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Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,782
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
I am very frustrated. It seems that everything I do is wrong. Is it common in the early days after diagnosis for the PALS to be hypercritical? I want to believe it is the fear of what is coming and the unknown that is making him take everything out on me.

I am worried that this is going to become a new pattern. Suddenly, absolutely nothing I do is right. There is always something at least slightly wrong with everything I do. From the way I help him dress, to how I cooked dinner, to the smell of the cleaner I am using.

I am scared that I am going to resent him if this continues. We are getting ready to start the third week of this.
 
Its really hard dealing with the fresh diagnosis. I can't say I know why he is acting like this, but hopefully he will ease up once he calms down. It took me about 6 months, but I didn't get mad. I just wanted to be treated no different than before (still feel that way). I hope it gets better.
 
Funny thing is, I'm having a hard time treating him any differently, but he reacts differently. That's what is so strange and frightening. I don't know what to say or do. Everything I do and say is wrong.
 
Welcome to the "ugly" side of ALS. They are angry, frightened, and sometimes down right mean. Just do and say what you always have. I know it is hard to just brush it off, but they still love us, just like we still love them. It does get easier as time goes on. The strong men we were (are) married to are very confused and frightened. All we can do is be there for them. So many of my husbands friends have abandoned him, and I just have to remember that he is just very frustrated and frightened, but does not want me to see that. HUGS Lori
 
I hope Dick sees this thread as I remember him saying how he had much the same with his believed Liz.........;
And I know I have been horrible someimes and could not even give a reason myself
 
Cal your Neurologist and have him checked for FTD. Is he on any antidepressants? Yes, we all have experienced the ugly, evil side of ALS-which interestingly enough the Medical community continues to say that there are no mental changes! We know better. Some have it worse than others. Miss, you have to find a way to support yourself, nurture yourself or you will be a crispy CALS quickly. In our home, Web [none of us do] does not have the right to be mean and ugly-just not acceptable. Early in the diagnosed he exhibited some very self centered, mean behavior. First I was loving and kind. Did therapeutic conversations but it got me no where. Finally I just told him that he had to stop it NOW. He said, "You need to understand, I am dying!" I replied, "We all are. Everyone of us is dying a little every day and that is not an excuse to be ugly." It sounds like you will need to set boundaries for him and for yourself. Honestly, it reminds me of when my older kids were teens and we had to do "Tough Love". Didn't you say you were being seen at a ALS Center? Call the Social Worker for help and see if there is a support group that you can attend locally. We are here for you. hugs, Kay Marie
 
Miss
All of this is totally normal. My wife is often not the most pleasant either. One day one of my daughters told her "Mom when you ask me to do something for you, please is optional but I do expect a thank you". It seems that I do nothing to her satifaction but we have a code that I use when I have had enough of her criticism. I smile and say "One of these days". Which is a referance to a comment I had made several times that one of these day I would actually do something that was up to her specifications. I remind myself how terribly difficult this must be for my wife. One of the things that attracted me to her was her fierce independance and now that she has zero use of her arms and hands and depends totally on someone else to do even the most simple and personal tasks for her it must be very frustrating. Over 27 years ago I took a vow before God to love this woman in sickness and in health, for better and for worse, and you know what?; when I focus on how much I do love her and not on the other things it somehow becomes easier to tolerate. Sending you the very best wishes and hopes, Miss.

Jim
 
Thank you all. This is hard enough without the mean and defeatest behavior! I'm not sure how to set the boundaries. My husband was one of 4 boys, and there never were real boundaries. It has always been a problem around here. This, however, is goes far beyond any problem we have had. Just like your wife, Jim, my husband has always been very independent. The loss of his hands is terrifying for him, and it is happening very fast. Funny, I have been dreading the loss of his voice more than anything. I'm not so sure about that now!
 
I know that my father-in-law went through this also, before the diagnosis, he was checked out for FTD and was found to have it, from the research we have done we found out that one of the first signs of FTD is personality changes. But with the right antidepresseant all of that disappeared very quickly thank goodness. I cant imagine it if he were to constantly complaining about what I was doing, it is hard enough as a CALS dealing with our own emotional roller coaster for our loved one and all the uncertainty of this path we are traveling on but if I also had to deal with him being hurtful I am not sure how I would cope. So my prayers go out to you and him for patience and understanding.
 
Dear Miss - I'm so sorry that you have the double whammy going on right now. Your guy has just been diagnosed - which to me means YOU BOTH have just been diagnosed and you're having to deal with that AND critical comments or attitude. My husband was diagnosed on April 27th - last week. He hasn't been so critical as what your going through, but he gets fixated on something and won't let it go until I've done it the way he wants it done. I've just assumed that he was doing this because everything else is so out of his control and the aggravating me to do things his way gives him a little bit of control. I try to accomodate his wishes, but not every time. I told him we have always done things differently and sometimes he would need to just let me do it - wrong in his view - as long as I get it done in the end. I said "who knows, I might end up agreeing that you were right all along, and you will have a wonderful I told you so moment". I agree about the resenting part - I've been angry with Marty for the past year while he did not aggressively pursue answers to his failing health and we only got where we are by me taking over in February and removing him from his trusted doctor to another that I chose. Since he can no longer drive and I have to take him I had the leverage I needed to do this - plus I was diplomatic with the first doc - but boy would I like to give her a dressing down now (told me 3 times he did NOT have ALS and not to worry about it). Yeah right. This whole thing seems to be a balancing act of taking care of him but not emasculating him. I have added a whole group to my prayer list from this site already and it helps me to be in prayer for others - not just Marty.
 
Yes, I have seen this thread Iris Marie. Jim mostly hit the nail on the head. Liz was extremely easy to get along with, until she sat down in that wheelchair. We had a pretty good almost 2 1/2 years after she was diagnosed while she still had reasonable use of her limbs. That chair though, that changed everything. She was a fiercely independent woman for all the years I'd known her. Then it seemed like one day she could no longer do anything for herself. I know she hated having to rely on others, particularly me. She also repeatedly asked me questions like "how can anyone expect you to do more?", in reference to PT, OT and all the other necessaries of life. So I know she was on my side, but even still, she had no one else to vent to and it had to come out. The last six months were brutal, I felt like a whipping boy almost every day. Like Jim said though, I took the vows and meant every word. I started to focus more on our love in September and I learned to let the bad treatment go. It's not easy, particularly since I've always had a rather thin skin for that stuff but I had no desire to color my 22+ year old memories because of something she really couldn't control and had a right to let out anyway. Try to focus on what you had, at this point everything changes but you have to remember the man you married. He's still in there, but he's scared and fearful of the future. It'll get better once he comes to grips with it.
Dick
 
Thank you Dick. That hit home. We are only about a year and a half older than Liz, and we are about to have our 21st anniversary (You two were babies when you got married!) Terry is losing his hands rapidly, and the more he is unable to do, the more upset/angry he gets. I think he would have been better if it had started in his legs. We are both very strong, opinionated people - so this is very difficult for us. But, like you, I said vows that I meant, and I plan on keeping them. We're just in the sickness / worse part right now! I am prepared that that is where we are going to stay until death do we part. I just hate the idea of that. It is just so sad, and I don't want to leave that memory with the children. I'm going to try to find some counseling to help me learn to cope with this new personality. Maybe I can learn to diffuse some of it. If anyone has helpful tips, I am open!
 
In the past I have vented about the very thing you are talking about. I could do nothing good enough, fast enough, etc. But thankfully, it is in the past. My husband was given Lexapro and after it kicked in, he was much better. Not so critical and more patient. Whether it was the meds or just coming to terms with his illnesses (he also has cancer), I am extremely grateful for the improvement in his temperament. Hoping things improve for you too.
 
Welcome Miss! I am so sorry to hear the sad news! I know how you feel...my mom was diagnosed with ALS Sept 2009. She has limb onset with some bulbar signs. For the most part, she has been very brave and her sense of humor has increased. However, there are moments when she becomes very unpleasant towards my father, her current caregiver. He has come to the realization that her anger isn't directed towards him - it's directed towards the disease and her feeling of helplessness. My dad will turn the other cheek most times, and let her vent. Other times, it gets to him and he will just leave the room. I am sorry that your husband is having such a difficult time and putting you through such a difficult time as well. I wish you the very best during these hard times.
 
Thanks Linda - Things are a bit better lately. I think we are both getting used to the idea of the disease. It is just so hard trying to find something that resembles a norm.
 
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