Bye to the old, hello to the new

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. 

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. 

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. 

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.                                               

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.

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.
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.

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. 

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.

Overcoming things

It 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.

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.
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.

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?
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.

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?

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.

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.

I'm so beautiful.

Summer vacation of the mental kind

We took 2 vacations this summer

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.

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. 

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.

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. 

Xoxo

The sad in me

I 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.

Looking at life, I see white and I see raising my son as an accomplishment

I see blurred events, I see myself crying while alone, remembering the happy in me
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.

Being alone, feeling abandoned, feeling quiet and disjointed, feeling confused and trying to remain what I appear to be, strong.

Sadness, I hid it well.

A break

Blog 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.

Sometimes I live in pain. Sometimes I live through pain.
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.

I love you so much mom.

Wounded

It'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.

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.

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.

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.

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.

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.

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.

another beginning?

Mom and I almost 2 yrs. ago

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...

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.

We stopped seeing her doctor because there is no more care that she can receive, her Dementia is at a very fragile state.

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.

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.

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.

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!

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.

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.