I Am Outraged...

90% of all chronic obstructive lung diseases are caused by smoking. The FDA has been given the power to regulate tobacco and tobacco products. There will now be one of 9 new warning labels and a vivid color image that will cover 50% of the cigarette packs. I took the following statement from another article:

R.J. Reynolds, maker of some the U.S.'s best-selling brands like Camel, Kool, Winston and Salem, said the new requirements violate the First and Fifth Amendments. The company said,

"The anti-smoking message is not intended to provide information that smokers and potential smokers can consider rationally in weighing the risks and perceived benefits from smoking. Rather, it plainly conveys -- through graphic images and designs intended to elicit loathing, disgust, and repulsion -- the Government's viewpoint that the risks associated with smoking cigarettes outweigh the pleasure that smokers derive from them and, therefore, that no one should use these lawful products."

I really, really hate these people and what they did to my mother. She was one of so many that hung on to the previous words of 'can' and 'may' in the warnings that she refused to believe anyone that told her any different.

She didn't even believe the surgeons when they told her that she was going to lose her leg if she didn't quit smoking, even after they opened her leg up and cleaned out her arteries to restore the circulation to her decaying foot.

One minute she was complaining that it felt like she had 'a sponge in her lungs' when she tried to breathe, and the next she was telling me how she was 'dying for a cigarette'. She eventually did die...but not until she suffered necessary mutilation in order to save her life. Not until she lost her independence and quality of life. Not until she slowly suffocated to death before my very eyes...

She said something to me once that caused a realization that unnerves me to this very day. Mere weeks before she died, I found out that she had still been secretly smoking from time to time. "It relaxes me" she said. I suddenly had a clear picture of a killer holding a pillow over her face right in front of me, speaking in soothing tones to calm her, even stroking her hair in reassurance while slowly pressing the pillow ever tighter against her face to kill her, and she was welcoming it... The vision was so vivid, this entity stole a mocking glance at me and sneered with obscene glee...

I was so horrified by what I was picturing and the wave of utter helplessness that swept through me that I nearly passed out. I was in agony. I could see what was killing her, and there wasn't a damn thing I could do to stop it...

I fought for my mother's life. I busted my ass to make her well. Her right little toe was gangrenous. After her surgery in 2006, I diligently changed the bandages and followed the doctor's instructions. He was beyond amazed when the toe actually healed. He credited it to my uncompromising care of her. I was elated to see her healing so well, but she refused to quit smoking.

You can imagine my devastation when two short years later, the same problem reappeared. This time, we were not so lucky. The whole front part of her right foot had to be amputated. I threw her cigarettes away. We fought like cats and dogs. Every time I had to change the bandage on that gaping, horrific wound I took it as a sign of my personal failure. I kept my head together long enough to do what I had to do, then went out into the living room and sobbed with the image of what was left of her foot still fresh in my mind...

After two solid months of bandage changes two times a day and listening to Mom beg me for more pain medication that I couldn't give her, she lost her right leg below the knee. I was watching Big Tobacco take my mother away from me a piece at a time. Her independence took a huge hit, and with it, her self-esteem. Even after she was fitted with a prosthesis, her lung capacity was so compromised that she just didn't have the stamina to do the things she used to do. Depression started to creep in.

For the next nearly two years, we struggled through our daily routines of physical therapy, oxygen therapy, doctors appointments, and the like. Things were going well enough that I had been lulled into a false sense of security. Maybe her lungs were healing. Maybe we were going to get through this. Then one morning, near the end of March 2010, Mom tells me that she needs to go to the hospital because she can't breathe.

It was to be the beginning of the end for us...in so many ways.

When I think of all of the money that she wasted on cigarettes over the years it staggers the imagination. Little did she realize that the cost would be so dear...not only to her...but to me as well. I still have nightmares about it.

I will be haunted by the images of her suffering for the rest of my life.    

   

Bracing For The Inevitable...

I've been going through old pictures and writing the info on the back of them before I forget. It's been more bitter than sweet, to say the very least. I see all of the things that were captured on film, and I watch in horror as one component after another fades from view. People, places, things...all of them vanishing before my eyes like dinosaurs vanishing from the Earth...erased as if they'd never existed. It's terrifying.

It makes me question my very existence...I feel so detached, so out of place now that my parents are dead. I have absolutely nothing to show for my life...no husband, no children, no career. Just an illness that isolates me when I need people the most, and memories that conjure up horrific dreams and crippling grief. I have curled up in a ball and am just waiting for the day when they come for the house...until they come and take every last piece that I have left of my family away from me...

I look at the pictures of me as a little girl and I think...'What a waste. All of the things that you could have been, and this is what you've been reduced to...a mentally-ill, childless spinster who will never know love'. I know without a shadow of a doubt that if I had not been subjected to the daily violence and cruelty that has been the staple of my life thus far that I would have been a very different woman indeed. All of the hopes and dreams that little girl had have been crushed beyond repair, dashed against the jagged rocks of reality. What do you do when you realize your whole existence has been pointless...when you realize that no one will ever need you or love you again? No one...ever...

I have a story to tell...but what good does it do when there's never anybody around to hear it? I know I'm a good writer, but sending stuff into the great gaping maw of cyberspace where it's immediately sucked into a void and never seen by anyone isn't going to help. I am not cooking my way through Julia Child's cookbook. I am trying like hell to find a reason to keep on living, to find a purpose. I thought writing was it, but I see that I'm sadly mistaken. There are too many other people out there that are so much better at it than me. I disappear in a sea of trillions before anyone can see how good I really am.

Oh well, back to writing info on the pictures. At least when I'm dead and gone, people will know who or what is in them.







 

Sometimes...It Doesn't Pay To Ask For Help...

Last summer, I was ecstatic to get a reporter interested in doing a story about Mom and me. The purpose of this venture was to get help...help to clear the clutter out of our house...help to clean it, fix it up and make it handicap accessible so that Mom could come home again.

The reporter came to the house and had a talk with me. She returned with a photographer a few days later. They went with me to the nursing home where Mom was staying. Pictures were taken, and more questions were asked. Both of us were so excited...at long last, we were going to get help. I couldn't wait to see the article in the paper. When I did, my heart sank.

I was mortified to discover that the story had more than a few inconvenient holes in it. For one thing, the reporter never mentions the fact that I had carefully explained that my parents grew up during the depression. Only wealthy people had the luxury of throwing things away. I also explained that my brother and I had hoarding tendencies only because of the way we were raised, and that I don't believe we would have had these tendencies otherwise.

My depression, PTSD, anxiety and panic disorders were caused by living in an atmosphere of extreme domestic violence, running the gamut of abuse on a daily basis. The psychological abuse alone was crippling in and of itself. Add in the physical, sexual, verbal and emotional abuse, along with the bullying at school, and you wind up with an emotionally unstable individual.

I have trust issues. I do not handle stress like an adult. It does not spur me to action. It cripples me and paralyzes me with fear. I curl up in an inert ball or sleep for hours on end. I sob uncontrollably and cannot stop. I took antidepressants for eight years straight and suffered what I like to call my chemical lobotomy. My mind has never worked right since. I was forced to go on disability and am even more emotionally compromised than I was before.

Now, not only do I have the stigma of mental illness to contend with, but I have been given the very public label of hoarder as well. With the death of my beloved mother in April, I am faced with a nightmare of epic proportions that I am ill-equipped in all ways to handle. The Credit Union is trying to force me to assume her $50,000 debt or face foreclosure. Everything my family has ever owned is in this house, and I have nowhere to go with it. Not only will I lose everything, I will be on the street. 

I have already made up my mind that when the day comes for the house to be seized, it will be my last day on earth. I will not allow everything to be taken away from me. I will not allow myself to become homeless. Everybody has left it up to me to come up with a solution...there's my solution. If anyone has a better one, you need to let me know before it's too late. Make me believe that there really is hope. I need to find people who will help, including a lawyer who will help me Pro Bono.  I have about 90 days from today before I will receive the letter of intent to foreclose.

Mom said to me..."Please Becky, don't let them take my house." I promised her I would do my best. As usual, my best has fallen dismally short of the mark. I am tired of begging for help and having every plea fall on deaf ears. In this entire world, surely there must be at least one person who can do something to help. At least one...isn't there?

Aftershock

My whole world is falling apart. Mom was my anchor, my purpose in life. I have been viciously severed from that stability...now I am adrift in the horrific, churning waters of reality in a rickety boat that isn't going to last much longer. I do know how to swim...I just don't know how long I will be able to keep my head above water...or want to...

There is a detachment from my surroundings going on right now...the whole world is moving at regular speed and I am moving like centuries old, inert molasses. I am aware of sound, but not really hearing it. I am aware that there are things around me, but I'm not really seeing them. I'm moving, but I don't really remember how I got from one room to the next. I'm smiling about something that reminds me of Mom one moment and sobbing uncontrollably the next. I want to curl up in a ball and sleep for a year. I never truly understood what the word 'exhausted' meant until now.

I have always heard there are seven stages of grief...right now I would say I'm at stage one - shock and denial. I have this overwhelming urge to walk to the nursing home to pick up her dirty laundry, even though I know she is no longer there. I keep thinking she is going to run out of things to wear if I don't, or that her clothes will be sent down the chute to the laundry room, never to be seen again. It is taking everything within me to keep myself from going there...I keep hoping there's a slight chance that this has all been some kind of sick, horrible, terrible mistake...that I will climb the stairs to the second floor, go to room 203 and there'll she be, her face all lit up with happiness the second she catches sight of me...

But...I saw her body. I stood next to her while she lay lifeless on the gurney, her face uncharacteristically expressionless, her left eye open slightly and sightless in death. I kept waiting for her to sit up, laugh, smile, hug me, kiss me on the cheek, and start singing that silly song of ours. I kept waiting for her to see me...to know that I was there so that I could watch her eyes light up one more time at the sight of me...

I am in agony. I thought I was scared shitless before with everything that was going on, but now, the only person that ever truly loved me unconditionally has left me behind on this earth. I belong to no one now...no one will ever care about what happens to me again, not like Mom did. I feel like a stray animal, pathetically crying outside of people's houses, begging for someone, anyone to care. I am cold, lonely, and frightened out of my wits. I know it's only a matter of time. I am going to die out here.

I sacrificed everything because of my family. I never married, never had children. I was too busy trying to fix what was broken, to be the good daughter/sister, to put all of the pieces back together again and make things better than they were before. Yes, I did right by my mom. I was there for her. I took care of her until I couldn't care for her anymore. I helped her get her finances back in order, got her out of the debt my brother had gotten her into (except for the Home Equity Loan, which I will blame him for even after I die) and thought at long last, we would be free to enjoy the years she had left in this world. Then she got sick..so very sick...and all of our dreams and plans died along with her independence, her ability to breathe, and her forced admission into that god-awful nursing home...

There are so many things that terrify me about this I don't even know where to begin. I have never known fear like this...my last refuge has been ripped away from me. There is nowhere left to run to, nowhere left to hide. I am naked, exposed, and utterly helpless. The vultures are already circling...they will not wait for me to die. They are swooping in en masse to rip the flesh from my bones while I am still alive...and in depraved indifference, no one will acknowledge my screams. They are leaving me to my fate with no compassion, no remorse, no guilt. This isn't their problem, and there isn't anything in it for them if they do get involved, so why bother? This world is a cold, cruel, heartless place. It's truly every man for himself.

March 10, 2011 - The Shit Hits The Fan

This post appeared on Facebook. I have taken out the comments that other people left on it to protect their privacy.                      

I went to the nursing home to drop off clean clothes for my mom, pick up her laundry, and tend to a few other things for her like I always do. I walk into her room and there's my mom in her power chair, soaked in her own piss down to the bone, pools of it all over the floor, unable to reach the f*cking call button, and tethered to the oxygen on the wall so she can't go and get anyone to help her.

Furious doesn't begin to cut it. I flew out of that f*cking room and raised all holy hell, and she STILL sat there for nearly an hour before they got around to her. I don't even know how long she had been sitting there in that condition before I even got there. Of all the days to forget my f*cking camera...the look of humiliation on her face was enough to make me want to break these motherf*ckers in two. If I ever go missing from Facebook, it is because I am in jail...

It's Illinois, and we've already tried the Ombudsman route. The thing is, the patient is the one that has to make the complaint for them to have any power to help. My mom doesn't want to trouble anybody. Today she said to me, "Calm down Becky, you're going to make these people hate me." There was fear in her eyes. That did it. "No" I soothed..."I'm going to make them hate ME." Then I made it very clear to them not to push me any farther, that they would never know when I was going to be around from now on, and that if anyone dares to be fool enough to take their frustrations out on my mother in any way, shape or form as a result of my complaints that I will have their license.

 

Oh they haven't seen hell yet...but it's coming. Nobody does that to anyone I care about and gets away with it ...nobody. Especially when they're helpless and can't fight back. It's dead wrong, and I'm not about to let them get away with it. I know they think I've given up already. Big mistake. Pictures are irrefutable proof, and I will have that proof, whatever it takes.

She has no freaking legs below the knees for crying out loud. What do they expect her to do, sprout new ones? She would love to be able to take care of her own needs like she used to, but it just isn't possible. Even when they've put her prosthetic limbs on, her lungs are so f*cked up she's gasping for breath after a couple of steps. She has no stamina, she's unsteady and weak. They know she can't do anything about it, so they just let her sit there in her own filth?!? NO F*CKING WAY. Her dignity and self-esteem took a huge enough hit as it is with the loss of her independence, her home, and now this shit?! Bloody f*cking hell.

All they care about are the checks they get. These people are just another body in a bed that gets them more money, and believe me, I will take care of her. Every member of the Administration in that building has had a long talk with me about these issues before...they know who I am, and they know I'm not going to back off until they do right by my mother. To all of you who have my back on this...thank you from the bottom of my heart. ♥ I will give my mom a hug for you all, after I'm done kicking the crap out of everyone else. :)

I Knew This Day Would Come...

Well...the inevitable has happened. I am sorry to say that my beloved mother left this world on Tuesday, April 19th, 2011. I am beyond devastated...especially since there are things that are just not adding up. I know she was a very sick lady...but I have this nagging feeling that mistakes were made. Since she has been cremated, all I have are the recounting of all of the things that happened during her stay in that nursing home.

Saturday...I walked the seven blocks to the nursing home to pick up her laundry. She was sound asleep; I quietly gathered her clothes. She cried out in pain in her sleep, which was alarming, but not unusual. I left. Later that same day, I brought her clean clothes back for her. She was still asleep, her full dinner tray sitting next to her bed. She cried out in pain and sat up. "Mama!" I said..."Are you okay? How come you haven't eaten any of your dinner?" "Oh I've been eating" she said as she picked up her fork and started pushing food around on her plate. I took her plastic pitchers across the hall to the kitchen to fill them with fresh ice water. I was gone less than a minute. She was sound asleep again by the time I got back.

I turned to the two aides that were in the room. "How long has she been like this?" I asked them. They shrugged. "She's been making those funny noises all day." "All day? Once in a while is normal...that is not normal" I said. "Did it ever occur to you to be a tad more concerned about that?" Again with the shrugs, so I went out in the hall to talk to the nurse. "My mom seems to be a lot more tired than usual." "Well, she was complaining of pain, so I gave her ........" At this point, she names off a narcotic pain pill. I thought my eyes were going to pop out of my head in alarm. "No no NO!" I say to her..."she is only supposed to have Tylenol for pain! Her doctor would never approve of a narcotic pain pill...the one's that make you drowsy also slow down your breathing...and her breathing is compromised enough as it is. Please, do NOT give her anymore of those...only Tylenol!"

I also mentioned to her that mom was looking a little more bloated than usual, so I asked her to check and see if she was still on both Furosemide and Spironolactone. She said mom was only on the Furosemide. She said she would call the doctor on Monday to find out if she was still supposed to be taking it. I left with a nagging feeling that all was not well. How I wish I had trusted it and gone back to see her sooner...

Tuesday morning at 6:30, the phone rings. The nurse had gone in to give mom her medicine. Her eyes were open, but she was non-responsive. The ambulance was called, and had left only moments before to take her to the hospital. I scrambled to find someone to take me, as I have no car. I called my brother and told him to get there as fast as he could, because this time, I had been assured that she was not going to make it. We arrived at almost exactly the same time and were shown straight into the Family Room. I knew right then that it wasn't going to be good news. The ER nurse came in and told us what we already knew...Mom was gone.

My brother and I were shown in to see her. I was so used to seeing her face light up with such joy when I walked into a room. Her face remained uncharacteristically expressionless; lifeless. Still in shock, I pulled up a chair, stroked her forehead, and sang our special song to her one last time...the song we used to goof around and sing together to make each other laugh: "I love you, you love me, we're a happy family, with a great big hug and a kiss from me to you *air kiss*, won't you say you love me too. I love you, a bushel and a peck, a bushel and a peck and a hug around the neck, a hug around the neck and a barrel and a heap, a barrel and a heap, and I'm talkin' in my sleep about you...about you...'cause I love you, a bushel and a peck, you betch'ur pretty neck I do...doodle doodle doo doo, doodle doodle doo doo, doodle doodle doo doo doo..." Of course, I sobbed through the whole thing, so it was all off key, which was technically no different from normal.

I kissed her on the forehead, then left my brother some time alone to say goodbye to her in his own way. We waited in the family room for the clergy to come...our mom was raised Catholic, so I thought she might appreciate a blessing and/or a prayer, even though she hadn't been to church in years. While we were waiting, the ER got busy. By the time the clergy got to us, Mom had already been taken down to the morgue. I looked at my brother. "We have to do this...for her."

We were taken down to the basement and through some double-doors. There Mom lay on her gurney in front of the doors to the cooler, her white body-bag zipped down half-way, her I.D. tag in place at the corner. They had covered her with a sheet up to her neck...her face was already starting to take on a mottled appearance. We sucked it up and made it through the blessing and the prayer. I kissed her on the forehead one last time, and gently squeezed my way down her left arm until I could feel her hand. I waited for her to squeeze it back...even though I knew she never would again.

I was driven to the nursing home to find out if any funeral homes would help us, since we are indigent. It was at this point in time I was to discover that Mom had been struggling with her breathing all weekend. In my distress, I was too addled to realize what I was being told. Here I lived only seven blocks away. They had my phone number. She was in distress all weekend, and they didn't think about making a phone call and saying something like "Your mom has been in a lot of distress with her breathing all weekend...you might want to come and see her...just in case..." I've got news for you. If they had been giving her that narcotic pain pill all weekend, then I can tell you EXACTLY why she was having a lot of distress with her breathing all weekend... Once that possibility hit me, I almost went out of my mind with rage. Yes, Mom was a very sick lady, but if they seriously compromised her ability to breathe by giving her a medication she wasn't even supposed to have...

I tried to call a lawyer about it, but before I even got to finish explaining anything, he cut me off and said he wouldn't be able to help me...that I needed to call the state health department instead. Thus begins another endless round of fruitless telephone calls to people who really don't give a damn...and I need someone to take this seriously. I honestly believe that Mom would still be here right now if she had not been given those pain pills. Why won't anybody listen to me?!?!?  

I love you Mama. You weren't just my mother, you were my friend. I miss you so much. :'(((((

Now Mom Has No Legs...

Well, the inevitable happened. The doctors had no choice but to take my mother's left leg below the knee. The surgeon told me that he attempted to just take part of her foot, but that the tissue had already started to deteriorate and the circulation was very poor. I was grateful that she would no longer be prone to deadly blood infections as a result, but I knew she was going to have a long road to recovery ahead of her.

Having no car, I had to rely on my best friend to take me to see her. I only got to see her twice in the entire two weeks she was in the hospital. The first time, she was sound asleep and I wasn't about to wake her. The second, they had her so drugged up that it was difficult to talk to her. I couldn't tell if she even realized I was there. She was released back to the nursing home less than a week after the surgery; Medicare was having an absolute cow that she had been in there as long as she had already. I swear to god if they'd had their way they would have booted her the same day as her surgery, never mind that she worked her ass off for over thirty-five years and earned every penny of her retirement income. She contributed to it her entire working life, but they don't want her to actually use it...it's just for show. If they screw around with their BS long enough for her to kick the bucket, they'll save even more money...funny how that works...but I digress.

I got to see her for a little bit on New Year's eve. She was very tired, but not in pain. Thank goodness for that. I went and filled her pitcher with fresh ice water and poured her a cup. Underneath the blanket, I could see the outline of what was left of her legs. I took a deep breath and sucked it up, for her. But on the inside, I had flung the pitcher of ice water against the wall, fled down the stairs, ran outside and vomited until I couldn't vomit anymore. I was ripping entire shrubs out by their roots, destroying everything I could get my hands on while crying and screaming in helpless agony. Mom was being taken away from me a piece at a time, slowly suffocating to death, and there wasn't a damn thing I could do about it... I gave her a kiss on top of her head and promised her I would see her on Monday.

Unfortunately, I caught a miserable cold and haven't been able to go anywhere near her. I've had to settle for talking to her on the phone, which is better than nothing, but it's just not the same. It doesn't help that Mom doesn't have her own phone to use. This nursing home has one cordless phone for the entire second floor. You get through when you get through. It doesn't help matters much that I can't just call her when I want.

It's heartbreaking when you reach out to people, desperate for someone to lean on to help get you through one of the worst experiences of your life and they either ignore you, don't bother to answer you for some reason or just plain don't remember you well enough to give a damn. Whatever their reasons, shame on them all. I get that their busy with their lives and that time is a precious commodity, but for the love of god, show some compassion for crying out loud! I am not handling this well at all. It's ripping my guts out. No one should have to go through something like this alone...no one.