Sure we fussed, but I never deliberately did or said anything of substance to hurt my DH, he was the same with me. But AD sure changed that. God, I wish I could take back the things I said, the times I yelled--even when I was doing it, I never meant to hurt him, I was just being pushed outside of my normal control zone, it wasn't 'me' anymore than it was 'him.' But it hurt him, I saw the hurt in his eyes. On the other hand, he more than once did a number on me. It wasn't only yelling that I had slept w/other men, it was the hatred I saw in his eyes, the clenched fists, the threatening to hit me, his badgering me when I was rolling on the floor w/a ruptured appendix, his ignoring me--on and on--you all know the routine. Yes, I think back on those moments when I read similar ones on his site, but I forgave myself, I forgave him--yeah, I remember, but it wasn't our fault, neither one of us--it REALLY is the disease. You're OK, Joan, really, you're a nice person--just human.
Joan---I spent all day Saturday at a very good "caregiving" conference sponsored by our local Alz. Assoc. One of the speakers talked about guilt and called it the most useless of our emotions. She made the point that in some limited situations, we really do something we should feel guilty about, and then we should apologize and move on ("earned guilt"). But in most cases, we haven't done anything to feel guilty about ("unearned guilt") and feeling guilty is a total waste of time. So, remember, you are a very nice person, just human, and you shouldn't feel guilty about anything, none of us earned or deserve this awful disease. Of course, easier to write about that than to actually quit feeling guilty...but we are just doing the best we can, just like our loved ones are just doing the best they can.
Bettyhere* and texasmom both said it. We are human and will make mistakes. We will react when we know the right thing to do is respond. Practice may make perfect . . .someday, but I've been practicing a really long time, and still mess up. Then kick myself around the block a couple times. It only took me twice of jumping at DH for calling the dog by one of our old dogs' name. Both times I snapped, "Chantey's dead. That's OT." And he got all upset. I felt horrible for bring the pain of that loss back. OT didn't care. DH calls him by name,by "Dog", or by "Chantey" and he knows DH is talking to or about him. Now when DH says, "Chantey just came in." I just answer, "Don't forget to give OT his cookie." I'm still learning to stop for just a second and think, before I say anything in response to his words or actions. There are enough times I have to step in and correct him or redirect him without adding more stress by blowing up over things that I have trouble accepting. The Disease is responsible for his inability to hold a conversation, answer a question, give an opinion, or make a decision. All those frustrate me, but I will accept those facts and terminate the reactions my frusdtrations trigger. It is not his fault, and I am working hard to remember that.
Joan, I posted a few days ago about my DH always saying "Huh" to everything I say. It has gone on for quite sometime and I put it down to his not hearing too well, now I think it's because he isn't processing what I am saying. That results in my not telling or asking lots of things because I will have to repeat it and it is aggravating to say the least. Sometimes I do tell him something and then wonder why I did because I know he won't remember. At least he can still take care of his showering etc. so I am grateful for that and will just have to try and be patient with everything else!
Joan, As a posted on Saturday, I found myself so frustrated that I heard someone screaming at the top of their lungs, when I realized it was me. I actually scared myself. This is a man who could knock me out with one blow. I felt terrible an expressed it on this board. I knew my friends here would understand.
Joan, it's not a question of being nicer. Let's be honest, if we had wanted to be married to men who needed constant direction, help with everything, etc., we would have married that kind of guy (I guess they exist, to some degree). But we didn't--we married men we admired, who hopefully, were at least our intellectual equals. Men who were independent, who could take care of not only themselves, but often areas that we preferred not to be involved in. Our reactions of frustration and stress are entirely normal considering we are now married to the exact opposite type of person!
I talk about my DH and I working as a team, but what the situation really is...from each according to their ability to each according to their need. I have the ability now and my DH has the need. Each little thing he does I try to praise him for his role 'in the team', like completing household chores...even though I now hire someone to show him (and suspect sometimes do) basic household tasks. If he gets his dishes to the DW that gets praised, etc. I have to be careful not to say 'good job putting your dishes into the DW' as I do my grandkids, and rather try to remember what I would have said by way of thanks a year ago. DH is 'aware' and sometimes when I talk to him as the child his abilities are, he feels bad and apologizes for being sick. Then I feel like a TOTALLY INSENSITIVE JERK. It's hard to remember when the abilities are 2-10 yr of age that there is an adult in there somewhere. My DH has not been my husband in a year or more, but it seems like forever. This whole thing is EXHAUSTING. Sometimes I end up going to bed at 7:30 pm and it's all mental exhaustion!
I can't praise my wife anymore for helping with things around the house since she does not do anything. The best praise I can give her is when she eats her applesauce with crushed pills without my feeding it to her. I am SLOWLY learning not to yell at her when she doesn't give me the help I expect, particularly in getting dressed or undressed. If I get upset then she gets upset and we start yelling, so I do everything I can not to show that I am upset.
I'm finally learning that when I make a direct request of my dh or want a response I first have to make sure he makes direct eye contact with me. (He often will dart his eyes from side to side rather than look right at me.) Once I know I have his attention and he knows I am talking to him, I can make my request or tell him things and usually he will respond. If I don't force the eye contact he very seldom responds to what I say.
Joan - I know exactly what you mean. I do the same thing and then kick myself. But as so many have said here ... were just human. It is very aggravating to have to say the same thing twice all the time. Now, I see when I tell him to do something like "...take your watch off and put your pajamas on" it doesn't work because I can't say two things at once. He just can't process it. Everyday is a learning experience. I'm trying so hard to accept the limitations. My DH was an athelete ... played handball four times a week ... devoured books ... and, when in a group, took command of the room ... he was a show-stopper. Now, he hardly resembles the man he once was. It's so hard to accept. I miss my partner.
We have to learn to not beat up ourselves. We're doing the best we can in a horrible situation. Bless you for providing this site.
Me too, Joan. I wish I could be kinder, more of the time. We had a couple over for dinner last night -- old, dear friends, and I saw in my friend's eyes -- she was practically crying a couple times -- the sadness and pity that is often lacking in my own reaction to what he has become. We hadn't seen them in maybe a month and she thought he had become even more quiet and withdrawn. Later on we played a game of cards and DH did surprisingly well. Everybody cheered up. We were all very nice to DH. I find it easier to be nice to him when other people are around.
Joan, I didn't read your Mon. blog until today (Tues.) and have to say---you expressed my feelings so perfectly! I understand exactly what you mean as I am sure everyone else on this site does too. How sad that this evil monster of a disease can do this to us! I agree with PatL--Bless you for giving us all this opportunity to vent.
Ditto Jean 21 !!! Huh is my DH's standard resopnse to everything. It is automatic when I say something as if he knows he won't be able to get it unless I say it again. When I thought it was his hearing I used to then raise my voice and repeat it and he would say "Don't yell!". That didn't make sense because if he couldn't hear and then I repeated it louder how would that be heard as yelling (if that makes sense) ? Was I using the wrong octave the fist time or the second time ? Could it be he needs more time to process what I say? I think so. It reminds me of a child who is deliberately lying when questioned to get more time to come up with an acceptable response. Joan, PLEASE! If you were nicer you would be sporting a designer pair of fluffy white feathers shaped into wings and a haute coture gown with real gold embroidery!!! No human being can endure this hateful process and not have their patience tested every so often. On the positive side , I know my self better than I ever have and I like me. I'm pretty cool and a decent (okay, passable) human being. I'll do. Like Clint Eastwood said, " a man's got to know his limitations".
Gypsy, I think the repetitions and the huh? are to allow them more time to process what's being said. They can't help it. Not that that makes it any easier on US. What frustrates me is when he repeats exactly what I've said while doing exactly the OPPOSITE! (Come this way to your walker.. and he goes the opposite way, not trying to be bad, it just didn't process right.)