Travelling

[Miss]

I had such high hopes that this would be a good trip. We are up in Knoxville for our daughter's freshman orientation. My husband went to college here, and loves it. He has several friends who live in the area. Tonight, about 15 guys from college are heading into town to spend time with him. We are staying at a Residence Inn that is truly handicapped accessible. All should be perfect.

The first two hours of the car trip were hell - until my daughter and I convinced my husband that he would be more comfortable in the backseat of the Lincoln. He has complained about the hotel - not good enough - even though it is two bedrooms and a den with a walk in shower and everything he could possibly need. Complain, complain, complain. Is that just part of it now? I'm not going to pretend that I have taken the criticism and abuse lightly. I just don't understand it. Everyone is bending over backwards to make the trip wonderful.

Now all I am hearing is that I have failed him and that he just doesn't want to live anymore. Help! He is driving me crazy! I am trying to understand, but I'm having a very, very hard time with this.

 

[joelc]

I am very sorry that you are experiencing this! As I have said before, you do not deserve to be treated like this and should not take it. Tell him it is unacceptable behaviour and you are not going to take it anymore. Sometimes PALS need a wake up call. God Luck!

 

[pjm220]

Miss, is this unusual behavior for him?

 

[Miss]

I'm not going to deny that he could be an ass, but this is times 1000!

 

[sadiemae]

Missy, My husband sometimes also lashes out, but when we are around doctors or friends, he sings praise about me. We ran into our favorite doctor who is an intern, and he took great care of Les when we were in the hospital. He is leaving for Washington DC next week, to begin his Neurology practice. We gave him our email so we can keep in touch, and Les said for Doctor Bob to call on me if he needs any help, as I know more than all of our doctors. In private he will tell me he is going to get a nurse, because I don't take care of him or know anything. Just lashing out when he is frustrated. It hurts, but I know he really doesn't mean it. It will get better, but with my husband, I know his ******* side will show up occasionally! HUGS Lori

 

[Mike27]

He's feeling sorry for himself. It's one of those places that we all visit from time-to-time, the trick is not to take up residence there.

When I get whiny or in a mood, my wife says that I've got 20 minutes of self pity time, then I have to get back in the game. She leaves me alone for a while and I usually get over it.

If your husband is spending too much time in self pity mode, you may want to talk to a doc about therapy, meds or something.

What do you think?

 

[sadiemae]

My husband has said "NO SHRINKS" since the very beginning, getting very angry if I mentioned it. He was a little nicer when doctors or nurses suggested it, so we quit suggesting it. Last month HE decided it wouldn't hurt to talk to someone, and so he did. It took him 9 months to decide he needed to talk to someone. We are in the Home health program with the VA, so she came to our house. I think it was easier for him to do it here in our home. There were no time constraints, and she was here for over 2 hours. HUGS Lori

 

[Miss]

Oh Lori, that sounds perfect! My husband has also said NO, NO, NO to any mention of a counselor. He is definitely going to too many pity parties lately. This is not who he wants to be for the children if nothing else - even if he cannot see what he is doing. I am just tired of the threats, cussing and berating. Maybe we need better meds. He is currently taking 10mg. of Lexapro Any suggestions?

 

[ghii]

Missy, that is so hard. I feel for you. There is little I can say because my husband is a patient sufferer. He hardly ever complain and suffers in silence. I am glad we got hospice going. He likes people and being fussed over. He is getting fussed over. So far hospice has been very good. They are right on time about everything they say they will do, very efficient.


ghii

 

[pmbenb83]

I've been very luck that Eric has been pretty good through all of this. He's had his moments of self pity, who wouldn't? Last summer, one day his mood was a little worse, and after a few hours of doom and gloom, I said to him that he can either sit around waiting to die or get out and enjoy the rest of his life, which one was more appealing? Ever since then, he's been doing pretty good. I think we all need a snap back from our dark sides during these trying times, but we should not be mean to one another... we're all we have.

Hang in there. It sounds like he's stuck in the anger phase. Hopefully, he will have his "ah ha" moment soon.

Take care.

 

[halfin]

Fortunately ALS patients are very weak so it's easy to tackle them and give them sedative shots and such. Well, maybe that's not very practical but it's what I feel like suggesting when I read these kinds of articles.

I'm sorry you're going through this, but hopefully with time it will become easier to accept the disease. This kind of lashing out is maybe understandable at first, but after a few months it's time to man up. Yes, this is a terrible disease, but we still all have months or even years to spend with our families, to leave them with memories and to show an example of how to deal with adversity.

So you're going to die. Well, guess what, you were going to die before. The schedule is moved up but the ultimate destination hasn't changed. It's not how long you live your life, it's how you live your life that matters. So sure, take some pity breaks now and then, but don't turn your loved ones' lives into a living hell. There's no excuse for that.

 

[dp1969]

"so you're going to die. Well, guess what, you were going to die before. The schedule is moved up but the ultimate destination hasn't changed. It's not how long you live your life, it's how you live your life that matters."

Hal -

I don't know how you think of these things, but you keep me sane and my feet on the ground!

Missy - not to be too much of a jerk, but tell you husband congratulations you are at your daughter's college orientation. My kids are 13, 10, and 7...statistically speaking I won't see any of their freshman orientations!

Dan

 

[sanderson]

Missy, I am sorry that you are going through this on whats sounds like a very well planned and thoughtful trip. I hope things get better for you

 

[Miss]

Hal - I'm crazy about you! You give such down to earth advise.

Dan - We have a friend from childhood that died of ALS in February. His girls are 9, 6, and 4. What he would have given to see one off to middle school. You are absolutely right, and I use that example often.

I am trying to keep in mind that my husband has known he has ALS for less than 2 months. I figured it out a few months before. He would not accept it, and truly did not know until he was given a firm diagnosis. I have tried to cut him some slack. The disease is progressing so rapidly, that I want to pack in a few things before it is too late. With this behavior, not a chance I'm going to schedule anything else! There had better be a change if he wants to see the ocean one last time, or watch a college football game, etc.

 

[Erica]

Miss, I'm so sorry that you you have to go thru this.
Your husband is going thru all predicted stages of dealing with a terminal disease.
Initially denial, now grief...then acceptance.
Give him a bit more time; but if his self pitty process is getting too long you might want to remind him that "life is a journey, death is a destination".
The way I looked at it now: hey, I might even have an advantage because I know that I have so many months to live. Other people don't; one can be in perfect health and get hit by a bus on a way to work. So we need to enjoy whatever is left.
With all above said, it doesn't mean that i don't feel self pitty from time to time.
P.S. I do suggest for your husband to see a psychologist, it could be a great help.
Erica