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  1.  
    A tale of sundowning.

    My son is in school in Connecticut. Two faculty members are in the area for the usual purposes of making connections, meeting families, building relationships with people who might contribute to annual funds and whatnot. (not that they sold it that way.)

    Still, being invited to dinner in Bethesda (northern D.C., an hour from our house,) did make me want to go. I like talking to people who can talk, after all. And the snow had abated, plus my incipient cold wasn't too bad.

    So we went. (Although I did email a heads-up about why our dynamic might seem a little odd.)
    And I'm glad we went. I dread the day when I'm completely stuck at home, yet...after tonight...I fear it is not long in the future.

    First, Jeff splashed gasoline on me on the way. Well, he likes to pump the gas you see. Which really means we both get out, I feed the card into the pump and push all the buttons, open the gas door, and (most of the time,) help him find the nozzle and insert it in the fill thingy. Tonight he didn't know up from down, but was still going to do it, so I guided his hand to the nozzle which I'd already inserted. He gripped it and yanked back, thus splashing me with a fountain of gas. Stinky.

    Luckily, we got to the restaurant at the Bethesda Marriott early enough to use the bathroom. When he didn't emerge in 5 minutes, I opened the door to find him unable to figure out where the door was and how to exit.

    Otherwise, dinner went ok until the end, when the folder which holds the check and credit card was sitting on the table to my left (by the faculty member.)
    "That's my book," he says to me (luckily not loudly.) "No, it's for paying the bill," I said. "You didn't bring a book."
    "No, that's my book."
    So I showed it to him. "See? It's the check thing."
    "I brought a book," he says.
    (At this point dinner was over and I politely excused us.)
    Jeff was quite agitated which is very unusual for him, and took off down the Marriott hallway, determined to find his book.
    "Are we staying here?" he said.
    "No, we're going home."
    "Not without my book."

    Happily, it worked for me to guide him to the car, but I had to drive home with a very full bladder because he refused to sit on the bench outside the ladies room, and was too agitated for me to leave him alone. Bleck. He went to bed easily tonight.

    This kind of stuff is pretty new for me. Despite his being in stage just-barely-6 functionally, he's usually quite placid and compliant.
  2.  
    I am at the point with my dh that I may need to find family bathrooms at stores. I have scoped out where they are in a few of them but not all of them. But the way my dh gets so stressed when out in public, unless it is just outside, I don't think we will be going to many stores in the future. We have already cut back on going out to eat and going someplaces. It is difficult but necessary for us. My dh gets so confused and scared it makes my heart ache to see him. I am trying to calm him down the whole ride home and feel like I am not being able to concentrate on driving and him at the same time safely. Always something to adjust too with this disease, but we will figure it out. Hope things work out for you and your dh.
  3.  
    Emily--would it be possible for you to take Jeff into the ladies room handicapped stall with you? I do that when there is no family bathroom. I tell my husband that I am the one who needs his help in there (to hold my purse). We have only had one incident where we were questioned by store employees, and I explained that he has a disability and I'm helping him. I should have taken the sign with me that I made to clamp on the stall door, (which says the same thing) but didn't have it with me. Just pretend you're in Europe with a unisex bathroom!

    Giving up pumping the gas was a touchy thing for us too. I think it was linked in his mind to giving up driving, and took a while for him to adjust to me doing both. Eventually, I would try to always get gas when I was out without him, to avoid the problem.
    • CommentAuthordivvi*
    • CommentTimeJan 29th 2011 edited
     
    Count your blessings you are able to convince them to get back in the car or do as you ask. sometimes they can become quite difficult and belligerent. esp if out in public it can become quite a scene. it became a stress to me to not know if DH would be agreeable or not once i could see things escalating. i reccommend having in your purse an extra dose of something to give them if it becomes necessary. i cant tell you how many times over the mid stage yrs that DH refused to get in or out of the car. talking loudly or trying to leave a restaurant on his own. ugh. makes me nervous just remembering. at some point you will know if you can safely still get out with them.
    divvi
    • CommentAuthormaryd
    • CommentTimeJan 29th 2011
     
    I find DH does better in familiar restaurants. If we go somewhere new, he is confused. When we go out to eat, he usually wants to leave as soon as he is finished. Forget about socializing with friends, waiting for the check, etc. He is ready to go. I have mentioned to him that I was enjoying myself and he did not understand. I find that he is very self centered. He thinks everything is about him. If I say that I have a dentist appointment, he replies, no, I have a dentist appointment. Sometimes, he tries to put my clothes on if he sees them in the coat closet or on the bed. As for pumping gas, I get it when he is not with me.
    • CommentAuthorJean21*
    • CommentTimeJan 29th 2011
     
    The only places my DH wants to go is out to eat or to his doctor's appointments! He doesn't want to go shopping and doesn't want people around. He always was a bit of a "loner". He is okay with one or two people he knows and likes but there is no way I could get him out for anything social. Taking care of the car (and everything else) is up to me including gassing up.
    • CommentAuthorphil4:13*
    • CommentTimeJan 29th 2011
     
    We have stopped traveling because of the bathroom issues. You just can't be sure there is accommodations for him. As far as putting gas in they seem to want to help. Now that it is cold and messy out my DH is content to let me get out of the car and pump gas while he stays warm. When it is nicer out he wants to pump which means both of us getting out and doing it.
    Last night we went to one of DH's favorite restaurants for dinner with friends (a Friday night ritual). When we were leaving I noticed his hat looked very strange. I took it off of him (with a bit of a battle) and he had stuffed one of those triangular display ads (ads for dessert etc...) into his hat. Thought he could use it for something! Now I have to repair his hat as he pulled all the stitching out that holds down the brim.
  4.  
    Sorry...as not funny as it is, I'm chuckling about the ad thing in his hat!
  5.  
    When my dh was still able to go out, we went to buffet with about 4 other couples. When finished, we were the last to leave the table. I started up to the cashier with him folllowing. Suddenly, I realized he was not behind me. I turned around and he was picking up the tips from our table (and others). It was hard to explain that it was not our money. Of course, other diners were becoming outraged about his stealing tips. So goes the world of AD.
  6.  
    phil4:13, I know at the moment it was not funny with your dh's hat, but reading it is just another way of helping the rest of us make it thru a hard time. Yes, I am laughing also. I thank God everyday for my cyber family on this site that helps me make it thru a rough time. Reading these post is great. I am sorry you are going thru this but we need the funny times also. I am hoping you and yours has a great day..... please keep sharing the "funny" moments, they make my day......
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      CommentAuthorBama* 2/12
    • CommentTimeJan 29th 2011
     
    Eating out....hmmmm...I seem to remember that. It has been more than 2 years that we have done that. The only place he goes is to the Doctor's office when It is necessary.
    • CommentAuthorphil4:13*
    • CommentTimeJan 29th 2011
     
    Have a lot of funny moments in our house. I'm glad you find it in the same humor as I do. You'll love this then. Went out with friends for lunch today at a restaurant that serves peanuts on the table......big mistake....once again his hat was useful as he filled it up with peanuts to bring home....at least he didn't try to put it on this time!
  7.  
    The mid-stages were certainly eventful. Those were the days when I was sometimes able to take my DH to the store with me. As Divvi mentioned, getting him in and out of the car could be quite difficult. I can still see me trying to convince him to get in the car at Wal-Mart, while he yelled "Help, she's killing me!" to every passerby. Funny now, not then. Divvi, how did you ever get your DH to take an extra dose of medicine during a scene of this kind? Mine was so enraged, he spit the meds on the ground.
    • CommentAuthordivvi*
    • CommentTimeJan 29th 2011
     
    i would stick a pill inside a small peice of candy bar and he'd never refuse that = sweets usually work to enduce them to take a med if you get creative:) and yes i ALWAYS had one in my purse or more in the glove box in the car! just in case. i could lure him into the car by showing him a candy bar. gosh those were hard times as well as frustrating!
  8.  
    Divvi, does it really get better for us as they get worse?
    • CommentAuthordivvi*
    • CommentTimeJan 29th 2011
     
    thats not a good thing to answer but honestly-yes- as they become more like babies, its easier on the caregiving. they arent into things, dont escape, arent mean or rude and become quite docile. its a very sad exchange but yes i think its so =unfortunately. remember some of the friends here have brought their spouses home from NH at this stage -
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      CommentAuthorchris r*
    • CommentTimeJan 29th 2011
     
    As much as DH seems to be later stage 6, he has been getting more difficult every day. nasty to me, calling me stupid, a lier, anything else. Cursing up a storm, even in th middle of the night. up all night, even after sleeping pills. Thank god for Day Care. however, i am finally thinking seriously of checking out any optons i may have. he's so nasty to me, I just don't want to be around him. Then when I walk back in the room, he's all sweetness & light. AAARGGG, I'm not over my hurt yet.
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      CommentAuthorBama* 2/12
    • CommentTimeJan 29th 2011
     
    Doesn't it make you mad when you are still upset and they have forgotten the conversation and are all smiles? When DH gets nasty with me I have started telling him to do it himself and walking out of the room. He remembers my name in a hurry and is calling me to come back and help him. Tells me he is sorry for what he said. Of course, if I ask him what he said he really doesn't remember. I must be getting hard hearted because it doesn't bother me as much as it did. I don't want to live with hurt feeling because it's like beating your head against a brick wall and that hurts nobody but me.
    • CommentAuthorElaineH
    • CommentTimeJan 30th 2011
     
    Bama & chris – Thanks for your posts. I am going through the same stuff & I was wondering how others handle it. Right now he is sitting across the room from me & he just sarcastically said,” Hi Sweetie, how are you today.” We are getting ready to go to church & I’m hoping that he behaves himself. He had a mini meltdown once last fall, but an alert usher guided him out & talked to him. A friend is taking him out to lunch after church & then to her house so that I can have some time to myself (God bless friends like that). I guess I will go shopping at Wal-Mart. It will actually be nice not to have to watch his every move & wait until he is finished talking to whoever makes eye contact with him. Anymore I hate taking him along when I go shopping.
    Bama, I also feel hard hearted. Now when he apologizes & cries when he realized that he has been hateful, it takes me a long time to respond. I think that is part of the detachment process that we start.
    divvi, I know that it isn’t really better as they progress, but I just hate the evil looks, being accused of stealing his “stuff” & all the other hateful things that he says & does. Like you said, it’s a sad exchange.
  9.  
    It IS a sad exchange...but definitely easier to deal with. My DH is much more docile now...thanking me all the time for helping him, apologizing to me at times when he needs me to do something like help him in the bathroom, etc. We also went through the "angry" stage...the awful looks he gave me, accusing me or the kids of taking things (that he couldn't find, so he assumed they were stolen). Now he is a lot calmer and more agreeable...seems like it started to change when our Neuro put him on the Exelon patch about 2 yrs ago...hasn't done a lot for the confusion...and maybe it's just coincidence, but we will continue using it for awhile. BTW phil4:13, I loved the "hat stories" :)
  10.  
    When my hb entered the middle stage of AD, I used to think things had improved and this life had become easier to cope with. Now I would say that actually, what I was feeling was due to the high stress level being replaced by ongoing sadness. And yes, it is easier for me to live with the sadness daily than the constant stress of the early stage.
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      CommentAuthorJeanetteB
    • CommentTimeJan 30th 2011
     
    Bella, I too found that Exelon makes dh more agreeable.
    And yes, as the disease progresses he has become easier to manage. For one thing, he forgets what I have promised him or the goodies we have bought in the supermarket, or where the keys are kept, or that when the doorbell rings at 9:15 it is the day care van. He is more docile now (stage 6) than in the midstages.
    Other things have become more difficult: he is now often unwilling to get out of the car -- whether at home or anywhere else. In restaurants he will finish his wine or food in a hurry and reach for mine. The food I don't mind, but I have learned to hide my wine behind the condiments or menu, anything that is on the table. It doesn't have to be well hidden, just not obvious.
    Another thing that has become harder is that I can't leave him alone at all.