divvi, you reminded me of when I was caring for a cat I used to have, a long-hair calico, long ear tufts and gorgeous markings, very lovely (and boy, did she know it.) She got very old (was over 21 when she died) and toward the end, she became incontinent. She'd wander around the house, dribbling as she went. Fortunately, my house is ceramic tile throughout, so I just mopped around the house every morning before I tried to do anything else, and every evening when I came home from work. Well, at least I saved on kitty litter, and didn't have to change the darned stuff very often.
Lesson to be learned: get ceramic tile or marble flooring. Really MUCH easier to care for than carpet.
My biggest gripe (which I have not voiced) is shadowing. For the past 6 weeks I am followed everywhere. Even when I head to the bathroom, if I'm too long he comes looking for me. I'm not a "clingly" person to begin with, so this really bothers me to no end. At times I just want to yell, go sit back down, you don't need to follow me everywhere. Now that I've cut my hours at work to stay home with him, it's even more bothersome. What do I do?
RaeAnn-its grin and bear it time-i remember having to bath with DH looming over the bathtub. not talking moving just lurking over me, while i took a bath. VERY disturbing, and it lasted for what seems a very long period. clingy is the word, i would turn around and bump into him. i hated it and did scream on more than one occasion to back off! did no good, in one ear out the other, reason is out the door we've said this over and over right? i got to where i would just do my stuff and know he was behind me and i gues i got used to it. now i look him in our bedroom when i want to bath in the pm so he doesnt get into mischief while i am not watching:) like taking lampshades off and unscrewing bulbs-YIKES!!!!!!!! if he stuck his fingr in...ouch..so you have to bear thru the shadowing phase, not fun but then nothing that follows is either, just something else to find solutions for! divvi
Mawzy - I just loved the "are you still my fav wife" question from your DH...awwwww was my response, but I know it can get "old" over & over & over...still, you must be his favorite wife & that is a sweet thing :)
Beenthere - We couldn't both fit into the small toilet area where I tried to "hold & shoot", so now we use a 'hand-held urinal"...works great! :) And you can measure how much output they are having, check for dark (needs more liquids) urine, etc...a good solution to the true love problem you mentioned
Rae Ann - I agree with Divvi - the shadowing phase will pass...then it will move onto something else that will probably be harder to deal with...hang in there!!
LOL beenthere, that just cracked me up! I am with you natsmom, I thought mawzy husband was sweet too! Better than being yelled and screamed at in my book lol Divvi, you are my hero!
This sainted person here just lost it a while back. I feel really bad about it but I've been feeling it building up for a while now. He won't speak up. I ask him a question and he asks what i want to do. This evening I asked him if he wanted to go play cards tomorrow. (we generally go to the church and play on Thursday mornings). He answered "I don't know. What do you want to do?" That question goes on ALL the time over everything. Do you want jam on your toast? Do you want tea of coffee? He can't make a decision about anything. I'm truly beginning to wonder if it is AD or if it's some perverseness on his part.
So, he wanted to know if I wanted to play cards. I just went nuts. I said "Don't do that to me any more!!" Just say yes or no. You either want to go play or you don't. Make up your mind now because we need to get up and get ready so we don't miss the bus." He just looked hurt! (I hate that hurt look) and said he wanted to play.
Now, the alarm is set and we'll get up and I feel so guilty because I yelled at a helpless little kid.
Awww I'm sorry you are going through this mawzy. We all lose our cool from time to time, we can't help it. Try to be easy on yourself, and know at least they wont remember it. As for the decision making, I am sure you know that is part of the disease. It is so sad that something as simple as do you want jam on your toast can confuse them *sigh Hang in there, you are doing great!
Mawzy, the inability to make decisions is AD. And you need to prepare yourself for choosing his meals when you eat out, where you go, what you do, what gets cleaned, what gets repaired by whom, etc. The decision making button breaks at intervals, not all at one time. It also occasionally will miraculously fix itself one or two times at the most inappropriate times!
Card playing - Maybe he can't read the cards or maybe can't remember the rules. We played bridge all of the time (for over 46 years) and the last year that we played with our best friends of 40 years, we had to watch carefully what he played to make certain he followed suit. He wanted to play, but it got to where it was too difficult, so the three of us stopped getting the cards out and he forgot about playing. It is amazing to me that even though he can't play bridge, he can occasionally still play spider solitaire. Maybe it is because the computer won't let you make a wrong move! <grin>
I have learned that when they say no, let them be. There is an underlying reason that they can't express to you - either because their mind can't reason out why or they don't remember.
You are in a very difficult stage. You handled your transportation issue so well! Congratulations!
A typical conversation in my house - BEFORE AD! Abbot and Costello.
S- I'm hungry. J- What do you want? S-I don't know. What do you have? J - I would name 3 or 4 things. S- No, I don't want that. J- What do you want? S- I don't know. J- WELL, WHAT DO YOU WANT ME TO DO ABOUT IT????? S- You don't have anything I want. J-What do you want? S- I don't know.
So now when he does that, I don't think it's strange or AD. It's just the way it's always been. Only now I don't get angry.
I moved from asking what he wanted to offering 2 choices. When I still got "I don't know" I went to offering one choice. At this point he really can't make choices much of the time, but he still knows when he doesn't want something which makes everything very difficult. For the most part I no longer offer choices. I just make supper. If he asks what it will be I tell him, but otherwise I just put it down in front of him.
Lunch is harder. Sometimes he wants to go out, but even that can be a real problem. He truly can't handle real restaurants anymore, but he really would like to go someplace special once in a while. The problem is that it is lunch! Not supper. Most of the places around here do sandwiches and salads at lunchtime and he really wants a real meal.
Lunch at home is even harder than trying to agree on going out someplace. Mainly because he no longer can make a decision even between two things.
Well, off to make lunch. I'm heating up a variety of things for us to share and that ought to work. Or maybe not.
Joan, Before AD, I used to get the "what should I have for lunch" question and suggest a few things or suggest he find something. Now, I am finding the question is being asked in a different tone of voice. It used to be more of a "I don't want to bother to see what there is", but now it is more a tone that seems to say "I don't have a clue". Is it possible that Sid is having the same type of conversation as before, but for different reasons? PatB
I get the "I don't know -- what do YOU want" routine ALL the time. I've found it isn't so bad if I use visuals. For example, if I'd like input for dinner, instead of asking him would you like (a) or (b), I show him pictures of the two dishes. Almost all of the time, he'll point to one or the other, rather than continue to insist that I choose.
I just went home for lunch. I asked my husband if he would like waffles for lunch (he LOVES breakfast food anytime - always has) and he said yes. I put them in the toaster for him (since I'm limited to broth and green Jello!) and he went out to the freezer on the back porch and brought me to Mexican TV dinners! LOL
I thanked him, put them in the kitchen freezer and served him his waffles. Poor baby, he was trying to help! <grin>
As Mary said, the inability to make decisions is due to AD. I am now making all decisions for my wife - picking out her clothes, deciding what we will have for any meal, ordering for her in restaurants, planning outings, etc. If I give her a choice she either says "I don't know", or selects the second item mentioned (probably because she can't remember the first).
Restaurants? Eating out? what's THAT? We eat out maybe once a year or so. Maybe we'll go get sushi on our anniversary in a couple of weeks.. He hates getting into the car (it's hard on his leg) so we don't go out. I do sometimes order in pizza or pick up ready-to-eat.
OTOH, he always eats, a LOT and anything i make. My latest kick is SQUASH BLOSSOMS! Just what to do instead of having those giant pulpy zucchini! and they have them at the farmers market nearby.
Oh, I know it's the AD. We did play cards. Funny thing. He can't remember what's trump. Can't remember who is partner is. But when he gets the bid, he plays brilliantly but he can't add up his own points or his meld. He wolud be very sad if he couldn't go play with his friends. They, by the way, are wonderful with him. And if he makes a huge mistake, they tell him he can't do that. make him pick up whatever he did and wait until he gets it right. He is able to laugh at his own mistakes. For that, I'm grateful!
On Thursday night at 5:30 I was watching (trying) a movie on TV. I could barely hear it, my husband was upstairs with the music blaring so loud. Then a call came in from one of the resumes I had sent out. I muted the TV & asked the guy if I could put him on hold so I could go into my office. I asked my husband to PLEASE turn the music down, the call was about a JOB. Nope, he wanted me to take the call OUTSIDE, because he was listening to the Who. I pleaded with him, this is a job, etc., and finally got him to turn it down. What a struggle. Now if this isn't childish, I don't know what is. I did end up getting an interview....whew.
Then yesterday I discovered he had received a letter from the IRS. He FORGOT to turn in his trades on a schedule D. I fortunately filed married, filing separately for the 1st time this year. He pouted, but oh well. I had read about a woman whose husband had died after screwing up their return & the IRS was hounding her. I took note of that.
Then, today, I just couldn't bear to look at him anymore. He looked like the mad scientist. He refuses to get a haircut. I swear, he would let it grow to his knees if I didn't cut it. So I told him to sit down, I was going to cut his hair. He liked that. Now, last month I gave him a coupon for a $5.95 haircut at Super Cuts, but he never went.
My hairdresser comes to my home. Why? That's another story but she's been coming here for over a year. About 6-7 months ago DH would no longer go to his barber because the guy charged a fortune and did a crummy job. I asked my hairdresser if she could cut his hair, too. She said sure. She cuts his hair (what there is) trims his eyebrown which he really needs and shaves out his ears. He gets aggrevated with her and insists on a mirror while she is working. She is just a dream. She sweet talks him all the way through it and tells him how handsome he is, etc. He swears by her and wouldn't let anyone else but her do his hair. I am really glad for that because his eyebrows were so long and shaggy they were almost in his eyes and the hair in his ears looked like big tufts. This is better. This is good. I am very pleased! (big happy smile!)
I want to add. Prior to this site & the information gained from it.....After he had argued with me about turning the music down, I would have gone into his office & asked, what is WRONG with you? This was important, this was about a job. Not a word from me afterwards.
Then the letter from the IRS, I would have said, see, I knew you would mess it up. That's why I filed separately. Not a word from me afterwards.
And, not getting a haircut. I would have said, I gave you a coupon, why can't you just go and get a haircut like you have always done? Not a word from me.
I want to cry. It is no longer a marriage. It is handling things in the best way I know how.
It's difficult to hold your tongue. But I am avoiding the BLOW UP. Good girl, you have learned.
Mawzy, on bridge, our friends and I did the same thing you described for a year. It got to where he couldn't handle it any more. Our friends were awesome and so patient. It wasn't the cardplaying, but the comraderie and just being together that counted.
Kitty, I'm proud of you and for you!!!! It is hard not to continue to beat your head against the brick wall....but after I took enough Tylenol, I learned as well. <grin>
Kitty--You're a better woman than I am. I would have just gone in and pulled the plug. Maybe my DH has not progressed as far but every once in a while I let fly and just tell him like it is. He stops what he's doing for a minute and then looks sad and says "sorry." Of course, I feel like a dime--yelling at a little kid like that. But I do get some results--for a short while anyway. Not a good plan all the time. Just on an occasion. Doesn't make me feel any better though. I guess I'm just venting.
Good for all of you. I keek praying for patience but it's really slow in coming. Perhaps it's something I have to work toward. Ya' think?
Have any of you in a second marriage ever been so angry that you wish you had never remarried? That happened to me this morning. I know I*'ll get over it but I really lost my patience completely . At least I didn't say it to him.
DH gets up and goes to bed 500000 times a day and nite. Every 10 minutes for HOURS on end... Now...he insists on being "tucked in" each and every time. Yells from the bedroom if I don't come...."tuck me in, tuck me in, tuck me in!!!"
If I don't go to him..he says he won't know if he is ok or safe.
Drives me NUTS, but an increase in Exelon seems to have helped a little.
Hubby just came in and started rubbing my back( which he knows I love) and asked if I was still mad at him. and of course I said "no". My doctor had prescribed pills for me . I think I''d better start taking them to help both of us.
Okay, I will add my two bits, too. I am "on the other side" of this now that my husband died, but I will tell you that I never had patience....I was pissed most of the time. Even though I knew he didn't want to "act" like that, it didn't help that the behavior was annoying, maddening and downright aggravating. How did I get through....I gritted my teeth and pushed on. When I had enough I found a good place for him that could care for him until he could come back home.
His personality went from being a most wonderful, courteous, charming and meticulous person to being an awful, ill-mannered, nasty and unkempt "little boy". It was at that point that I emotionally separated myself from him. Don't ask how I did it, but it did happen. It was probably easier for me than some because his change was total and there were never any "nice" moments for us. He was a driven man in his "real" life and that is how he chose to handle this disease. He fought tooth and nail and made everyone's life a living hell.
But, that being said, I did take care of him at home for over three years until he died....those were the calmest and nicest years of the eleven AD years. He couldn't move, walk, talk or fight anymore. Life was good....even though I had a very large infant to care for. There is nothing easy about this....
Okay, probably more than you all wanted to know...LOL.....!
Ok, back to the food issue. I started noticing that when we went out to eat that he would not order until I did then he always ordered what I ordered. Rarely does he order anything else and when he does it is always fish and chips...always..drives me insane. I noticed that when we eat in a busy restaurant he does not talk to me at all but if we order to go and go to the park to eat, it is almost like old times. We have nice conversations about memories of taking our children to the park. I know it won't last but right now it is nice.
From what I have read, this is a symptom of FTD. The last few days my husband thinks everything is funny, laughs at every commercial on T.V. doesn't matter if it is funny or not. He burped really loud, thought that was hysterical. This morning he was putting his fingers in his ears, waving them & sticking his tongue out at me. Just like a child would do. So far the agitation has subsided, been replaced with this childish behavior. I know the agitation was worse, however, this behavior is a close second. Not everything is funny.
Sandy, my guy has a horrible time ordering in a restaurant. He love salmon so he will hunt on the menu for salmon, but forget being able to get through the side choices. Recently, he doesn't even seem inclined to hunt for the salmon and asked me what I was having (I guess the choices have become overwhelming.) I said I was torn between two choices and he said I should get one and he'd get the other. That was fine with me so we ordered accordingly. But when the food came, he was sure he'd gotten the wrong dish and there was a look of shock on his face. He didn't put up a fuss because that takes too much energy for him, but he clearly didn't enjoy the meal and left quite a bit on his plate. Even going out to eat is getting to be a challenge. It's so sad.
I want to thank you all for commending my patience. However, I don't think it is patience, it is emotional survival. Still, I'm proud of myself for outsmarting the demon. Where would I be without this site? Arguing for nothing.
I hope I didn't offend anyone this morning with my post. I really do love my husband but I just completely lost it this morning. I came on the board hoping to get a little advice to calm me down. I just have to keep telling myself to ignore a lot of his remarks. It's all the AD talking.
Sandy--Sounds exactly like what goes on here. He will not make a decision at a restaurant, what he wants for dinner, where we go for a walk....you name it. I don't even want to go out anymore. And, he's really critical of almost anything. The way the neighbors mow their lawn (or don't mow), the guy across the street who doesn't take his trash cans in right after the garbage man collects. One fellow down the street scraped his house to get ready to paint it. He still hasn't painted it. I said maybe he didn't have the money to paint it het. He figured if he didn't have the money to finish the job, he shouldn't have scraped it. Sigh.
Carolyn, I appreciate your sharing your morning - my husband was acting out terribly today. I was trying to ignore the bad behavior and focus on getting work done but he just kept yelling and snarling and criticizing everything I did. I asked him nicely to not talk for awhile, I suggested he go watch golf or the olympics (which he loves), he followed me around and just stood watching me work and saying negative things and yelling. At one point just as i bent down to pick up a shoe he said something hateful and turned his back to me. My right hand started to throw the shoe at his back but my left hand jumped out and grabbed my right hand and I stopped myself, but I feel quite badly that i got that close. I wish he could/would tell me what was bothering him so I could fix it. I hate these episodes!
Question for you all as long as we're talking about strange things.... Does anyone's loved one refuse to walk alongside you when you are out? Mine just can't seem to walk NEXT to me, but prefers 3 or 4 steps behind. This is a constant no matter how slowly I walk. It happens on walks in the neighborhood, at the zoo or the mall, really anywhere where we are walking - even from the car to the store or IN the store! Is there something about this that I'm not aware of and should be?
Liz - see the article on the home page called "understanding the dementia experience" -- it's a given that their eyesight is going to change ~ Sounds like your LO's has...holding hands is a good "fix" for it...
Liz, the trailing behind is very common. He will get further and further behind the longer this goes on. It doesn't matter how fast or how slow you walk. Sometimes, in a store I'll just stop and let him catch up. Sometimes he will just stop too 20 paces away. And it isn't just with me. Some men in the neighborhood have gone out to lunch with him, and he does it with them too.
He actually doesn't walk all that slowly unless someone else is with him. When he is alone he walks normally as far as I can tell.
We have discussed this before, but I don't remember the thread. But a lot of our LOs do this, both male and female.
My husband also walks behind me when we are out. Drove me nuts, until I read a thought on this board, that since they are confused on where they are going, they like to follow. Still bugs me, but not as much.
Mine does the same thing. Sometimes I have to turn around to make sure he's there. And if there's room enough I do hold his hand so he'll walk beside me. Today was a much better morning. I'm smiling, just don't know how to do that smiling sign.
I had not thought about the trailing to be part of his AD but my DH does this all the time and I just want to scream. I have asked him if he was embarrassed to walk with me. Now I will feel more comfortable with it.
I guess i shouldnt be complaining about this because as long as DH is in the defiant and arrogant stage he is at least still functioning enough to pull that off!") when he is especially cocky he will say, 'i may or mayNOT want to do that! and cocks his head at me and calls me 'KIDDO-ugh, this kiddo one just erks me to death, its been his way of talking down to me i guess but boy it gets under my skin. i know i should be fixating on what his good qualities and limitations are instead..but you know how annoying things can be when you are not in a particular good mood yourself!divvi sigh.....sigh.