Another Rant

[Jason's Dream]

I am soo tired of people saying things like "I am such a strong women", putting me up on a pedestal, or people talking down to me in thier speech to me, calling me "Little One", "Child", and Kid. I am not strong, I am human, and have a hard time, ups and downs like anyone else. I am nothing special, I am just true to my words and vows. Doesn't mean that this crap isn't getting to me, that I am not crumbling inside and having a hard time. You've never spent the time to ask or be there to support me. I am not a child, a kid, or a little one. I am going through some life experiences and am facing things you have not (in your old age) have had to face, I am dealing with things most people my age aren't, and I think my life experiences and what I am going through deserve enough respect, to not belittle me by calling me a child. Its offensive to me, and feels like it trivializes my life experiences or what I am going through.

Right now, I am done with most people in general. If you only want to set and watch the crap I am going through (like a spectator) and not be there for us, or help us in any way, then I am done. We are not a side show, or a "thank G*^ we're not them". We are human beings, with human feelings, and I am soo sick and tired of feeling on display and like a side show circus. I am tired of people saying they are here for me, and if I want to talk, blah blah blah.. then when you take them at thier word, they scatter away like cockroaches when a light is turned on.

I am tired, exhausted, and needing someone to be there for me. This is hard shit to go through and I have my moments when I need a TRUE FRIEND. Someone that won't blow shit up my ass, put me on a pedestal, and say platitudes of "it'll get better", "we're here for you", etc. Put your money where your mouth is, and tell it like it is. People say they are "praying for you", or "don't know how you do it", or "you're a strong woman".. when they don't know what to say and are scared to say the truth. We got dealt a crappy hand, this sucks, and its okay to have a crappy day, and freaking be there for me.

I am tired of people pushing thier religion on me, telling me a nice "wishful thought" of, we will be reunited again, etc...Lets be real people, all I know is what I see. I see people live, people die. Some people get dealt better hands then others, but elsewise, I haven't seen evidance of an afterlife, not that its not a nice thought, but I don't know any of that, and to have pushy nurse aides singing old-timey souther gospel "heaven" songs, without even knowing us.. its a bit put-offish, and gets me mad.

Sorry about this rant, but I feel like I can't talk to anyone in my real life anymore, without pushing more people away. They say they are there for me, and are here whenever I want to talk etc, and when I take them up on thier word.. they scatter to the wind. I am tired of platitudes, and fair-weather friends.

I am tired of this holding pattern. I am tired of hurting.

Okay, rant over.

Sorry if this if this is offensive to anyone, just needed to scream, and no where to scream.

 

[Brother]

Exactly! My sister Marsha got what you wanted in the form of Davonne her caregiver. A big part of it was that DaVonne was a straight shooter and no bullshit. Save the baby talk for uhm ... babies.

 

[Katie C]

Oh Becca honey... I SOOOO get everything you said. I wish there was something magical I could say that would make it even a little better... and I didn't have little ones to care for! Please.... vent whenever you need to... that's why we're here right?

Sending hugs

 

[brooksea]

It's OK, Becca. Most of us know where you are coming from! You were not offensive.

I'm not near the stage where you are and just want to pull my hair out some days. And I don't need people saying stupid things to me, like whatever they say will help me. NOT. They have no clue.

Can you put on some music you or your husband like while those "Swing Low Sweet Chariot" nurses are there? I'm partial to Cherokee wind instrument music, as it's so calming. That might freak um out and they'd get the hint! I know you probably don't have time to go purchase something like that, but it was a thought. Anyway, you can play the radio or something, unless your husband gets irritated, and tell them to silence their hymns so he can hear. If you have Roku you can subscribe to Pandora and create your own radio station full of music.

As for people saying "call me anytime." I know where you are coming from. You call them and they don't answer the phone or something comes up while you are talking to them or it's the uh huh uh huh uh huh conversation where you know they are not really listening.

I getcha!

As far as pedestal thing...I dunno. You are on it whether you want to be or not. How many people could do what you are doing without walking away? I've found out lately that many spouses leave when the other has a serious or terminal illness. Yeah, you are on the pedestal and will be for the rest of your life. Ain't no way around it. But I understand if the person that is putting you on the pedestal is the one blowing smoke up your ass and insincere. That would piss me off too. But you are still on the pedestal.

Sending you hugs and hoping you can get the nurses to change their tune!

 

[grandmommyk]

There is no reason for apology. I have felt so many of the things you mentioned. I guess the feelings of being alone, not having anyone who understands, that the job required of you is bigger than you can handle, that you don't want the hand life has been dealt you, but that you have no choices left in life, that it just isn't fair.
I am one of those religious people who believe in God and the afterlife, and the things you mention about the nurses would bring comfort to both me and my husband. However, nothing you have said offended me. This battle is just too hard. I am glad you had a place to go to vent and people here who understand. We all need that.
Wishing I could help in some way.

 

[epkennedy]

I hear ya sister friend. Oh I hear ya! HUGS

 

[Jason's Dream]

Thank you dear friends. I soo appreciate your candor and am soo glad to hear that I didn't offend anyone.

My parents are highly religious as is alot of people around us. We attend thier church, because his family has been MIA, and he feels like it is family being there for us, and we just don't voice our non-religious beliefs. I learned long ago, in my parents religion, that if people think you don't believe the same way as they do, then they are obligated to try to convert you to thier beliefs. I simply don't need the extra headache of people trying to conform me to something I don't believe in, especially when life is already hard.

My husband and I are agnostics, although lately he has said he thinks there might be an after life. I dunno if there is or isn't. I think having a creator makes sense more then the "big bang" for very complex organisms, but I'm not sure about human obligation to worship and believe in something I can not experience with any of my physical senses. I also think, were I to be born in various parts of the world, we would have people trying to conform us to believe in thier religion, and whose to say one religion is right and one is wrong, or better then another? I have read in history where lots of wars and all were fought for the sake of religion. I can understand and practive trying to be a better, moral person and believe in self improvement, but other then that, I can not understand how people can believe in something that they have neither seen, heard, or experienced.

Sorry to get philosophical. I guess, I have had some bad experiences with religion and am comfortable with accepting what I believe and what I dont, and being honest about it, and "agreeing to disagree".

This past week, the pastor at my parent's church, his nephew committed suicide, and I'm curious how do you believe in a greater purpose when life circumstances hit you like that. Ten years ago my younger cousin committed suicide and he offered to talk to me .. now I am wondering how he is dealing with it, with the shoe on the other foot... and does it shake his faith?

I'm curious.. yet skeptical.. I am honest that I don't know what to believe.. I think its a nice idea.. and I guess I'd like to believe that I will see Jason again, but I can't believe in something that I haven't experienced or seen..

Just closing up in myself around the people in my life.. they really don't want to deal with or be there for me in the truer sense of the word... all "lip service"...I'll play nice and let them believe everything is fine.. that I am this super woman.. thats what they want to think... they don't want to know the truth.. that I am human.. I am scared.. I feel completely alone.. I don't know who I am anymore and have no clue where my life is headed now.. and that I am a complete emotional wreck.. that I am angry.. no one wants to be there for that person... just the one they can say thier fake platitudes...

 

[lms9258]

Becca, I'm feeling exactly the way you are. I'm too depressed to even come on and vent. Thanks for saying so much of what's going on in my life.

Laura

 

[susanf]

You have us even though we are all miles apart. You need to vent and have good reason too.

 

[ccurths]

I have had ALS for between two and three years. I can't talk or ear, bulbar onset. I would be lost without my faith in God and that when I leave this earth he has a home for me in heaven. We are all going to die, and no one goes through this life without trials. I would rather find out that I was wrong about heaven and believe than find out I rejected God and chose to live without him for eternity.

 

[caldona]

I believe in God also that's how I deal with this I can't see Jesus but I know I need him I can't see the air I breathe but I know I have to have it but we all have our own beliefs.
One of my complaints about what people say is I don't know how you do it. My reply anymore is do I have a choice.

 

[AKjo]

I had a thought, and in no way do I mean to minimize your displeasure of the helpers singing their hymns, but I know that sometimes I hum or sing and am not even aware I am doing it. Perhaps your aides are the same way - oblivious to their outward expression of their inner "music". Gary occasionally lets me know when my mindless tunes get irritating to him.

 

[grandmommyk]

I had a thought, and in no way do I mean to minimize your displeasure of the helpers singing their hymns, but I know that sometimes I hum or sing and am not even aware I am doing it. Perhaps your aides are the same way - oblivious to their outward expression of their inner "music". Gary occasionally lets me know when my mindless tunes get irritating to him.

I am totally amazed that you can hum or sing in the midst of all this. Rick and I have dealt with this so many years that I have finally come to a place where I am OK, and yes do sing along with the radio or hear a song in my head at times. It took me a long time to get here though. For years I didn't even laugh. The first time I laughed after finally starting to come out of my anger and fear, the sound of it startled me. That is when I realized I had not laughed in a very long time.

Dear Becca, you said you think that having a creator makes more sense in some cases than the Big Bang Theory. You also said you are not comfortable with something you cannot experience or see. You did say that you are curious, so I hope my thoughts here don't offend you. This morning i was in my backyard trying to get the chemicals in my pool right again. I saw a beautiful butterfly in my purple flowers. Earlier I sat down at my computer and saw a hummingbird through the window at my feeder. Although I do experience God in prayer, my Bible, Church and music, I also experience Him in His creation. I experience Him there with all my senses, and it leaves me in wonder of Him. I can't imagine that a creator so powerful, who put such care into His creation would than let man who is the very center of it just end. That though is my belief. I might wish that was yours too, but this creator obviously gave you free will and a choice. It would be wrong of me not to do the same.

As for ranting, l believe in God, but I have ranted many times. Sometimes even at Him.

 

[Katie C]

After losing 5 members of my immediate family in a 12 month period, including my mother, my brother and my husband, God and I are not on speaking terms right now. I mentioned this to a dear friend, who said that sounded perfectly reasonable to him. This friend happens to be a psychologist.... and a Jesuit priest. So I trust him.

 

[Barbie]

Becca, you have every right to feel like you do. I am also angry at god--and have serious doubts too about the whole thing. And, I am sick also of people telling me how great I am--cause I ain't! Just like you and every caregiver here, I get up every day and do what I gotta do.

You are at a terrible terrible place right now and My heart hurts for you. I wish so much you just had one person who was on your side there with you. you have way too much to deal with. I guess you will just have to settle for us--we are ALL ON YOUR SIDE EVERYDAY please don't forget that.