Bureaucratic Bullshit

I've been through so much Bureaucratic bullshit since my mother passed away that I think it's damn near on the verge of breaking me. Nothing can be done right the first time, you have to do stuff three or four times to get it done right. Let me just spill a little of the crap I've been going through.

First, after my mom passed, her bank locked all of her accounts. I know they normally do this after a person passes when they are informed...but they locked her accounts (one of my mothers, and one for my niece and one for my nephew) and no one in my family had informed them, so I don't know if the bank sat there and read her obit and decided "hey, that's one of our customers, lock 'er down" or what. I just know that neither me nor my sister informed the bank of her passing exactly for that reason. And how did we find out the account was locked? My sister was trying to buy groceries for her and the kids and the bankcard kept being denied. Since my mother was the guardian of my niece and nephew, and they locked down the kids disability accounts too, that left absolutely no funds accessible for the children's care. I went to the bank, informed them I needed those funds for the kids immediate support, they said they needed more paperwork than I had...sooooo I went to get the paperwork needed, and the bank conveniently drained the kids accounts for my mothers debts while I was waiting through yet another bureaucratic damn process. So upon arriving with proper paperwork to close the accounts, I was informed there was only 3 cents left in the account for my niece. Bastards knew my mother just passed, but did they have any concern whatsoever about the financial difficulty they just caused for my family? Nope. Should be against the law.

So, after going through the bureaucratic process of becoming representative payee for my niece and nephew, I go to yet another bank to open them new accounts, damn sure wasn't going to keep putting money into a bank that purposely left a mourning family with 3 fucking cents in their collective accounts. So I tell this new bank exactly how the accounts are supposed to be titled. First time, they didn't do it right...I noticed on the paperwork it only had me listed on the accounts, and not me as rep payee FOR my niece and nephew. So I had to drive an hour one way all the way back down there, with MORE paperwork, told them the second time, "it has to read exactly as it is on this paper", they still didn't do it right. Keep in mind I've already ordered checks, checkcards, and just two days ago signed the kids up so their checks would direct deposit into their accounts. Low and behold, I get a call today that they STILL don't have the shit right and I have to come down there again. I was so pissed off, I know "Paul" from the bank could feel me seething through the phone. Now I have to go to the bank for the 3rd time, open new accounts and hope like hell they can get it right, then I have to call and cancel all the direct deposit stuff I had just taken care of two days ago. Some straight bullshit.

I've been keeping it together so far, but damn. I can only take so much. I think I could manage if I didn't have to keep doing the same shit over and over and over again. I feel like I'm spinning my wheels constantly and getting nowhere.

I've been to more banks, courthouses, health departments, hospitals, garages, funeral homes, social security offices in the past month than I've seen collectively my whole life. I've also been managing the process of my sister and the kids moving closer to my aunt. I wish just some part of this process would go a little easy, be done right the first time. I wish I could feel some spark of hope for the future, but all that I'm feeling right now is "what am I gonna have to fix next, and how many other channels do I have to go through in order to complete one thing."

All the pressure, it made me cry today. I don't know if I'm just close to my cracking point, or if I'm pms'ing. I'm trying really hard, but I hope the universe cuts me a little slack soon.

My Journey Now

Some of you are aware that my mother has passed. She passed away four hours after my last post to this blog. April 7, 2011 4:00 am (or 4:32 am by the time the doctor pronounced). I still don't know where I'm at emotionally...I have cried very little since, but the tears I shed each day I was with her in the hospital, could fill the worlds oceans twice over. It feels almost like I mourned her passing while watching the whole process. I think I just haven't had enough time to stop and think about the whole thing. I do find peace however, in the fact that I was able to keep my promise to her...I was holding her hand as she took her last breath. And she did it at a moment, when it seemed, like she thought would be the best for me.

My girlfriend and I had been sleeping in 4 hour shifts, she went to sleep at 12 am and I spent a moment spilling over this blog how tired I was. From 12 am to 4, I watched my mother closely, listened to her breathing, could sense almost in my spirit that her time was close, so I took her hand and whispered in her ear how much I loved her, that I know she was tired, that I've got her, and she can relax now, and she did. At that moment it was time for my girlfriend to get up, for some reason I didn't rush to wake her moments before, I was content with it being just me and my mother, but my mother and I had our last private moment, a moment before she knew I wouldn't be alone.

I kissed her, I held her hand until I felt the temperature of her body beginning to cool. I took her oxygen off and cleaned her nose and face (the oxygen had been making her nose bleed a bit)...I asked for a pair of scissors and I took a few locks of her hair for my mom's sister, who is less than a month off of a ventilator, cheating death herself, but not in any condition at all to come see my mother in the hospital, or to attend her memorial. So I wanted her to have a lock of her hair. Then Jen very lovingly brushed her hair and gave her one last kiss and then we held each other in silence, tears brimming but not quite falling. There was something peaceful and sacred about the moment, I'm certain there was a whispered promise of something after, heavy in the room.

The nurse told me "you stay as long as you want...you tell us what you want to do next, we're here for you, because this is your journey now". So, this is my journey now. I have no idea where it's going to take me, I'm a little afraid, but my mother taught me well...and though she only wore a size 5 1/2, I've got some big shoes to fill. The unwaivering support of my very few true friends and my family will see me through, as they have gotten me this far, and I know I would have cracked a long time ago without them. I'm grateful for these earthly angels. I know my mama is watching me, and I'm going to do my best to make her proud.

So, so tired

The doctors have been telling me everyday for the past three days "could be any minute now". The nurses keep telling me "could be any minute now, you wanted to know baby, go hold her hand" and I would sit at her bedside for hours on end, 10 hours straight Monday night, 6 hours straight Tuesday night, all day long yesterday and when I'm not in a chair at her bedside, I'm on the couch less than 3 feet away, listening, trying to catch a moments rest before I fall over. Her stats go up, her stats bottom out, her stats go up, her stats bottom out. I'm grateful for every moment with her, but, I'm not sure how much longer I can hold out on this roller coaster ride. I feel like she's died 10 times over already.

She didn't want to be on life support because she didn't want to linger like this. Hell she's only 62, still so relatively young. But I feel everyday, the both of us growing weaker. I had to talk to a grief counselor yesterday because I began to feel guilty because some part of me selfishly began to wish her on because I'm just so physically and emotionally exhausted. The grief counselor told me that was pretty textbook, but if it was the other way around and I lost her suddenly, I'd be wishing for more time, and she was right. Nurses, doctors and counselors have asked me if I'm getting out of the hospital at all, I told them no, she made me promise to be here holding her hand when her time came and I'm determined to keep that promise, erego, I'm paranoid to leave her for even the shortest amount of time. In hospice or Palliative care they tell you to tell your loved one that it's ok to let go, I've told her it's ok to let go...the entire family has expressed their love and told her her it's ok to let go, we know she's tired, we know she's been in pain for a long time. But she keeps fighting. I wish she had this much fight in her months ago when I was trying to get her to go to the hospital, or at least up out of bed and moving around some, right up to the moment she told me I was "picking on her".

When someone is in the process of dying they develop what is called Cheyne Stokes respiration, which is an abnormal breathing pattern that is categorized by a series of sometimes deeper and faster breathing, and then a long pause, lasting anywhere from 10 seconds to as long as a minute. She's stopped breathing so many times, I've had to train myself not to jump up immediately and run to her if I'm not already at her bedside, but each one of these episodes makes my own heart stop a little.

Monday night (I think it was Monday, my days have all run together, my mind is barely working at this point...I stood on an elevator with only 2 buttons yesterday for 5 minutes, before it dawned on me which floor I needed to get to) anyway, Monday night she had an old GI bleed begin to express itself. My mothers biggest fear was suffocating (mine was losing my mother), that night she started bleeding, expressing old blood from her bowels and from her stomach up her throat, she was choking on her own blood. Unconscious, on her back, aspirating in her own fluids, suffocating. I kept telling her over and over "I'm so sorry Mama, I did everything I could so you wouldn't have to go through this", because I've made it clear to the doctors from the onset, that suffocation was her biggest fear, and they've been damn good about making sure she could breathe comfortably. Thank god the nurse was able to suction enough of it out of her mouth that she didn't go that night, like that, I was begging God to show her mercy, and though I didn't feel it at the time, I guess he did, because that would have been a horrible way to go. Again, that was one of the nights the nurse told me "I think she's done baby" so I sat there, I lay my head on the side of her bed, sobbing, and put her hand on my face, so I could feel like she was comforting me until the doctors came the next morning to explain to me what had happened, because they seemed to have left the massive internal bleeding part out when they were explaining to me the possible series of events associated with her death.

I'm just, so so tired and I feel selfish for wanting the hardest thing I've ever had to face to be over. But I feel in my heart, she's got something so much better waiting for her. I just want her to be at peace. I don't want her to struggle and hurt and be in discomfort. So all I can do is pray for her peace while simultaneously wanting every second I can have with her, and a long undisturbed nap.

It takes a special person

It takes a special person to work in a Palliative care unit. These nurses and doctors take themselves to work everyday knowing the majority of their patients are going to die.

This place my mother is in, is wonderful, you couldn't ask for a better hospital environment, that doesn't seem like a hospital. Her room is huge and comfortably furnished, with enough seating to accommodate larger families, two televisions (one for the family, one for the patient) and there is a kitchen stocked with various snackables, and you can order food prepared by a 5 star chef and have it sent directly to your room. Everyday a music therapist comes and sits by her bed and plays the guitar and sings to her (which always seems to make me cry, because I think the gesture is just so beautiful, my mother has never had that, and she deserves it). I'm so impressed with this place, this setting, and the warm hearted people that reach out to you all day. If you ever HAVE to deal with the inevitable physical decline of a loved one, this particular Palliative care unit is ideal.

I'm impressed with everything but this one respiratory therapist. She was rude as fuck night before last about my mothers CPAP machine, but then tried to excuse her assholism by saying it was hospital policy. Fine. I understand policy, I don't understand your attitude. Tonight she came in while my mother was in the middle of a particularly stressful episode and said "time for a breathing treatment" I said "can you wait until she has had her morphine, because she's stressed right now". "No!" the bitch had the nerve to say to me. I looked her dead off into her eyes and said "she's already agitated, she hates that mask, that would only agitate her worse" now, my words weren't that harsh, but my tone was the tone of somebody ready to put her on her ass if she dared to do it after I'd asked her to wait. She got the point and she left the room, but she never came back, and was supposed to be administering breathing treatments throughout the night. So I had my moms nurse give my mother her breathing treatment when she finally calmed down.

I've been told repeatedly in this unit, if there is something you want, or don't want, just let us know and we will do everything we can to accommodate you and respect your wishes, and so far, everyone except that respiratory therapist has done so (well, she respected my wishes after I made it clear she might just catch a beat down). I told 3 different nurses about her attitude, and said "she doesn't need to be on this floor, she doesn't have the bedside manner for it", plus the fact that she NEVER came back to do my mothers breathing treatment, I asked her to wait, I didn't tell her to just forget about it altogether, well, she is getting wrote up. Apparently quite a few patients have complained about her attitude, and her refusal to cooperate with family wishes, when the people here are already stressed enough.

I said to a nurse yesterday, "this must be a hard job" and she said to me "honey, it can be, but it's fulfilling to me to know that I can make someone else's journey a little easier" and that's a clearly compassionate heart, and if you don't have that, you really shouldn't be in Palliative care.

So, smartass respiratory therapist, this is my big "Fuck you" to you, and a big "Thank you" to all the other wonderful people who share their kindness, their compassion, their smiles when a patient or their family needs it the most. I'm having my girlfriend go tomorrow and pick up a special treat for the nurses here, I feel it's the least I can do for them, just a little something to know they're appreciated. Respiratory therapist wench can't have any though.

With that said, the nurse just came in and told me I should try to get some rest, I think she's right, cuz I'm exhausted. Just thought I'd vent for a minute.

At the Crossroads

I've spent the past two days in the ICU with my mother. I got called alone, since I was the only one there, into the "Family Counsel" room to be told, my mother is dying. I'm absolutely broken. My eyes are almost swollen shut from crying. I'm not ready for this. I've been home from the hospital about three hours, I've had a few drinks, I've had a few cries, my eyes still burn but my mind is in a million different places. I'm the one that has to handle things, but I feel so fucking lost, in an unfamiliar, uncharted world and I don't know what to do.

My mother has been hospitalized three times since November...twice for pneumonia, and this time because she was holding too much fluid, she was beginning to swell, she has gained 20 pounds in water weight since she was released from the hospital in January. My sister (who actually lives with her) and I have been trying to encourage her to get up and move around since she got released from her January hospital visit, but she would say it hurts too bad to move...and I would say, "but Mom, the more you lay there, the more you are gonna hurt when you try to move". I took her March the 21'st to get a cataract removed from her eye, that morning, I again tried to encourage her, I ended up making her cry and she ended up telling me I was "picking on her". I said "No, mom, I love you, and I just want you to get better". At that point I decided if I was only going to make her cry, I wouldn't "pick on her" anymore. If you love your mother and you've ever made her cry, you can understand how it made me feel to have my mother in tears. The following Wednesday she ended up in the hospital with a pulmonary edema and even more water weight gain. Which in turn became congestive heart failure, heart pumping at only 20% but not enough to sustain kidney and liver function. Dialysis apparently would be too traumatic with her heart/blood pressure problems.

They immediately started her on lasix (which one doctor had already prescribed but in too small a dose to work) and they pulled off alot of water rather quickly. I'm thinking "good, good, they have the water moving". But then her stats started dropping, and the water quit moving. Her potassium was out of whack and she refused to take the medicine that would fix it, and apparently that can't be given through IV. I begged her to take the medicine. I begged her to move before she ended up in the hospital. I begged her to eat for the past two days but she chews it up and spits it out. I can't even call it vomiting because you actually have to swallow it for it to be vomiting, she just doesn't swallow it. They have her on drugs for her pain that makes her doze, then it makes her jerk, then it makes her snap herself awake with her eyes wide open like she's terrified. I was so alone and fearful today, but I think I had an angel there in disguise, a disheveled old Vietnam Vet, his name was William Clark, but I could call him Bill.

I had met him yesterday, while I was looking for the cafeteria. He said "where you headed?" when I stepped into the elevator, "snackbar" I said, he said "oh follow me, I know this place like the back of my hand". So he lead me to the snackbar/cafeteria and I thanked him and we both went our separate ways. Today, I'm in tears 10 mins after I get to the hospital because the nurse tells me my mother has once again refused the medicine to get her potassium down...I beg my mother, she still refuses...so I step outside for a smoke and a defeated "I don't know what else to do" cry. And there stood the snackbar guide...I was on the phone and he watched me with such sympathetic eyes...and he waited until I was done, and he said "Are you ok?". I said "I'm up here with my mother and she's not doing so well". He asked what was wrong and I told him, he said his mother had the same thing, and he was currently up there with a lady friend that was suffering from heart problems as well. He talked so kindly to me when I needed it so much, and he had this rough hewn appearance that some people would typically avoid, hell, honestly I would typically avoid it, but, I asked Bill if I could give him a hug, and he graciously accepted. And I'm grateful for kind strangers. He gave me an apple and picture of himself on my way out of the hospital tonight. I told him I didn't need a picture, that I'd remember him for the rest of my life.

I know that people lose loved ones all the time, it's the natural circle of life...the prognosis they gave me on my mother today was several days, to a possible couple of weeks. That's not enough time, it's never enough time. I talked today about her transferring to a Palliative care unit in order for them to get her medications straight, and get her comfortable and from there, if possible to transfer home under the care of hospice. I'm going to spend every minute with her that I can.

Then I have to figure out how to keep their power on with a 1200 dollar power bill, make sure the mortgage gets paid and everybody gets fed and taken care of, and has a place to stay when worse comes to worse, and watch breath by breath as my mother fades away. God, give me strength. And if you pray, I still believe miracles, please include a word or two for my mom.