WE live in constant TURMOIL!

[brooksea]

My husband has become so emotional about us not understanding him (we know about all the devices, but he won't use them at present). Plus, his EL does not help matters! He obsesses over every slight from our son, who's only 10.

My son is so ANGRY! He hates his life and wishes he had a NORMAL family! This has just happened over the last 6 months. Today while I was running errands, apparently all hell broke loose and a power struggle ensued between grown man and 10 year old. My husband will not let it go. This has got to STOP!

My self is stressed to the MAX!

I feel as if I'm being emotionally drawn and quartered.

Stop the merry-go-round, I wanta get off!

 

[AKjo]

Don't really have anything helpful to say - just want to tell you that I sympathize with you and can only imagine what you are going through with your son. Kids these days seem to have so much pressure from peers and certainly bring home an "attitude". Then you have your husband, who is in a whole other angry place, for a very good reason. That doesn't help you deal with it all! I'm a little to far away to offer any respite for you, but hope you somehow can step away and get a break. My 3 kids are all adults now - I do not know what I would have done if ALS had come to roost in our home when they were younger. Take a deep breath and be strong. I'm keeping my fingers crossed for you to have a better day tomorrow.

 

[joni51]

Oh CJ gosh I wish I had some words to help you. My husband is either depressed or gets mad easy and takes it out on me, but I know that it is not really him...it is this stupid disease. I am so sorry that you have this young son and are having to deal with his emotions too. Just know we are here to vent too! Hang strong....

 

[Jeannie]

You are in my thoughts and prayers~ Maybe though this will make your husband realize that a communication device could help to aliviate most of the miscommunications.
You are so strong~
Take care of yourself.
In friendship
Jeannie

 

[abbas child]

I was thinking earlier today you've been way too quiet. That is usually due to problems. I wish I had words that would help you. All I know is the two guys are awfully blessed to have you putting up with them. Crack your whip, CJ. Tell your husband you know Nurse Rached.

 

[brooksea]

LOL! While taking my son to therapy today, I told him that apparently his daddy got up on the wrong side of the bed today. He told me that I needed to tell dad to go back to bed and get up on the right side like I had told him (son) to do a while ago ("and it worked, Mom!").

My threats of leaving husband in PWC in the rain now fall on deaf ears. (kidding, for those of you that don't know me) I think he would rather enjoy it!

Thank you all for your support! I needed it very badly!

The therapist is coming over on Monday to meet with us ALL. That should be interesting!

God help the young children of pALS...not fair...not fair...

 

[sharona]

Hi CJ.
I am so sorry you are having to go through all this turmoil.I pray that the therapist is able to help your husband to see what this disease is doing to you & your family.He needs help to be able to cope & I pray that he does what is needed. God Bless.
love ya
Sharon

 

[tdamess]

i hated that man power struggle now my other son and his son are going thur it

 

[Miss]

I feel your pain CJ. My son snapped on Christmas Eve. He had finally been pushed to the limit. I hated seeing it. I hated that my husband couldn't see what a big deal it was. Since then, my son is back under control. He is calm and patient. However, I have glimpsed the turmoil he is suppressing, and it just kills me.

 

[Danijela]

CJ, I know you are strong, caring and intelligent, and will get through this. Having a therapist visit and talk to all of you should help, get, things out in the open...You will be a team again.



Take care, D

 

[catcaniac]

I do feel for you as well. I think we often underestimate how hard it is on young people living in the home with someone with ALS. As adults, we usually find ways to process through things because we have been through enough to know that being mad and angry really doesn't change anything and after a venting spell we tend to move on. Even though my son is 18 and Eric is his step-dad, he is wearing the stress all over him. He says only positive and will help any moment Eric or I ask for help. I asked him last night how stressed he is and he calmly said, "to the max." I am glad you have someone coming that may be able to help your family learn ways to cope with this awful disease. I only knew my son was holding in his stress because his assistant principal is a friend of mine. She had called to check on us and said that she could really see a difference in Caleb's smiles, etc. at school. So I realized that I need to talk to him more often and help him process things. Good luck with your situation as I feel lucky so far that my PALS rarely ever lashes out at anyone and mostly gets mad at himself or just frustrated.

 

[kelly]

CJ....would you ever want to talk in person.....I know this is all so overwhelming. I had to send SOS flares out last week...because I was feeling the same way.......HOW THE $%$%^ am I going to do this. Do you think it would help having my hubby write your hubby a note regarding the communication devices. His world is now filled with internet, just joined facebook, has done some incredible writing to the boys, and able to have some freedom intellectually. I know it is just a thought.....
You are doing such an amazing job...sounds like having your son in therapy was perfect timing. HANG TOUGH....I know you are...
L, Kelly

 

[mantaray]

Hi CJ,
So sorry you are having to go through this. I pray for you.
My husband is same. He got mad with me so often recently and everytime he need at least 3 days to cover his emotions no matter how hard I tried to make up with him. The day before New Years Eve, he got mad with me again, till today he won’t take his medcines and food regularly, he is three years old baby to me. I'm keeping my fingers crossed for all of us(CALS) to have a better day tomorrow.

 

[Katie C]

OK.. I was forming all these answers in my head and then saw your post that the therapist is coming over to do a family session. GOOD! He'll be able to get a feel for what all is going on, and probably have better recommendations about whether your husband needs a meds change or dosage adjustment etc. His last six or eight months, as the progress of his illness accelerated, we were changing Glen's psych med dosages constantly. As long as we could stay a little bit ahead of the game, it made life MUCH smoother! Hang in there!

 

[Pat Paine]

Hi CJ,
I am sorry to hear about the ongoing turmoil your family is in.
I am happy that the therapist will make a home visit. I am praying for your family
and hope your husband will accept the advice given.
blessings, Pat