Old 07-13-2017, 07:32 PM #1 (permalink)
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Default It's a pity party kinda day...

It seems like I have been having these quite often lately...

I just hate this d*** disease...

It's just been a all around crappy day.

I have picked Cliff up out of the floor twice in the last two days.

The dog puked in the floor, chewed up my shoes and the computer cord. Then she was tearing up the back of the lift recliner. Oh and she bit me and gave me a big bruise after I bathed her and was towel drying her.

My coworkers are going on work trips that I usually go on.

Everyone else is going on with life like nothing is happening.

No one seems to consider that maybe we are barely holding our head above water over here...

My PALS doesn't even talk to me... It's like I only exist when he needs something... I need tissue... The toilet is stopped up. I need my meds.

ALS Sucks! We were such a happy couple! UGH!!!
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Old 07-13-2017, 08:58 PM #2 (permalink)
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Default Re: It's a pity party kinda day...

Oh man I am so sorry and you are so right, ALS does just suck. One of our dogs had some disturbed behavior too, they feel what happens around them for sure.

I know what you mean about having been so happy, about being lonely now, just the whole thing.

Hugs, just hugs.
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Old 07-13-2017, 09:19 PM #3 (permalink)
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Default Re: It's a pity party kinda day...

Can I come to the pity party? I need it too. This whole thing just sucks. There is no normal anymore.
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Old 07-13-2017, 10:06 PM #4 (permalink)
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Default Re: It's a pity party kinda day...

We used to have a pity party thread just for these vents, I think it's appropriate we keep this one for all venting - rightfully so, lives are turned inside, outside and upside down!

Hugs, I'm hating ALS with ya
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Old 07-14-2017, 05:36 AM #5 (permalink)
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Default Re: It's a pity party kinda day...

I'm so sorry for what you're going through.

ALS is a nasty disease. I hate it with all of my being.

Hugs to you,
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Old 07-14-2017, 10:46 AM #6 (permalink)
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Default Re: It's a pity party kinda day...

Oh, Sooner, I so relate! Some days are just too hard. It's like when is enough enough?! Not one more thing!

I try to stay light and cheery around my PALS, lots of joking around and being silly. So Saturday I went bouncing in with his feeding and meds singing, "They say it's my birthday. Gonna be a good day..." He turns and looks at me, no expression at all, then goes back to his western on the TV. No smile, no thumbs up, no nothing. Wow! (He can't talk, but he can smile, shake his head, and give a thumbs up or down.) We used to have so much fun together.

Thankfully, not EVERY day is like that--and here's wishing you a quiet, peaceful day and a phone call from a good friend. Hugs.
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Old 07-14-2017, 03:08 PM #7 (permalink)
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Default Re: It's a pity party kinda day...

It's so hard when you don't feel at all silly, but you try to be upbeat and silly just because, and you get that totally flat look.

Deep breath and do it all again xxx
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Old 07-15-2017, 08:46 PM #8 (permalink)
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Default Re: It's a pity party kinda day...

I want to join the party!

My wife has already lost both her legs and the right arm is now going.

I got sick a couple of weeks ago with a bad cough and then my wife got it last weekend. Incredibly, I had the foresight to call the ALS Association right when I got sick. I asked and got a cough assist and suction machine. I spent all Saturday night / Sunday morning last weekend helping my wife suck phlegm. The way she was struggling to breath scared the hell out of me. For a while, I thought I was going to have to take her to the hospital but we made it through the night. I got zero sleep Sat., Sun. and Monday. I was going to post about it on "cals roll call" but half way through writing the post my wife started yelling at me for staying up so late and I ended up scrapping the post.

IHSS gave me 70 hours a month. Yea right...

And finally, everyone has stopped calling me. I literally didn't get a phone call or even a text from a friend or family member for a whole week. I guess they're tired of the pity party.

To all the CALS in this thread and all the CALS in the same boat as us, you have my pity.

Rob
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Old 07-15-2017, 10:23 PM #9 (permalink)
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Default Re: It's a pity party kinda day...

Sooner, huge hugs. I so know the feeling. And yes it comes in waves. Some days better than others. There is nothing good about this disease.

Friends? What friends? I get that. And the life moving on without you. I get that too. Many days I feel like I live on a completely different planet.

Just remember, you got this! We all got this!! Just take it one hour at a time and you'll get back to a better place soon. Oh and avoid sugar at all costs, it makes things worse.

Hugs,

Sue
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Old 07-16-2017, 08:54 AM #10 (permalink)
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Default Re: It's a pity party kinda day...

My mom came over Friday morning. We reorganized 3 closets and I got rid of a bunch of stuff away. We moved a bunch of stuff out of Cliff's office where he sits all day so that I can hopefully use the hoyer in there when he is in the floor next time?!

After going through everything, she and I cleaned the whole house which I am so happy about. I was completely exhausted by 2 pm after tearing everything apart the day before.

Wehn she left, I realized that no one was gonna come mow the yard so I did that... Battery was dead on the mower. Got that charged and I was almost finished when I ran out of gas... UGH! Got the gas, finished the lawn.

Cliff's feeding tube was stopped up... UGH! Can I jump in the shower first please?! Showered and helped with the feeding tube.

Oh and the bills still need to be paid, formula ordered, deal with his saliva meds, computer battery is jacked...

I soooo need to figure out how to put some of this stuff on the helping hands site. I just feel like everything besides the yard needs to be taken care of by me... Somehow I need to figure out how to let others help. Not that anyone is REALLY offering... I asked mom to come help me clean.

Off to go shave Cliff and trim his beard...
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Old 07-16-2017, 01:38 PM #11 (permalink)
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Default Re: It's a pity party kinda day...

I agree I've never been good at asking for help!

Do you have many people registered on your lotsahelpinghands page? Can you put up there you need someone to take charge of organising the page - if not can you email everyone and ask that? Someone taking a leading role may just ben the real thing you need to start getting the ball rolling on getting you help?

If not, vent away, pity parties are totally allowed xx
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Old 07-16-2017, 02:10 PM #12 (permalink)
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Default Re: It's a pity party kinda day...

When you say everything but yard needs to be done by you, sooner I wonder if you are thinking of tasks in too big chunks? Example " clean house" versus vacuum downstairs, dust, change bed linens? It is easier to let go of small pieces and likely easier to get someone to sign up for a relatively small and discrete task. There is a chance too they would say at the end hey anything else? I have 15 minutes to help some more.

Train people to call when they are doing errands if they live nearby so they can pick up milk or whatever also perhaps en route to their task at your house or on their way home

It might help to write down everything you do for a week then do the breaking down of tasks. I do think it helps to have a variety of things as people have different skills and interests. It is hard after a while though, people do drop by the wayside, even the well intentioned
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Old 07-16-2017, 10:10 PM #13 (permalink)
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Default Re: It's a pity party kinda day...

Nikki I really like the way you break that down. I also understand how hard it is to ask someone to come over to just vacuum. I always feel like I have to be doing something with Brian when they do, when what I really need is 10 min to rest. However I always end up feeling like if I sit while they vacuum they'll wonder why they're doing it.

I guess mostly because they are not there 24/7 and don't see what goes on. Any suggestions anyone for that? I think that is what makes it so hard to ask.

Sooner - someone could order formula for you. Or why not have a friend of Cliffs give him his shave and beard trim. Brian loved the times he had a make doing it because they know how to do it more like them doing it theirselves.

Your day sounds like mist of mine, frazzled

Hugs,

Sue
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Old 07-17-2017, 02:44 AM #14 (permalink)
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Default Re: It's a pity party kinda day...

While they vacuum you need to pop down to your fav cafe and have that coffee and then come home with some supplies you grabbed on the way to make you feel like you just had to go out ........

Or just lay it on these people - you are exhausted! Let them know that if you can actually stop for a little time and something gets done your QOL hits an all time high.

If you can't, I do think that if someone can take on being your case manager they can probably explain it better than you.

Nikki breaking it all down is great because some people might even take on a few jobs that way, rather than come over 'just to vacuum' they may choose job 1, 5 and 8 and come do those 3 things
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Old 07-17-2017, 07:31 AM #15 (permalink)
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Default Re: It's a pity party kinda day...

Good suggestions guys! I really need to get a handle on this... I am really gonna try. I will let you know how it goes.
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