hubby is stage 4-5. Just the stages where you can see that there are many things he can't do but he still thinks he can. When you try to redirect him away from trouble he flares up and attacks you verbally. But you have no choice but to stop him, in this case, before he burns the cabin down. Leave the wood stove alone!
Amber and ms. magic, I am so sorry about the lashing out. After my dh recent hospitalizations I took his car keys away. He keeps trying to get them back and I made the mistake of asking the cardiologist if he could drive and he said well I don't see why not. So of course my dh remembers that and keeps saying, he said I could drive. I said he is a cardiologist so he doesn't know...He gets a little huffy and says I don't know why you don't want me to drive. Anyway like a lawyer Never ask a question unless you know what the answer will be. (I was sure he would say no..silly me) The good thing is he is usu pretty noncombative, he used to be verbally mean and dismissive but now he just is mostly sad and pathetic.
Doesn't he have MS? Does he have enough mobility to get behind the wheel?
DH hasn't driven in 11-12 years. When it came time for him to renew his license, I suggested he get a state ID card instead. He ranted and raved ... but came around.
He knows he physically cannot get behind the wheel, so that helped.
we always say the one closest to them gets the brunt force of any attack verbal or otherwise. and that happens to be us the caregiver/spouse most of the time. yes it hurts to be on the recieving end. isnt it amazing they can remember how to hurt feelings so nicely? and not remember anything else. yes, i agree matches or stoves in a cabin would be a non negociable deal.
Amber, so sorry you are dealing with this. Most of us have and it totally sucks! One of the biggest AD fights we ever had was when Lynn started a fire. He put a paper plate on the burner trying to heat up his food. At 2am no less. Luckily I was somehow alerted. I did not lose my cool with him until he went to put ANOTHER paper plate on the burner and literally fought me when I tried to remove it. Egads! really?? Now I can empathize greatly with his poor demented mind, but then? Then I was scared to death!
We have an electric stove and oven, what I eventually had to do was shut the circuit breaker off every evening. Is there anything you can think of that could keep him away from the woodstove? Is he far enough along that he wouldn't be able to negotiate a gate? I put a child gate up around ours and it worked wonders!
The guy two rooms down from my wife does nothing but rail at his wife and daughter when they visit. He doesn't seem that incapacitated by the disease; but, he just won't stop verbally abusing everyone around him including me when I pass by him.
I went to get my jacket from my wife's room after a recent visit and he was there telling me I didn't know nothing and he meant it. "I understand" I answered trying to sound deferential. "You don't understand anything" he sneared. I nodded at him as I walked out of her room and as I walked down the hall he said "I'm dying here and nobody cares."
It took something for me not to turn around and say "you wouldn't even be in here if you weren't so mean".
The pain on his wife's face was so clear. His daughter apologized to me for some of the rude things he said and I let them know thoroughly that I understood completely what I was hearing.
And I do. It's the disease. There was no sense whatever to turn that day and explain. That would have been me stuck in the normal world. He just can't get it. Maybe he should try what my wife liked to do. Bite people. Especially when they don't expect it. I had one set of bite marks on my arm for a week and it was prominent and clearly bite marks. I explained it was a shark and putting up my fingers would explain "a little one".
I feel for you very deeply ladies. It's so clear that most men with AD do at least some of this and far more than most women. I've asked this in my AD travels and most everyone agrees that on average it's the men that act like this. It's the testosterone and the roles I think going all the way back to being pretty or being strong. It's far more painful to face such behaviour and usually from someone bigger and stronger than you because everything I went through with my gentle wife (who bites!) was so very painful enough. To also be told hurtful things and have to go through such behaviour is much harder.
I guess that old saying was right. Girls are made of sugar and spice and everything nice. And boys are made from whatever...
Watch that stove. Suddenly they do something they've never done before.
Wolf, a visit to Lynn's nursing home would change your mind quickly! There are more women with this issue than men.
One lady said to me, on many occasions..."come any closer and I will cut your F-ing throat" Leaping Lizards Batman!! I didn't step any closer.
There are two ladies on Lynn's floor who have daily verbal fights. I have heard words I have never in my life heard (must be the generation gap) and I have heard things that make me laugh right out loud. Up and down the halls they go in their wheelchairs cursing each other for the "dastardly battleaxe" they each think the other is; and we all breathe a sigh of relief knowing they can't get out of their chairs and do bodily harm to each other.
I don’t think the aggression and “meanness” favors one gender over the other, it is simply where the brain is being destroyed.
H has ftd so has never been staged. Based on what I have read I would say his current condition is much like 5-6.
The verbal attacks have hurt so much over the years. It seems like the more I handle in terms of, well, everything, the more upset he gets. Some things I have always had more of an affinity, or attraction to, like finances. But he had his strong points, up until just a couple of years ago.
It still hurts, when you (I) try to do the best I can and get negative for it. In my case I think he really on a subconscious level still misses the influence he had in his career and civic life.
I don’t know if this off subject or not, but it sorta makes me want to bang my head against the wall. The last time I grudgingly told my DH to go “all the way around the van” to get in & then getting out & walking around with him & showing him the door (shaking my head & rolling my eyes) I thought, “I KNOW he doesn’t know where to get in the van, so why don’t I just go with him & open the door for him?” Just like the other things I KNOW he can’t do & don’t help him with at first. Why don’t I just HELP him right away? I’m not in denial. Then it hit me! I’m TIRED! Tired of doing EVERYTHING. Tired of telling him over & over how to do this or that. Tired of trying to get things done by myself. But most of all I’m tired of the look in his eyes when I have been mean to him & how AWFUL I feel when he apologizes for things that he can’t do that I KNOW he can’t do. Sometimes all I can do is cry. AM I a bad person? I pray every day that God gives me patience to deal with EVERYTHING. Please (if you are a praying person) pray for me & I will pray for you. Thank you for being here for me!
Oh, Elaine. I can so identify with your comments. I get so frustrated when he can't do something so simple as pushing the release button on his seat belt but tries to climb out of it. If I could just remember to do it for him. They can't help it, it's the disease.
I do the same thing with my DH. He can't do ANYTHING and I lose what little patience I have. It is easier to do it myself to begin with but sometimes I want to read the paper or watch something on TV or just sit in my chair. He goes to the ALF on Monday and I will probably be posting that I miss these things!
Elaine and Dazed,I relate to you completely,I am tired of telling him over and over to do something,and I have just given up,now I say It's Okay, a hundred times a day and laugh and he will laugh with me.Like Elaine ,I pray over and over for patience,but my neighbor said God will send you trials and tribulations,thus we will learn patience. But how long does it take for God to send us patience?Hopefully in our lifetime.My DH also lashes out at me when I tell him he can't drive or do something. I try to avoid the words "can't or don"t or "no",they set him off. But he does remember he lost his temper and will apologize. He says he doesn't know what comes over him.I no longer use our coal and wood stove(and I loved it) and got a propane heater for in the cabin section of our home.
acceptance. we have discussed it many times. why not just DO it instead of waiting for them to, knowing they cant?
because there is still that glimmer of hope and denial that they still can. the anger part surfaces when at that moment our maybes became reality and we realize that the future is here -nothing to help them or us but admit the disease is winning. its a hit in the stomach each and every time it occurs over and over. we find denial is no longer an option anymore and it makes us very sad and angry. thus the lashing which in turn makes us guilty again. the cycle continues.
welcome to the world of psychoanalytical behaviors.:))))
divvi-did you just add another hat to your wardrobe? Legal beagle, poop queen, shrink, and best of all compassion and knowledge maven. I would be lost without you.
Oh Elaine, your post made my heart ache for you. You are NOT a bad person, I hate that you are even questioning that. What you are is a spouse who is losing her partner, her lover, her best friend, and it hurts so damn much. On top of trying to cope with ALL of that, we then must watch helpless as they lose their abilities and skills. We counted on them for years, and now we not only have to take on all of the responsibilities we used to share, but now we also must take care of their needs. Watching the losses and having to take care of the person who was my rock, my hero, the strongest person I knew, was an exceedingly overwhelming and gut wrenching "transition".
None of us were saints and we weren't automatically this magical, loving, patient, kind caregiver. I fought the good fight and I kicked and thrashed for all I was worth. I was not rallying against Lynn, but the disease and all it was robbing from us. The feeling of helplessness was crippling. I remember literally crying out to God with fist in the air at the injustice of it all, and daring anyone to tell me He was a loving God. I was angry, disheartened, depressed, and utterly heartbroken.
What you are dear ((Elaine)), is an ordinary person going through all the emotions involved with losing a spouse to this damn disease. We all do the very best we can in an impossible situation. Cut yourself some slack my friend. This is a process and most of us "learn" acceptance and adjust the longer we are on this journey. Like anything else, it takes time....
As you pointed out, it just isn't their fault, but neither, is it yours. When you reach a place of "acceptance", the time will come when you will automatically just open the door for him . They do feed off of us, if they sense our frustration it can't help but effect their moods and actions as well. It is a long process, and many of us are slow learners (like I was :) But that doesn't mean we are "bad" people, it simply means it is more difficult for us to let go of who they use to be, it hurts like hell, and we need time to adjust to our new role. And then lets not forget, that as soon as we do reach a place of accepting the latest changes, something new will throw us back into the abyss. How can we not be torn apart by this? A little impatience is not a crime, it is absolutely normal.
Along with the advice to take care of us, I think it equally important that we learn to be gentle with ourselves as well. ((hugs of understanding))
Jean, you have been in my mind often this week…. Three years later and I STILL miss Lynn’s shadow….
Two things happened this week that made me see how much DH is failing. He loves to go down the street to the town home mail boxes to get our mail. One day he said he could not open the box. I went with him and opened it. Yesterday, I watched him go to the mail box. He was having a problem so I went down. He was trying to open the wrong box. He has forgotten which box is ours. The other thing that happened today is he had a problem dressing. He hates for me to put out his clothes for him. Usually, he rejects what I chose. I have been telling myself that as long as the clothes are clean I should let him choose his clothes. This morning he came into the kitchen with yesterdays polo shirt with an undershirt over it. After he had a shower I put out his clothes for his day program. He rejected the tee shirt I put out and pulled out an old Polo, but at least he had his clothes on in the right order. For the most part he is pretty calm except when he can't understand what I am trying to tell him.
I am with you all the way. I could have written your post. I am TIRED of doing EVERYTHING. As we all are. The only thing that helps is knowing that everyone here understands.
Ok a little levity, now how many who took the Care Givers Burn Out Survey answered the questions about using alcohol and.or drugs to cope honestly. DAZED will appreciate this routine seat belt battle. My DW hates wearing her and has perfect technique releasing it and total inability to put it back on. She unclipped it within view of a local cop who pulled me over. After the usual license, registration , etc. The conversation was: Mr S you know better (I live in a town with a yr round population of <10k. Over the years you get to know most of the police). I explained the situation, he said his grandmother had AD not to worry, no ticket. He then asked my wife's name, walked around to the passenger side asked DW to put her seat belt which I helped her do. He then proceeded to give DW a gentle lecture about keeping her seat belt on making it clear next time she'd have to pay $150.00. Somehow it registered. If she starts fiddling with her seat belt,all I have to say is, $150.00 and she stops!
Amber, I am sorry that you are going through this, my DH is in stage 6 and he tore the kitchen sink apart thinking that he could put it back together, that happened about a month ago and it is still not together. The biggest problem about that is it is not even our apartment or sink. haha! :-( Then a few weeks ago I got a complaint about him going outside at 4 am and relieving himself naked at the time. Nelsons, that is why I don't have alcohol in the house because I would DRINK IT.
Nelsons, thank you for your info about the hospital stays which I am going through now. There is an item someone on this site recommended to me. I bought this Angel Guard seat belt protector on Amazon but saw a video of it at a different on-line store. It works great on the front seat but the opening piece of the seat belt in the back doesn't have any give so there isn't enough room to use the protector. But, it works in the front seat. You might want to check it out in case she forgets the value of $150.
Thanks to all who responded to my post who could relate to what I said. I know there are others out there who didn’t respond who probably could also relate. divvi, you are right when you say that there is still that glimmer of hope, especially when they can do something once & then the next time they can’t. (Really? You can’t do that? You don’t know where that is?) Nikki, thanks for the kind words to me & everyone else here who is tired! With all that you have been through you always have a kind word or positive thought to give to each of us when we need it! <3 And Joan, YES it does help knowing that everyone here understands. Thank you!
So good to read everyone's comments about this. I feel so bad when I snap back at my dh. He is so sweet to me always saying how much he loves me. He was the take charge "A" personality person very capable of doing anything he wanted and he did. He just took care of everything and me for almost 60 years. Now things are broken and he can't fix them and resents my wanting to get someone to do it. What to do? One of our sons lives nearby and sometimes I call on him but I sure don't want to impose on his good nature. He is the one who got a book on dementia and passes on "what I should do". I know he means well but sometimes books aren't reality. So at present the rototiller has a flat tire and dh wants to ask the local dealer to come out and fix the tire. Not going to happen - they don't make house calls ;). So it sits and I begin another day trying to make sense of our life as all on this board are, I'm sure.
My husband is content to do nothing. I suppose if I said something was broken he would try to fix it but I know he would break it if he attempted to do it. He couldn't do it before AD, he certainly can't do it now. I have to lay out his clothes when he takes a shower and he's content that I do it. He doesn't eat breakfast when I do so he used to fix it himself, usually just a bowl of cereal, some toast and juice. He could do it. Now, he forgets that he ate and when I find him in the cookie jar and ask him if he ate breakfast he says he did. But I know he didn't. So, now, I set it all out for him and all he has to do is put in the milk. There's no point in getting him upset and me upset, so I just do it and we're both happy and he's fed. He used to be the take-charge guy as well, but now he's content to leave everything to me. I get overwhelmed some days but what can I do about it? When I can't handle it anymore I try to go in my room and settle down for awhile so I don't get both of us upset. It isn't easy, as you all know.
Sounds to me like you are doing the best you can with what you have been given. Your "trip" sounds alot like mine. I do everything or it doesn't get done. He tries to help when he can. He folds clothes. Gets the water and coke on for some meals. Fills the glasses with ice. I think it makes them feel good to just do the little things they can do.
I think you're right, JudithKB -I know it makes my DH feel good to just "do something". He fixes his own cereal for breakfast, sandwich and fruit for lunch, sets the table for each meal; clears the table, loads the dishwasher - removes dishes from dishwasher - but puts them all in the wrong places, so I have to seek and find and re-do - but that's okay - it keep him busy for a little while. He's been "working" on a broken clock for 3 days now - just keeps changing the batteries in it, but he will work on it for hours at a time!