I am DONE!

[erinjca]

I have had it with ALS. i am tired of always being touched, always waiting to eat and get ready on everyone elses time, having my kids snuggle with everyone but me, repeating myself, new caregivers etc. I hate the way people chew food and gum or they breathe too loud and I get really irritated. sitting still day in and day out sucks. i hate fighting in court for custody of my youngest daughter. there is nothing that makes me happy or gives me the drive to fight. this sucks.

 

[halfin]

Here is a kind of fantasy I invented to give myself some comfort.

Imagine that instead of you getting ALS, your child had gotten some degenerative, fatal disease. Maybe ALS or something similar that hits children. Now an angel appears and offers you a choice. You can turn back the clock and take on your child's illness. You will be the one who acquires the fatal disease, who has to go through years of hardship and suffering and then death. But your child will be healthy and well. Would you say yes, make this sacrifice for your child's benefit?

All over the world there are parents who are heartbroken because their children are sick and suffering, and I think many of them would say yes, in an instant, in a heartbeat. Yes, they would take on this burden, to save their child.

Maybe we with ALS are those lucky ones who were given this choice and had our wish granted.

Like I said, it's a fantasy, but it would be nice to believe that there is some meaning to this disease and that we are accomplishing something by living with it.

 

[hopingforcure]

Hal,
I totally agree. I would give myself ALS a million times if I could prevent my son from ever having it or anything else like it. I am facing a tough time with illness in my family, in addition to myself, without saying more, I would do anything to prevent ill from my child. I think your post made a lot of sense.
We have a member on here, who lost her son-in-law to cancer, and her daughter to ALS, within a very short time. She dealt with such grief, and is a lovely person. Another member we had, was dealing with liver cancer, her husband was dealing with cancer, I believe, and they lost their only daughter at 29 to ALS. So many people are dealing with so much.

 

[hopeful warrior]

erinjca~ Well, I must say you are in good company. Most of the people I've met on this planet are "done with" something. Our forum mates are definitely "done with" ALS on some level every day. ALS has proved to be a horrible, ravishing beast for all involved. Feel free to let it out.

I am a caretaker for my husband. He is beginning his fourth year living with this. We have one child who is a teenager living with type 1 diabetes. I believe I understand your frustration and heartache. I can honestly tell you I am very sorry for your disappointment. I don't want to sound trite, but hang in there. Feel free to let it out here. We get it.

 

[strikeout]

Erinjca, I'm so sorry you are dealing with all of this (though you did make me chuckle when you said you hate how people chew food and gum). Hope this feeling is just a temporary funk and things will look up a little for you.
Halfin - what an inspirational and beautiful way to look at what you are going through.

 

[indigosd]

I can not imagine how overwhelming and frustrating it must be and you have every reason to just be mad as H--l! I lived for a time in Mechanicsville so I know just where you are in those lovely rolling, tree laden hills full of history. Hal, I am going to share that story with Web-I think if he looks like it from that perspective it will lighten the load that he carries on this journey. Thank you :] H4C and Hopeful Warrior, such heart advice for all of us. I hope that everyone gets a small measure of the joy that is mine today as I see the bright sun reflecting off of the snow on the Prairie and remember how the coyotes were singing their songs at dawn to awaken that sun! hugs, Kay Marie

 

[lms9258]

Dear erinjca,

I am a caregiver to my mom. She has both frontotemporal dementia and ALS. She doesn't complain very often, except to say that she is tired of all the medical devices and people who come with them. I do know however, that she gets tired of people asking her to write everything down on her board because she can't be understood, people telling her to take small bites of food and swallow what's in her mouth before she puts more in, what she can eat, when she can eat, when she can go to the store, and just about everything else.

On the other hand, it can be very emotionally and physically draining caring for her. Anticipating all of her needs day in and day out. I actually feel the way you describe how you're feeling sometimes. Like every little thing is irritating me. I try never to let this spill over while I'm with my mom, but it has been affecting my relationships with my husband and kids when I'm at home. (I take care of my mom at her house). I feel a lot of guilt for this, because I am not the one who has this horrible disease.

I don't know what could make you feel better. I just try to really make an effort to do what she wants when she wants it, and try to be very patient. Sometimes I just tell her I'm so sorry that she has to endure all of this. Maybe some PALS could give some advice for caregivers.

What Hal wrote is absolutely true. My oldest son had leukemia when he was young, and I can't tell you how many times I wished that I could take on everything he had to go through.

Laura

 

[imanzcan]

I have had it with ALS. i am tired of always being touched, always waiting to eat and get ready on everyone elses time, having my kids snuggle with everyone but me, repeating myself, new caregivers etc. I hate the way people chew food and gum or they breathe too loud and I get really irritated. sitting still day in and day out sucks. i hate fighting in court for custody of my youngest daughter. there is nothing that makes me happy or gives me the drive to fight. this sucks.

erinjca, I read your post, and my heart goes out to you. I am totally out of words......... I myself had a son that died from als at the age of 37 in june of 2007. I wish there was a cure for this damn disease. I can see your frustration when waiting to eat, depending on others for whatever..........but why would you hate the way others chew their food, able to eat, and the way they breathe? Are these folks your loved ones? Even if they are not, what makes you hate their ability to do all of this. These poor folks....are they aware of this? May God bless you. You are in my prayers.

Irma

 

[Blubear]

erinjca, first of all WELCOME TO THE FORUM! I do not personally have ALS, its my dad. But I can understand your resentment of others eating and chewing etc. It's not hate, its resentment. Its not personal, I know. You must be soooooooo frustrated! Now, you have to take a look at your own signature and say that to yourself right! Can you be taken outside at least for some fresh air on a regular basis? It must be hell fighting in court custody of your child. Can you at least be put on a schedule that you can count on? People at work get hungry and cannot eat lunch until a certain time, and they adjust to it. I hope in time your frustrations and anger pass, although you have a RIGHT to be angry.

Hal-- your fantasy is great! If I had this disease, that fantasy would really help me get through it because I would walk in front of a train for my daughter if it meant saving her life!
Kay Marie----When I get stressed, I am going to think of your snow filled prairie with the coyotes waking you up in the morning. It sounds so peaceful!

Hugs,
Kari

 

[joelc]

Hal, I agree 100%. Thanks for saying it! I don't think there is a parent who would not take a nasty disease so their children could be spared! I know I would without a thought.

 

[handinhand]

I am glad that you have a place to vent... We all understand and have felt the same way at times... I see that you are a new member. I can tell you that for me I was at my worst in the beginning... It does in some ways get easier as time goes on. emotionally i mean. I still have a day or my moments that i can hardly bare it. We can and have every right to feel this way. Just know we will listen and understand. You are not alone and we are always here for you. Big Hugs, linda

 

[Marjorie R. Wilcox]

Erinica, my heart truly goes out to you.

And halfin, you put a jewel of a thought there in place immediately, as a response to erinica. What you said, shook me up and put me in a better frame of mind. I was in tears from reading erinica's vent. What you said about your fantasy is beautiful, knowing that you are suffering too.

People on this forum are shining diamonds to me. I am overcome at this moment.

 

[Zaphoon]

Hal,

I have to say that I'm sorry you have ALS but very glad you are a part of this forum!

 

[irismarie]

Just adding my heap of love and sympathy. It stinks to have this disease and to be helpless. We can only cling on to what CAN give us pleasure - beauty or laughter or love. YOU will find all of that here and I am sure you will have some to share, also.
Love to all
Irismarie

 

[paleshia]

dear erinjca, yep there are many days...no...everyday...i wish this would all go away too. but apart from a miracle, that is not going to happen. so here i stand with hal, i have thought the exact thing. when i heard about the young 16 year old girl who had als...i knew if i were her mom, i would take it for my daughter. i have a teenage daughters and a young son....i would give my life for them or have als.

it helps, this perspective...hope for a purpose we may never know. we all suffer here on earth...we share your suffering.