I feel like a traitor!

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susanf

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Ruth, vent away. It's healthier for you, not good at all to keep it to yourself.
I for one take note of the cals concerns and will make sure I will be non demanding. (i'm very functional now)I gave my husband specific instructions that he get someone in for me when my daughter has activities or parties. I do not want her to miss one day of her childhood.
 

Mrs C

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I think our loved ones with ALS live in fear of the unknown and have every right to freak out. I tend to join in when that happens so we freak out together. :) then we both apologize to ourselves and each other and move on. You have to air your feelings and frustrations or you'll have a melt down one day and it will undoubtedly be worse than anything he could dish out. . .
 

cukita99

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my son doesnt join forum becuz he says it depress him. he tells me what he feels even if it hurts me but then we both cr y together..
 

Mrs C

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I used to be the same way Cukita99. But then I find that more and more I need answers at a time of day when I can not reach my clinic. I get them here.
 

Chase_Corin

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Ruth I know how you feel, not exactly but in the ballpark. My dad still has most of his mobility but his speach is going quickly. He gets frustrated and yells which dosn't help the matter because we can't understand his yell any better than his normal speaking. Lately he has been on a kick about telling us how to do things (us being me and my mom). Things that mom and I have been doing for years but he feels the need to instruct us how to do things to his specifications. My mom actually had to get up and leave the house after he told her how to butter his toast.

I sat down with dad after that and asked him if he realized what he was doing. And how his doing that made mom want to blow her top. Dad didn't even realize he was doing it, he just was trying to speak to keep his ability to speak from fadeing he didn't realize he was being condecending.

In our case my mom has me to work out problems with her and dad and as somone to talk to when you feel like your going insane. That is what this forum does for me and a lot of people who don't have an outlet of somone else that understands. And never worry about being a traitor to your PAL, they know you need to talk to somone about the trials and frustration this disease brings into your life. We are basically a support group, because a lot of us are seperated by countries if not states. We are one Big long distance support group.
 

ScarlettK

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I told Sis one day... in a joking way of course... "I am gonna knock you into next week... which day do you prefer?" I also told her that if she kept it up telling me how to blow dry her hair... I was gonna get some moose and give her a NEW LOOK! LOL

I told her "ring around the collar" has nothing on you, sis...cause if I left her on the toilet too long, she would have "ring around the buttocks".

Of course she laughed so much that we both were almost rolling in the floor. When she is grumpy I use laughter to help her "ease" out of the bad mood.

PALS can drive CALS nutzzzzzzzzzzzzzzzzzzzzz. But we won't go away... NOT EVER! I also threatened my sister with those words... she said OH NO!

So vent away, and let go of the guilt. We understand!

Kaye
 

Georgia Peach

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I have worried about whether I was being thoughtless by posting stuff on my husband's disease progression and how ALS affects us. He doesn't come on this forum so I feel I can be honest but I am still very careful about what I post on here and on CaringBridge. He hates it when my friends post on CB about how strong I am so I have asked them to be careful about what they post to us and to try to write something specific to him.
 

Alyoop

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A wise person once told me that when talking about another, pretend they are in the room with you and Choose your words accordingly. It's great advice but I have trouble remembering it, it's hard. That doesn't mean you can't vent or be frustrated, but just do it both appropriately and with careful words.
We vent at our spouses all the time.
So say what you need, pretending that your Cals or pals are reading it.
 

LizT

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thank you aly, you just gave me permission to continue to talk like a sailor on here, because thats how i talk to everyone. yay.
 

Alyoop

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Oh Liz, fire away lol. I will just put my hands over my ears now....lalalalalalalala. Are you done yet .......lalalalalalalala.

Hugs
 

tammyg

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It is ok to vent, go can't hold it in. Don't you let him take the wind out of your sails. I think sometimes he may feel it's not fair that he's suffering and you are going about your routine. He may be a little bitter about how unfair life is. And know it is just going to get worse. Hang in there.
 

NiKky

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Ruth, I can relate to how you feel. Don't think of yourself as a traitor because you come onto this forum for support, you are NOT throwing him under the bus at all! This is for you and your own mental well being. Just think of it as venting as opposed to "throwing him under the bus." I just joined this forum & this is actually my first post. I've read a lot of them, some broke my heart, some gave me hope but I saw yours and couldn't help but think how much you remind me of my mother. My father has finally been diagnoised (they couldn't/didn't diagnoise it for almost a year) and being the close family we are, the frustrations are sort of like a chain reaction for us.. I feel like my father doesn't do things to his full ability and most times, he won't even try. He'll tell the nurses and aides that come over not to do half of their job because he expects my mother to take care of it. My mother is 62 years old with a bad back but she still bends over backwards and does everything he asks for. Lately, he's been having a lot of cranky days so my mom gets the brunt of it. Then she gets frustrated and aggravated and then when I come home from work, she finds something, ANYTHING, to flip out on me about. I know not to take it personally because I understand she's just upset and frustrated, and although, it has caused a few fights but for the most part, I've become the person my mother confides in, vents and cries to. Not that I mind or don't like it, but I do think if my mother was to join this forum or one like it, where she can talk to people who are going through the same thing we are, it would help her tons. Point is, you aren't going through this alone & I for one, am here for you if you ever want to talk & vent & just get things off of your chest because I see how much better my mom feels after doing same. Don't feel like a traitor, all you're doing is expressing your feelings & you should never apologize for your feelings because you simply just can't help the way you feel!
 

murphy

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This is my first post and reply to a thread that I'll make short and to the point.

Thank you so very much for being honest, raw, and having the guts to say what is eating your lunch!...."stew?" lol.

I would share copious stories and remarks from my PALS that would make you feel better about venting. It happens. Sometimes the patient I focused all my energy and love on was not the nicest person towards me.

I bit my tongue so often I think I developed a calous at the end of it. Anyway, it makes a soul weary and also made my hair fall out! Stepping outdoors always helped me but for a fleeting moment. Or, I'd think of a funny memory to spontaneously remind him of with a smile plastered on my face.

Sometimes I just let us both be in a mood that required our own personal 'do not disturb' signs hung over us like a sandwich board.

Hang in there. You're building spiritual muscle.

--murphy
 

tammyg

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SPIRITUAL MUSCLE. I like it. I must look like a body builder in side COOL!
I always remember what my husband said one day about the kids. Boy 16 with Dyslexia (another long story) + daughter 18 who knows it all (she must have gotten from my husband LOL) They would come home from school in a bad mood, I would say I never did nothing to you, why you being so mean. I didn't pee on your Wheatie's. My husband would say, they might have had a bad day and can't get it out at school so they take it out on the people they are close too. Just let it roll off like water on a duck, take it with a grain of salt, instead of making you cry. I am a Cancer and are tooooooo emotional and get my feeling hurt toooo easily. Though I think age does make me more verbal, when that happens they say I am just a B#tch. It sure does feel good though to get it out instead of my hair falling out too from nerves, and "stewing" over things for days, weeks years. Everytime I would say stuff when I was younger, my dad would say "all thats water under the bridge" So you don't get it out, and dwell on it forever. I think that bridge must look the the Bay Bridge by now. Then I feel guilty.
I totally understand. It just sucks getting the brunt of it. Maybe during "Tea" we should make those VooDoo dolls that you stick pins in, throw against the wall, bend their leg up to the shoulder backwards, No make that the "After 5 Pub" more fun that way. Ask Liz hehe. You Guys rock and you know it:)
 
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