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BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
3,000
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
I guess I should probably not be on Facebook anymore because I am having a really hard time dealing with with the so inane and absolutely inconsequential status updates that people post. Things like "I'm so hungry, what will I have for dinner?" or "I should have another cup of coffee" or "My dog needs brushing". I mean who cares? You have a life, you can do whatever you want, just do it.

I'm sitting in bed waiting for a rushed visit from home care because my regular helper phoned AGAIN this morning to say that she couldn't come today. We gave her last Friday off so that she could go camping and play baseball on the weekend. Monday was a holiday and she called on Monday night to say that she injured her back so wasn't coming. All well and good except what about me? We have to arrange for home care and they just come and look after me and then leave. We've advertised but no one wants to work anymore, too busy having a life. Well I have no life and I'm just so pissed off at everything and everyone. We are spending thousands on renovations, I just hope I can find the help I need so that I can enjoy it when it's done.

My rant for the day,
Tired, dirty, hungry and totally depressed
 
So sorry Barry, you are entitled to one down day, but only one because we need you and your sense of humor
 
oh barry,i feel so bad for you and sad because your sad.........i hate that your down and wish i was able to come and help.
i feel so guilty if i moan because i know how hard you pals lives can be.
sending BIG(((HUGS))) AND SLOPPY XXXXX
 
Barry, I am so sorruy U R hacing a bad dau. We hjace thje sane probnlem hjere. Id doesm't mattre who it is (comtraxctor, helaht aides, lawn bouy) thjey seenm 2 work wjhem it's convemient 4 tjhem. I cam alwaus come u7p & jhelp U showr.
 
Barry - I hear ya. I have to admit that I am one of the one's that posts stupid inane things for my status. I am a caregiver, so granted, my view is a tad different. Trying to keep things light, ya know? :)

I can't imagine what you, or my PALS, are going through. I hope that you will find the care that you need and deserve.
Love and light
Meg
 
I am so sorry Barry to read your post. Yes, you have every right to think "What about me". Life just isnt right sometimes. You deserve proper care.
 
Barry my thoughts are with you. I hope you are able to find reliable care. I am sorry you are in this position.

Rox
 
Well, I just tested out my Depends. So far no leak and it's almost comfortable to have warm pants (and such a relief!). Waiting for a hour till my next home care visit to change me.
 
OOOOH; Barry, I am reallu sorey U R hacimg 2 go thru this! Thjese pepole shuold lose thire "license" to wrok.
 
Barry, if I can add my comments to those of your harem (lucky guy), I have found that ALS has really focused my awareness of what matters in life. I too am amazed the way many people fritter their precious lives away on inconsequential time fillers. Perhaps we have been given the opportunity to make our shortened live really count. That doesn't help I know with the day to day hassles of dealing with caregivers except maybe it does help put it in perspective.

Your anecdote about the Depends is kind of funny. I remember many years ago snorkeling in a wet suit in the Labrador Sea off Newfoundland for the first time. Even with the wet suit, it was chilly. I peed in the suit and still recall the soothing warmth spreading out under my latex skin.
 
Barry, I am not surprised you are so frustrated - you count on your helper for simple basic needs. What does surprise me is that you don't rant MORE and on a regular basis. It must be hard to maintain an even keel all the time, as you seem to. Sorry you are having a bad day - it can only get better, right?
 
Oh Barry, yesterday I was feeling so sorry for myself and how limited I am. It was raining outside and I was crying and contributing my share of moisture indoors, as I found myself just sitting, while others were so busy doing what I use to do.

I left FB along time ago when my life started changing and I recognzed my priorities were too.

The sun is out today and I am smiling again --We are all entitled to our "blue" days -- but you have been such an inspiration to me that I wish I could give you a kick-start but can't. Just know you are loved and do a lot for us PALS who are on the same path, with your shared experiences and your poetry, not to mention, your humor. :)


Hugs filled with smiles and giggles mixed with love and prayers for a better day tomorrow.

Diane
 
Barry you are correct, most people do not know what to do with their life, thus the inane posts on FB. Long before my diagnosis, I would say most people do not know what true life adversity is, instead they complain about soap opera problems. It is a way for them to get attention and make themselves feel important. Unfortunately in society today many people do not know what it is to think for themselves. They go with the herd as if they were sheep. Well when sheep are grazing they do it so blindly they have been known to fall off the edge of a mountain and of course if one does it often so does the herd.
You my friend are an Eagle. You soar above the herd, going your own direction and not making decisions blindly based on what everyone else does. You are a Leader my friend! You know what adversity is, you face it everyday and even on the worst of days your internal fortitude gets you through it. While your body is failing you, your true strength shines through everyday!

I hope you find a dependable worker and are able to enjoy the rennovations!
 
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Barry- just another reason why i wish we were closer. This sort of thing drives me nuts and keeps me up at night. i cannot stand it when my pals has to stay in bed for even one day, so i go even when i probably shouldnt. because when it all comes down to it, i could be so frickin ill with some bug, but life is still worse for him so i put him first, before even me. i would love to do the same for you.
i agree with what Ted said and i experienced that firsthand my whole life. I knew what i wanted, what i was and wasnt ok with, and had no problem expressing that. People tend to not like that... at all. No one can talk me into doing something i dont really want to do. its true, you are a leader- but you must give yourself permission to post more stuff like this on a regular basis. youve more than earned the right to and its good for you.
i dont like the thought of you having to sit in your wet depends... but hell, i dont like the idea of you having this damn disease.
i really hope your aide comes thru tomorrow, and if not, that you find a replacement pronto! I love you Barry. Hang in there.
 
Barry, yes... to all of it. Glad you had Depends where you could use them. I hope you get yourself a new and responsible aid, and I don't miss f b one bit. I have to say that so far, my hospice aide cares a whole lot about how I'm doing, so no complaints there. And Liz should be cloned--she'd have you comfy and safe.

You did indeed deserve to let it out--I hope this doesn't happen again to you, but you're going to love the renovation. I think things tend to get worse before they start to get better, and hope you're going to be seeing "better" soon!

Hugs--
Ann
 
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