tag:blogger.com,1999:blog-38593817995246917032024-02-19T16:33:26.894-08:00Life with mom - a daughter's perspective of dementiaThose with dementia are still people and they still have stories and they still have character and they're all individuals and they're all unique. And they just need to be interacted with on a human level.
Carey Mulligan Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-3859381799524691703.post-3285397566222340722016-05-05T11:08:00.003-07:002016-05-05T15:48:47.138-07:00Bye to the old, hello to the new<div align="left" style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 19px;">
I don't fit in anywhere and don't care to tbh. I also don't want or need groups of people validating anything in my life; I'm not into surrounding myself with people who will just nod their heads in agreeance because we share likenesses in common, and I don't like labels on anything because we're all just matter and energy...so please stop telling me what I am, spend your energy on worrying about who you are because telling me who I am is insulting, and gives me negative energy, and instead I'd like to focus on feeding myself good things that make me feel good and bring me up. </div>
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I've always been good w/ being alone. My family is the only thing I live for, and they let me be alone, they let me be me and love me for it, that's why I usually spend any free time with them, because they make me feel good, and they've always supported every single one of my decisions because they trust and love me. Thank you. </div>
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I write this because I'm just getting used to the idea of having a future because you see, I live in the moment...not because carpe diem and shit, but because I don't have any other choice...I live my life wondering day to day if this is the day I will stop being a caregiver to my mother. I'm getting used to the idea of having a future and felt guilty for it...felt guilty for wanting a life outside this box of sickness and care 24/7...a life outside of feeding and changing my mother on this hospital bed sitting stagnant in my home every day of my life with breaks in between to find solace and trying to feel normal. Can you imagine...feeling immense guilt for something that should be every human's basic right? Yes, I felt and feel guilty for living and being happy and having a future without being a caregiver. </div>
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I don't know why some of you even follow my story, I guess I'm mere entertainment to some of you, idk, but it's ok, you can't help who you are. it's interesting because I share very personal experiences and pieces of my life as a caregiver, and some of you are here to label me and judge my entire existence on what I chose to share instead of thinking that you one day could see your loved one on a 4-yr death-bed ride... interesting, but it's not in any way wrong, I just honestly think it's interesting to follow a person you share no empathy or similarities with. I suppose that it could be seen as a bit demented in a way to have strangers, people I know well, or people I sort of know to read my story and carry on as if death has no meaning to our lives where in my life it's the exact opposite. </div>
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Caring for my mother through all stages of disease has shaped me into a person who doesn't mind sharing her experience and being judged for it, someone who is happy to be looked at and maybe felt sorry for, or maybe mocked...its social media after all. Don't get me wrong, some of you are very supportive in my account of confusion, or sometimes pain and that's great, but what I'm saying is this experience showed me that family leaves, friends don't exist...they either turn into your family or fall into acquaintances, sometimes become strangers, and that's ok too. Another thing is sometimes strangers become more than just that, and the people you least expect to be present for support and understanding are there for you. The only group of people in my world that has a real effect on me are my family. No one else's words, beliefs, hatred, or even admiration feeds me the way my family's unconditional love not only feeds me, but brings me complete joy. They matter the most. My family, through love has made me a better person.</div>
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I started this journal so that people can acknowledge those with Dementia and Alzheimer's and recognize that they are still people with needs. As I learned more, I shared, as I gained more experience as a caregiver, I shared.<br />
As I became frightened, angry, emotional...I shared. If you've learned anything at all about this disease from following my personal journey, you are a part of my family in a way because you've been a place for me to be verbally expressive...very cool of you all, even if the place I chose to share my story was social media. No matter who we are where we come from, or what we do...we are all subjects of judgement and ridicule, especially if we ourselves put it out there (even with good intention) and I acknowledge that.</div>
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Even if you read my fb page, or blog, and never acknowledged me as a person looking for a place to express herself verbally because there wasn't a place in this world that desires, or accepts that type of thing...thanks because I'm happy in a way that I made some people feel uncomfortable and placed them outside their comfort zone while they read about my experiences. I'm happy that I don't fit into anyones' lifestyle, and happy and you saw me as fkd up for writing about my sick mother, and happy some saw me as TOO family oriented, whatever that means...weird, but it was said about me, and well, I can live with it, haha. </div>
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I will continue this blog and will create an Instagram account because my life with mom fb page has done its job for me...it served its purpose. Thanks for all your support and feelings, good or bad, it is what it is and has made an impression.</div>
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Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-81000486875820924822015-08-27T21:05:00.002-07:002015-08-27T21:14:49.858-07:00Overcoming thingsIt seems as if I completely stopped writing, however I really haven't, a lot of my blog posts I've saved as drafts because they are so personal, even I don't know who wrote them when looking back.<br />
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You see, I had a really nice summer, I spent time with my husband, and spent time realizing that I was me all along! I was lost for a year, hidden in a dark place where it was hard to see me. I caved myself in, alone and distraught, abandoned and afraid.<br />
I got sick you see, felt sick and got sick because of some things that are so hard to say out loud, but as adults we can all read between the lines and come to our own variable. I really can't come out and just say it because I'm still a work in progress and am on the helping side of this horrible disease called depression.<br />
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You know, it's a rough word for me because it was a tough place for me. I never thought, and who would have, that is be facing this wanting to overcome and get through it. Well, who'd of thunk it?<br />
You see me this way, but I'm not this way, I'm THAT way. Just like you....a person very much alive with many vivid thoughts and wonderful ideas, a person who questions every single thing that faces me, it's just me.<br />
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I was lost in darkness with a pillow over my head nursing my mother, afraid to see her dead one day laying in bedsheets and Linda Ronstandt on the radio. Now I face it, I might wake to find her dead, and that's life...dead if still alive, in a place inside my heart. I was in darkness but now it's not an option to stay there, I can rise and I can look at myself in the mirror, this can be me, this IS me. I can like who I am and face all of my pain I've ever felt, even as a child, I can get through this very, very real thing. I can talk to people, look at people, see them as people, not all idiots, not all selfish, not all self centered, I can still see these people as who they are, or who they tell the world they are, I can still like you although, where are you?<br />
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Let me say this, without my husband I'd be lost, undoubtedly unable to communicate my feelings or what prays inside me, he's the real driving force in this, in all I've been through, no one will ever know, not even really him, but he will know the best out of anyone. This hurt I've been through is quite lovely because I see what this world wants me to see. I've been through every single stage of this disease with my mother, I've gone through it, seen death beguiled, seen sickness and broken bones, utter sadness and deep deep confusion, dirty diapers and helplessness. Life is death backwards, still all knowing, or just forgetting....it can be both when it's dementia..,a whirl wind of life, a shattered time capsule.<br />
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I'm blessed because the world wants me, it makes me hers and wraps itself within me, the universe prays with me, and steadies my mind, strengthens my soul, gives me life and tells me I'm so beautiful.<br />
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I'm so beautiful.Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-11464720309675480232015-08-06T20:46:00.000-07:002015-08-27T20:46:38.013-07:00Summer vacation of the mental kindWe took 2 vacations this summer<div>
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We traveled to Las Vegas, it was our first trip to LV and we ate the best food, dined at 5 star restaurants, it's what I wanted, or needed. We saw beautiful things and the entire days belonged to just us, walking the strip, and closing my eyes without feeling alone. It was much needed, the lights were the sunshine, bridges in the street, staircases and escalators connecting from casino to casino.</div>
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Another vacation, our favorite city, New Orleans where we spent 8 days, it was heaven walking the streets, and eating. The shops were amazing, all of the herbal candles, oils, natural crystals, haunting majestic energy alive, and cob webs. I was in heaven with the magic of the city, truly engulfed. </div>
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I can see myself living there, waking to crows on the balcony beckoning a breeze, a cup of tea and my mind on nothing at all except a pink sunset with buildings to match the hue of the skies, a happy place, a soft, dark and real place where music comes from the streets and pushes it's way through the windows, over bed sheets bidding me a good night, every night. Let me dream this magic.</div>
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Thank you to all who made it a lovely summer holiday for me, moms hospice was great in caring for mom while we were gone, I need more living outside of home. </div>
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Xoxo</div>
Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-28802441522204495202015-07-31T20:27:00.000-07:002015-08-27T20:28:23.875-07:00The sad in meI want to continue to place my memories and experience in chronological order for myself because looking back is therapy...reading my own journey is therapeutic and mind blowing in a sense because I don't see myself as this person. I don't know what got me here to this point, but I'm here.<br />
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Looking at life, I see white and I see raising my son as an accomplishment<br />
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I see blurred events, I see myself crying while alone, remembering the happy in me<br />
I see myself wrapped in sadness, with eyes closed thinking of the moment my son was born, because I named him Moses, I knew he loved me, and it was complete joy.<br />
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Being alone, feeling abandoned, feeling quiet and disjointed, feeling confused and trying to remain what I appear to be, strong.<br />
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Sadness, I hid it well.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-80533939029211145482015-04-19T22:46:00.000-07:002015-04-20T11:15:53.567-07:00 A breakBlog breaks. I need them. But I also need this blog. This is like an escape for me, I don't know...it's a place where I can be honest. I need breaks, period.<br />
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Sometimes I live in pain. Sometimes I live through pain.<br />
I'm trying to care for myself and my mother, trying to keep myself glued together and still have time for my husband and son. Changes need to be done soon. I need to get well, and I'm tired. Please don't say think positive, or hang In there, or keep up the good work. I've done all those things, it's time for me to step away. I'm slowly detaching myself. Soon, I will give myself 5-day breaks once a month (hopefully) through moms hospice care, they have a respit program in which they will keep mom for 5 days while I take a break. I'll start there, but then I need to start living in the world of reality then begin looking into Nursing Homes. I can't do this alone anymore, I get no rest, and no help from family so is slowly killing myself (My doctor's words...not mine). I'm trapped in my own home, this is the main problem I think...feeling I can't just leave my own home when I'd like to, or even have to. My family deserves more from me. I deserve more from me.<br />
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I love you so much mom.Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-59277623976129597722015-02-17T21:51:00.004-08:002015-02-17T21:56:32.848-08:00WoundedIt's not easy opening up and sharing my experiences with you, but I appreciate your readership through and through. Each day I think about me, my family, my mom and wonder different things. I think of the past, and what has gotten me here, I think of the what ifs, I think of lots of things, always including mom's health, firstly and lately have been trying to detach myself from her.<br />
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After moms initial fall, I became so attached to her because I was so worried about her taking another fall, low and behold she did because of a careless mistake from my provider at the time, ugh...it irks the f**k out of me! My mom is bed ridden because of that fall! More complications have occurred because of that fall! She has changed because of that fall! I have changed! I'm trying to rid of this anger I have festering inside me...it's tough, but I have my moments of peacefulness that I try desperately holding on to...I try and try...I want peace.<br />
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Mom is not well, so please stop asking me how mom is...she is not well, I'm trying to be well, strong, happy, and be myself. I don't know...I'm trying to be myself, and I find that at this moment in my life, being myself is the most difficult task ever.<br />
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If you break it down I care for my mother around the clock, I change her last diaper at 10 pm, cover her with the 2nd comforter and give her water at 11pm, so after 11pm is time I get to truly take for myself (God willing). I have a provider for just 4 hrs a day, a lot of times I'm home, so I still do things for mom, help change her, visit with the cna's and nurses for updates, calling her insurance, trying to find more help, dealing with her changes, just a lot of stuff. I have mom 20 hrs a day 7 days a week. <br />
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The toughest part of the day for me is when I have to change mom and change mom's wound dressing. She has a pressure ulcer that is tunneling on her back side, I dare you to google image it. I have to see this daily, I look at it, and dress it daily...it's horrible, I have dreams of it...I can't get it out of my mind. I want a break from it. I don't want to see mom's wound, please...I dont! I hate seeing it, it hurts me, freightens me and makes me nervous. This is one thing I deal with daily. Please, I wish I didn't have to see this.<br />
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Other things...feeding mom, I make her juven twice a day, a fresh juice, and either a smoothie, or prune juice. Aside from this, I feed her twice...I'm always busy with mom, please don't ask how my mom is....she is not good. How am I? I have no idea...I truly don't, I'm alive nursing mom, trying to detach myself, trying to spend time with my family that I so deserve, and they deserve.<br />
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The ending stages of this disease is a horrible, scary, sad thing. I don't know, hard to talk about the good it brings. I see my mom day after day, hour after hour deteriorating....I'm by her side, feeding her, changing her, nursing her, and much more...im witnessing it to the minute...I've had years of this. It's never easy. I'm wounded.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-78580554159673334212015-01-15T19:55:00.000-08:002015-01-24T06:05:55.471-08:00another beginning?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Mom and I almost 2 yrs. ago</td></tr>
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Sorry I haven't updated my blog in a while, but life happens, and sometimes it pulls me in so deep I have no time to think, let alone think about writing, and well, sometimes writing it all down makes it so official, so real and I start to crumble...<br />
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A lot has happened over the course of these past few months. My mother has been experiencing a cognitive decline, but not just that, she has declined in almost every way you can possibly think.<br />
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We stopped seeing her doctor because there is no more care that she can receive, her Dementia is at a very fragile state.<br />
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In November, my mother took a fall and fractured her left hip. It was a nightmare. She couldn't walk. My mother was in pain, my frail, innocent mother was in a tremendous amount of pain, and this fall caused a domino effect on her health, and well being. Everything is different, the way she eats, sits, moves, it's all different, but over the course of 4-5 weeks, mom was starting to walk. Starting to heal. A new beginning? I hoped.<br />
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My brother was visiting and he ended up staying with me after mom fell, he was a big help as mom couldn't move around on her own...he was a big help in so many ways. I was so grateful, but alas he had to go, and I secretly pray he comes back! The help was wonderful to have, I was on a break because he took over, he made meals, fed mom, fed her, it was awesome. (Please come back! You were a blessing!) And my life felt sorta normal for a month.<br />
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Ok, so a week after my brother left, the worst thing happened...my provider left my mother unattended on the sofa while she was in a different room. My mother apparently got up from the sofa on her own, and took yet another fall, this fall was much worse, it is so painful as she was still healing from her first fall. This fall could have been prevented, she should have never been left alone! I don't know what my provider was thinking, I was furious. Mom was, and still is in a huge amount of pain. Mom fractured her arm. Mom spent 8 days in a hospice following her fall, so we are both exhausted. Mom is home now, it's been a few days, and it's not good because she's in pain, and can't move, she's bed ridden, and now she is having issues with her hip, it's so painful. Mom has to be bathed, changed, and fed in bed...she's bed ridden, and has a pretty bad bed sore on her back side. I feel so bad for mom. No one should be in this amount of pain, I hate seeing mom like this, it's heartbreaking and I've cried everyday. Since mom has been sent back home I've cried in my bedroom, the shower, and in my car, I don't know how to handle this, I pull myself together just to go through it again the next day, it's the worst thing...she's so helpless, and I feel so helpless, yet I know I am strong because I get up every morning to face it, and do it again, and I make sure to shower, and to eat, and to cook dinner for my family...I'm ripped apart, but put together, I'm a million broken pieces glued into one. I'm strong, held together by glue that is my family, and her rare smile that keeps me bound.<br />
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There is so much to write about, so much to say, but I can't translate my deep set pain into words. I feel as if I'm hovering myself, looking down, watching us (me and mom, or mom, and I) go through this, it's exhausting, and everything gets me mad, and confused because I'm watching my mother wither, I'm taking an hour to feed her for each meal because mom no longer opens her mouth at will to eat the same way in which she use to, she has been set back. Changing her diaper is a nightmare, but I'm awake and hearing her gasp in pain. My back is breaking, I'm crumbling, but still standing...it's all real. I'm tired she's tired, she's in pain. Please God take my moms pain away!<br />
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I know from reading, and from talking to doctors that It's rare that a woman at my age is caring for her mother (at 68 now) who is slowly declining, but really not slowly at all...rapidly. It's all so fast, I live my life on a ff button, it's not a slow process, it's quick, too quick to digest, too quick to set in, one problem occurs and another issue is developing, my mother is in pain.<br />
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Mom has lived with me for 4-years. It's all a blur of shared experiences and moments. I'm a changed person. I don't look at lives, and examine them, I don't judge them, and am not moved by them...I can't help it, I'm shelled up and only feel what mom feels, only care about taking away her pain. Your facebook post matters nothing to me, what you are eating, I can care less about, your Xmas gifts...who cares? Your supposed artistry, your supposed fear, anxiety, helplessness..its a joke to me, it's all fake, a facade...it's not real, none of it, and I'm not sure why. What is real? I only see pain as real...fear and dying as real, living and happiness come with a price. The only thing that is real to me are the people I love, and facing death, facing pain everyday of my life, dealing with it, and seeing light from a different spectrum, as if I've gone through this before and know what to expect. It's vivid, but blurred. I'm awake, but only see what makes me feel. I am moved, but only by love and pain. I feel pain, but only if it's deep. I'm sorry, but don't know why. I am in agony as I sit by my mother's bedside with a huge smile on my face.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-25188802263630289622014-11-01T16:45:00.003-07:002014-11-01T17:33:08.556-07:00Normal?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Momma witch - Halloween 2014</td></tr>
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What is normal? I don't know...what IS normal; I can't really say, but I miss being it. Or maybe I miss that feeling of thinking I was semi-normal, or maybe miss the feeling of living a semi-normal life, although I don't know what normal really is. Whatever normal might be to you, or me, all I can say is that I miss it.<br />
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I've never in my life have strived to be normal, or to be like anyone else, and I still don't, but I do? I know, I know...I probably don't make sense to you, but to me it makes perfect sense.<br />
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Maybe normal to me, is having a sense of freedom - I miss it so much. I miss hanging out with friends, going out, going to art shows, going to concerts, weddings, parties, gatherings, bbq's, and I especially miss the time spent with my husband and son together as a family, doing family things, having outings and celebratory dinners like birthdays! Sad...I miss it all. I admit, I miss social gatherings.<br />
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My life for the past 2 years has been pretty vacant, and my social calendar has diminished...my date life...what is that? My normal life, my life to what I saw as normal has slowly diminished.<br />
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This weekend (was) (is) Halloween weekend, and no, I didn't do anything fancy, or go to any special party, but I made the most of it. I'm having a great weekend, I feel normal. I laughed, I smiled...I felt a little freedom, I felt like a grown up for a little while, I felt pretty, and I felt loved.<br />
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I had friends, and family over, just a small gathering on Halloween night, and I felt genuinely happy because I felt safe and comforted. We carved pumpkins, popped popcorn and just enjoyed each others company....that made me feel normal.<br />
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Today, I went to visit a friend and her daughter at a festival, I ate junk food, painted my face and did some shopping...I saw some friends I hadn't seen in years! And it made me feel normal. What is normal? Normal,is a safe, comfortable place that people with insanely "normal" lives take for granted. People live normal lives, they live safe lives....taking no chances.<br />
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Right when I got home, I went to my mother's room to take her to the restroom...my mother had peed on herself, and was having trouble passing fecal matter...I had to wipe my mother's privates, I did. Afterwards I made her a snack and gave her a piece of candy I bought from the festival. She was happy. My normal day had come to a stop.<br />
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I am not normal. I take risks. I take chances. I took the biggest risk of my life, I quit my job 2 years ago to care for my mother who has had Dementia for the past 4 years. I took a chance on my life, on my family...I took this chance and I am winning this battle, although my mother is declining - I am helping improve her quality of life...I'm doing this on my own with the help of my husband who has made sacrifice after sacrifice, with the help of my son who has done the same thing - made sacrifices. Sacrificed normality, the feeling of safeness...this is a difficult thing. I am eternally grateful to them.<br />
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Normal is overrated. Normal will always be there...I think I'm better off this way, but it's nice to visit once in a while. Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com2tag:blogger.com,1999:blog-3859381799524691703.post-10510724799043100032014-09-12T14:21:00.001-07:002014-09-12T21:39:10.472-07:00Things get tough<i>When I change mom, I squat down quite a bit, I also do this when I take her to the restroom- it's hard on my back...I do this 6-8 times a day, but because of yoga, my body has become stronger, but as I'm pulling mom's underwear up, and sitting her down so I can put her socks on, she bends over with her arms wide open to hug me, so I stand up and let her hug me, and I hug her back. I laugh and say...why are you hugging me, and she keeps hugging me, then says "God Bless You" so I say thanks mom, you too - then she stops hugging me and asks "oh, where is God" and I laugh, and say well, I think he's in your heart and she tells me, I guess I believe that. (but in a very slow, quiet shaky voice I have to strain to hear).</i><br />
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So mom has been suffering worse with her incontinence and although I take her to a restroom break every hour. Today, just 30 min after she used the restroom, she peed on herself. Not only did mom pee on herself, but she took her pants off to pee on the floor in her room. I actually slipped on the urine as I went into her room to help her - thank god for the swifter wet wipes....I am literally stocked up on them because you never know when an accident can occur! Lucky for me, our provider does all the cleaning in our home, so I manage to find the energy to clean up after mom's accidents, although it can get very old and very annoying. I have my good days, I have my bad days just like everyone else.<br />
I've been dodging the fact that mom needs to wearing a protective pad, or adult diaper throughout the day, but I think it's so uncomfortable that I'm trying to avoid it as much as I can. Because mom has been peeing more often, I put a pad on her at 5 pm, but still take her to restroom breaks, using this as a backup, and it has worked.<br />
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Ok, so aside from that, I've been reading a lot more lately on caregivers and those who care for their parents. I've come to know and realize that through statistics, over 80% of caregivers do it alone, meaning they get no relief from other family members except for maybe the occasional 2 hours a month if they (we) are lucky. Lucky for me, with my own hard work and research, I qualified for a provider who has been with us a little over a year - I am so grateful to her, she really comes through when I need her, and sometimes swaps hours when I (we have something to do). I work with her schedule, and she works with mine. Funny how a stranger can turn into someone you value and count on daily.<br />
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So it's been 4 years since mom has lived with us here at home, and it's been almost 2 years since I've quit my job to stay home with mom full time to care for her. A lot, and I mean A LOT has changed in those 4 years. If you could walk in my shoes and see things through my eyes - living with my mom, living with this disease day to day, hour to hour, not trying to count the minutes, but taking it 1 day at a time just to survive the strain it places on the caregiver (me) and my family. I'm amazed at how resilient we have become, and amazed that it has worked as long as it has - no one has fallen apart, and this is because of the tremendous support I receive on a daily basis from my husband. He helps talk me through moments where I want to give up - or moments where I'm crying and not knowing why. I can't imagine doing any of this on my own without him.<br />
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Things get tough, things get emotional and life waits for no one. Mom still has life left in her - so she deserves whatever I have left to give when I can.Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-14933020294742285902014-09-05T22:39:00.002-07:002014-09-05T22:49:24.963-07:00TiredThere's a never ending price that comes with taking care of a parent with Dementia. I was sick for 4 days with high fever, swelling, headaches and I'm mentally/physically exhausted. I'm angry, and I'm hurt, and I want to give up because I'm doing this alone and I have so much resent that's coming to the surface. I've realized that you can count on NO ONE and that NO ONE will ever be there for you.<br />
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I'm tired. Nothing more to say.Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-49325011573591196792014-08-25T21:18:00.000-07:002014-08-25T21:18:28.684-07:00A feeding tube?Got 300 hits on my blog since last night, thanks for that. I try to be upfront and honest, and not take my readers on a bullshit roller-coaster ride and I hope you can appreciate my honesty.<br />
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I swear there is never a dull day in my life, although there are days that I wish were filled with nothing because I need days off too. People don't seem to realize that what I do is far beyond a full time job, this is someone's life, health, and well being on the line,that someone being my mom. The scope of all this is very real.<br />
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Mom had all the nurses laughing at her doctors appointment today. I took her in for an eye infection, but ended up getting several other tests done so an hour appointment turned into a 3-hour venture and my back is killing me from standing practically the entire time because mom wouldn't sit still, or while the nurses and doctor were giving her exams, etc it was me who'd dress/undress, shoes on/off, hold her still...all that. All those things you do with your 20 pound child including taking them to the RR and checking her diaper, giving her snacks, etc...I get to to with my 100 pound mother and it isn't easy.<br />
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So aside from my exhaustion, mom had the nurses laughing. She asked the main nurse if she even had a diploma, and said she didn't know what she was doing...she said some pretty off the wall stuff, but mom was tired and frustrated as well because she had no idea what was going on, at least we had a laugh.<br />
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During our visit, the doctor suggested I take a depression test, she said I didn't look like myself, and looked worn down. I told her that I was and she took some time to sit and talk to me about what I go through as mom's primary caregiver. I was a little shocked, had no idea that I was physically portraying on the outside what I've been feeling on the inside, I guess with her expertise it was easy to detect. :( <br />
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I also had a conversation with the doctor about mom, her weight, her eating and how far she's declined. The doctor said she will eventually need to be on a feeding tube, maybe sooner than later, and hearing this reality this caused a lot of anger, pain, fear inside of me.<br />
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I'm afraid. No one seems to realize how fast she's declining, and how serious it is, and how hard it is for me, for us...just how hard it is. No one gives a fuck and that's not ok anymore.<br />
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People are selfish and I'm disgusted by it.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-77555498920946722152014-08-24T22:32:00.003-07:002014-08-26T19:11:49.804-07:00Life goes on It's been a while since I've had an update. I temporarily closed my main fb account because I needed a break from all of the fake happiness posts, and drama that people enjoy getting into although they say otherwise, lol...so annoying, not to mention all the cry baby crap and complaining...I can't believe people get so bent out of shape over a stupid broken phone, or lost keys...it's laughable, and I feel sorry for people like that, they seem soulless to me. Anyway, my Life with Mom fb page is still open and I try to update as much as I can without coming across as being depressed, or bitter.<br />
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Yes, everything I post is through my perspective and through my personal experience spent with my mom as her primary caregiver, my husband is her secondary caregiver and NO we DON'T get paid for this, are you fucking kidding me?! I can't believe how ignorant some people are, caregivers don't get paid...so ridiculous.<br />
So yes, some of my posts might seem as if I'm depressed because I don't sugar coat situations, I do however hold back on ALOT of what I go through as a wife and mother, and even as a daughter, it's sad, but real...very real, and I try to share as much as I humanly can without putting all of me out there on a platform but you see, I have to learn from this situation, this is a life experience and if I don't learn from it, or educate others in the process, I feel uninspired and as if I'm letting mom down, and when I'm uninspired, I just might break.<br />
I don't know, it's hard to explain. I do the best that I can with what and who I have. My hubby is my best support, he's quite amazing. His support has been a true testament to our 20 years of marriage. No one knows what we go through as parents, and as a married couple, or as a family; it takes a toll. It hurts deep when you have no one to turn to, or count on for any type of support, so when I mention my husband, I mention him with the utmost respect because it's MY mom, yet he helps and sacrifices so so so so so so much and more and he is the one I turn to, and depend on..<br />
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<span style="background-color: rgba(255, 255, 255, 0);">I just need to say that if you've never taken care of a sick elderly parent who can do anything for themselves, and who depend on you for food, water, showers, sitting, standing, eating, changing, grooming, lavatory assistance, and more including nursing them when sick and taking them to doctor's appointments all 7 days a week and you still have room in your heart to judge that person who does all of those things, I feel very sorry for you. I don't know how people can be so silly and ignorant, I don't know how highly judgmental people even function in our world, I mean...worry about yourself, judgmental people are weak, insecure people and I want nothing to do with them, (and neither should you); I need all the positivity I can get, because I am surrounded by my mom's sickness and inabilities 24/7 - it dulls me on the inside and hardens me, it doesn't make me soft, or weak, it turns me tougher...but there's a piece of me that won't ever give in to the toughness, a small piece that wears so thin, and that's afraid and that often feels lost and alone, but those are my emotions, no one will ever get me on that level...This is the hardest thing I've ever had to do. No more to say, until next time. Life goes on, I guess.</span>Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-76387844718075898522014-08-01T18:25:00.002-07:002014-08-01T18:33:38.683-07:00TodayPicked green peppers from our back yard and made a veggie omelette for breakfast. Summer is almost coming to an end, looking forward to the fall, but I'll miss Robert as he goes back to teaching, and Moses as he's back to his full time schedule with work and school.<br />
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After breakfast, hubby and I went to see a 3D movie at the Bistro, it was good...I laughed a lot, and we shared some nachos. It was fun.<br />
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Moses spent the entire morning, and afternoon trying to renew his lost license, this should be a lesson the be extra careful when it comes to these things; he was at the dmv for 4 hours, but had to leave to be at work on time so he will have to go back on Monday. It's part of growing up I guess.<br />
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Made mom a sandwich and some cucumber juice for lunch while Robert spent time with the dogs. After mom finished her lunch, she took a nap and I laid down to do some reading by the window in my bedroom. It's been hot lately in the 100's, but the day light is perfect for reading. I can't read by artificial light, I've tried and it's too distracting, gives me headaches. Robert will often find me reading in the dark, a dim lamp is ok, but overhead light messes with me.<br />
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Mom got up from an hour nap and was hungry again, I gave her some homemade yogurt with honey and we did a little yoga; she complained as usual. Yoga and exercises are getting harder for her, she has pretty bad balance, is snarky, and has trouble moving around in general.<br />
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Some good friends gave us some gift certificates to some restaurants so we all had take out from Santa Fe Steakhouse for dinner; they have the best calamari and I opened a bottle of champagne, we finished that and sat down to watch a movie. Mom was not in the best mood so I was dealing with her confusion, she wouldn't stop asking us the same questions and started pacing so we turned off the movie while I took a walk with her, helped her in the restroom then put her in bed to watch tv for an hour, before I put her diaper on her then falls asleep.<br />
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I hope mom stays in bed tonight; I'm pretty tired myself. The rest of our evening will be spent sitting by the pool then a movie in bed if all is well, but you never know. Goodnight friends.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-14206925237224467592014-06-18T18:07:00.000-07:002014-06-18T18:14:51.627-07:00What I did on Mother's DayI know it's been a while since I've posted a blog update, but did I ever tell you what I did on Mother's Day?<br />
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Well, my mother was very constipated and couldn't use the RR. She was pushing and pushing and complaining about the pain and I felt horrible because there was nothing I could do to help her, I massaged her intestines while she sat on the toilet, and gave her water and prune juice from a straw. My mother was on the toilet for over an hour that morning.<br />
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She pushed more, and fortunately "it" started coming out, but still was VERY difficult for her so I went to the kitchen and put on plastic gloves, got a trash bag and some wipes. I actually pulled feces hard as a rock out of my mother's rectum using my hands covered in gloves. I did gag a few times, because it didn't come out easily...I had to prod several times and it was a horrible smell since it was "backed up fecal matter", at the end of the endeavor I had to shower and make myself vomit.<br />
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Since then, it's happened a few more times. I got her some suppositories so it makes it a bit easier, but my mother is unable to communicate with me clearly so I have no idea when she is constipated until it happens and she's on the toilet.<br />
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Yesterday I went through the same thing with her because by the time I knew she was constipated, she was already on the toilet with feces half way out of her so couldn't place the suppository inside of her.<br />
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Mom moves a lot slower than what she used to and is not active. She gets her 2 walks a week and her stretches 3 times a week and drinks water daily as well as eats prunes and fibrous foods...it's not what she's eating, not eating, or doing that causes her to be constipated...it's that her body has slowed down significantly.<br />
<i style="color: #61636a; font-family: 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 11px; line-height: 15.399999618530273px; text-align: justify;"><b><br /></b></i>
<i style="color: #61636a; font-family: 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 11px; line-height: 15.399999618530273px; text-align: justify;"><b>People with cognitive impairment have an increased risk of constipation, fecal impaction, and stercoral perforation. Immobility, a decreased awareness of thirst, and difficulty in communicating pain and discomfort can all contribute.</b></i><br />
<i style="color: #61636a; font-family: 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 11px; line-height: 15.399999618530273px; text-align: justify;"><b><br /></b></i>
<i style="color: #61636a; font-family: 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 11px; line-height: 15.399999618530273px; text-align: justify;"><b><br /></b></i>Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-22842387884206460102014-05-22T10:58:00.000-07:002014-05-22T10:58:14.606-07:00A lot on my mind, yet nothing at allHello,<br />
Just stopping in for a quick update. Just because I'm not writing or updating doesn't mean there's nothing going on. There is always something going on - we are constant; we don't stop even while asleep. Our minds are always working, our hearts are always feeling and our souls are always searching, at least it is from my perspective. <br />
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Just like our bodies and minds are constant, so is mom. Mom is constant; she might not be predictable, but she's always going, even when it appears that she isn't, mom is going through different cycles and changes and can never quite adapt to a "normal" schedule and if she can't adapt to a schedule, that means I can't either, so needless to say - I'm ever-changing.<br />
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Here's the thing with me...I expect the unexpected. I expect the most outlandish circumstances and behavior patterns when it comes to mom so I'm never all that surprised. I'm very adaptable - I'm like a chameleon, interchangeable. It's not chaotic, it's subtle. As much change mom goes through, she's also subtle and she's the least dramatic person I know. Mom doesn't cause scenes, mom doesn't speak out of place, mom doesn't interrupt, mom doesn't get involved when it doesn't involve her; mom is quiet. Mom is a simple person, mom has never been into jewels, name brand bags, shoes, cars, etc. Mom lived a simple life and did what she enjoyed and kept to herself except when she didn't.<br />
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Mom's personality is sheltered, quiet. I was never close to my mom, and I don't feel I've learned much from my mom at this point in my life - maybe I have, but can't see it; I don't know. I think not knowing mom so well has me making up for lost time by taking care of mom and learning from her, not from her as a person, but from her situation. Not being close to my mom growing up hasn't stopped me from caring and loving her - it has actually made me curious to the type of person mom was. I never really knew my mom. I can say things that mom liked. Mom used to love Captain and Tenile, Linda Ronstandt, Dolly Pardon, she loved Olivia Newton John, mom loved fairy tales, mom love poems and rhyme, mom loved The Wizard of Oz, mom loved Gone with the Wind and mom loved Jane Fonda - because of Jane Fonda, my mom grew to love aerobics and exercise then later running - she loved it with a passion, she even started running races and getting 1st in her age division time and time again - she built walls of trophies. Mom ran marathons - mom participated in triathalons. Mom did all these things, but not with me and not for me. Mom did these things for herself; they were her escape and I respect that, but unfortunately I can't relate.<br />
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In mom's situation right now, I can see some things in mom I never did...I see weakness, fear, I see mom become annoyed, I see her anger, her pain...I see her sadness. I see all these seemingly "weak" traits, but have to tell myself that this isn't mom - it's her disorder, her dementia. Sometimes it's hard to distinguish because I never really truly knew mom. Maybe we never really do know one another - we only know how that person can make up feel, and know what we see.<br />
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Here is a good thing: I see a funny side to mom. I see mom's sense of humor and I can joke with her because I know she enjoys laughing. Sometimes she can't figure out when I'm joking because of her condition, but the times when she's able to are fun times. Mom also has an extended vocabulary. She enjoys using her words which is a little sad to me, because she is constantly searching for words and they sometimes don't make it out of her.<br />
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All of this said and done - I have to say that this journey has been an interesting, soul searching<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-14997403171642594762014-04-10T09:47:00.002-07:002014-04-10T09:53:08.426-07:00This is the life of a Caregiver<div class="separator" style="clear: both; text-align: center;">
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I recently applied for extra provider hours through the Star Plus Waiver services program from Superior. I was interviewed and asked a list of questions. I became very emotional during the interview and broke down and cried. I felt overwhelmed and realized everything that I do for my mom from the list of questions I was asked.<br />
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I cook for mom and feed her every day. I change mom every day (maybe more than once if she has an accident). I help mom in and out of her bed every day (several times a day). I take out moms chair and push her in to eat - then help her out of her chair every day (several times a day). I often cut moms food for her. If mom watches t.v. - I turn the t.v. on for mom. I brush moms hair every day. I try my best to do things with mom when I'm not feeling tired, overwhelmed or depressed - it's hard. I stopped doing things for myself like exercise and eating healthy because I'm busy getting mom to exercise and eat healthy and then get too depressed to love myself. If my son catches me crying - I pretend I have something in my eye or tell him my allergies are bothering me. I don't want him to see me crying.<br />
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Sometimes mom doesn't want to eat - she fights me with it. Sometimes mom doesn't want to take her meds - she fights me with it. Sometimes mom doesn't want to shower, change or exercise - she fights me with it.<br />
Without a provider I shower mom, with a provider I STILL SHOWER MOM. I take mom on walks, I take mom for coffee and once a month, I take mom to have lunch or dinner at a restaurant. <br />
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I read to mom. I schedule all of mom's medical appointments, I take mom to all of her medical appointments (monthly - she has 2, sometimes more). I drop off moms prescription and pick it up at the pharmacy. I give mom her meds. I read about mom's illness and I give her natural remedies such as tumeric, coconut oil, flax and chia seeds, fish oil and vitamin D...I go to the health store to buy them and I give them to her. If mom needs new undergarments or clothes - I go and buy them for her.<br />
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If mom has an episode - it's ME who sits with her and calms her down, if mom can't sleep...I can't sleep because she will not stop knocking on my door. If mom is scared, it's me who calms her. <br />
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These were some (not all) of the questions that the interviewee went over with me.<br />
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<b>This is the life of a Caregiver</b><br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-46677482745246073322014-03-25T20:34:00.001-07:002014-03-25T20:48:11.044-07:00Providing assistanceInteresting that some people that I know have the huge misconception that I get paid for taking care of my mom. No, I have never received a penny from any agency. When I first made the decision to leave my job I thought about being a paid provider for my mom, but at that time was told I couldn't be. Fortunately it worked out in my favor because I ended up qualifying for paid caregiver relief to give myself a break, so I chose an agency and they helped hire a provider for my mother who comes Mon-Fri 4 hours a day. (Those are our qualifying hours). The provider is actually there to relieve ME of my usual activities with mom during the time she is there, so this gives me time for myself, but not time with my family because my husband is working and my son is working and in school during those hours, so family time or date nights are rare, but that's ok because were doing a good thing being there for mom.<br />
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The paid provider cooks for mom, makes sure she eats and takes her meds, changes mom, showers mom (I shower mom when the provider doesn't show up and on weekends). The provider also does stretches with her, and does her laundry and helps with some housework. That's what a paid provider does...me, well I'm a caregiver and my time with mom is 24/7. This morning mom woke up at 6 am because she wet the bed so I had to clean her sheets, mattresses and clean/change her. The other night, mom woke up at 2am and was hungry so I gave her a snack. Last week there was a night where mom didn't even sleep so I laid on the sofa making sure she didn't get hurt.<br />
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Having caregiving assistance is great help, but no amount of help will ever replace the life I used to have with my husband and son before mom got sick 4 years ago.<br />
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I don't know what to think sometimes. I'm blessed and happy to be spending time with my mom, but I'm also tired and fight depression almost on a monthly basis. Unfortunetly I sometimes turn to food, then gain weight...then I start eating healthy and exercise. I often skip meals because I don't like preparing or cooking food for just me, and by the time I get mom's lunch ready, and sit her down to eat, I've lost my appetitie.<br />
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Some friends have reached out to me and that has helped me take my mind off of things, I also watch movies, listen to music and read books. I should probably do some more walking. I used to take a lot more walks with mom, but she has arthritis in her feet and walks very slow so it's easier to take short walks 1-2 times a week.<br />
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I try to keep as busy as possible and recently took up couponing..I've been saving ALOT of money plus keeping myself busy.<br />
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I'm lucky to have what I have, and lucky to be where I am and give thanks everyday.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-42957664295375646752014-03-14T22:07:00.000-07:002014-03-14T22:07:13.730-07:00Reality CHECK listI recently applied for more caregiving hours and special at home hospice care for mom and I. I see mom spiraling deeper into this illness and want to be prepared with as much physical support as I can get that's offered. Reading about Dementia, studying it and trying to look for help and plans available for patients and caregivers is a lot of work. The other day I got an at home visit with an govt. health provider where I received an interview to apply for extra at home care/treatment. I was asked about 50-80 questions all dealing with moms health, doctors and the amount of time mom has lived with us.<br />
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The interviewer said it was rare for someone my age to be married with a family, she then said it was even rarer that I was caring for my mom in MY home, she said most caregivers sell their homes and move into their parents homes when they are their caregivers. She commended me, but tbh mom didn't have a home, she had an apartment...she then said well, in those cases the elderly usually end up in homes so I should still be commended.<br />
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All that said, I was asked a list of questions that I am always prepared to answer from the meds mom takes, to her income status, to our living arrangements, to how the illness has progressed, etc., but what I wasn't prepared for was the list of check off items that I do for my mother as her caregiver on a daily, hourly and minute to minute basis. I felt overwhelmed and began crying because it was at that very moment that I realized just exactly how much I do for my mom and for how long of a time I've been doing it for. <br />
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I was exhausted just answering the questions and became very emotional knowing that I truly am my mothers caregiver and that I am the one constant in her life.<br />
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I do hope I get the extra help which would include provider services 7 days a week for a total of 32 hours...it would also include help in disposables for mom, and nurse visits, plus some therapy. Please cross your fingers, send good vibes, prayer, etc. for us.<br />
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Goodnight.<br />
<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-48379507042173599642014-03-14T20:47:00.000-07:002014-03-14T22:18:06.085-07:00Don't call me momMom recently spent 4 days with her sis while my husband and I got to enjoy some R&R and much needed time together. My aunt enjoyed having mom there as much as mom enjoyed her company, but she had alot of difficulties. Mom wouldn't take her Meds, argued about taking showers and unfortunately she had an episode. My aunt explained how worn out she felt especially since mom didn't sleep one night... been there many times. I feel bad for my aunt, but she was do understanding and explained that it hit her emotionally, spiritually and physically. ..yep. Since mom had been home, she had napped, had dinner, took Meds, watched tv, had dessert and washed up before bed. <br />
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After I put mom to bed, she got up a few more times...the first time she got u.p I gave her some yogurt and fruit for a snack. We sat in her room a little and she laid down again. mi.mutes later, she came into my room asking where I was. I'm here I told her....walked her to her room and out her in bed again, this time with prayers. 10:45 p.m. She got up again, she was standing in the living room, I took her by the hand and tucked her into bed. Goodnight mom I said...no, good night mommy she told me. <br />
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<b>Don't call me mom</b><br />
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Walls hold us inside of this world we're supposed to know as reality.<br />
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It's suffocating and dreary.<br />
I'm alone an teary.<br />
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Your hands are tiny bony digits that shake and tremble. <br />
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I'm a broken doll, never been assembled.<br />
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You call me mom, but I'm no figure to the only mother I've ever known<br />
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...a daughter to the great unknown.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-47663133853180388862014-03-06T23:35:00.001-08:002014-03-06T23:45:27.641-08:00Thankful Thursday<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw6rj2MHlEeJ-Mr6buqaGf_cMPjnzEsg_cr49uC16sOEtTCDxv8JQRXq-4zG69KXKmhJJEz3pvsMev-JtKxQjXo3e4t6hU-YbJRSeHV3YBc7UBi-lAaxIkUUWE0rFE8hkPHgj2aAoTA8/s1600/1911613_474255316007972_1283707632_n.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw6rj2MHlEeJ-Mr6buqaGf_cMPjnzEsg_cr49uC16sOEtTCDxv8JQRXq-4zG69KXKmhJJEz3pvsMev-JtKxQjXo3e4t6hU-YbJRSeHV3YBc7UBi-lAaxIkUUWE0rFE8hkPHgj2aAoTA8/s1600/1911613_474255316007972_1283707632_n.png" height="314" width="320" /></a></div>
Today, like most days can be was a little hard on me. I actually heard my mother say these words: I want to die. <br />
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Mom was going through an episode and felt that she was in danger, she thought people wanted to kill her and she then said, "and I want to die". <br />
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This hurt me so much - although knowing mom wasn't in a moment of clarity, I still took it seriously and to heart so I sat and talked with her trying to figure out exactly why she was saying these things.<br />
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Throughout our conversation I told mom she had Dementia, and read her the definition of the illness and let her know that she was feeling, hearing, seeing and thinking these horrible things because of her illness. I then told mom to focus on all of her blessings in life and she became a little more calm. We started naming all of the things in her life that have made her happy then I told her it would be a good idea to do that everyday and to follow the list of happiness by thanking god. She did. She said a prayer and thanked god. I told her thank him some more...over and over again, every day....I told her to keep thanking him. I don't know, but afterwards mom was wearing a crooked smile and I asked her if she felt better and she said she did - I know it was true. Thanking god for what we have and who we are, what we were, who we will be is a huge blessing. We are blessed and we are thankful.Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-59398550471187326282014-03-02T22:34:00.002-08:002014-03-02T22:34:29.991-08:00Seth Rogan Testifies about Mother in law's Alzheimer's I'm happy to know that there are people making a stir about this horrible illness. What Seth Rogan has to say about the illness is very poignant and heartbreaking:<br />
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<a href="http://abcnews.go.com/Entertainment/seth-rogen-opens-mother-laws-struggle-alzheimers/t/story?id=22686934&ref=http%3A%2F%2Fwww.facebook.com%2Fl.php%3Fu%3Dhttp%253A%252F%252Fabcnews.go.com%252FEntertainment%252Fseth-rogen-opens-mother-laws-struggle-alzheimers%252Fstory%253Fid%253D22686934%26h%3D6AQH270L-AQEViC2mFOCoo_XxzwY2szFhKKEPuizy5ffCRw%26enc%3DAZM-xfiz9IxhzokueELfpKNh79IltajlrBlRPO-j6C3nLtQUsfKj2XChXBrmM-q8YC4LGQXdxTvO-TFVg6uhSBLh%26s%3D1" target="_blank">Seth Rogan Testifies about Mother in law's Alzheimer's </a><br />
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I just wish our government cared more about providing help and awareness for the people this illness effects. <span style="background-color: rgba(255, 255, 255, 0);">Wow...just wow - this is definitely not a priority to our government leaders although More than 5 million Americans are living with the disease. "Alzheimer's disease is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older." Sad. Please read this, you will be surprised!</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);"><a href="http://www.foxnews.com/entertainment/2014/02/27/seth-rogen-talks-about-alzheimers-disease-at-senate-hearing-calls-out-senators/" target="_blank">Seth Rogan blasts Senators for skipping his Testimony in support of Alzheimer's </a></span><br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-71268049607177953732014-03-01T13:57:00.001-08:002014-03-01T14:02:30.982-08:00The Peter Pan syndrome<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNI8XtCQT9D168OFFCXei0Gwk3Wv9_uYmrVJLOI_uSFDO6-Ten-HMhRq4-Y_gTtUiAaoptMo16ShvQ27J9Ppsn02C5UbcF7fnh5NivAS6Syw0Rj9vAJTJIHcld4ksyvSmeu9pAvMOakQ4/s1600/mom+watching+Peter+Pan.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNI8XtCQT9D168OFFCXei0Gwk3Wv9_uYmrVJLOI_uSFDO6-Ten-HMhRq4-Y_gTtUiAaoptMo16ShvQ27J9Ppsn02C5UbcF7fnh5NivAS6Syw0Rj9vAJTJIHcld4ksyvSmeu9pAvMOakQ4/s1600/mom+watching+Peter+Pan.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom watching Peter Pan</td></tr>
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Today I woke up early to run some errands and do some shopping so I fixed mom an easy breakfast of cereal, banana, yogurt and strawberries along with her meds. My husband stayed home with mom while I was gone and when I came back, he told me that my mom had been asking him about information and asked him if he had the information she needed. He said no, I have none to share and she said ok, well I'll wait for the boss ( she might have been referring to me figuratively) but she could have actually thought that she was in a work setting waiting to get information from the "boss". I think it was the latter, because when I got there mom approached me and asked me to share the files with the premiums with her...<br />
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Now, I've blogged about this before - mom often thinks she's at work and will look for files and ask questions about policies for certain people. What do I do in situations like this? I answer her questions, but I also try my best to reassure her that it has been taken care of and not to worry. This works at times, others not.<br />
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When it doesn't work - when mom is not satisfied with my answers, I have to either ignore her and let her continue to pretend and act as if she is in a different place/time, or I can try to find ways to calm her so she's not moving and pacing around so much. Dementia patients can (and mom in particular) have tremors and bad balance. Plus mom also has a slight curve in her spine and arthritis in her feet, so when she's pacing back and forth it wears on her yet she doesn't stop until her "episode" as I call it gives out.<br />
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Today, I lead mom to the sofa with a lot of pillows to support her back, gave her some water and some fresh fruit...then I put on Peter Pan. Growing up mom was big on singing us lullaby's nursery rhymes and she used to love cartoon and fantasy characters like Red Riding Hood, Pippi Longstocking, Raggedy Ann and others. I know children's cartoons and stories have a calming effect on mom (and on me too). So we sat down together and have been watching Disney movies all afternoon.<br />
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There is something about Peter Pan - he makes you feel young and encourages you to be forever young, an eternal child and it's a good feeling. Watching Peter Pan and watching mom laugh and enjoy the movie has me thinking about her illness and her own syndrome...it has me reflecting. I am her mother figure now, I play the part of her parent showing her and leading the way, I play the role of helping her and tucking her in at night, saying prayers with her and making her pancakes as a special breakfast. I'm the one to make doctor's and dentist appointments for mom and taking her to them. I play the role is saying a nursery rhyme to mom to see if she remembers them...I am that figure in her life. She is regressing, not just because of her age, but because of her illness, it's inhibiting, much like the "Peter Pan Syndrome" can be inhibiting and hold you back, except for mom...no psychologist can ever help heal her mind to later live a "normal" life outside the Peter Pan Syndrome.<br />
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We might be watching fun movies right now, but she is still going through her motions on the inside...I know nothing can stop it, it stops on it's own, but I can do my best to try and take her mind off of it. When the movies are over, she can go back to thinking she's at work, or maybe...her "episode" will have passed. You just don't know with these things, they take on their own life-force.<br />
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For now, we're ok and for now - growing up is not an option.<br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-49628053528449107322014-02-27T11:35:00.002-08:002014-02-27T11:35:46.393-08:00Some facts<table border="0" cellpadding="0" cellspacing="0" style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px; width: 525px;"><tbody>
<tr align="left" valign="top"><td style="width: 10px;"><img alt="" height="10" src="http://alz.org/images/spacer.gif" style="border: 0px solid;" width="10" /></td><td style="width: 301px;"><strong>Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. </strong>Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.</td></tr>
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Did you know: <span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><i>Alzheimer's disease is the sixth leading cause of death in the United States.</i></span><br />
<span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><br /></span>
Did you know: <span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><i>More than 5 million Americans are living with the disease.</i></span><br />
<span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><br /></span>
Did you know: <span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><i>1 in 3 seniors dies with Alzheimer's or another dementia.</i></span><br />
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Did you know: <span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><i>In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion.</i></span><br />
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Did you know: <span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><i>Nearly 15% of caregivers for people with Alzheimer's or another dementia are long-distance caregivers.</i></span><br />
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<span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><b>Please watch:</b></span><br />
<span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><br /></span>
<span style="background-color: white; color: #343637; font-family: Verdana, sans-serif; font-size: 13px;"><a href="https://www.youtube.com/watch?v=BXnZt5VMjZY" target="_blank">Alzheimer's Facts</a></span><br />
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<b>For more information please visit:</b><br />
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<a href="http://www.alz.org/alzheimers_disease_know_the_10_signs.asp" target="_blank">Alz.org</a><br />
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Please visit my community facebook page:<br />
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<a href="https://www.facebook.com/LifeWithMom" target="_blank">Life With Mom on Facebook</a><br />
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<br />Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-65246983846991755252014-02-27T00:49:00.002-08:002014-02-27T00:59:58.929-08:00Life with Mom<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9-LVvZxB6EbeNtprZRKC5Y4HFEyCo0XVvT-fQLmuVryZj1qGF8K5NkWN98C5wix_Y8C7jiASG8A3_ibXtJfrFrjRzcmiCI4eAAExrct3j3_3_VfQWuX9KYqN-8t5ZwFTBFTJpLjfgE54/s1600/mom+and+rosy.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9-LVvZxB6EbeNtprZRKC5Y4HFEyCo0XVvT-fQLmuVryZj1qGF8K5NkWN98C5wix_Y8C7jiASG8A3_ibXtJfrFrjRzcmiCI4eAAExrct3j3_3_VfQWuX9KYqN-8t5ZwFTBFTJpLjfgE54/s1600/mom+and+rosy.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom playing Bingo or "Chalupa" with our provider</td></tr>
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Here we are. A day in the life. Here I stand...a view from the side, not involved today...not playing games, but rather observing and just taking the day for me. I have finally let go. When our provider is over, I have learned to leave the house, to take a nap...to do things for me, or just go out for coffee and run errands. I need to practice to stop being such a worried "mom" to MY mom.<br />
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But sometimes I don't think I can...Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com0tag:blogger.com,1999:blog-3859381799524691703.post-61303758827347919262014-02-26T23:37:00.000-08:002014-02-26T23:52:50.401-08:00That PlaceThank you for following and staying up to date with my blog, photos, fb page and my posts. A lot of the times when I'm writing my posts, I'm coming from a place a lot of you have probably been, but I honestly believe that I'm more familiar with<b> "that place</b>" because that place has now molded itself into a piece of who I am today, because in the past 4 years mom has lived with us,<b> "that place</b>" has become something I've coped with and have accepted as a part of me that won't ever leave me. I try going through the days being who I am, but also trying to see mom from the reflection of her illness. I am me, struggling to see what my mother has been robbed of.<br />
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<i>I live in that place of rainbows in gloom</i></div>
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<i>Color in specks of gray</i></div>
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<i>I live in that memory far far away</i></div>
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<i>Where she sits, where she lays...in a field of cotton </i></div>
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<i>Where thoughts are alive and not forgotten.</i></div>
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EV.</div>
Evanahttp://www.blogger.com/profile/08972472969895234637noreply@blogger.com2