Tired of his crap.

[DCL1964]

My PALS constantly says that I ignore his symptoms or don't believe how bad he is. I am sick and tired of this. All I hear from him is how bad he feels. Heaven forbid I complain about my neck or the tendonitis in my elbow because he rolls his eyes and changes the subject back to him. I've put up with all his little histrionics for over 30 years. He's a drama queen of epic proportions. Two years ago in October he told me he was so cold he thought he needed to go to the hospital because he thought he was bleeding internally. It was the first cold night of the year and I didn't turn the heat on because it was warm that day. All the aborted summer trips when we were younger because of panic attacks in the backseat of my dad's car. Not a week goes by he doesn't bring up either A) going to the hospital, or B) being unable to move tomorrow. I'm stressed out enough as it is without all this crap being said to me and about me. If it weren't for me he'd have no where to live. If I don't take him to his doctors, no one else will. I'm tired of being bombarded 24/7 with his doom and gloom attitude. Like I said in an earlier post, ALS owns him. I pray he gets to see someone from Johns Hopkins soon. I pray they tell us all this is due to his neck problems and it can be reversed. I don't want him or anybody else to have ALS. I'm not looking forward to what may be the future. I've already buried my parents. I don't want to bury him anytime soon. I'm just tired of him thinking I don't care. I started to cry in the doctor's office when they told us it was ALS. I'm the one who discovered and told him about this forum. I'm sorry about going on like this but it seems no one cares how I feel. Maybe I'm the one with the problem.

 

[CAHPAH]

There is nothing wrong with you. What you are feeling you share with many CALS. It can be a thankless job. Our PALS have a lot to deal with and it can take some time for them to come to some sort of terms with it. He is lucky to have you there to help and, given time, I think this will dawn on him. In the mean time feel free to rant here any time. We do care. What you are doing is an incredable sacrifice and each story is an insperation to the rest of us. Keep caring and keep sharing. Best of wishes to you.

 

[LauraW]

I'm so sorry you have to go through this. At times you almost feel like you're the one with ALS. I understand. He should not treat you like that. It is so difficult on caregivers and that is why we need to be able to step away from time to time and have our own lives. It has taken me a long time to realize this but we have to do for us too otherwise we become bitter and angry. Hope you can find a way to get away.

 

[abbas child]

I echo Laura's comments. I'm the patient with the disease, but realize that your job as caregivers is hard, regardless of how demanding or gracious your pals is toward you. Obviously a considerate patient will be a whole lot easier to care for. You do need your own life, as Laura said. You need a detached place where you can escape, unless your preference is to leave your own home for "time away".

God bless you for what you're doing. Please take care of yourself both physically and emotionally.
Ann

 

[Katie C]

I'm going to add one thing to everyone else's statements of don't be too hard on yourself... talk to your husband's doc about getting him on some anti-depression meds. Sounds like he probably could have used them before, but now, with the ALS diagnosed... if he's getting the right meds, it could help both of you! Hang in there.

 

[halfin]

I've read your postings and your brother's, and I can see how hard this is for both of you. It reminds me of the joke about what's written on the hypochondriac's tombstone: "See, I TOLD you I was sick!" You and your brother obviously have a long history dealing with conflicting claims about illness, etc. But now it sounds like he really is sick, and it is serious, if this ALS diagnosis holds up. That means your relationship will have to change.

As time goes on and your brother gets weaker, he will no longer be able to do the things he can do now. He will need your help (and hopefully the help of others who can share the load sometimes) for his most basic needs. That will be hard on both of you. If you can find a way to put the past behind you and accept that you are in this dire situation together, maybe the two of you can find a more positive way of interacting.

 

[NotALS!]

You shouldn't have to give up your life to care for your brother if you don't want to. Try to find a good nursing home and visit often.