Hate-filled rant

[Katie C]

Oh! Another thing I hate... phone calls from my mother in law with very thinly veiled suggestions that I am not properly caring for her son, when it's what I spend what seems like 29/8 trying to do, while his FLD makes it like trying to deal with a cross between a spoiled 3 year old and a grumpy 80 year old man! Followed by "So how's your mom?" "She says she loves me." Ooooookay. I'm glad. Now if she or her other son would like to actually DO something, I have a few suggestions.

OK, vent over. For now.

 

[shelly2612]

I hate that Eddie can no longer hunt with his friends. I hate that he can no longer go out into the woods by himself. I hate that he can no longer hold or wrestle with our grandson, can no longer drive. I hate seeing the look on his face or the disappointment in his voice when he realizes he can no longer do something he did just last week. I just hate ALS. Not only for me and Eddie but for each and everyone of us

 

[KinzaDAF]

Oh Lisa, you said exactly what *I have been feeling! It hurts so much to see what this disease is doing to my Dad. I too wish I was smart enough to THINK OF SOMETHING to reverse his symptoms and rid him of ALS.

Debbie

 

[kelly]

THis seriously made me cry. Every day ...it is painful to think about what our loved ones can't do..and try to focus on the few minor tihngs that they can do. When people ask me how my husband is doing...the list pops in my mind of what I really want to say. Instead..we just have to keep with the strong face....and move forward. I have meltdowns several times a week...so the rant is a great way to release. We can all relate..this disease is maddening.

 

[KinzaDAF]

I like to imagine myself doing like the father in the movie "Lorenzo's Oil" and pressing doctors into having some kind of ALS summit, and doing research online that will suggest to me some kind of treatment I can then give my dad,.... and work to perfect it.... and then reverse my Dad's disease. ( And help tons of other people too! ) Hey, I can dream *can't I?

Debbie

 

[tdamess]

this really stinks but seem's we feel the same way of anger and hate and the wish to find the cure and to reverse it as wellit is all in our heart's

 

[kedevlin23]

I hate this disease.

I hate what it's doing to my dad.

I hate that he gets frustrated, angry, depressed, and discouraged.

I hate that my mother has to see her husband in such pain, both emotional and physical.

I hate that Dad can't do what he used to or what he wants to.

I hate that he's scared.

I hate that I CAN'T FIX IT.

I hate that I'm not smarter so I could find a cure!

Normally, I'm well-balanced. Tonight, I'm really, really angry.

Tonight was my night to feel this way and I know there are going to be many, many more nights I will feel this way. I'm JUST SO ANGRY!

Thank you for posting this.

 

[Dana Razo]

I am angry my husband has ALS,
I am angry the disease is so UGLY
I am angry he is suffering
Since diagnosed in Feb. 09 the disease has been very progressive and I am just so damn ANGRY and SAD, feel helpless and hopeless.
We are celebrating our 2nd Anniversary on Sunday and I'm afraid it will be our last!
And.... I am afraid of being without him.

 

[mare]

Dana-

"And... I'm afraid of being without him."

I think that speaks for all of us wives.

 

[MtPockets]

Re: Hate-filled rant (Get the ugly out.)

I am so thankful for the Forum being here for you to be able to vent your anger. We all need to let it out or explode in some kind of rage. Please feel free to continue.
I just wanted to share how I personally have gotten beyond the anger and hate. At some point, I finally realized the anger was poisoning me and the people around me.
Yes, I am dying.
I finally got to the point of where I could say that and accepted it.

Now what do I do with the time I have left?

That has taken months if not years to work out. I have found peace in my faith in God. I also have learned to focus on living one day at a time, and trying to do something during that day that I and others will enjoy. Overall, some call it making memories, good memories. It may be just sitting with one of my 16 grandchildren or four children and telling stories of my life growing up. Giving them things to remember about Grandpa and what my life was like. Talking to them about what difficulties they are facing in life.
There are hundreds of things I can focus on to help make each and every day a little better for all of us. I pray when I am called home, they will remember Dad loved them, Grandpa loved them, and that I was not so drawn into myself, me, me, me, that I forgot them.
Their lives will go on far after I am gone. Can I make the passing just a little better? Who knows, but at least I am going to try.
I hope and pray that today is better than yesterday, and that I am a better person each and every day until I am gone. Yes, I hurt, I have bad days, and I always will. But, how do I react to them?
Just another view I pray you will consider. But do not let it keep you from venting.
Get the ugly out. So the good can shine through.

 

[hopealive]

I hate that the memories I have of my mom are full of ALS. She was a strong, vibrant, caring and funny woman. ALS has no place in my memories of her.

 

[Gelthling]

I took my mum to a wedding yesterday - I had to help her with her makeup and even with her trying to get her lipstick on she had so much difficulty - she was holding the back of her head so that when I put her makeup on her head wouldnt fall back and stay there....what do I hate about this disease is seeing such a beautiful lady struggle to even keep her head up, and all the simple little things we take forgranted being so hard for her. The fact she can't say thankyou, congratulations, or join in conversations with her girlfriends. The fact she left the wedding when the food came out so she wouldnt have to watch everyone else eat, and so her best friend who got married could have a good time without worrying about her. I hate this disease because it takes everything!

 

[Theresa]

I can relate to this so much. My mom has ALS diagnosed oct 2008. I get so angery at times and cant stop crying. I dont know at times were to turn. I am a nurse and hate it also that there is nothing I can do. cant talk long but will be back later.





Theresa

 

[KeeKer]

I just want you girls to know that eventually you start to remember them as they were before the disease. It's been 10 months and I'm starting to see my brother as he was before ALS when I think of him.

 

[Katie C]

Really KeeKer? That's awfully good to know. Especially when I'm having one of those sad days. Thanks.