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    • CommentAuthorJanet
    • CommentTimeOct 4th 2009 edited
     
    We saw our financial advisor on Friday. DH told him that he had quit driving. He also said that since he wasn't going to be driving we might as well get rid of his truck! The financial advisor said he might be interested in buying it. I knew the whole thing was too good to be true!

    Saturday, DH was going on a walk with the Audubon group at 7:30 a.m. He even arranged a ride for himself so I didn't have to take him and could sleep late. It was raining and the person he was supposed to ride with called three times before 8:00 debating on whether to go because of the rain. I didn't sleep late, because the phone kept ringing. DH listened when I called my sister and told her I wasn't going to pick her up for church this morning, so that I could get some extra sleep since I didn't yesterday. I can't believe how tired I am.

    Last night, we were on our way to meet friends for dinner and a play. DH informed me he had decided to go watch birds on his own this morning at 6:00. I said he was not going to, because I needed to sleep late and wasn't going to take him. He said he could drive himself; I said he could not. He called me stupid, stubborn, unreasonable, and a lot of other stuff. I told him he was selfish. He screamed at me all the way to the restaurant, and I argued with him. He was fine when we got there and enjoyed dinner and laughed all through the play. I was upset the whole time. I know all the right things to think - it's the disease, not him; the reason button is broken. I also know I shouldn't argue, but do I have to do whatever he wants when he wants it? He can be so reasonable and pleasant with other people and so unreasonable and unpleasant with me. You all seem so much more able to handle this than I am. I'm crying now thinking about it. By the way, he did finally agree that it didn't matter if he went this morning or tomorrow (Monday) morning, so I did get to sleep in.

    DH says I wouldn't be so tired if I went to bed when he does - between 9:00 and 9:30, but I don't. First I need time alone after he goes to bed. Second, I can't go to sleep that early, and I often don't sleep much anyway. Sorry, just feeling sorry for myself. I'm tired now, but I'm drinking wine and crying. I think I'll have another glass. I'll probably feel better tomorrow at 6:00 when I take him bird watching.

    Sorry, again - all I do is complain and whine!!!
    • CommentAuthorterry*
    • CommentTimeOct 4th 2009
     
    Damn Janet I wish I didn't have such a splitting headache so I could do a better job at offering you some words that might help. First, are you kidding that we all handle this better? I've never handled this kind of thing well at all. In fact I just finished reading Joan's blog about Sid's attitude about helping with the packing and would love to have the energy to write a 300 word rant about the way my DH didn't help during our moves and reno.

    I'm the worst too at needing TIME ALONE after DH goes to bed between 8 and 9:30. I can't get to sleep before 3 because I just can't let go of that "normal" time. Almost normal. He sleeps till 10 or later if he wants and I have to get up to deal with the various workers and complications happening early around here.

    Thank god for this site because otherwise I would never have known others were going through this exact same thing. And certainly no one would be able to see it as mine does as yours which is to act so UNimpaired by dementia in public. I did my share of arguing and temper tantrums and even running away for weekends when it got really bad in the first couple years. Your reactions are perfectly normal. It will take some time before you work out your own way of living with the self centeredness and lack of empathy that often comes with dementia. Plus, I believe that my DH did take in some of my complaints on some level as the other day he said a friend of mine must have dementia as she was acting irrationally the same way he was when I would tell him he was accusing me of things I hadn't done. What a shock that was.

    My 6:00 AM bird watching was 5K runs DH managed to train for, register for and enjoy the heck out of while I was being his "cruise director." Being tired and dealing with this stuff is so difficult Janet. Give yourself a break and know that you are not alone in this. I hope you're drinking some good wine. God I wish I had a Marguerita. Hugs, Terry
    • CommentAuthordagma3
    • CommentTimeOct 4th 2009
     
    I have experienced events like you have described. It is so hard to understand how they can be so much fun with other people and awful to us. It hurts, isn't fun and sure isn't fair. Enjoy your wine - you deserve it!. I am up late because I can't sleep - stuff stirring around in my head. He is sleeping like a baby. Nothing for him to be worried about or concerned with.......... Thanks for sharing. Maybe a very large bird will come and carry him away :-) - well it might feel good just to think about that happening.
    • CommentAuthorWeejun*
    • CommentTimeOct 4th 2009
     
    Janet, Terry, Dagma, you just stole the words and thoughts out of my poor, tired head. I am so sick of it always being about HIM. Seems the only way to survive this is to lose all sense of ourselves -- I don't think I can do that -- but don't know how to avoid it. Weary, weary, weary. There has got to be a better way. My only hope is that together we will all get through this. Soooo bad to say this, but I long for the day I come back with the asterisk...
    • CommentAuthorterry*
    • CommentTimeOct 4th 2009
     
    NO WEEJUN. That is not the only way to survive this. The opposite. We MUST NOT LOSE OURSELVES. I hear you when you say you don't think you can do that but don't know how to avoid it. Maybe those who have been through this longer than us can help us with some tips. Because AVOID IT we must. I'm working on it and when I get rid of this headache (post concussion syndrome wrote about in the concussion thread) and my house guests I will try to sort out my jumbled thoughts and experience with this and hope to hear from those who've been down this particular road. In the meantime women DRINK UP!
    •  
      CommentAuthorJeanetteB
    • CommentTimeOct 5th 2009 edited
     
    Janet, your comment "but do I have to do whatever he wants when he wants it? " hits the nail on the head. Feels so unfair so much of the time.
    Dh refused to allow me to hire someone to mow the lawn this year (No one else was going to touch HIS precious lawn mower), but will only mow a couple rounds. Then just refuses to go on and says I should do it myself if I want the rest done. So I do, but he has the garden all divided into cute little bits and pieces so that the lawn mowing is labour-intensive and hurts my knees. But he tells everyone he mowed the lawn himself (AND he really believes this). Amazing. So unfair.
    But, in danger of sounding like a broken record, I do have to repeat that getting him on Risperdal has made him, maybe not less unreasonable, but certainly calmer and more cooperative, so that I no longer have much ranting to deal with. It really helps.
    • CommentAuthorbookworm
    • CommentTimeOct 5th 2009
     
    Mine is on Seroquel and which he takes at dinnertime and usually is in bed and asleep by 8:00 pm and I so appreciate my "me time." But every once in a while, he doesn't fall asleep and then keeps getting up and demanding that I go to bed. It could be 8:30 or 9:30 and the demands keep up until we end up fighting because I feel that if I give in I am doomed. Living with this disease is hard enough with all that I take care of around here, plus having given up life as I knew it and basically have become a recluse because I fear leaving him alone for even 15 minutes. I also have to suffer the heartbreak of him not thinking of me as his wife of 48 years but as someone he just met and wants to marry and have children with. The two that we have who are now grown-ups he doesn't even remember. So I feel that those couple of hours of "me time" iin the evening to relax and be "me" is not too much to ask.
    • CommentAuthorJanet
    • CommentTimeOct 5th 2009
     
    This morning DH is off bird watching with my cell phone so he can call me when he wants to come home. He has my phone, because he lost his. It has to be here somewhere...

    Thanks for all of your support in the middle of the night. We have an appointment with the neurologist next month. I'll ask about medication then - unless I decide I have to ask sooner! Thanks, again.
    •  
      CommentAuthorchris r*
    • CommentTimeOct 5th 2009
     
    My 'me' time is usually in the morning. He doesn't get up til about noon, and I actually resent those times when he gets up earlier. we need to have that time. My DH thinks that I should be sitting and talking to him when he is up, nonstop. the other evening, my son and family came over and DIL and I went to see 'Julie & Julia'. delightful picture, but it was marred by the fact that I was afraid he would be angry when we returned home. I didn't want to go home, but couldn't wait to hurry home, to make sure he was OK. It's really not easy.
  1.  
    Janet, I put my weekend "fun" under Full Moon. Take a look. We all seemed to have a tough weekend.

    Mary!!
    •  
      CommentAuthormary75*
    • CommentTimeOct 5th 2009
     
    Just to add my two-bits worth: try very hard to hold on to something that you get great pleasure from, and ask, or pay, someone to release that time to you. For example, I ask my daughter to take over for me for a couple of hours a week. I pay someone to come in and check on him at the Care Facility when I can't make it. This makes it possible for me to go to the YWCA 3 x weekly and to a University class the other 3 days a week. It doesn't work perfectly and it is not easy, and everyone will have their own ball to bounce. (Sometimes my daughter isn't available; smetimes, I can't hire someone.) But it does give you back the idea that YOU do count, and that YOUR LIFE is important. In the long run, it is better for your spouse because you're not ground down into a pulp and can handle things better for them.
  2.  
    Hey, everyone who had a bad weekend, we must remember as Mary in Montana said - that it was a full moon weekend and those are always the hardest on us!!! I wish someone knew WHY and how to countattack it!!!

    Janet asked "do I always have to do whatever he wants when he wants to do it" and the answer is no, of course! The trick is to redirect him and give him an alternative that is more attractive of something YOU want to do. Experience will lead you to know what to say and how to approach him.

    I can take my husband to TCBY which is two blocks from the house and get him a chocolate malt and he'll follow me anywhere. Now, this might not work on your guys, but it is what is NOW working for me. It might not work next time. It will always be hit and miss.

    Mary75 gave you excellent advice as well.

    Janet, when he states what he is going to do the next day, just smile and say nothing. Sometimes he will just forget about it, or you can claim you forgot about it.....It is amazing how much I forgot during that stage! <grin> Or how much I would say "we'll do it tomorrow" knowing he would forget by then! <grin>

    I hope this helps....
    • CommentAuthorAdmin
    • CommentTimeOct 5th 2009
     
    As Terry said, this topic seems to fit in with the blog I wrote for today (Monday). Please read it and continue the discussion here.

    No matter how much we learn; no matter how much we practice doing "the right thing"; no matter how much we know about living with this disease, sometimes it is just too much to be expected to handle the broken reason button in a calm manner.

    joang
    • CommentAuthorkathi37*
    • CommentTimeOct 5th 2009
     
    Amen to that, Joan..but..who is the learning challenged one here? I keep trying to make him understand why this shouldn't be done or the dangers involved..Duh!
    • CommentAuthorbookworm
    • CommentTimeOct 5th 2009
     
    Sometimes putting whatever he wants to do that I know won't work out off until tomorrow works quite well because he does forget. However, sometimes he remembers and then is quite irate because "I always say no to everything." I am more amazed at what he remembers than what he forgets. All this manipulating and managing does make one weary. I will certainly agree that it was a tough weekend in this house also. Often I find that when he thinks I am the girlfriend instead of the wife I am better off because the girlfriend is nice and the wife is the one who he finds is s-o-o-o bossy. One day I complained that he always argues with me no matter what I say and his answer was, "I do not."
    • CommentAuthorkathi37*
    • CommentTimeOct 5th 2009
     
    Bookworm, similar to your comment, I asked why he was doing a particular thing when asked not to..his reply..because it P-----es you off! Can't get more clear than that.
    • CommentAuthorAdmin
    • CommentTimeOct 5th 2009
     
    Bookworm,

    We had the EXACT conversation in this house. EXACT. I said - "You argue with everything I say." He said, "No I don't."

    joang
    •  
      CommentAuthorJeanetteB
    • CommentTimeOct 5th 2009
     
    Bookworm and Joan,
    Those are "alrighty then" moments!
  3.  
    Janet: Thanks for writing about this. You have already received some excellent advice, but, my perspective is a little bit different, but, somewhat the same.

    My DW will not go to bed until I do, or if she does, whe will not go to sleep until I come to bed. Absolutely refuses. Our bedroom is across the hall from the computer and she calls every 10 minutes wanting to know when I'm coming or she comes in where I am and lays on the couch wanting to know who all of these women are that I am writing to. No quiet "Me" time. I refuse to let her read my posts. There are just some things (but, not very many) that are mine. I have even stopped in the middle of something when she is hovering over me. What I wouldn't give for some "Me" time.

    Maybe just the difference in men and women, but, she has started crying (I mean boohoohoo) about things that she thinks are not going her way. She always cried to get her way (and it generally worked), but, this is different. This is after she has blown a gasket and wanted to move out or get her own apartment.

    I think that only you can understand what I am saying. Not our friends, neighbors, or even children. I am so thankful for this website and your willingness to express yourselves on it.

    PS: Her purse and cell phone are lost too. She hides them and then can't find them. I wouldn't care if she didn't have a nervouse breakdown (well almost) every time it happens.
    •  
      CommentAuthorJeanetteB
    • CommentTimeOct 5th 2009
     
    Dean, do you think some kind of sleeping pill would help? No experience here, my DH (thank heavens) goes to sleep early.
    It sounds like she is really giving you the runaround right now. Maybe the full moon effect?

    To me it sounds like she is panicky, frightened. It must be very frightening to lose things all the time, and to feel so lost herself. I think that when she threatens to leave, she is really wanting reassurance that YOU want her to stay and that you will take care of her. My DH tells me almost every day (or at least every day when I've left him for half an hour) that he's going to lock me out of the house. I just reassure him that I'm staying with him, and not leaving. That's what he really wants to hear.
    • CommentAuthorscs
    • CommentTimeOct 5th 2009
     
    Dean..is she on any medication for sleep? Have you tried the laying down with her for a few minutes until she falls asleep? Another far fetched idea...given the stage stage is in...have you tried a yummy doll or stuffed animal to sleep with?

    You do deserve some "me" time. I would definitely used a "fiblet" ..you are either working on the computer...doing research or learning some exotic language. Forget writing to other women. Even in her demented state that " ain't such a good idea"!

    Does she know how to dial her cell phone to find it? Hoping that her cell phone is in her purse another nervous breakdown averted. We all tricks up our sleeve...hope these help.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 5th 2009
     
    Yup I'm having these thoughts and this stuff at my house too. He isn't having much in the way of full moon events this month and I'm not sure he ever has them timed to the moon, but I had some thoughts that were just identical to what everyone else here is thinking today. I find that I'm spending huge amounts of energy just trying to redirect him or get him places he needs to be or [fill in the blank]. And it is exhausting!

    Did all of that today and didn't manage to keep him from going on an hour and a half almost two hour walk. Got him to agree to the Chinese Restaurant for lunch instead of the diner, and we went to Kohl's and I actually bought him two shirts, underwear and myself two calendars for next year. And then he expected us to go to the doctor. Insisted he had an appointment. Was going to go and see the doctor and ask him. Don't tell me what he was going to ask him or how he was going to get there (although he actually could get there since it is within his range). Totally Exhausting!
    • CommentAuthorAdmin
    • CommentTimeOct 5th 2009
     
    I can't help feeling sadness that his personality is being taken away, replaced with apathy, indifference, and confusion. Usually I can work around or through the sadness or push it to the background, but this time, it's fighting me for control. It's winning. Guess I'm in line for another attitude adjustment, which I will probably receive tomorrow in support group.

    joang
    • CommentAuthorJanet
    • CommentTimeOct 5th 2009 edited
     
    For almost a year my sister's car has been sitting in the street in front of our house. She refuses to let me sell it, because she's convinced she's going to drive it again. Remember that a year ago she fell and severed a nerve, an artery, and a tendon in her right ankle. She cannot control the movement of that ankle. She wears a plastic brace that goes under her foot and up the back and sides of her leg almost to her knee just to keep the foot from flopping down. So her foot is either at a 90 degree angle with the brace or flopping without it. DH has decided he no longer wants the car sitting there. We can take it to the assisted living facility where she is living, but it won't start and the battery won't do anything when we try to jump it. It needs a new battery. DH says he can change a battery. Sister says to get it towed and have someone else put in a new one. Oh, by the way, she has no money, except for some in an IRA that we aren't withdrawing right now, so her taxes for this year don't bankrupt her totally. DH says we need to get her car fixed so we can sell it; sister (never DS) says we can't sell it. They both say they don't know what to do and look at me! Aargh! Is it any wonder I see a therapist, take antidepressants, and when all else fails take xanax?
    • CommentAuthorcarosi*
    • CommentTimeOct 5th 2009
     
    Janet-- Don't know the background but if your sister's only problem with beuing able to drive is the damaged ankle, have her contact Vocational Rehabilitation. She can be taught to drive in an alternative way--lft folted or hand controls. Save yourself some stress and get the battery in and car gone fron your place. Cost for a battery, installed vs your continued sanity--no contest.
    If you can put her car business in her lap. You have enough with your DH.
    • CommentAuthorJanet
    • CommentTimeOct 5th 2009
     
    Thanks Carol. I'm trying to put all of her problems in her lap. If she could drive, it would help me greatly! She also has some other problems, but she does seem to be improving in many ways. She needs to repeat the neuro-psych testing she had almost a year ago. It's all a long story.
    • CommentAuthorFayeBay*
    • CommentTimeOct 5th 2009 edited
     
    Sat started out camly. Then DH wanted to go for a ride.
    •  
      CommentAuthorJeanetteB
    • CommentTimeOct 5th 2009
     
    Starling, do you go to the Kohl's in the shopping center off Hamilton Ave? That's where I do most of my clothes shopping.

    Starling and Fayebay, you both had an exciting day! Thanks for posting/
    When we have those days, there's no one I can tell about them -- who would believe it, or want to listen to all that? -- except right here on the boards. I have little comfort for you except -- if it's any comfort -- we sometimes have those days too. Fayebay, good for you for drawing the line -- you see that it sometimes works!
    •  
      CommentAuthorStarling*
    • CommentTimeOct 7th 2009
     
    Jeanette, yes, that is the Kohl's I went to. I just sent you an email.
    •  
      CommentAuthorJeanetteB
    • CommentTimeOct 7th 2009
     
    Starling, thanks, I answered your mail.
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      CommentAuthorchris r*
    • CommentTimeOct 7th 2009
     
    Ice Cream.... We eat ice cream. yesterday, he had 3 helpings. but he's down to 151 from 190, so who cares, let him eat whatever he'll eat. Anyway, we are going to bed last night and I said, wash your face honey, you have chocolate ice cream on it. Well... he blew a gasket. i'm so nasty, why would I say that to him.... and on, and on. so, I just didn't say anything, and this morning, at the breakfast (actually lunch because he doesn't get up til noon) table, I wet a paper towel and wiped yesterday's ice cream off his face. He flinched because he hates that. well... too bad. What can you do. he hasn't showered in over a week, beard is growing becuase he hasn;'t shaved and he won't even wash his face before going to bed. how can you deal with that.
  4.  
    Mine "blew a gasket" last night because he told me that it was time to take his red pill. He takes two pills each night. One happens to be red but I never really paid attention. He also takes a pill twice a week. He has been describing the various pills that he takes in different ways lately. The two nightly pills used to be one pill but his insurance wouldn't pay for the combined med so he now takes two instead of one. He will still call the two at night "one." He will say, "I guess I should take my pill now." If I tell him that he needs to take two, he says "you know what I meant." On the night he takes all three, he might say "so I guess I have to take both pills tonight." I really have to be on my toes to understand what he means.

    So when he said that he guesses he has to take the red pill, I had no idea what he meant. I responded, following some thought, "Oh, you mean the larger of your two nightly pills." He accused me of being just like his brother and me making him out to be the problem. Wow, he went streight to bed about one hour early. Not a word. so I just let him and this morning, he was just fine.

    Where does this stuff come from???

    Mary!!
    • CommentAuthorJanet
    • CommentTimeOct 7th 2009
     
    We're having pill issues also. My husband can still fix his own pill container and usually take them when he's supposed to. However, he forgets to take them sometimes, so I check to see if he remembered. He also calls in the prescriptions when he's getting low. Then he forgets he's done it. His theory is that if we don't pick them the pharmacy will call. So several times lately, they've called and left a recorded message and I've had no idea what we were supposed to pick up. Once, there should have been two prescriptions, but they only gave us one. It caused a problem because I didn't know what he had called in and he didn't remember what it was. Since then I've asked him a couple of times to either tell me when he calls or to let me do it, and he agreed. When we got a recorded message last night, I asked him what it was for and again asked him to keep me in the loop. He got furious. He said his method worked just fine, it didn't matter if he didn't remember what he ordered, and he was sick and tired of my questioning and insulting him! I saw the psychiatrist who prescribes my antidepressants this afternoon and told her that I sometimes take 1/2 of a xanax when his rants upset me. She said that maybe I was putting the xanax in the wrong mouth! Ya think???
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      CommentAuthorchris r*
    • CommentTimeOct 8th 2009
     
    Janet, that's like when I was trying to give my DH Seroquel in pudding, and our friends here told me I should eat the pudding..... I almost did too.