Nothing is okay anymore. My Dad died on October 12, 2010. Amyloidosis. A rare disease in which a foreign protein builds up in one's system and hardens the victim's organs. It starts in the kidneys, moves to the liver, the heart and eventually the brain. It's almost impossible for doctors to diagnose until it's way too late. For my Dad is started with his legs and feet becoming swollen, so swollen that he was unable to tie his shoes and could only wear baggy gym pants. The doctors thought it was kidney cancer at first and he immediately started chemo...nothing changed. The symptoms all started around the beginning of August....he was gone by October.
I found out he had "kidney cancer" the same day I was supposed to go to an irish festival, so I did my best to put on my happy face and try not to be the downer of the group. I didn't want to tell anyone because who wants to hear about other people's problems? I mean, they have their own shit to worry about, why should they care about what my problems are? Especially during an irish festival, they're there to have fun.
The guy I was seeing at the time took me out to dinner a few days later and I told him about my dad. His response-"well at least it's kidney cancer, the doctors can take care of that." That was all he said to me on the matter...then we moved on to the next topic of conversation. I felt like someone had just slapped my in the face. But enough about him, he doesn't exist to me anymore, just another stupid guy who wants nothing but to get laid.
Living over 100 miles away from home it was hard to visit and help my mom and little brother take care of my dad- that's the worst. Not having to witness the suffering that my dad went through day after day or taking care of him, I didn't help my family at all. I feel awful- I wasn't there to help, I failed my dad along with my mom and brother. My brother is 14, he should NOT have to help my mom change soiled sheets or help my mom pick my dad up off the floor after falling down in the bathroom...that is NOT okay. Trying to balance college and driving home when I could was not easy. The hospital near my hometown, St Joes, told my mother that there was nothing else they could do for my dad, so they sent him to a more advanced hospital in Rochester, an hour and a half away from my mom and brother. So....to take care of business and talk to the doctors, I was the one driving because my mother was in no condition to handle a car. Saturday I drove to pick up my mom and brother so we could visit my father, we stayed for a few hours and then I drove them home, hung out with old high school friends and then drove myself back to my house...I was home and in bed by 4am. The next day I was up at 5am to pick up my mother up by 7am to be in Rochester by 10Am to talk to the doctors to see what the next step was. While at the hospital, my dad was hallucenating- saying that he was seeing falshing lights up in the corner of his room.."Al, did you see those lights flashing over there?" *sigh* Then he'd start mumbling and saying that he wished he was dead and that he was just waiting for death to take him away. "I'm just going to die, that's what's going to happen." I had an hour worth of sleep and just stared at the doctors when they told me "it'd be best if you just took him home."
OMG...why am I taking my father home? He's sick and needs help to get better! Then it clicked...no Al, help is not an option, there's nothing else to do but wait, wait and see how long he lasts. My mom asked the hematologist how long my father had to live... "I'm not sure, he could live for another year for all we know." That's when something happened that I'll never forget...I've never heard my mother scream so loud in my entire life. I didn't realize it but I was shaking, it was the only thing I could do to hold back the tears and try to be strong for my dad, I didn't need him to be scared from watching me cry. I thought that he needed to see me with my head held high, that way he wouldn't be scared and he would have confidence that he would pull through, even though it was impossible for him to survive. My mom made arrangements that day as to when he would be released from the hospital and when he could come home.
At this point, after talking to the nure practitioner, hepatologist, nephrologist, oncologist and the hematologist and hearing them all say "wait and see, that's all we can do" I just wanted to grab them by their shirt collars and force them to do something...ANYTHING. My dad, already without the use of his kidneys, liver, and half of his heart hardened by the disease was in the state of dementia. I was just grateful that he knew my name, even though he would sometimes call me by my brother's name.
I'll never forget it, the last time I saw my dad his skin was the color of the yellow traffic signs (from the liver failure)....I still can't drive without thinking about him everytime I see the yelllow signs. His brain was so far gone that he just kept repeating to the doctor " I just need to get better so I can kick this sickness in the ass and get better so I can take care of my family." Before my mom and I left that day, we helped him out of the hospital bed and into a chair so he could look out the window. My mom had brought some stuff from home and he wanted his sunglasses because it was such a bright day. We left him in that chair...him looking out the window with his motorcycle glasses on and his favorite comfy slippers, skin so yellow it almost looked like an olive color. The last words I said to my dad were "I love you, I'll see you later."
I lied to him- I didn't see him later and I'll never see him again, how the hell could I have said that to me dad? I said it really loud, to add more assurance to it that I WOULD see him later. I wanted him to believe it but more so I wanted to believe it myself.
Two days later I got a call from my mom, it was 11PM and I was afraid to answer the phone, I knew it wasn't good news. She just said "Al, you need to come home tomorrow, I think it's getting close to time to say goodbye." I hung up the phone and just sat on the couch for the next 3 hours crying my eyes out and trying to figure out how to breath. The next day I left early and set my estimated time of arrival at 1pm. I got home and was hesitant to see him, I didn't know what to do so I went into my brother's room to talk to him nad see how he was doing. A few minutes alter my mom said she'd come in with me to see my dad. I thought he was sleeping....my mom started screaming and I immidiately yelled for both of them to get out of the room. I pushed them out and shut the door, I didn't want them to see my dad like that and I especially didn't want my brother to have the last memory of his father dead in bed. After shutting the door I just stared at my dad for a minute, trying to get my wits about me and then I finally walked over to find a pulse....nothing. I didn't know what to do, so I kissed his forehead and told him I loved him.
My mom came in and walked to the other side of the bed, just staring at me. I knew I couldn't give her what she wanted, she just stared at me with pleading eyes and I knew she wanted me to tell her that he's fine and just asleep....I couldn't even give her that much. I walked over to where she was and just held her, I think it took about 15 minutes for her to come to realization at to what was going on and for her to stop crying. After that I went ot go look for my brother because I had just realized that he wasn't in the room. I found him sitting on his bed facing the wall and petting one of our cats, I tried talking to him to let him know that it's okay to cry. I was hoping my hard headed brother would break down and just let it all out but he didn't, he just sat there and didn't say a word. I gave him a hug and told him I loved him, then went make the phone calls that I never thought I would be able to handle.
First person on the list: My dad's stuck up, rich older brother...
ME: Greg?
Greg: Yes.
ME: It's Allison. *sigh* I hate to tell you this but....it's over
Greg: Wow. That quick, huh? Do you know what you're doing for the funeral arrangements?
ME: I can't think yet, I have to take care of my mom and brother. I'll call you once I get things straightened out
That was it. My father had ben dead less than an hour and my uncle wanted to know what I was doing for the funeral. He didn't even seem emotional or give his sympathies. This is the story of my extended family. My two cousins also showed up to my father's funeral in jeans and Ugg boots- how disgraceful. After the funeral we went to a resaurant and since they live so far away and we never see them they wanted to take pictures of us all....I was not in the mood for pictures or for my aunt to talk my ear off...couldn't they just leave me alone and let me stare out the window peacefully?
I made about 20-30 phone calls that day and each one was harder than the one before.
My mom told me that someone was in the driveway and I went out to see who it was. It was HOSPICE....they were scheduled to visit my dad the day before but they just never showed up. As the woman got out of her car all I could say was "You're about 20 minutes too late." Another person showed up who was no help at all, being one of the head honchos of HOSPICE one would think that the lady wouldn't just stand around and that she would do SOMETHING...ANYTHING! The medical examiner came to confirm my father's death. It then proceeded with more phone calls, the district attorney to approve a hearse to come to the house to get my dad and calling the funeral home to also confirm that it wasn't a hoax.
I then heard a motorcycle outside. My dad's friend showed up and told me that another one of their friends had just told him that my dad was sick and he had come over to visit. After I told him what happened he just started balling and hugging me. Imagine- a leather jacketed big time biker balling and giving me, someoen he didn't even know, a hug. While outside talking to my father's friend, the door opened and they brought my dad out in the body bag. I watched as they put my dad in the back of that scary onyx black hearse and drove away. I followed the hearse out of my driveway and was SO tepted to run after them, I don't know what I would have done if I had caught up with them but I just didn't want them to take my dad away.
I walked back in the house after my dad's friend and the hearse left. I couldn't find my mother, she wasn't in the chair where I left her after making her a cup of tea. I found her kneeling beside the bed, rocking back and forth crying...I left her there so she could have her private moment and then proceeded to make more phone calls.
I've come to find out who my true friends are. Those who have stuck by me aren't my friends....they're more than friends, they're my family. Most friends told me to call them if I needed anything and all I can think of when they say this is "do you know me?...I'm not going to ask anyone for help, I'm too stubborn!" After they say that to me and give me their respects I hardly hear from them again, and even after 2 months after I still hardly hear from them. More of my brother's friends attended my father's funeral than any of mine, but then again most of my friends are back at college, over 100 miles away from the funeral site...but I know that if something like this happened to one of my friends then I don't care how far I'd have to drive to be there for them. Just proves the point that we're all alone in this world, we need to take care of ourselves and not many other people care about you...such is life.
Other friends didn't even say anything to me...and I think that equally hurts to the loss of my dad. People who considered me family didn't say anything to me, people who grew up with me didn't say anything, old boyfriends didn't say anything to me, and most importantly...the guy who considered me as his daughter and who was always fun to hang out with didn't say anything to me. Yeah, you definitely know who your true friends are.
As to getting over things and getting on with life...people think "oh good, she got out of bed and took a shower today...she's doing fine then!" News flash- just because I took a shower does not mean I'm fine. Every day seems to be harder then the one before. Anything can set me off to make me think of my dad and before you know it...BAM!...I'm drawing blood from my bottom lip from trying to hold back tears. I don't care about things anymore, I don't care about school, work, havign a social life (not that I had much of one to begin with) or anything. I find it almost impossible to get out of bed but somehow I do it even though I'm always tired- no matter how much sleep I get I'm ALWAYS tired. I get back from classes and I just want to lay in bed, there's no energy to do anything else. Sure, I laugh and smile still but that doesn't mean anything, I"m still numb. I hurt so bad. I don't know what to do to get out of this slump..I honestly don't know if it's even possible to get out of it.
No one wants to have a Debby Downer around them, which is another reason I just crawl into bed when I get home. If I'm in bed then I'm not bothering anyone or annoying them with my blubberiness.
I'm in hopes that one of these days something in my head will click and I'll just feel better and more determined to do school work, go see a movie, go to the theater or a concert. But I wonder, even if I did go out and do something...will it make me feel any better or will I just want to leave and crawl back into bed?
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