thejunipertree: (wobble)
I just got off the phone with the nursing home's office manager.

I explained to her the situation of my mother's "estate" and how there actually isn't one. I also told her about how when my mother was receiving the SSD benefits, the bulk of that money was going towards her bills and keeping a roof over our heads. Keeping the apartment for when we thought she was coming home. And that the rest of what little money she had went to funeral expenses.

She asked if I signed the admission packet, which I have no idea what that is. I met with so many different people when my mother went into Innova and saw so much paperwork, I don't even know who and what they all were. No one really took the time to explain to me the ins and outs of this whole mess and I wasn't in the frame of mind to start asking questions, I had too much else to worry about.

What I do know is that I don't have copies of anything from her admission. And I keep fairly meticulous records. In my little file box of Mom's papers, I don't have anything whatsoever for the nursing home. Nothing.

I'm worried, though, that I signed something saying I'm responsible for this. There was so much shit going on at the time and I was being pulled in twenty different directions at once. The only thing I can definitively say is that I held Power of Attorney and I was first to be contacted regarding anything.

After I explained to the office manager (not that shmuck, Jeffrey) that I'm being piled on by all of my mother's creditors (and hear this now, there's a fucking billion of them crawling out of the woodwork), she recommended that I at least consult with an estate attorney. See if they'll give me a free consultation, because I can't pay for shit right now or for the foreseeable near future.

I literally have zero money for this crap. I barely make my own bills and rent now without that extra bit coming in from my mom, especially with the rent having gone up and me having to pay a full half of it. It's a lot of fucking money and I don't make that much an hour. I'm working fifty hour work weeks now and contemplating taking on extra hours from the call center, but I can't drive myself into the ground with this.

The office manager said she's going to bring this to the administrator (the aforementioned Jeffrey) and see what he decides, then call me tomorrow. I'm trying to be optimistic about this, but I have a feeling I'm going to get fucked.
thejunipertree: (RAWR!)
So, I came home from work today to find two pieces of mail. I was in a bit of a hurry because I'm meant to leave for the Engineer's lodge by 6:30 and it's already 6:15. The animals haven't been fed and I need to fix my face into something resembling appropriate for social situations.

The Amazing Larry calls me as I'm opening the mail. In the middle of him talking, I blank out completely.


The paper in my hand is a letter from Innova, which is the nursing home my mother was in when she died.
The paper in my hand reads:

Dear Tara Maguire,

The purpose of this letter is to collect an outstanding balance due Innova Health & Rehab.

Over a long period of time you have been either contacted by phone or by mail requesting payment for services rendered to Patricia Bangle - balance due when a patient at our center.

We were then when such care was needed, now we ask that you make good on your portion of the health care costs.

If for some reason you do not agree with the chares sent to you, please feel free to give your reasons by calling Theresa Becker, officer manager.

If we do not hear from you or receive payment within ten days of receipt of this letter, we are left with no choice but to pursue this matter legally and turn the matter over to our attorneys for collection.

Please let us both avoid this step and pay the outstanding balance indicated. This will be the final letter you receive from us. If your payment crosses this letter in the mail, please disregeard and thank you for your payment.

Thank you for your immediate attention to this matter.


Jeffrey J. Satten
Innova Health & Rehab

Balance due?

Here's an idea, Mr. Jeffrey J. Satten, who really needs to have his assistant proof any outgoing mail for any and all grammatical fuckery: GO FUCK YOURSELF.

Not only am I not responsible for any of my mother's debt, but you could have at least waited longer then TEN FUCKING DAYS (the letter is dated 11/22/04) after her death to send me a collection notice. Not only should you take this debt and pound it up your ass with twenty pounds of hot sand, but you're GODDAMN LUCKY I don't sue you gibbering buffoons for contributing to my mother's death by negligence. You've never sent me one single notice for any monies owed. Not one piece of mail and not one single phone call.

You "were there when such care was needed"?

Where were you when my mother laid in a puddle of her own piss for over an hour because her aide wouldn't respond to the bell? Where were you when my mother needed her pain medication, but didn't get any because no one called it into the pharmacy and she had to wait three days for it? Where were you when my mother had to go to physical therapy, but no one came down to get her for her session? Where were you when my mother fell out of bed and injured herself, repeatedly? Where were you when one of the aides called my mother 'a pain in the ass'? Where were you when my mother's belongings disappeared? Where were you when my mother developed an infection in her salivary gland and I had to harass the nurse to give her more morphine to relieve the immense pain? Where were you when the air conditioning unit broke down in my mother's room and no one fixed it for almost a week? Where were you when I asked for my mother's bedding to be changed and I was told, "I just did it. She's gonna have to wait. I'm on break."? Where were you when my mother's nephrostomy bags needed to be emptied so badly that they overflowed and spilled everywhere? Where were you when my mother started passing blood clots from her ass? Where were you the numerous times I had to correct my phone number in the patient chart because it was off by one digit and the dumbass on shift at the time couldn't get their thumb out of their ass long enough to figure out where to contact me?


Any time any of those things occured, I was chasing nurses and aides down the hallway, giving them a ration of shit for not doing their jobs. I cleaned up my mother's shit, piss and vomit. I changed her goddamn diaper. I emptied out her nephrostomy bags. I got her back into bed the time she fell when I was actually there. I screamed at the nurses to give her some goddamn pain medication. I put fresh water in her oxygen tank. I called maintenance to fix the AC window unit. I brought her food and coached her to eat it when she refused the slop you serve to the residents. I changed her bed. I did her laundry. I held her hand when she was upset. I came up when the power went out for several hours during a storm and sat with her because she was scared. I got her in and out of her wheelchair, no matter how many times she played the "Up, no wait, down" game. Most of these things happened before she ever went on hospice.


Fuck you, Jeffrey S. Satten.
Fuck you and fuck this shit.
thejunipertree: (xbrokenwingsxicon)
An attempt was made this evening to have a discussion with my mother regarding her living directive. Not much progress was made, as she was fairly out of it. Either from the drugs or the disease, I can't say. But, she frequently wasn't there when she opened her eyes and I only got vague answers when she was. She didn't smile when I walked through the door and she dozed off and on the entire time I was there, without moving.

At first, she wanted me to direct that CPR is only to be administered under certain circumstances. But, I explained to her that you just can't know if someone is going to need artificial respiration after they've gone into cardiac arrest. She didn't know what to do with that information, so I asked her if she wanted me to make the decision. She nodded and I spent the next fifteen minutes debating to myself which road to take.

DNR is definitely the kindest option.
It's also the one I choose.

At this point, it would be foolish to believe that she's going to magically pull through this. That tomorrow, when I come to the nursing home, she is going to be miraculously free of the cancer that's currently eating her from the inside out and I'd take her home to the cats and rats and ferrets and she could again sleep in the bedroom I'd staged a mild takeover in. That she would get better, strong enough to return to her work that she misses so much. That she'd be able to sit up and read the books I lend her. That we'd go to zoo and the ocean and the art museum. That she'd live to see the dedication page I promised her so many years ago.

I'd held onto that faint hope for far too long. Even when my brain was saying, There is no chance of recovery, my heart was screaming that I couldn't possibly give up hope. That to give up hope was throwing in the towel and admitting defeat. And I never admit defeat.

My heart is a naive twit, by the way. It also still believes in fairies, sea monsters, and the inherent goodness in all mankind.
And hope is a fragile-limbed opium addict that blows false pipe dreams in my face.

The hospice nurse called me back about an hour after her previous phone call. She wanted me to know that when I stated there was no hope left and she agreed with me, that she didn't want me to think her callous. That the hope I had spoken of had changed into the hope for no more pain. The hope for my mother's recovery had become the hope for the end to her misery.

I agreed with her as my heart beat its paper wings frantically, crying that this was not the end. This was not the end. This was not the end.

But, it is.
And seeing my mother this evening confirmed that.

I called my brothers and patiently explained everything going on. Answered their questions over and over in a mechanical voice. I gripped the steering wheel of the Eldorado with cold, stiff fingers and pushed back the shrieking urge.

I half-way resent those handful of weeks that I had a bit of my mother back. I almost hate the fact that seeing her spring back from the edge of death lulled me into a fake sense of security. But at the same time, I'm glad for those small moments.

And even now, despite everything I've said and with tears on my face and endless cigarettes, there's one thing running through my head:

Maybe tomorrow will be better.

I have my doubts and they're strong, don't mistake me.
But, there's still that maybe.
Always that goddamn maybe.
thejunipertree: (Default)
Well, it's all moved and installed on top of the dresser. In my sudden burst of manic energy, it didn't take me long at all.

Now I'm left feeling vaguely uneasy. It's not my space to be doing this in, it's still her bedroom. But I think this will do me a bit of good and in the unlikely event that she does come home, it can all be dismantled again.

Over the past few months, with me living out of her room and my altar remaining in my closet of a bedroom (or bedroom of a closet), I've been ungrounded. I went into my room very rarely; at first, it was just to do my makeup. But in an effort to make my morning routine more efficient, I moved all my makeup onto her vanity table. After that was done, the only time I went in there was to throw something on my bed (which is now covered in a small mountain of somethings) or to get a book I wanted.

It's not my full altar; I've removed Papa Legba, Erzulie Freda, Damballah, Erzulie Dantor and all of their accoutrements (my apologies to all, no offense intended, I just need to focus on other things at the moment). And the only beads, from the hoarde that Sabrina sent me so long ago from her Mardi Gras haul, are the purple ones. I may arrange the other lwa on my old altar in some semblence of order, just because it would make me feel better, but I'm not up to that tonight. Maybe tomorrow.

Looking at the Gede altar I just erected and the amount of dresser-top space it takes up, I'm completely amazed that I fit it and all of the others in the tiny space it used to be in. Granted, I bought some new things today but not very many. A small vase, four roses (two purple, two black), a wee black velvet armchair (which must be seen to be believed), and a skull (which sits in the armchair).


Today was a difficult visit with my mother. She seemed very alert, animated, more like her usual self. We would have small bits of conversation that could have been had two months ago, but then she would dissolve into nonsensical rambling. I hurt my arm a little while trying to pull her into a better position and she reacted to my small involuntary pain-noise, which I can't even remember the last time something like that happened.

She also argued with me about taking her home, something which has happened before. I've explained to her, time and patient time again, that I can't possibly take care of her at the apartment. That even if we had a twenty-four hour nurse with us, it still couldn't be done. She doesn't understand, or refuses to, and thinks that she can take care of herself.

Every reason I give for the impossibility of her coming home sounds so lame coming out of my mouth and every time I speak of it, I feel like a terrible and selfish daughter. But everyone in the family agrees with me, the hospital agrees with me, the nursing home agrees with me, and the hospice agrees with me. I would have thought that hospice wouldn't, since they can do their job no matter where the patient is, but the one nurse I've developed a rapport with told me that it's better for Mom to be somewhere where people can tend to her around the clock. They only give twenty-four hour nursing under dire or unusual circumstances, this not qualifying as either (no matter how it feels to me).

I momentarily feel better whenever they tell me I'm doing the right thing (which they assure me of every time we speak), but the second I see her in her hospital bed, all those reassurances fly right out the window. I want her to be able to come home, even if it is to die, but I cannot possibly handle her being here.

My hands are tied and it sucks.
thejunipertree: (fly away little starling)
I'm afraid and that is probably one of the worst feelings in the world. It's time for me to leave work, time to head up to the nursing home. But I can't bring myself to actually get up and leave my office.

I hate this.

Saturday was so horrible. I spent the better part of an hour and a half being berated by my mother, or rather the illness which has taken over my mother. The things she said to me, half the time she thought I was her mother. I can't repeat them. I've told very few people what was actually said. Every time I recount that day to someone, another little ice-edged knife wiggles its way into my heart.

It hurt then, it still hurts now. What made it even worse was the fact that The Engineer was with me and witnessed it all. I was embarassed. Shamed. For myself. For my mother. For my family. No one else should have to see this mess. Hell, WE shouldn't even have to see it.

I can handle almost anything verbal thrown at me. One of my co-workers today said to me, "At least it's not religion." But, you know, I could deal with that. I could deal just fine. I could very easily handle the bible-thumping end-of-days fearspeech. Similar things have been said to me my entire life.

Shit, I had my father's aunt lay hands on me in the middle of Atlanta International airport for a rather loud prayer session. That was just two years ago. Incredibly uncomfortable, but I dealt with it (mostly by hollering at my father for being so doubled over with laughter at my predicament that he couldn't put a stop to her doing it).

But having things said to me, things that were already weighing on my newly fragile conscience?

That I can't quite cope with.

I know it's not actually her saying them. I know it's the cancer. I know she's incoherant. I know she's on heavy doses of morphine. But it doesn't make this any less painful.

I have a guilt complex that rivals an entire brigade of grandmothers. Catholic grandmothers. Catholic Jewish grandmothers. Thousands of them. They don't hold a candle to me. It's like my super power. The ability to feel ultimately responsible for everything in the entire world. That's me.

And the phone calls I have to make, the phone calls I receive. I consoled my mother's grade school friend over the line last night. She asked me how things were and I, in my bluntness, did not candy coat them. I was never much for sugaring information up to begin with, but this situation has made me even less eager to do so. I wasn't unkind, though. I just told her the truth of what's been going on.

She began to cry.

I knew the last time I visited that I would never see her again.
thejunipertree: (Default)
I have never been so exhausted in my entire life.

Just spent just about the entire day at the nursing home. I received a phone call at about half past two in the afternoon from the head nurse, telling me to get my ass there immediately. I then tweaked and couldn't think straight enough to even speak in full sentences. My boss decided to have someone else drive me, much to my relief.

I got there and was told that they (the medical powers that be) don't think my mother is going to last past Monday. The official words were, "It could happen at any time and I would be surprised if she made it to Monday."

Many phone calls were made, siblings were summoned. Plans were also put into effect to have her transferred to the inpatient hospice facility that I had prattled about a few days ago. The one that only accepts people who have ten days or less to live. My mother's doctor put her okay on it.

In the event that she can't be in that facility, I'm still moving her somewhere. The new room she was put in at the nursing home sucks, to be quite honest. It's not private. It's small as all fucking hell. There's no phone. And it feels like a goddamn African rainforest in there, it's so hot.

It was ordered that I not go into work tomorrow. Take it from the one who was at work when she received the call her mother died. Stay home.

I don't know what's happening.
All I know that this is what Hell must feel like.
thejunipertree: (xbrokenwingsxicon)
It's beginning to appear as if there's only going to be a handful of days left.

I can't quite describe the feeling which wells up in my throat when I'm sitting on the edge of her bed while she sleeps and counting the seconds which plod by inbetween breaths. There were several times this weekend that I thought a specific breath taken would be the last.

She opens her eyes and looks at me, but it's not my mother there any longer. I don't know where she is anymore, but that's not her in there. Speech only comes when I coax it out of her and sometimes, not even then. I fiddle around with the bed, I straighten her blankets and sheets, I empty her bags and clean off her bedside table.

And then I just sit next to her, so helpless.

It's so strange how many times the words, "It just happened so fast" have come out of my mouth in the past four days. Because really, when you think about it, it wasn't quick at all. It's been drawn out over the past two and a half years. Only before, she was lucid and self mobile. She was able to sit up on her own and maybe walk sometimes. She laughed and spoke to me about the goings on of our lives. She ate (sometimes) and baby-talked my rats and played with the ferrets. We squabbled with each other and cried together. And she teased my friends whenever they came by the apartment. And went for short car rides with me.

Now she just lays there. Her eyes don't light up anymore when I come into the room. They haven't done that for two weeks and I can't even remember the last time she smiled at me.

My brother and I had another long conversation last night, sitting in her bedroom at the apartment. We sniffled a lot and hid our tears from one another as we discussed what we were going to do, what was going to happen to our family. He asked me how I was feeling and I told him: When you're little, your parents are the world. You go to them for everything. When you're hurt, you go to them. When you're sick, you go to them. When you need an answer or advice, you go to them. When you're little, your parents are God. Even if they're not very good parents. I went to Mom with just about every problem I've ever had, even if I knew she didn't know what to do. It's just what I did. And I didn't always take her advice, I actually took her advice very rarely. But now, I don't have that anymore and I don't know what to do. He agreed with me and we hid our tears and sniffled some more.

When it happens, she's to be cremated. It was stated to me, on more then one occasion, that she didn't want to be put into the ground to rot. And she didn't want to be embalmed. And that she wanted bagpipes at her funeral, because they always made her cry. But, in a good way.

When it happens, I'm going to take half of the ashes. Some of them I'm going to take to her garden at my father's house and scatter them there because she used to put so much care and time into that sprawling mess. Some of them I'm going to have stoppered in a pendant because she and I always liked that morbid sort of Victorian fashion. And some of them, I'm going to take to the zoo and stealthily release them at the outdoor tiger enclosure because she so loved the big cats.

When it happens, the fine line keeping my heart and brain together is going to snap.
thejunipertree: (xbrokenwingsxicon)
Why yes, Ms. Maguire. Your mother is undoubtedly eligible for Medicaid. However, once she starts to receive it, we're going to want that Social Security Disability benefit she receives every month.

Yes, all of it.

Well. Except for thirty five dollars. You can keep that for 'personal expenses'.

I only wish I was joking.

Dear God,
hope you got the letter
and I pray you can make
it better down here.
thejunipertree: (RAWR!)
Some days, I swear to God and all that is holy, I feel like I'm going to wind up on a rooftop. Dressed in a pink ballgown. Holding a semi-automatic rifle.

Today happens to be one of those days.
And if I knew where the office was for Amerihealth, I'd go a-visiting. Sonsofbitches.

Why on earth does one approve a feeding tube surgery, but only give approval for TEN DAYS of use for said feeding tube?

Also of shit, receiving a phone call this morning at half past eight whose sole purpose is to inform me that TODAY is the last day Amerihealth will cover my mother being in the nursing facility.

Brrrt. Wha-what?!

Now I've managed to spend most of my day making phone calls and attempting to wrangle some form of continual nursing/housing for her. In between bouts of furious sobbing at my desk.

I just don't know what to do any more. She can't come home. Not in the condition she is in (remember the other day when I thought things were getting a little better, I thought wrong, silly fucking optimistic me). We don't have the room in our apartment for any kind of aparatus. She's unable to take care of even the most basic of her own needs. I am unable to be there twenty four hours a day for her. Hell, I'm unable to be there for her even 12 hours a day. (Not only that, but I would most likely attempt matricide if it was solely my responsibility to care for her, things are bad enough as it is and it's not even completely on me.)

She needs to be in some sort of twenty four hour a day nursing facility. A nurse friend of mine recommended this inpatient hospice place, which I swiftly called, but I was informed that they only accept people who are diagnosed with TEN DAYS OR LESS to live.

I'm not even going to comment on that.

Then I spoke to the nursing home, who told me that for her to stay there, she needs to apply for (and receive) Medicaid. That swept me into another round of phone calls and message leaving, NONE OF WHOM called me back. Pigfuckers.

Say it with me: PIGFUCKERS!

I don't know what to do and precious few people understand. A long time ago, I joined a cancer patient caregivers support e-list. Posted an introductory message and nothing else. I can't post to it. Shit, I can barely even read it half the time. It's far too depressing. And as I am already heartily depressed 95% of my waking day, I don't need any more.

The only things which keep me sane these days are my friends and The Engineer. And maybe the ferrets. They're like cheap therapy, the weasels are.

This can't keep going on. It just can't.
thejunipertree: (xbrokenwingsxicon)
So, tomorrow morning I have to skip work for a while and head to the doctor's office to discuss possible feeding tube options for my mother. She's not ingesting nearly enough food to sustain her, let alone enough to get her system pumping again.

The head nurse of the nursing home called me today and we had a small discussion regarding this. Slowly but surely, I am beginning to think that this is never going to end. Never going to get better. And my mother is never going to see the inside of this apartment ever again. I hate thinking like that. Words give power. And it's one of the reasons why I almost never vocalize anything remotely like that. But...I'm beginning to think it's true.

I don't want to say that I'm losing hope, but I always hope that things will get better and she'll pull through. But, shit. Let's face facts, shall we? I'm still hoping for that pony I asked for from God when I was six. Never got that, either.

I visit her practially every day and every day, it's like another piece of her has left. She's so doped up on Ativan right now, that it's difficult to hold a conversation and when my visiting time is up, she gets upset and asks me to stay with her. I don't know how much she's understanding right now. She knows that the situation is dire, but I'm unsure if she truly comprehends how bad it really is.

And it's like we're met with obstacles at every single turn.

The vitamin therapy that had been recommended for her really seemed to help, but the goddamn insurance company refuses to approve ambulance transportation to get her to it. The physical therapy looked like it was getting somewhere, but then she got the blood clot in her leg and is usually unable to do the exercises. She was starting to eat okay, but then that came crashing down as well.

My father keeps saying to me, "Jesus Christ, what could possibly happen next?" And I shush him quickly, because I don't wish to tempt Fate.

She's so fucking young to be going through this. She's not even sixty.

Where the fuck has my mother gone?
I go to see her, but she's not there anymore.
Not really.

I'll always remember her as this golden, laughing demi-goddess figure. With a glass of wine in one long fingered hand, a cigarette in the other, and men at her feet. I remember her dancing in a red velvet dress. I remember her give-them-hell grin and her green eyes. I remember our trips to the ocean and the zoo, where we would hold hands and walk under my parasol. I remember her belly dancing, coming home to our tiny apartment full of incense and music and the clinking of her zills as she tried to teach me the proper hand movements. I still have the zills, somewhere.

I know there were bad times, everyone has them. Everyone. But, right now I'm only remembering the good stuff. The past is in the past and it deserves to stay there. Get the fuck over it and move on. It serves no purpose now.

My brothers and I talk, we make contingency plans. We discuss the possibilities of the future. We plan what's going to happen. But, what's going to really happen?

And what's going to happen to me?

When she's gone, who's going to braid my hair because I can't reach and fuck it up every time?
What am I going to do the next time I try to make her spaghetti sauce and she's not there to tell me how to do it, because I forgot again?
Who's going to tell me what various ailments are and the home remedies to fix them?
Who's going to call me Tara-Love, when they're pissed off at something stupid I've done?
How am I going to know what to do with the goddamn Christmas tree, come December, if she's not here?
She taught me how to look for Cape May diamonds. Who am I going to show them to, when I've come home with fistfuls of them?

What the fuck am I supposed to do?

All of this pain and she's not even gone.

I was doing okay for most of the night. I sat upstairs and helped the Engineer file and sandpaper his new resin casts for the horror convention at the end of August. I smiled at him, I laughed, I talked shit about stupid people I dealt with today. I felt okay. Not as stressed as I have been lately. He makes things better for me.

Then I came downstairs, sat at the computer, and it all hit me, like a sledgehammer. Like a speeding truck.



And despite all of this, despite the tears and scariness and selfishness, I'm still harbouring that tiny spark that everything is going to be all right. Stupidly, blindly clasping that brief flame to my heart and refusing to let go. The feeding tube will bring her around. She'll be able to do the physical therapy. She'll get released from the home and be able to get chemotherapy. The tumours will vanish. She'll be in the clear.

Everything will go back to normal.
I'll get my life back.
I'll get my mother back.
I won't be walking around every day, waiting for the worst phone call of my life.

People beat this goddamn disease every fucking day. Why can't we?
My family needs a miracle.

Just this once.
Just this fucking once, please let something good happen to this fucked up, unlucky family of mine.

Just this one time.
thejunipertree: (xbrokenwingsxicon)
If any of you actually wonder why I've gotten so sporadic with my journal entry writing, it's mostly because I'm finding it rather difficult to keep myself together long enough to write something that won't depress the fuck out of everyone who reads it.

On more than one occasion, I've proclaimed the need to not constantly talk about the situation I am currently battling, re: my mother's medical condition. However, any of you who have been through similar situations know how pervasive this sort of thing can truly be.

Despite how much I fight it and attempt to be "normal", her cancer is encompassing my life right now. I can go minutes, even hours, without thinking of it, but something always brings me back to reality. And I hate that.

I don't want to be the person who's always lamenting their lot in life. I don't want to be the conversation joy-kill. I don't want to be the girl who busts out with some sob story of enormous proportions in the middle of everyone else's good time.

And I try so hard not to do that. Which is precisely the reason why so many of you don't hear from me for such long stretches of time. I can't be the hand-staple-forehead girl.

But, things are so fucking bad right now. I can barely stand it. And it's all out of my control. My hands are tied. Completely.

The only thing I can do is watch and wait.
thejunipertree: (Default)
I should be cooking or shampooing the rugs right now, but I can't be bothered to get up from the computer. Since my probationary period at work has been over for about a month now, I took a paid day off to wait for the maintenance man (Mitch the Viking) to come look at the Engineer's bathroom ceiling, which has suddenly decided to begin a career in raining. It's been requested of me to bring in pasta and peas to my mother at the nursing home and our apartment rugs desperately need to be cleaned, but I'm enjoying myself far too much right now. It's nice to relax, to be still and silent. I'm not used to this state of being anymore.

I made a very adult decision last night, which was to buy a water bong. On Friday, I'll be venturing to a head shop with the Wee Ninja's Unibomber brother to pick one out. In the name of relaxation, you see. It's all about relaxing. Over and over again I've been hearing the same words from everyone.

Take care of yourself.
You need to rest.
You're running yourself ragged.
You're going to make yourself sick.
Take care of Tara first.

That last statement? When that was said to me, my reply was, "Then who's going to take care of everyone else?" This mindthought seems to be an issue of mine and I realized it the moment the words spilled out of my mouth. Taking care of people is just something I do. It's instinctive. And I've been doing it my entire life.

To an extent, I know this has to stop. I can't save the world, no matter how hard I try. But I can't, in good conscience, sit there and let someone I care about suffer. I've done it, I've made myself do it, I've been forced to do it. And when it comes to a situation like the one I am in, I can't let it go past me. There's no one else to deal with these things, or no one else willing to. They just have to be done, so I'm the one who does them time after time.

Last night, I had a brief conversation with the Engineer and the Unibomber V 2.0 about cutting ties with people who do nothing but suck you into their little whirlpools of despair and about how much I hate and despise cutting ties, how I try to avoid it as much as possible. But, there comes a time when you just have to let go. I recently watched one of my best friends struggle with the same problem. She and her husband had a very close friend (who I was also friends with, just not as closely) who blithely went through life, fucking shit up left and right. They have him one final chance to clean himself up by giving him a place to live, food to eat, a job. And he pissed in their faces. They cut him loose. It hurt, but they did it. Now he's even worse.

I don't know if I would have been able to handle it, if I had been in their shoes. It would have torn me apart, my heart is far too soft.

To be quite honest, I don't really know where I'm going with this. I just had to write it all out.
thejunipertree: (Default)
I finally was able to speak to the oncologist today, after four days of playing phone tag.

And it comes down to this:

He doesn't recommend my mom go through chemo. She's far too weak and going through too many things, the chemo would be too much on her system.

The suggestion is to have her put on hospice care, as soon as she gets out of the hospital. And that maybe with their care, she can be built back up enough in time for chemo. But, he truly believes that all of this (meaning everything going on right now) is just prolonging her pain.


I took this news rather well, all things considered. Then, I hung up the phone and commenced losing my shit in my office.

No one else knows yet, either.
And, as always, it is up to me to be the messenger.

I don't know what to do. I don't know when I should tell her, or even if it should be ME who tells her. I don't know how to tell anybody else, like my brother. I also don't know if telling my mother about this would actually make her WORSE. Like, hearing this news would make her finally give up? I don't know.

There is a small chance that her going on hospice would build her up enough for chemo, after she recovers from this hospital stay. But, from the way everything is seeming right now (and granted, I haven't been to hospital yet today), it just appears that it's all too much for her system to take. And even if hospice does do what we want it to do for her, we don't actually have all that much time to accomplish it in.

It's all so fucked up.

And thinking about all of this right now, as I'm writing this entry, I've realized that I would much rather have someone I love die very quickly and suddenly, then have to go through this drawn out ordeal. Every day, watching her go further and further away.

I remember a scene in some television program, maybe Six Feet Under, where a woman's father had died of cancer. And she was commenting to another character that "watching someone die of cancer is like watching the ocean wash them away. Every day the waves come up and take away another little bit of them."

It's true. So fucking true.

I have to go now. I can't type anymore.
thejunipertree: (xbrokenwingsxicon)
This is more for my benefit, then anything. I need to have all of this written out so I can organize my thoughts.


I am just so fucking tired, it's not even funny.

Every spare moment I've had this week has been dedicated to ferreting out information to help my mother's situation. What is the situation, you ask? Well, let me lay it out for you.

My mother was diagnosed with Stage IV colon cancer in June 2002. She went on short term disability for six months, when the disability ran out, she was forced to go back to work. During that six months, she went through twenty rounds of intensive chemotherapy.

Some time after she returned to work, it was decided that she should undergo radiation therapy. So, she did thirty days of radiation, during which she also received a continuous low level chemo feed.

Around late November/early December of 2003, her boss decided that it was time to start laying people off. Being the benevolent soul he is (*snort*), he gave her the option of either accepting the lay-off or getting her doctor to sign her out on short term disability again. Since she needed health insurance coverage, she opted for the short term disability route.

Now it's the beginning of May and her short term disability is about to run out again (remember, it's only for six months). And we're faced with some very difficult situations to muddle through.

1. Once she finishes this spate of disability, she would be expected to go back to work. However, she's in no shape to do so. Therefore, she will lose her health insurance because she won't technically be employed with that company any longer. So, problem #1 is no health insurance. No money to pay for her chemo treatments and numerous prescriptions.

2. She's applied for Social Security disability (SSD), which is only given to people who fall under a very specific criteria. What this criteria actually is, I haven't the foggiest notion. However, you do have to be expected to be disabled for over one year or have your disability end in death. It is notoriously difficult to be accepted for SSD. Many people are denied for ridiculous reasons, though most of them hire lawyers for an appeal. Oh, and even if you are accepted for SSD, it can take up to six months to get it. Problem #2 is waiting for SSD/not getting SSD at all. No money to pay her rent and bills (I can cover mine and my brother can cover his, but we just barely squeak by).

3. She has an extreme hernia that causes her to have enormous amounts of pain, which affects whether or not she eats. Not eating has caused her weight to drop to 108 pounds. You heard me right. One hundred and eight. When all of this started in June 2002, she weighed around 176. The hernia needs to be surgically fixed. But, because of how bad it actually is (it's huge), her recovery time would be lengthened. Not to mention that she's in no condition to withstand a very intensive surgery right now because of her weight and general weakness. Problem #3, the hernia.

4. As I wrote in my journal the other day, the oncologist told us that because of the new spots in her liver, lungs, and bladder, if she does not go through chemotherapy again (and posthaste), she has months to live. Months. As in, less than a year. However, she's in no condition to go through chemotherapy. Her weight, may I remind you again, is 108 pounds. To go through chemo she has to get stronger and gain some weight. Problem #4, chemo.

4a. (This is where it gets a bit tricky.) To go through chemo, my mom has to gain weight. But because of the hernia, she has a lot of difficulty eating. To have the hernia fixed, she has to gain weight. Now, say she actually does gain enough weight and is feeling a bit stronger. Does she get the hernia surgery first, so she's not in pain, before she goes through chemo? Or does she go through the chemo first, build herself back up from that, and then get the hernia fixed? It's half a dozen of one, six of the other. If she goes for the hernia surgery first, she runs the risk of actually becoming sicker due to the pressing need for chemo within the next few months. But, if she does chemo first, she's very likely to not bounce back from it because of being weakened from the chemo and weakened from the hernia. Problem #5, chemo vs. hernia surgery.

5. Say she does actually get accepted for SSD, she won't have health insurance for two years. She needs (is there another word that means REALLY FUCKING NEEDS, like beyond needs?) coverage to handle any of the health issues, be they chemo or hernia surgery. Not to mention the slew of medication she has to take, which is rather expensive when you don't have a prescription plan. Medicaid is an option, however one must (again) meet a very narrow criteria to be accepted. And I have a feeling that they are not going to like the fact that my brother and I both work. And that they'll decide we make TOO MUCH money for her to receive Medicaid. We can't lie to Medicaid and say that one of doesn't live here, because our mother has to show cancelled rent checks to welfare and SSD and they're going to want to know why her portion of the rent only equals a third. Problem #6, Medicaid.


Needless to say, the past week has been hellish. I have used every keyword combination humanly possible in Google to get information on assistance with our problems. I've come across some very valuable resources (like the Patients Advocate Organization and Cancer Care, Inc.), but there doesn't seem to be any kind of program in our state, much less this country, that serves as a safety net for people who are suffering from cancer. I've read innumerable messages on so many message boards from people who are in the exact same situation, that I haven't even bothered to post my own query because there just doesn't seem to be any kind of definitive answer.

The other day, I had the idea that I could solicit some sort of fund raising activity/charity from various groups in my area. I've already started the ball rolling with that by approaching Miss Rowan's husband, Ellis, who is an officer in a Masonic lodge and The Engineer, who is a fledgling mason in a lodge closer to us. Masons give millions of dollars in charity every year. They told me that each lodge master can give a hundred dollars without even approaching the rest of the lodge first. And if they ask the other lodge members, they can give up to three hundred. After that, they can approach the district lodge that governs each county. They could even possibly hold a fundraiser for her.

I'm going to draft a letter and send it out to every single fraternal organization in my area (and the surrounding areas). All of them. Explaining the situation and desperately hope that someone decides to help. If I could, at the very least, get her portion of the rent paid for a year, that would be fabulous ($2976.00, I calculated it). If I could manage to also have her bankruptcy payment paid for a whole year, that would be even better (that brings the total to just under five grand). I'm also going to bring it up to the MWC (the pagan discussion group I belong to), to see if they can spread the word to any of their contacts and possibly wrangle help from any of the pagan organizations around here. Though I'm not banking on that, because getting pagans to do anything all at the same time is a lot like herding ferrets (most people say cats, but I strongly believe that those people, unlike myself, have never tried to herd a business of ferrets).

If anyone reading this has any other ideas, or any experience in dealing with matters such as this (any of it, whether it be SSD or Medicaid or welfare or health insurance or charity or fundraising), please contact me through email (if you have it) or my LJ. I would be infinitely grateful and welcome any suggestions.
thejunipertree: (Default)
I brought up some topics with my mother this afternoon that had never been pushed into light until now.

Specifically, the very real possibility that she could die in the near future and what will happen to my brother and I in the course of that event. It stemmed out of a visit to the oncologist today, where I finally straight out asked the doctor for a prognosis.

Without treatment, a handful of months.
With treatment, possibly years.

Nice broad range, right?

I handled things rather well, all things considered. I didn't get weepy, for one thing. And we discussed things for a brief period of time. I think I surprised the doctor with busting out with that particular question, but we need to be aware of these kinds of things. Now is the time to prepare for what may come sooner then we'd like.

I know she didn't take it very well, hearing it. But, I think it may be pushing her into accepting this more. Up until now, it doesn't appear to have sunk in very far. She knows she's sick, but she continually blames her various ailments on the different medications the doctors prescribe her. And while I'm sure that a slew of antibiotics isn't exactly making her want to jump up and dance a foxtrot (if she were so inclined), I also don't think that it is the sole cause of every woe. The doctor agrees with me on this, as he damn well should.

So, driving home from the appointment, I decided to just jump full into the water and bring up the subject of what's going to happen to my brother and I when she goes. We're certainly going to be unable to afford this apartment without her contributing portion. And it needs to be put into writing who gets what, just so neither of us get accused by any locusts descending on the funeral party that we're keeping things that should rightfully be theirs.

I managed to convince her that despite the fact she doesn't have any big money holdings, she does indeed need to write a will. Even if it's just scribbled on a piece of paper and notarized by Rowan. There needs to be one. End of story. I will absolutely NOT deal with a bunch of squabbling relatives.

I also managed to convince her that she, my brother, and I need to sit down and discuss what is going on. In great detail. We also need to discuss the state of our affairs, meaning the money situation and the bills she has in her name. Everything needs to be rounded up and organized into something resembling order. Even if she lives for another five to ten years, this still needs to be done NOW. I do not wish to be blindsided by any of this at any point. And since I'm the unlucky offspring who was chosen to handle all of her business, it will indeed be me who gets smacked in the face with the bill collector stick.

She asked me if I wanted my older sibling at this meeting and after a few minutes thought, I told her he is welcome to come if she wishes it and if he would like to be involved. She also started to give me a little speech about how she's telling me this now and I can tell the other two whenever I want, but when she does die, her brother and his family are not welcome at the funeral or any other service involved. I cut her off mid-way through the first couple words and let her know that I had made this decision weeks ago. Those people have made it abundantly clear that they do not wish to be part of this family anymore and I am more then happy to oblige them. They can find out about her death through the goddamn obituaries, for all I care. If I even decide to post an obituary. I still haven't decided about that. But, if they do find out and they do show up, they will be asked to leave. And not by me. Because if I do it, there's going to be bloodshed.

At one point riding home, she says: "I'm not ready for this."

"Ready for what, Mom?"

"I'm not ready to die."

And for the first time in months, I heard a bit of her old strength creep back into her voice. It was only there for that moment, but it made me smile and gave me a small spark of hope all the same.

I'm going to clutch that little spark to me in the months to come.
It's going to be very badly needed, because she's not the only one who's not ready for this.
thejunipertree: (Default)
Some days are harder to deal with then others, re: cancer. Days and minutes and hours and seconds fly by without nary a passing thought. Until something happens and it all shoots up past my face, completely unable to be avoided. Like today.

At least my boss seems to know that when I don't turn around to speak to her and there's nothing in front of me, that I am most likely crying and should probably be left alone for a bit.

Last night, I made a statement to Stephanie that roughly said I know I am in the exact place that I should be right now. I have the friends I should have, the job I should have, the boyfriend I should have. Everything is running along the currents that it should be, at this moment. I'm not a big believer in karma or fate or anything like that. But I know, deep down inside, that everything going on around me is supposed to be going on. All the things I've done in the past were what I was supposed to be doing and while I think I could have handled some of them a bit better, they took me to where I needed to be.

She agreed with me.

I realize that my mother's cancer is part of all of this, the great and grand scheme of things. And I reckon that I'm supposed to be learning some kind of enormous life lesson from it all. But, the entire situation makes me want to kick over trashcans and act like a petulant three year old who isn't getting their way.

At this point, if I had to choose between gaining some kind of incredible wisdom about life or having my mother back the way she used to be before all of this, the decision would be exceedingly simple to make.

There are very few of you in my life right now who knew her before she became sick. That woman was a goddamn force of nature in her heyday.

I want that back.

And knowing how futile it is to wish for something like that, is what keeps me up at night and strikes me quiet sometimes, when I'm out with my friends.

It's just not fucking fair.
thejunipertree: (xbrokenwingsxicon)
Sitting last night, on the floor by my broken down computer desk. Sifting through the pile of debris that had fallen when I opened up the lopsided storage door. Taking apart the computer, cleaning all the cords and untangling them, putting everything back together. The low murmur of The Engineer and Miss Robin as they attempted to puzzle the pieces of my third-generation-new desk that came with numerous screws and no instructions.

On the carpet, face down, was a photograph. I picked it up and studied its glossy face.

My mother and I, during my bridal shower, a millions years ago. She, smiling into the camera. Me, looking hot and uncomfortable and slightly put out. I remember that day clearly. I hate being the center of attention and a bridal shower is the ultimate in one being in the limelight.

I looked at her face, as I sat there crosslegged on the carpet. She's grinning, with her gold hair piled on top of her head. Dangly earrings, long red nails, and a drink of something or other alcoholic in her hand. My arm is around her shoulders. She's wearing a royal blue shirt, stretched tight across her chest.

She looks so happy. She looks so healthy.

I began to cry. Quietly, so no one notices what I'm doing. I'm very good at hiding my tears. I can cry in a room full of people with no one the wiser. It hurt to look at that photo, it still hurts. I'm looking at it right now, propped up on my keyboard as I type.

Wiping my eyes, I called to the Engineer. Look at this. I say.

Who is that? he says, which sends another bolt of pain through my body. He sees her face almost as much as he sees my own.

That's my mother.

no scanner, so I used my webcam to take this.

I was planning on writing more, but I can't.
It hurts too much.


Feb. 11th, 2004 12:19 am
thejunipertree: (Default)
It's not very encouraging when one's week is already going horrendously and it's only Tuesday. )


thejunipertree: (Default)

January 2011

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