Hi all! I'm back to blogging! But this time - it's a blend of life/Dad stories, intertwined with my passion for cookie baking!!! complete with recipes! so please head over to my couch. www.cookiecouch.blogspot.com
I'm not going to blog anymore. There's lots to say, but it's too hard for me to explain and share now. You can't get a ticket for this roller coaster by reading my thoughts -you can see the crazy ups and downs - but my Mom and I are the only passengers experiencing the ride. It doesn't make a difference if I tell about it or not, it's still the same roller coaster ride, just more people watching me get nauseous on it.
Perhaps I will write again when it strikes me as share-worthy, or perhaps I'll shift topics completely and see if my life has something else to speak to other than my father. After all, this is called "losANNEgeles link," not "My Brain-Damaged Dad," as it probably should have been titled.
Thank you for the love, thoughts, and encouragement, and for silently sharing in this journey with me.
Life sucks and that's about it. I'm over it - send me on a trip far far away and let me get some space. done and done. give me back hope, love, and patience. that's all I ask, cause as of now I'm 100% tapped out of those resources.
I get random responses from these blogs I write from you all -- they confuse me in the end. I feel guilty for not sharing with you and then sometimes I feel guilty for sharing too much. but I don't know what's worse or better, if you know the truth or just a subtle glimpse of it. so I'll keep more private and I'll share when we're both ready for me to. many thanks for all the support and love.
There's a lot I'm sick of in this whole situation. It occurred to me, if a year ago when Dad was in a comatose/vegatative state, that if I had known that a year later, today, he would choose the same way of life - maybe it would have been smarter to leave him there than sing to him every night and will him back to life for me. Because today, he might as well be in a coma again. He won't budge off the couch, he won't budge out of bed, he does make his way to another destination in the house only to lie down and be pathetic again. It's absolutely hideous. He's had no outing today. I left him to lie on the couch while Adela cleaned the house - I had work to do. I had to try and form some semblance of a life/job for myself and went and coached kids in a production of 'High School Musical 2.' Very fullfilling. I'm being sarcastic but I have to say it did fulfill me for 4 hours of the day. I got out - I put my teaching skills and enthusiasm to the test, I got kids to learn choreography and be fabulous at it, and I fulfilled a purpose for the day other than caretaker. Nice work, Anne. And then I came home to the pathetic lump on the couch. I will repeatedly ask myself and my father, WHY DID YOU CHOOSE TO WAKE UP when he has now made it abundantly clear that he prefers sleeping all day and closing us out of his life. Well I wouldn't let him today, and I won't any day, it's just the time and place within the day that I decide to put up the fight. And this afternoon, I made it his job that we were going to walk the dogs to the corner. THE CORNER. Not to the stream nearby, not around the block, not down the street, but the corner. And that was a feat. Dad has scars on his arm to prove it, I have bruises on mine. But I pulled the big guns out today and went all Annie Sullivan on his Hellen Keller ass and with force, succeeded to get him out the door, leash + dog in hand, and up to the corner. His one outing of the day. He bitched and moaned all the way through. Example: "I can't.... it's cold, I have nothing on my arms." me: "it's fucking 105 degrees out, Dad you'll be fine." Dad: "I need a jacket." me: "fine - you hold the dogs I'll get you a jacket, we're going to the corner." then throughout the twenty-five foot jaunt to the corner: Dad: "I'm turning around, why am I doing this, I'm going back." me: "Dad - you used to walk 15 miles around this neighborhood and you can't get your sorry ass to the corner?! walk!!! we're going! it's your only obligation for today. you've laid on the couch ALL DAY. you're walking to the corner." Dad: "no I'm not." Me: "yes you are!" then some pushing ensued. Me: "don't you dare push me in public. I'll back off if you can prove to me you can walk the dog five more feet to the corner." He picks up the pace. We make it to the corner. Me: "good!!!! look at that! you did it! you're amazing! we can go home now." I turn my back to him and prance back towards the house. done and done. his one obligation for the day fulfilled. And believe you me I left out a good chunk of juicy details and 23 minutes worth of pushing, pinching, scratching, spitting to get him out the door to the corner. But I succeeded. And my father can say he did something for his day. I don't care about the physical shit -- he knows he's capable of more, he woke up from an impossible coma after all, he came back from the dead -- he can walk to the corner if I have to get some battle scars from it.
He's now out on walk #2 of the day with Mom. We had a pleasant dinner on the patio -- fried chicken, music, vino. He loosened up and didn't let this morose, pathetic state of being get the best of him. And by loosened up I mean didn't cop out behind being asleep the entire time nor did he whine like a 2 year old. He ate, he hummed to the music, and when Mom suggested a walk with the dogs, he cleared the dinner plates and went to get the leashes. Success and contentment for a good 50 minutes. The evenings are always better. It must feel more routine, normal and natural. As opposed to the mornings where he doesn't know why he's getting his ass out of bed and it's so ridiculously slow and sad and tedious. I tried a new tactic this morning and played into his baby-ness. "awww Daddy, aww you're so sleepy. I'm so sorry. You have to get up and put your clothes on! oh you can't? here okay, I'll help you." and I stick his feet into his shorts while he lies in the fetal position on the bed in his bathrobe. "come on, Daddy! you can put your shorts on the rest of the way." He keep his eyes tightly shut and kicks the shorts off his ankles. "okay. I'll let you do it yourself." I say in my most babying voice possible. "You get dressed Daddy and I'll go fix your bottle -- uh bagel. did I say bottle? I meant bagel." And I left. And no doubt, 10 minutes later, he came downstairs, fully dressed.
I don't know what the point of this blog is but I feel you deserved some detail and perspective. Welcome to the daily life of David. Ta-da!!!!!!!!
I felt fulfilled today, in my life, for the first time since before my Dad's incident. And it had nothing to do with him. I felt extremely proud, I felt complete in my soul, I felt happy, loved, and successful. And again, it had nothing to do with him. It had nothing to do with being the dutiful daughter, or the free-time caretaker, it had to do with me and my skills alone. Today marked the end of camp at the Theatricum - a five week long drama camp, that takes place just three days a week. I don't know how else to go into it but to just say that I had THE BEST group of 17 eight and nine year olds one could imagine. But I know that they were only the best to me because I set the tone 5 weeks ago, and I extracted every ounce of positive energy and excitement, and creativity and playfulness, that has been buried underneath this fortress of strength I've created around me for the past year. I led a successful group of campers into feeling proud about their play, having fun and making new friends, taking risks they didn't think they'd take. I have a stack of paper cards with marker scribbles of "I love you Anne!!! You're the best teacher I ever had! Thank you for always being so fun!" After being a camp counselor on and off for the past decade, I can honestly say I've never left a group of campers at the end of the summer feeling quite so proud and with a sense of completion - like I did my job to make these kids more confident, happy, and open their eyes to something special. okay I realize this is getting cheesy and redundant, but what's pivotal is that I'm so afraid of losing this day and this feeling. When I hugged my campers today for the last time, (I got them in a big huddle on the stage) and I looked at them and I thanked them for all they did for me this summer - for filling three days of the week with their cheeriness, their positive energy and fearlessness, their friendliness and compassion for everyone in the group and for me. I told them they have no idea how much they meant to me on a daily basis. And I started to cry, and they all looked around the circle, smiling curiously with their own pride - knowing they gave something back to me. Because they have no idea what I come home to, and what I leave in the morning. And no idea how their smiles and carefree hugs mean so much more to me.
Then it hit me like the wind being knocked out of me. What will I do with myself now? This was the one thing to call my own for a brief while - and it fulfilled me so happily. Now it's over - and I'm left truly wondering what is next. My life, just like my Dad's in a way is a big open oasis. What will we do with our time?? My success with these kids got me thinking all sorts of other things... should I give up acting/writing and go teach first grade?? Or maybe I could fuse all this recent personal experience and become a speech therapist for kids. New thoughts just start snowballing. And then I think, but where's the time to do this, and when will I have it?
Then another blow to the chest came while I was taking Jenny on a brisk hike to blow of the steam that was created from Dad when I got home. (Upon arriving from my amazing, successful day, Dad proceeded with his usual completely ignorant bullshit tired-routine and didn't move a muscle or look up to regard my cheery hello. Fuck you I casually tossed back to him and grabbed the leash and bolted out the door.) Then a thought like I've never had before hit me hard and shocked the breath out of me swiftly. -- I loved these kids so much, and they loved me... I'm gonna be a good mom one day.... if I do ever have a kid, they'll never know my Daddy.
How interesting it is to be living away and alone for a mere 5 days in this facilitated escape from reality. I'm feeling a touch lonely, a touch anxious, a touch disconnected. My immediate companions are my amazing dog-cousins Stogie and Dunkleman. Thanks to Uncle Bob and Marianne's Hawaii vacation, I get a little escape in their Encino abode. And it feels wonderful and unusual all at the same time. It's been a year since I've lived truly alone -- on an average Tuesday night in this day and age I would probably have the same amount of nothing to do except Dad would be in the next room bored and waiting for me to upstart some activity. Hmmm... do I miss him? I don't know. If anything, the separation makes me miss my real Dad, and realize how I long for him without recognizing it, and how long I've been without him, and how I never have grieved nor will I ever in the near future. And I feel bad that Mom is stuck at home these 3 days with the mad-Dad and she's insisting I give myself a break away and I feel a little guilty and bad that I'm not helping and that she has no break. But I digress... this whole "missing" thing is a double-edged sword. No - I don't miss my home life right now, it churns my stomach to think what daily life is really like at home. And then I think... I do miss my mad-Dad I guess, but does he miss me? Is his mind wondering where I am right now? And why I haven't been home? Has he asked for me (Robin) lately? I'm pretty damn sure he hasn't asked for Annie. But if he doesn't miss me... why should I spend time missing him with all I give and sacrifice for him already? I should enjoy this house to myself, these endless loving labradors who are by my side every second, and the freedom to do whatever I want and waste the night away.
In truth, it feels too peaceful and quite incomplete on so many levels.
******31 Minutes later*******
Just got off the phone with my crying Mom and my suprisingly perky Poppa. Mom handed him the phone, and I get a cheery "Hey!!! What's happenin?!" It's like a deflated balloon inside my soul was swiftly inflated with helium. "Hi, Daddy! I'm good. How are you??" I say. "We're doing good... where are you?" he replies. "I'm housitting for Uncle Bob in Encino." "ohh!! You're not too far away." he says happily. :) And the rest of the conversation ensued in cheerful obvliousness on his part and loving satisfaction on mine. He was happy to talk to me. He said he missed me. And me being away and out of the house -- that's normal to him. And most of all, he said, "Love you" first - before hanging up the phone. So I could reply, "I love you too." He's there. I brought him out of his depressed, brain-damaged funk for 5 mintues. I sort of just want to hug him now.
This is now the second year in a row I've missed fireworks on 4th of July. I can hear them outside my window right now. Big. Crackly. Booming. I guess what makes this year different is that I'm missing them by choice. I'm not sitting in the dark depression of the Coronary Care Unit watching my father flail about in his hospital bed, breaking out in fevers and spitting and spewing and sweating and moaning while his eyes stared blankly into space with no reaction or connection. These were the most hideous days. The in between days of Coma-to-Awake where the "Persistent Vegetable" that he was moved and thrashed and sweated and moaned and then lay still and then did it all over again while nurses, my Mom, and myself were changing sheets and pillows every 5 minutes and then moving his massive body back to the center of the bed only for it to move and thrash minutes later and almost fall out again. Oh god those were some days. I remember so many little disgusting details when I put my mind to it. Like the sea-foam green little swabby sponges that the nurses used to swab the icky, crusty, saliva buildup out of his mouth - and how if a nurse hadn't come around for a while I'd get in there with the sea-foam sponge myself. I remember it was on 4th of July that they switched us out of the fancy new SICU (surgical intensive care unit), which was clean and beautiful with amazing attentive nurses and back to the dirty old CCU with Alice-the-inept RN who spoke no lick of English in any audible tone. Ugh that was so awful -- and it was 3 days there before we got moved back to the beautiful new wing of Glendale Adventist and into the environment that became the turning point in this journey. The Neuro Telemetry Unit. Room 101. Where Dad woke up 4 days later in the loving care of the best nurses in the world.
Wow - this world is so much more livable now that everyday I think about where I was a year ago. I guess that'll change come August 27th when Dad was discharged and the spiraling journey of therapy took off. July 4th was also the day I started writing it all down in my red journal. It took me a week before I could put the experience on paper - because that of course would make it real, and permanent. I was waiting to actually believe this fate was happening before I could write about it, and that it wasn't really just my worst nightmare. And when I didn't wake up, and I knew I was already awake, in that moment - I decided to write it down. Every doctor's conversation is documented, every new moment, every new awakening, Dad's first scribble, his first signature, newspaper clippings from when the Dodgers signed Manny, hospital bracelets, business cards, random notes... it's quite a collection to behold. I can't crack it open yet - it's still fresh enough in my mind. But I will when I'm ready - and I plan to recreate it for you all to take part in - one day, in some way shape or form.
Though I've now officially missed the fireworks, today was a sparkling, lovely, day. We took Dad to the boat. We saw all of his friends, there were hugs and tears and so much love. He walked up and down the docks, taking this familiar, fun environment in. He took a dinghy ride or two, and ate about 4 hot dogs off the grill. Melvin even came to see all the boat buddies. It was truly a blast, for all of us involved. The boat - where we spent almost every 4th of July, on the water, partaking in the super-soaker battles and watching the dinghy boats parade in red white and blue decorations, then seeing the fireworks blast off the queen mary from the dock - we were able to be back there today, despite everything we're lacking now, we were able to return. It'll never be the same. But it's better than the CCU.