.  well, i was wrong.  i should have stuck to my guns.  i feel like crap, im not thinking worth a shit and im swinging on that old pendulum rapid, slow, erattically and not even in a straight line back and forth!  i’m swing forward and backward and sideways too.  and i just don’t know what to do until they get my power in my brain turned back on so its functioning right and those damn zig zag lightning bolts and yells and screams and tears and pictures of everything flashing in my eyes goes away and ‘normal’ returns once again.

normal, which isn’t even normal.  which is still somehow outside the pale of where most people live, normal for me for bipolar everywhere, where normal is no more electric bolts in your brain, no more images flashes thoughts screaming and racing around.  but no more feeling either, every inside passion, every fire, tamped down.  don’t want this, this crazy in my head, but don’t feel alive when i’m well.

they talk, they all talk about recovery but there is really no such thing.  for normal is never normal,  it’s just less insane.  its never ok, it’s never gone.  it’s just not as bad as what might be.  it’s flat, it’s plain, it’s black and white, maybe a few shades of gray.  but it is not normal.  it just looks like normal and it’s the best we got, so we better take it, baby, while it’s hot.

 

“Mercedes Benz” by janis joplin

Oh Lord, won’t you buy me a Mercedes Benz ?
My friends all drive Porsches, I must make amends.
Worked hard all my lifetime, no help from my friends,
So Lord, won’t you buy me a Mercedes Benz ?Oh Lord, won’t you buy me a color TV ?
Dialing For Dollars is trying to find me.
I wait for delivery each day until three,
So oh Lord, won’t you buy me a color TV ?

Oh Lord, won’t you buy me a night on the town ?
I’m counting on you, Lord, please don’t let me down.
Prove that you love me and buy the next round,
Oh Lord, won’t you buy me a night on the town ?

Everybody!
Oh Lord, won’t you buy me a Mercedes Benz ?
My friends all drive Porsches, I must make amends,
Worked hard all my lifetime, no help from my friends,
So oh Lord, won’t you buy me a Mercedes Benz ?

That’s it!

“Me & Bobby McGee” by janis joplin

Busted flat in Baton Rouge, waiting for a train
And I’s feeling nearly as faded as my jeans.
Bobby thumbed a diesel down just before it rained,
It rode us all the way to New Orleans.I pulled my harp from and my dirty red bandanna,
I was playing soft while Bobby sang the blues.
Windshield wipers slapping time, I was holding Bobby’s hand in mine,
We sang every song that driver knew.

Freedom is just another word for nothing left to lose,
Nothing don’t mean nothing honey if it ain’t free, now now.
And feeling good was easy, Lord, when he sang the blues,
You know feeling good was good enough for me,
Good enough for me and my Bobby McGee.

From the Kentucky coal mines to the California sun,
Hey, Bobby shared the secrets of my soul.
Through all kinds of weather, through everything that we done,
Hey Bobby baby kept me from the cold.

One day up near Salinas, Lord, I let him slip away,
He’s looking for that home and I hope he finds it,
But I’d trade all of my tomorrows for one single yesterday
To be holding Bobby’s body next to mine.

Freedom is just another word for nothing left to lose,
Nothing, that’s all that Bobby left me, yeah,
But feeling good was easy, Lord, when he sang the blues,
Hey, feeling good was good enough for me, hmm hmm,
Good enough for me and my Bobby McGee.

La la la, la la la la, la la la, la la la la
La la la la la Bobby McGee.
La la la la la, la la la la la
La la la la la, Bobby McGee, la.

La La la, la la la la la la,
La La la la la la la la la, hey now Bobby now Bobby McGee yeah.
Na na na na na na na na, na na na na na na na na na na na
Hey now Bobby now, Bobby McGee, yeah.

Lord, I’m calling my lover, calling my man,
I said I’m calling my lover just the best I can,
C’mon, where is Bobby now, where is Bobby McGee, yeah,
Lordy Lordy Lordy Lordy Lordy Lordy Lordy Lord
Hey, hey, hey, Bobby McGee, Lord!

Yeah! Whew!

Lordy Lordy Lordy Lordy Lordy Lordy Lordy Lord
Hey, hey, hey, Bobby McGee.

“What Good Can Drinkin’ Do”by janis joplin

What good can drinkin’ do, what good can drinkin’ do?
Lord, I drink all night but the next day I still feel blue

There’s a glass on the table, they say it’s gonna ease all my pain,
And there’s a glass on the table, they say it’s gonna ease all my pain
But I drink it down, an’ the next day I feel the same

Gimme whiskey, gimme bourbon, give me gin
Oh, gimme whiskey, give me bourbon, gimme gin
‘Cause it don’t matter what I’m drinkin’, Lord, as long as it drown this sorrow I’m in

I start drinking Friday, I start drinking Friday night
Lord, I start drinking Friday, start drinking Friday night
But then I wake up on Sunday, child, there ain’t nothin’ that’s right

My man he left me, child, he left me here
Yeah, my good man left me, went away and left me here
Lord, I’m feelin’ lowdown, just give me another glass of beer

What good can drinkin’ do, what good can drinkin’ do?
Well, I drink all night but the next day I still feel blue!

you can substitute any other part of your life, other than a man, and her songs still ring just as true, still hit those same notes of struggle and pain and the desperate hope for something better, for some bit of happiness.

 

Maybe…

Maybe I’m not really sick anymore.  Maybe I just learned it’s easier to say I am.

Maybe if I just tried again, got up on that horse again, I could be someone.

Maybe I was never sick to begin with, just sick of life.

Maybe I’m really better now, Maybe things are better now,

But I won’t give them or me a chance to grow, a chance to bloom, to afraid to fail

Again.

 

What will happen if I open the door, Open the door to life again?

What will happen if I step outside, step outside of my safe place again?

Step outside into the real world again, with expectations, obligations, and responsibilities?

Where I have to perform like the elephants at the zoo and the monkeys at the circus?

 

What if I make mistakes, What if I can’t perform anymore?

What if I can’t make the grade, fail to beat the score, can’t move fast enough anymore

Can’t keep up with the pace, find myself again failing the race.

Lose my place, keep trying anew, finding I can’t make a fit anywhere.

 

Things going wrong, haywire again, find myself stuck back inside

Unable to venture out, unable to win, the bar too high that was once so near.

Finding I’m back at the bottom, but this time there is no net

No one believes I can’t make it yet.  They say I’ve had time enough

To get back into that groove, can’t keep quitting when it gets too tough.

 

No more support, no more kindness, no more safety net to catch me now.

End up back in my head, can’t get out ever again

Can’t leave my shelter, my safe space, I know now

No one will believe me if I try again and fail.

 

They will say she is just not ill, She is just too lazy

To do her share.  She is selfish, expects the world to

Work for her and us to tell her so.  She wants to wallow

In her despair, Brought on by her own failures.

 

The system will say she had her chance, that if she had been telling the truth

She never would have tried again.  She just could have stayed inside, no one

Ever questioning the tide.

 

But maybe I was wrong, all those years ago…

Maybe I wasn’t really sick, just swallowed up in my own sadness,

In my inability to change my life.  Maybe I just gave up, gave in,

To my inner world that said I’d never win.

 

Maybe I should have kept trying, and I would not be so stuck today

On whether I deserve a second chance at life, or whether I should stay.

Inside.  Safe.

 

So I’ll never know if I could have won, Never know if I could do it again.

The risk is just too high, can’t be a failure all over again.

Once is enough, and done is done.

Just When I Think I’m Out….They Pull Me Back In

Thanks, Al Pacino, as the youngish Don in Godfather 2 for that quote and sentiment.

Tonight, just a list. A ‘food for thought’ kind of list.  A list that says, ‘how am I supposed to be getting well, when “it just keeps getting piled higher and deeper” ‘ kind of list.  Well, enough confabulating, the list:

Son’s car repairs, beyond what he can pay from his salary as part time at Taco Bell–$310.  Without this repair, the car will not pass emissions testing and will not get its tags and will be undriveable. The testing must be completed by the end of this month. 

My car repairs, which cannot be completed because I still owe the shop half the money from the last repairs.  And because my son’s car is already off the road.  $–unknown (due to accident, see later on list)

My son’s school fees-$200.  Daughter’s school fees-$200.  Son’s clothing needs-Some of everything.  Daughter’s clothing needs–all of everything.  Total-$400’ish.

Moving costs for August 3-rent on old place, rent on new place, +$300 deposit on new place, plus renting a moving van for 1 day-$50.

Copays ex just reimbursed me for that now have to go to other costs than to reimburse me.  Still need to pay provider the copays ex just gave me tho.  Hmm…$200’ish.

Insurance company for woman who rear-ended me on freeway in May.  On June 30, representative for insurance said they accepted 100% responsibility, but in mail 10 days later, written notice they were denying any responsibility.  They still had their adjustor come and do estimate (he said it was definitely the other car that caused all my damage, and he has completed and sent in his report–I talked to him to be sure).  They refuse to return my calls, even though their voicemail says will reply in 24 hours, I have left messages every day since June 5th.  Meanwhile, my car is driving very scary and am afraid to use it, or to have it seen at my shop, cause if I fix it, then the other insurance definitely won’t reimburse me.  Actually, this is the insurance that refuses to call me back:

Got divorce finalized in December 2011, applied for deferment or waiver at time of filing, so I had to pay nothing at that time.  Have never received anything from court since, until, July 15 when they sent me a collection notice for 20% interest in 30 days time if not paid in full by end of July–$400.  Told them I could pay it in September, they said too bad, so sad.  Pay or go to collections. Or try to get new deferral, but it won’t be approved because is from so far back.  Apparently, that is not their responsibility that they did not bill me appropriately, I was supposed to know I had a bill for x amount and pay it without a statement or invoice, etc.  They said I did not update my address, I said I did, and I had the scanned documents to prove it that I mailed in, and the postmark would prove it.  They said it has to be in person update of address to their specific court billing department, and that the normal updating of address for court is not for them and means absolutely nothing, even though I could prove I had sent it in.

Oh, and additionally, I get to refile for modifications to my divorce child custody and support and insurance, since my ex just told me he’s moving out of state on Friday, so he won’t be seeing the kids on weekends anymore and so he will have to increase the amount he pays in support for each of them.  Wonder what the fees for filing that will be, on top of the above $400 from 2011 that I was magically supposed to know about.  Maybe they can roll it all together?  And hit me for it all at once?  so I’ll be even more broke–if I get any more broke, I’ll be homeless eating at soup kitchens.  And I’m not being mellow dramatic.  And this is the courthouse and court that is acting so ridiculous:  

And then there’s the things that don’t cost money, but are so much fun to deal with that I just couldn’t leave them out.

First one, a 1.5hr conversation with a supervisor in my ‘team’ at my mental health clinic where I was trying to request a perishable food box, not the dry goods one.  I knew they were separate and from separate places.  But I didn’t know the names/labels the staff and case managers used to refer to them.  So, it turns out Food Box A-Dry Goods, is from a church and requires one’s case manager to fill a form out with the client a week before it is delivered to the clinic for client pick up.  You can only make one request for Food Box A-Dry Goods in a 3 months period.  I have never filled out a form, and have often received food boxes more than once in 3 months.  Also, the food boxes I have received were perishable, and my case manager delivered them to me, or told me when she had them so I could pick them up.  So, after going round and round that I never signed or filled out a form in 5 years of going to this clinic, where I was afraid I was going to lose it and burst out in tears, or ‘get that tone in my voice’ that makes people just walk away from me and ignore me forever, he finally said ‘well, case managers have the ability to go to 22+ food pantries to get perishable food boxes and deliver them to their clients.  Maybe this is what you are talking about?  And I said, flooded with such relief that I was afraid I was going to bow down on my knees and pray to God right then and there thanks that I was finally being heard, understood, and listened to, YES, THAT IS EXACTLY WHAT I HAVE BEEN TELLING YOU FOR THE LAST 1.5HRS.  THAT MY LAST CASE MANAGER DID THAT.  THAT THAT IS WHAT I WANT FROM THE NEW CASE MANAGER.  THAT IF SHE DOES NOT CHOOSE TO DO THAT (as it is optional for them to do that) THAT THEN I WOULD GLADLY FILL OUT THE FORM FOR FOOD BOX A-DRY GOODS, BUT ONLY IF I COULD NOT GET FOOD BOX B-PERISHABLE GOODS (which are up to case manager to do or not to do).  Then, he finally agreed to have her contact me tomorrow to find out if she does do FOOD BOX B-PERISHABLE GOODS, or not.  And if not, then I will fill out the form for FOOD BOX A-DRY GOODS, tomorrow.  And it only took 1.5 hours.  But I was REALLY proud of myselves for not bursting out into tears (the guy would have walked away if I had) or for ‘sounding’ argumentative/belligerent from frustration.  He would’ve walked away then too, maybe set security on me even.

And the piece de resistance, the mignon final, my late father’s wife, who is listed as Co Power of Attorney, Durable, for Health Care for my only living family (2 cousins who are sisters, who raised my dad) has shunned me, blocked me out of the loop concerning my two cousins, and has made my cousins believe that I am trying to steal their money and place them in nursing homes, when in actuality, I am trying to convince them to accept some home health and cleaning services so they can stay in their own home, by contacting the Area Agency on Aging and having them do a service counselling appointment.  Well, my step mom, now that my dad’s dead, has been trying to get their money for the last 3 years.  But when I actually want to step in and help them by having her do that, she shuns me and intimidates my cousins from talking to me or allowing the staff at the nursing home from talking to me, or allowing the Area Agency on Aging from talking to me, or their doctor’s from talking to me.  So, I am now effectively out of the loop because my step mom is going against my dads’ last wishes that my family should be in their house as long as they can be safe and healthy and have their needs met.  Since he died, my step mom has been trying to get them out of their house and take their money.  Now that I saw how they are living as hoarders (y’know those real life TV hoarder shows, ya, my cousins could be on that show) plus the filth under the hoard.  Plus they don’t bathe or wash their hair.  And the need assistance to get in and out of the house and in and out of the car.  So they need help if they are to stay in their home. They think if they accept help, they would spend down their estate/savings (which is true, but then they would be eligible for medicaid and would have every service covered).  They also think if anyone sees how they live, they will be forced to leave their home, but that is only true if they are found by a doctor or judge to be incompetent.  They are certainly not that.  So, step mom has made me the scape goat and has convinced my cousins that if they speak with me, they will lose everything and that I hate them.  I still have power of attorney, durable, for healthcare, because the only way that can be revoked is if my cousins themselves tell a healthcare provider that provides any service for them that they do not want me as their poa any longer.  They can also put that in a short note in writing.  Or, they can have it witnessed by 2 competent people or by a notary.  But my co-POA, my step mom, cannot just go around saying I am no longer POA just on her sayso, without any statement from any healthcare provider of my cousins or a written notice of it properly recognized by the state.  But still, step mom is doing just that, and is just going around announcing that she has removed me as POA, or that the cousins have, but there is no proof that the cousins have done any such thing.  Therefore, until proper recognized written notice is provided or until one of their healthcare providers says the cousins told them these wishes, I am still POA, no matter what step mom says.  But the hard part is proving it, and in engaging in and staying through to the end and winning this battle.  Just the thought of having to engage in this battle is epically depleting.  I don’t know if I can even see it through if I engage fully in it.  Especially with all the above stuff already weighing on me and being immediately pressing.   This really is the actual place they are at right now:   

Sorry.  Didn’t mean to whine.   Others have it worse.  I should think of all those in Ethiopia or wherever.  I am completely overwhelmed just in contemplating the oncoming battle over the cousins…don’t think I have the stamina to see it through or win either one.  This was really just meant to be a list that I could refer to to see what all I am dealing with daily because it all gets jumbled up in my head and I get so stressed and anxious and short tempered when it all gets tangled up and I can’t find room to think or breathe and at least in this list it is all laid out so I can keep each thread separate and at the very least know what is on my plate, even if I don’t want any of it, or know where to start or what to do with any of it.

 

 

Safe

What is it to be ‘safe’?  For me, it is complex, that’s what it is.  It means knowing I have a roof over my head from month to month.  It means knowing I have (any) transportation to get where I need to go.  It means knowing I have enough food for the month.  And just maybe, if I’m lucky, it means having TV and internet, and maybe phone.  It means not being hurt by someone, by anyone, by any situation or encounter or environment.  

Jeez, I guess I ask for a lot.  I don’t think I have ever felt ‘safe’ in all those areas, ever, once in my life.  I have always been on the run, fleeing from one ‘unsafe’ to the next, promised ‘safe’, only to find that it was also ‘unsafe’ in some way.  What I really want is just once, once, to be ‘safe’ about everything.  I feel like I have put in twice my number of years trying to find ‘safe’ while everyone else seems to put in half the amount of time and effort and they actually manage to achieve it.  I am still looking for it.  I am still running scared.  And I’m getting older.  And tireder.  And slower.  And don’t feel like playing this game anymore.  I don’t feel like searching and running anymore.  I want to rest.  I want to sleep.  I want to have something worth having.  A reason to stay.  To wake up every day.  

I actually had a therapist to whom I confided that I felt I ran twice as far, twice as fast with twice the effort and ended up treading water, compared to other people.  He agreed.  He said it was true.  He said those of us with PTSD, with BiPolar, with Trauma and Depression, have that as a common experience.  That it takes a lot to make it all pay off.  He wasn’t even able to assure me that all that work would ever pay off.  That I would ever find that elusive ‘safe’.

Does it even exist for us?  for me?  

Don’t Know What to Do, Pt. 2

Ok, so where was I?  Oh, yes…so, after I returned home, across the country, I just couldn’t bear the thought of my family living in that environment.  I knew they needed help, to get rid of the hoard, to get and keep the house clean, to help them bathe and take them to appointments and errands.  And to make sure they put their feet up and actually go to bed and take their pills.

So, I searched out on the internet where to begin, and found the Area Agency on Aging (AAA) and was directed to the local AAA for their region, aka ‘Milestones’.  So, I talked to them, and had a very interested and helpful counselor.  She told me they do what is called ‘Options Counseling’ for the elderly who are either at risk for or are self-neglecting.  That fits my family exactly.  They don’t have the authority to remove anyone unless a judge or doctor has ruled them incompetent.  So, my making this call had nothing to do with using POA, nor did it have anything to do with removal.  It simply was a way for my family to be told what would need to be done to make the house habitable so they could stay there after the leave the nursing home where they are for rehab.  I also found that while the Police will be more than happy to do a wellness check, if the home is habitable, and the family has not been found incompetent, then even the police can do nothing.  So all I have done is ask for an outside party to explain that they really need to make their house habitable so they can stay there, since they don’t want to listen to me.

Well, I tried to call them at the nursing home, but when they found out it was me calling, they told the nurses they didn’t want to talk to me.  So, I tried again last night, and just got told they were busy.  So I tried again today, and one was sleeping and the other being showered.  (If she really accepted a real shower, I am impressed by the staff there!!).  So, they are avoiding me, and are not being very subtle about it.  So, I guess I am persona non grata since I care about their well-being.  And it’s not only them, it’s my step-mother too.  She is my late father’s wife, who was like my family’s own son.  He would never have allowed them to live as they are now.  He would have cleaned the house out himself or moved them to a facility.  Not because he would be upset, because he would just never let them live in such an intolerable state.  His wife, R, has been pushing to get them out of their home for the last 3 years since my dad died, and now that I am in agreement with her, and am actively pushing AAA and Milestones and the doctor to help get them into a home or to fix up their own home, she is suddenly on their side, suddenly against them having a habitable home or moving to a nursing home.  She is suddenly not on my side of my family’s best interest.  She is not returning my phone calls, not replying to my emails, and told the lady at AAA that I was no longer POA (even tho talking to AAA/Milestones does not require POA, nor does asking them to provide Options Counseling)….but she and the sisters have failed to put in writing that I am not POA any longer and have failed to execute a new POA without my name, and have not told the healthcare providers that are caring for them that I am no longer their POA….so I question the validity of the statement by my step-mom to the AAA that I am no longer POA for the sisters.  But that aside, I have done nothing that requires the use of POA in the first place!!

So, I get why my cousins, the sisters, are upset with me, because they don’t want to have to change, don’t want to get rid of the hoard or have someone clean the house and them and take them places.  But they need it.  And if they don’t accept it, they are self-neglecting, and maybe I can get a doctor or judge to agree.  But what I don’t get is why my step-mom has made such an about face after being so gung-ho on getting them moved.  Why does she suddenly want them to stay in such an environment, without help, when she’s been pushing for just that for 3 years?  Why is she shunning me just as the cousins are?  These two sisters are my only family outside of my kids, and she is helping turn them away from me when all I am trying to do is make sure they take care of themselves and live in decent quarters and have the help they need.  I would do this for anyone I saw or knew who needed help.  This is just what people do.  Right?  

Don’t Know What to Do, Pt. 1

Ok, so I went to see my only family (other than my kids) for the month of June.  They are truly my second cousins, but they raised my dad from a young child, so they are really more like parents or grandparents.  They are pretty elderly now, and  I was worried that my kids and I might not get another chance for all of us to see them again.  I was also hoping we could help them out with things that might need done around the house and such.

Well, when we got there, we discovered that in the last 3 years, they have become full-fledged hoarders.  The front rooms, (dinette, kitchen, defunct dining room and living room) were stacked waist high along all the edges, leaving open spots for the stove and sink, and a path to each of the 2 bathrooms.  The hall, which runs the full length of the house, was filled with stuff and was impassable.  The back rooms (the 4 bedrooms) were so filled with stuff that all but one was impossible to even open the door more than a few inches.  That one, the one that opened enough to enter it, was filled all along the edges but did have a path carved out to the bed, but the bed itself was covered in bags and bags and bags of stuff as well.  And it wasn’t just the piles of bags and loose items and junk and trash all mixed in everywhere, it was the filth.  The dirt, the nastiness, the dust that was so deep you could use it as quilt batting.

We were told we would have to either sleep in the recliner chairs or use the mobile home (trailer) in the back yard, which used to be one of the sisters’ homes when her husband was still alive.  We opted to use the trailer, as it had a proper bed and 2 full recliners.  Unfortunately, it didn’t have heat, gas (no stove), or water.  Of course, we kept being told we would get water the next day, and the next, and the next….so, that led to us using the toilet more than we would have, and let’s just say, it was not pleasant.  It did give us a brief respite from the sisters, tho, which was needed by the end of each day.  Even had we stayed in the house, we would not have been allowed to use the shower (it too was full of boxes and bags and dust more than half an inch thick).  So, we ended up using the spigot outside the back of the house and a bucket to have our showers.  This meant soaking whatever we were wearing, and soaping up and rinsing and same with hair and shaving…then, to bring everything back to the trailer and change into dry things again.  Let’s just say, it was quite a production.

About a week after we arrived, one of the sisters was told she needed to be admitted to the hospital for urgent diuresing;  that is, her legs were so swollen they were raw and dripping fluid, and fluid was backing up into her abdomen causing her blood pressure to be quite high (especially considering she has had a pacemaker put in a few years ago) and leading to concerns that she may develop fluid in her lungs.  These are all potentially deadly or at least serious conditions.  She finally agreed to go, and was getting better (since she was actually taking her meds and spending time with her legs up and sleeping in a bed at night, which she refuses to do when at home).

Her sister, staying home alone, was very upset.  We decided to sleep on the floor and recliner in the house after all to keep her company and visit with her.  Plus take her to visit at the hospital, and do errands.  As the days went on to about a week, sister B started becoming more and more confused, but I was unable to reorient her.  By the end of the month, we had to leave as I had bills to pay, my son had work scheduled, etc.  But we knew sister A would be getting out of the hospital in 2-3 days, so we thought with their 2 main helper/friends, that sister B would be ok til then.

So, we went on home.  Once home, I couldn’t stand the thought of them living like that, in those conditions.  Don’t get me wrong, I don’t want to force them to move, I just want their home clean and sanitary and safe, in short, habitable.  And that’s when it really hit the fan.

No More Mothering

Y’know, I was prepared to mother my kids right up til the end of their senior year, and to help them get started on their own life adventure.  But I guess that is not how it was meant to be.  My kids have already made it clear they don’t want mothering, or at least they don’t want me for their mother, anymore.

My daughter has depression, mood disorder NOS, anxiety, and ADD.  It was only at the beginning of this year that I realized she actually had ADD, and I got her on meds.  Then, it became clear she is depressed and I have always known she has anxiety.  So, I, being the dutiful and caring mom I like to think I am, took her to a psychiatrist and now she is on meds.  So, you would think she would maybe appreciate all that I do for her, all that I help her with and all of the things I allow her to do to give her as much freedom as possible.

But if you thought that, then you would be wrong.  Because apparently, she IS thankful for the meds, but she is NOT  thankful for me reminding her to take them 3x/day.  I tried to see if she could remember to take them on her own, but she can’t.  So, I started getting up in the morning when she is getting ready for school, so that I can remind her to take her AM meds before she leaves.  Well, on the 3rd day of that, when I came out to the living room, she was eating cereal and told me she was not going to take her meds for a while yet.  And I said nothing, but did go get her pill and a cup of water and sat it next to her so she wouldn’t forget.  As soon as I put it down, she slammed down her cereal, picked up her pill and took some water.  But she did it so abruptly, so violently, that she made herself gag before she swallowed the pill.  She managed to keep in, and finally got it down.  Then she says, “There!  Are you happy now?!” and instead of eating, getting ready, etc, she immediately throws herself out of the house to go to her SO a block over.  They go to school together.

If you think that is all she does, then you’d be wrong there too.  She came home from school, and I said, “Hi! How are you?  How was your day today?”  Now, if you’re like me, that is often how you greet someone when you haven’t seen them for most of the day.  And generally, you expect a response indicating how things went for them and how they are feeling now.  Silly me, who has only been asking that question to her for 13+ years, I asked her that and she glared at me, and absolutely refused to respond.  I said, “Hey, now!  This is not a highly personal, challenging or difficult question, and I deserve to be treated with respect when I speak to you, and I deserve it because I’m your mom and I love you, and you should know enough to treat me with respect.  And hey, what is the big deal anyway–I just want to know how you are today.  Why is this a problem?”  Well first she stalked into our shared room, and laid on her bed in the dark.  Then after a bit, I went in and asked her why it was such a big thing to answer me about how she is today.  I just wanted to know what the big deal was about telling me if it was a bad day, or a good day, cause I sure can’t see any reason that answering that is gonna hurt her, so why not just say something instead of making it such a big deal?”  She spat her words out at me when she replied, “Because you never understand, you never get it, you just get angry so I might as well not talk to you.”  

Ok, so, let me get this straight.  I am the parent she has had her whole life that saw problems and fixed them.  I knew as a child she had issues with sitting still, staying focused, reading and comprehension, handwriting.  I am the parent who sat with her for hours and worked on all these issues day in and day out.  I’m the one who saw she might have ADD and who got her tested, and got her meds.  I’m the parent who saw she had depression and anxiety, and took her to the psychiatrist (keep in mind that she WANTED me to do these things.  When I realized she might need this kind of help, I spoke with her about it, and she was so thankful and so desperate to get these helps).  So, she has been so happy that I have been able to see her needs and get her the help for them that she needs, and she has been improving overall.  So, ok, I’m the parent who has always worked with her and fixed her problems.  But now, I’M the person who ‘ doesn’t understand, doesn’t get it, and only gets angry at her for sharing?’  What?!  Where does this come from–it’s not even based in anything remotely resembling reality.  For fuck’s sake, why can’t I get my kid to tell me how her day was?  Am I really that out of line to ask that?

And that’s not even the end of it.  I am very lenient about letting her go places as long as I know where, and that she has her bus pass and her keys, just in case.  So, if she comes to me at 5pm and says she wants to go sleep over at so and so’s, I’m pretty cool with it.  Usually I even drive her there.  If she says she just wants so and so to come over and spend the night, I usually just say sure.  So, yesterday, her friend called and asked if my daughter could spend the nite there.  I said sure, even tho it was a 30min drive to her friend’s.  So, that was Saturday afternoon.  I expected to hear from her, whether she was staying an extra nite or not, one way or the other.  But Sunday passed until it was 9pm, and I finally called over there.  Her friend said, oh, ya, she and my daughter had just decided to make it one more night and her parents would bring my daughter home tomorrow.  Well, although I didn’t say it, or show it, I sure felt how my daughter just doesn’t care about me at all.  She didn’t even think she needed to call and ask if it was ok if she stayed there one more night.  She didn’t even effing bother to ASK ME!

I don’t know why she hates me so much when I’ve always been the one on her side, who has her back, who gets her whatever she needs.  I don’t know why she thinks I deserve this.  I don’t know what I could have done to deserve this.  But this makes me FURIOUS, to be treated this way by her.  I have tried to talk to her, but she just pretends I’m not there, that she can’t hear me.  I only see two choices.  Force my mothering on her, no matter how much she hates it and me.  Or, give her what she says she wants–me to go away.  Where I don’t care about her meds, I don’t care about her psychiatrist appointments, where I don’t fill her prescriptions, where I don’t care about anything about her anymore, and she can just do it all on her own.  And I’ll just treat her like some random person living in my house, like a border, that I don’t care what happens to them or what they do, because they mean nothing to me.  She can have it how she wants it, all on her own.

I keep alternating between forcing mothering and abdicating the role entirely.  And it’s not just my daughter, its my 17 y/o son too.  He has chosen a radically different, radically cult-like religion.  I don’t care if he chooses to be religious (I’m not) but the one he has chosen is so cultish, he is like an entirely different person than he was a year ago.  Now, he has given up belief in science for belief in this church’s dogma.  Now he eschews evolution, big bang, and the age of the earth and of humans.  There is no debating with him, no discussion of perspectives.  Now, with him, anything his church has taught on is the one and only truth.  He will not debate or argue positions with you.  Oh no, instead he beats at you and clubs you over and over with his perspective, never giving a basis or evidence.  He ignores your own evidence from having lived for 40+ years, or from science (because we all know that science is all made up anyway, and only the bible is true, word for word!)  Eventually you tell him you agree, because it is the only way to finally end the discussion, even if you don’t mean it, you say it, just to make him stop.  He refused to buy me some ice cream today (he’s using my car cause his is in the shop), because 1) its Sunday (and we all know you can’t do work on Sunday, and buying ice cream is just too effing much work).  So, he uses my car and lives in my house and eats my food and gets his room and laundry cleaned by me.  He even gets to use my car (when the one I bought him is broke down) but yet he can’t buy me some ice cream (I was paying even!)

So, between the two of them I just don’t know what to do.  Do I keep on mothering as though they are not hurtful, shameful, snotty jerks who don’t want me in their lives anymore, or, do I throw up my hands and just say, ‘fine, you win.  you don’t want to be mothered?  No, problem.  I’m done mothering the both of you. Start doing it all on your own if that’s what you want.

All of this is very hurtful to me.  I know teens are difficult.  But I’m not talking about the regular issues, like, arguing about curfew, or arguing about where they can go, or  when they get to use the car, or arguing about doing homework, or grades.  No, we are not arguing about the typical teenage angst and teenage stuff.  We are arguing about basic respect for another human (much less mother!), we are arguing that my son’s belief is the only valid one, that I am nothing.  We are arguing about basic decency to others, especially those who  have helped you.  My son has only 1.5 yrs left under my roof.  My daughter has 2.5.  I can’t keep going like this.  Something needs to change.