Well, I blew it this afternoon. Just need to get this out of my system. Had a decent afternoon, upon coming home Dan became defiant & almost threatening. We have been removing our shoes inside the house for years, now he balks at it. Refused to do it, refused to wash his hands (this is the man who was always preaching about keeping hands clean), couldn't wait to get into the tiny little cake I bought at the store. We had words, shall we say. I told him if he didn't want to be treated like a child, stop acting like one. I said he HAD to change into his slippers, he told me no he did not, I told him I wasn't going to put up with this b...s..... He told me I was going to get hurt, I told him if he hurts me, he'll be in jail (& I would do it too!). I really lost it when I threatened the "home" - I know I shouldn't have done that, but I did. The only positive thing is that he'll forget it in a while, especially after gorging himself on the cake (part of which is already in the freezer, & one piece removed for myself)! Then I called him a miserable SOB & left the room. I feel like I'm going to explode right now!!! I am definitely NOT fixing a meal - he'll make do with whatever I can find in the fridge! (Aren't I such a rebel?) :D Anyway, just had to get this out, in someplace "private".....sorry you all are the recipients of my tirade! Now to breathe deeply, avoid him at all costs & try to get my heart back in rhythm Thanks for "listening".....
Boy, can I relate to that. Sometimes I would feel guilty for letting it escalate but then I'd wonder how I kept my cool at other times. One day I did call the cops when he was after me with a pry bar from the garage. They sent him to the hospital and that was when we finally got a diagnosis. For months I had the car keys and cell phone in my pocket. I never knew when he would go off on a rampage.
Mim, you're human and this is a very tough disease to be a caregiver. Yes, you probably shouldn't have escalated it but it can be so difficult to keep your cool. I know with my husband, it's never just one thing at a time, it's always 3 or 4 things and that makes it hard to be the level headed one. Unfortunately my DH is one of the more difficult ones...I did call the police 6 years ago...I had no other choice.
Well Mim, you're certainly not the only one who blew it today, because I did too. And probably at about the same time! Now that the weather is sunny and warmer, my DH wants to go for frequent walks (sometimes up to 4 times per day). We took one this morning and then a good friend was coming over for lunch and some normal adult conversation. Before she left the three of us went for a walk and then we had some dessert. After she left DH insisted on walking again (less than an hour from the previous one). I wanted to take a nap and told him we would walk in two hours. He refused to listen to me, put on his jacket and shoes and demanded we go for a walk. This went on for almost 20 minutes, with me laying on the couch, saying we'd walk in two hours and him insisting we walk immediately. He even advanced the time on the digital clock in our living room by two hours to show it was after the time I said we would walk.
I finally gave in and we walked. He is now sitting at our dining room table waiting for his next meal. And I did get mad before we walked and told him that if he kept up that bad behavior that I would have no choice but to place him in a nursing home. I absolutely hate his manipulative, insistent behavior. I almost think he was mad that I spent so much time talking to my friend. I wish I could place him, I feel like this is emotional abuse and I can't stand it.
Mim - understand. We all do it and lately I do it more than I should. Latest was today when we went shopping. We go to a store where we bag our own. I like to bag the frozen and frig foods together so when I get home I know which bags need to be put away now, not later. No matter how much I set it up this way, he mixes them. That means I have search each bag right away. Usually no problem but today was SS day so bigger shopping than normal. If we were not at the store I probably would have really let him have it.
Many times though I say things I shouldn't to him. As you said, they will forget which is good for them, not us.
Mim, your post stirred up memories of my hb behavior. There simply is no rationalization, they are in their own world and it can be so awful for us. He has been in care for a little over 2 years now. I think you are just being the normal person who can only take so much and they do seem to forget what happened in a short time but we don't. My hb was just scored on whatever test goes from 1-15 and he scored 1. Still knows me and our daughter most of the time but physical condition is failing more and more. Has to be fed and doesn't use his good arm (had a stroke so right arm has not worked for year and half) but now left one is very limp. They are going to xray shoulder to see if that may be problem. He can't tell you if he's in pain, doesn't even know that he isn't using it and also doesn't know he can't stand up or walk. Always says he will do it but he can't. Mim I think it just best to not sweat these things, I know it's hard but we're the only one it bothers if they do these things, just like a rebellious child. Why is it so hard?? I don't even remember what was normal anymore, if it ever was. The primary thing is to try to keep things under control to stay safe. Situations can escalate in seconds and turn dangerous, I've ground off my teeth gritting them together to from losing it. Hope things get getter for you.
Mim, don't give yourself a hard time. Sometimes they are just too much, and we explode verbally, then feel terrible. Try to vent on this forum--you can scream at us, instead of him. And what everyone else says is true--he's going to forget all about it. Real life issues. And none of us are perfect.
Mim, your post stirred up some memories of the way I very often dealt with my husband's outbursts and unreasonable rants/conversations....Even though I knew better I would argue with him or get angry myself and yell back....I felt very badly after the fact; but during these times I just couldn't help it...maybe I was venting my frustration and sadness at what we were both actually facing.... A devil called dementia was taking my best friend away from me, and I knew I wouldn't get him back! I agree with Elizabeth...do not give yourself a hard time over this. What we face as caregivers is like nothing else we have ever done; every day brings some new challenges and new frustrations that no one can prepare us for... sometimes we just react with whatever emotions are at the surface of our imperfect minds. Forgive yourself!
Before anyone reads this, let me assure you that I yelled at my DH so loud that the neighbor called to see if everything was OK, I said things I’d like to take back, but the time came when I determined that my job as his caregiver (I was a wife on paper only) was to keep our home as calm as possible, for him and for me.
Is taking off his shoes, even if you’ve always done it, more important than keeping him calm? You can clean the floor after he’s asleep or placed. Walking barefoot won’t hurt him, he doesn’t have to have slippers. And, let him eat cake, let him eat it all, buy even more, let the crumbs mess up the house—unless he’s diabetic, he has few enough pleasures.
He is acting like a child because his brain is damaged, he cannot help it and threats will not make him behave except, maybe, momentarily. You can pick up a child, put him in his room, punish him, reason with him, threaten him and he will learn. You are wasting your time trying to do this with an adult who has Alzheimer’s. Lessons will not stick, things only get worse. Yes, spoil him. Unless there’s a danger, let him have his way.
If you feel threatened, of course, call the police. You don’t have to threaten him about it—just do it. You will feel less like exploding when you step out of the wife role and become the caregiver. All you wrote sounds like a fuss between a normal wife and husband--that is no longer your life. It’s time to make a list. What’s on that list more important than doing all you can to keep your home as calm as possible?
Meantime, you can come here and complain all you want, everyone will understand, and don’t feel bad, it’s the position we have been put in and I haven’t met a saint among us. Just start thinking about what is really the most important thing you can do as his caregiver for him and for yourself. Shoes or calm?
Mim, I agree with Bettyhere* that it will be easier for you if you step out of the role of wife and instead see yourself in a management role. That means that your interactions with Dan will no longer have the honesty or the spontaneity that characterized your relationship in the past. I learned this lesson years ago when my husband messed around with the cat food - I think he poured water into the dry food or something. I became very angry and even though I did not yell at him or speak sharply to him, my actions showed how upset I was and he saw that. He got a huge anxiety attack and kept whimpering that he was "a good person." This lasted for hours and I was so ashamed. I realized then that I could no longer interact with him as though we were on the same level. Joan once compared our spouses to adult-sized special needs children. That is a good comparison.
IMO, shifting into this artificial role toward our spouses is just one more thing that threatens our sanity.
I could take her. I outweighed her by over 70 lbs and was a foot taller. I said those things too and I regret them too.
The point is that I forgive myself everything and I did before she passed. I forgive her everything too. In fact I blame it all on Al Zheimer which is where all the blame belongs. This is serious stress that does not stop and when these little bits of humanity react at times it's probably a necessary pressure release.
She never hurt anyone in her whole life and never showed anger at someone when talking. She was impossibly calm always. Except that one time when she kicked right through one of our interior doors. It was about her mother I recall. She had no martial arts training. One kick. Door destroyed.
We do our best in terrible circumstances where they are allowed every error and we are allowed none. There are going to be reactions to that and we have to be allowed to be somewhat human.
"We do our best in terrible circumstances where they are allowed every error and we are allowed none. There are going to be reactions to that and we have to be allowed to be somewhat human." Thank you for writing that, Wolf.
Today was one of those days that I don't know how I can live like this another day. I will get up tomorrow and start all over again. Not sure if that makes me a chicken, a plugger, or superwoman. Every day that I go to the facility, my mind sings, "Smile though your heart is breaking. . ." but the sun never does come shining through.
I'm not at the forgiveness stage yet. At this point, I can't see ever getting there. I lost it big time before I knew what was wrong. I remember standing in the parking lot of his office and yelling at the parking garage across the street. Whenever I would try to talk to him about what was wrong with us, with the business, he would get a faraway look and then nausea. Little did I know this was triggering temporal lobe seizures. I thought it was just another male tactic of avoiding emotional subjects. There is a whole tree of bad stuff and major misunderstandings that the forgiveness saw is going to have to cut down before I can come clean. And to top it off, I cannot stop thinking that I did something in my life to deserve this; that it is some sort of cosmic punishment. Guilt always makes such a nice icing.
I totally understand marche. My husband came from the hospital after a 3 day stay. Naturally he was more confused than usual. I am ashamed to say we got into a shorting match at one point in the evening when he thought I was his brother (a common occurrence) and was upset because I told him he couldn't feed the cat people food. I know my reaction was an accumulation of three days of worry about his hospital stay. Hopefully today will go better. Staying calm is so difficult,
If someone asked me to devise an absolutely and completely unfair situation this would be it. If someone asked me to juice that up so that no matter what the person did they still got hurt badly by it, this would still be it. If someone asked me to make this completely unfair, one sided, badly hurtful situation go on and on trying to break them - I would still choose this.
Fifty shades of grey was shocking to many; but, it's a gentle skip through the surface of what real bondage and discipline is. To illustrate real bondage and discipline to those who are offended by graphic sex - I would still choose this.
When you feel guilt as a caregiver - the bondage and discipline over time is working because you are taking ownership of your own mistreatment. That comes with the territory both here and with real B&D.
Dianne and I had a fairy book lifetime relationship. She never did a single thing in her behaviour that so many of us go through especially with men. Not even a nasty phrase. Yet I screamed at her, I threatened her with putting her in a nursing home, I left her to fend for herself when she couldn't and none of those were just once. I forgive myself which took work and months and I'm sure still lingers on. What I did outweighs the mistakes or I am insane.
When the victim dares to react from years of torture (YES IT IS!), then the victim has brought the torture on to themselves. I'm not buying. Ever.
You go ahead and name someone you wish had to go through this. If you do, then you really hate them. Think about that.
...
In the last years with my mother where she stayed with me sometimes, we got into an argument and I yelled at her that when she spanked me hard that time I hadn't done the thing she accused me of. I was so full of self righteous rage I'll never forget how her answer changed me forever.
(screamed) "Everything I did for you and THIS is what you remember!"
I apologized profusely because the truth is right there visible and when I feel guilt, in exactly the same way, I make it apologize to me for being so terribly wrong.
Wolf, that sentence you wrote above that Marche commented on and then your blog brought tears to my eyes. I tried so hard to be understanding and I had those days when I yelled at him and then felt guilt. At this time with him in the nursing home, I just feel sad, not for the things we did to each other but for the way we are living now. But, you're right, we were mistreated and will forever be changed. I don't have one single person I would wish this upon. Not one. No one should have to go through this, not the person who has the disease nor the caregiver. I pray dementia doesn't happen to me. I don't want my kids to have to go through this again,watching me slowly die like their father is, and if I did get it, I wish there was a way to end it before it goes too far. There, I said it. I do NOT want to live that way!
I appreciate all of your comments - & patience with me!! You all make very valid points & I can see that this is an ever-evolving, ever-changing thing for the caregiver. I suppose I AM still trying to be wife instead of caregiver (or mother!!)....it's not working anymore. I guess that sometimes I feel like I've already raised my children & I don't want to raise another one - but this one can't be "raised". It's hard for me still to comprehend that learning is now beyond his capability, that no matter how logical I try to be, it means nothing to him. He can't be disciplined if you will, in order to learn & grow - he's going the other direction. And the toddler thing - it's all about his needs & wants - so true. The statement that they are allowed every error & we are allowed none is really a hard one to swallow, but I know it's true. Yesterday was very quiet for both of us. I'm surprised how much that tirade took out of me emotionally - pretty much did nothing all day, shower & read. Kind of enjoyed that. Today is good also, I didn't even say anything about his shoes on the white carpet!!! Of course, my tongue is pretty sore from biting it so hard! :) I can see that I'm going through different phases with this as well as Dan is. I'm just thankful that at this time, his physical health is pretty good (except for diabetes, which is controlled by medication). Trying to think of the positives, what there is of them....and sunshine coming through my windows helps a lot! (Except I see how much they need to be washed!!)
Mim, I know I am tired and fed up with having to live in his world. So much of our life has been about him and the kids, then him. In 2005 when we 'retired' to travel and work was suppose to be the time to hopefully rebuild our marriage. It was starting until AD took over and then it came back to being about him. They mentioned that at the 'new to me' support group I went to yesterday - we have to enter their world. I wanted to barf - so tired of hearing it. So many post on Facebook regarding dementia are about that. I don't even read them - I skip right past them. I either sit at the computer or go lay on the bed if I want to watch TV, even more so now that Stanley Cup playoffs are on. I let him have the front TV - he never offers to go in the bedroom. Sports and game shows are about all he enjoys. You don't have to remember - just live in the moment.
7 years and I am sick of this slow decline. I see no 'light at the end of the rainbow'. I want to 'blow it' all the time right out the door!
The support group I tried was at the recommendation of a lady I met at the laundromat here in the park. He mother is at the facility. She said it was a good group of 20-30 people of spouses and children taking care of parent. Well, there were 6 who were taking care of a parent, 2 spouses and me. All but me had them placed in the facility where we met. The intros were fine then seemed like every question would go back to how that facility handles it and/or how great the place was. Felt like most of the meeting was a sales pitch for the place. They had a new facilitator who is the new director of the place but the old director/facilitator was also there. I felt sorry for the young woman next to me. She is married, has two teenagers and trying to care for her dad who is in that nasty stage. Whenever she tried to vent and get answers it seemed to go back to facility. Poor lady, her dad screams at her for stealing his millions dollars that Warren Buffet gave him. She wanted to know how to deal with it and you can guess how the 'answers' went. I tried to ask and suggest and I hope the little I got out helped her some. The old director told me I needed to hook up with the other two spouses. Yah - their spouses are placed and are in their late 80s early 90s.
Yes - I almost 'blew it' there but held my tongue. Fortunately and unfortunately - hb had hockey to watch and I retreated to the TV in the bedroom with my kindle last night.
Charlotte, that's what I do too!! I go to the spare room, with my computer, television & Kindle....Dan gets the big television. He doesn't really watch anything though - it seems that many times he doesn't even realize what is on, just some noise & people moving around. Forgot to mention I have a lot of "book books" too, not just the Kindle. Thank goodness I like to read (so long as things are quiet) The support group you talked about doesn't really sound very supportive! I think I get more good from this site & a couple of other blogs than I would at an actual meeting - and this way, I can do it on MY own schedule, according to MY mood.
Oh, by the way everyone, he got the official notice today from the BMV that his driver's license has been suspended. I watched him reading (?) it, trying to understand it (kind of sad), told me his license had been suspended but they must have the wrong person! Not angry, just baffled. I told him we would see about it next week. We do have to get him a state ID however, so he will eventually have to go for that.