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PegofmyHeart, people tell me I'm soo patient and such a saint. I feel like a fake, because if they only knew - how impatient I feel and unsaintly my thoughts are some times. I guess it's because when people ask how we're doing I tell them my husband's current condition, but never say much about how I'm doing except fine. Can't really admit, except to you guys, that I'm a mess sometimes and feel like I have no clue what I'm doing.
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tooyoung, I always hate it when people tell me I'm a saint or an angel. No, I'm a human being doing my best, which is often pretty darn good but never perfect. Fortunately we do not have to be saints to do a good job. And fortunately perfection is not required.
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Yes, a nice work. But, is not the most dificult point? My wife asks me I don´t know how many times a day: What day is today? Do we have any engagements? and some time later again. At brekfast time is another circle, for years, since we married about 30 y. ago, we decided some chores for each one: For her was to prepare breakfast. So every morning she comes and ask what do I want, I say and she goes to the kitchen. Now I dont never know what I will receive. But rarely what I told her. And if we have something to do without saying anithing, I go annd prepare for both, calmly, talking about something else.
To me that has being the answer to this problem: to answer as calm as posible the same answers, time after time. I don´y see another way.
Our friends are just beguinning to notice, and I don´t know what will happen. Perhaps we will be ostracised, perhaps we will see less people. I don´t know at this time.
Of course it means that is worsenning. What to do? I don´t see anything outside me.
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Thanks one and all for the nice feedback. It means a lot to me to have found a safe place to come to just to talk, talk, talk! I am up a 1:30am because I am stir crazy thinking about how the last conversation went. . ."What are you looking for". . .me: "Nothing". . ."Why are you looking". . .me: "It's okay, I found what I needed". . ."What did you need". . .me: "A pen". . ."What are you going to do with the pen". . .Me right now. . .OMGosh, I wish I hadn't picked up that pen!!! ha ha It's been that way in his waking hours and I am spent! Rattled, emotional, and need to get out of the house tomorrow. Thanks all for reading this stupid stuff, but it's good to type it out, re-read and sometimes laugh at myself!
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Oh yes... having time alone outside is now one of mymain problems. In other times we use to do that, each one went to see friends or family without concern, now is differet, If I had to take a time: Where are you going? To see such and such. Then she makes a very sad face and asks: Can I go along? Of course! and that is the end to my time alone...
What I am doing is to meditate alone anywhere, with her next to me. And I do that in cinemas, or theaters, or even in restaurants. She chats and chats, as allways did, and I travel in my mind.
That weay she is calm and I have somo precious time for myself. I would love to find out some way to be really alone once in a while... but we are solely both of us. My family is too far and her only sister runs away as frequent as she can. I believe she is scared of a similar future. Thjey have a precedent with their mother
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Gonzalez38. . .The little time we do have is probably keeping up the house, cooking, and stealing time on the computer! It's good that all of us can consider each other the friend that we can call and reach out to. My husband's children have abandoned him - never a call or visit. Thru his sister-in-law I found out that his daughter said "I am glad Dad has Peg as his caregiver". . .dah. . .none f you seem to be stepping up for a phone call or visit, who do you think would take care of Dad??? Selfish, self-centered children that are all professionals. Heartless souls that may one day feel something for their father. . . but it will be too late for them to enjoy time with him. I should be grateful that they don't interfer - I could see a mess there! he he Gonzales - come spend some of your free time here with the rest of us that can't get out and about by ourselves.
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I would like to share qith all of you the impressions of a very moving film we saw this afernoon. it is a french one called "Amour" (Love) with the old (today) star Jean Louis Trintignant. It reflects our condition and situation. Sad and moving, lovingly and lonlely... many of our lifes... plenty to think and think and think
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Yes, PegofmyHeart and everyone else...vent here. As caregivers we do get frustrated, tired, overwhelmed, mad and so many other emotions wave through us daily. I have found that this does help, along with keeping a journal, and finding "alone" time, this is very important. I also have read and reread several times the book titled "THE 36 HOUR DAY" It is a wonderful guide and answers so many questions, a very helpful book, I encourage all to get a copy.
Keep strong.
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I can see myself in so many of these comments/situations. We share so much yet each of us has to face it alone. It's good to be able to come here to vent, to laugh, to cry and know that we are not being judged by anyone. Thank you all. Please, let us keep sharing. I, too, would love some time just to me...I can still go to the grocery store alone so that is my "alone" time. Not much, but better than nothing. I do find solace at church, too. I know these times will eventually be lost too, and that makes me feel sad/mad/guilty. I believe it's OK to feel that way. I'm not a saint. I would love to have my old life back, too, but it's not to be. Gotta play the hand we're dealt and with support from all of you, we will make it. I pray a lot, too, and I think I've figured out the secret to peace...assuming an attitude of gratitude for what we DO have, not what we had or want necessarily, but there is always something, no matter how small, for which we can be thankful. Assuming that attitude of gratitude will help us find peace and joy everyday no matter how small or insignificant it might be. Thank you all for sharing and caring!
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Here is a very interesting and helpful link to an article in the NY Times about not letting Medicare benefits for therapy and other help be cut off because of time or dollar limits being met. It's worth reading. I hope it helps others. I haven't arrived at this point yet, but I know I will. It's good to know that help can't just be cut off as it once was. http://nyti.ms/Y54QI7
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Gonzalez38, you mentioned that you are worried about telling your friends about your wife's condition and being ostracised. If they do ostracise you, then they are not very good friends. I think you'll be surprised that they already suspect something and are waiting for you to say. They may want to offer help, but supporting your desire to keep it private by saying nothing.

When my husband's Lewy Body Dementia was diagnosed, I asked him if he wanted to keep it private or talk openly about it. I told him that people already suspected something, because I had been asked if he had had a stroke. So, I explained to him that we can continue let people think that, or we can talk openly about it and in the process help people learn about the 2nd most common dementia. In the process, it might help someone not have to go through years to get it diagnosed like we did. He said talking would be fine, but I'd have to do the talking, because he forgets his words/sentences.

Some people are shocked that I talk about it. I don't give them the nitty gritty details, but explain the disease and the symptoms they are seeing. Absolutely everyone has been supportive, and we have even made some new friends. They invite us to all their social gatherings; accept my apologies, when I cancel last minute, because I can't pull myself together; and they make allowances for his dementia, when we play board or card games. Some people have said, you know I think that is what my mom had and they told us it was Alzheimer's. Most have said they have never heard of LBD, and they are going to learn more about it online. I think they are all learning, and that's something good that can come out of this.
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Yes you are absolutly right and I appreciate very much your commentes. I expressed myself wrongly. I am not worry of being ostricised, again you are right, if anyone do that, is not a friend. What I meant is that I believe that can happen, and I am ready to accept it. I have not mentione before, wating. This last summer, two sisters ask me directly what was happening, and I told them. It is logical because we don´t see often, due to living in diferente countries. On returning home, we assisted to a party, some few days latter a friend ask me directly if my wife was having mental problems, because he recognized some due to have a sister and two cousins with some similar problem. I answer as to my sisters.
Those two episodes convinced me that the time to open the game have arrived, and decided to be clear to all our friends and family. Seems to me that any other way is foolish. Except if I denied to myself. and I don´t do that from the beguining. It was clear what might will happen.
And if some isolamente happens, I don´t worry, anyhow we are quite satisfied with ourselfs. And reasonable happy.
I had an experience some years ago with the mother of a friend. Every time we went to his house, his mother asked all of us if we were friends of Miguel. All of us courteously answer yes everytime and chat a little more, as much as she wanted. After eating, she used to take a nap. And on returning she asked us again the same question. And we answered the same way.
Something similar is ocurring now with my wife, and I see my friends doing the same. I supouse that all of them and our fmilies know. Just has not came the moment to discuse it. And it may not arrive. It does not matter.
Hugs and preys for all of us. (And some extra dose of patience)
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I was very open with everyone, right from the beginning, largely through emails. Later I kept a blog on CaringBridge. I think it helps everyone if people know at least vaguely what to expect, or at least not to expect things to be "normal."
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Although my husband is very much in denial as to his condition, his behavior is embarrassing enough at times that I do find it helpful to quietly explain to others that he's in early dementia. And I'm finding that folks are very reassuringly understanding and supportive once they know what's what.
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I know what you mean. Sometimes my husband says or does something so off the wall, even I am taken back! My husband has a very unusual sense of humor, and sometimes it's hard to know if it's that or his dementia. If people can't understand the situation, I believe it is their problem. Someday they may be in the same situation, although God forbid that should happen. However, sadly, some people only learn the hard way. My husband is in denial too, and it is leading to difficulties with preventing him from driving and some other issues. If anyone has a suggestion as to how to deal with this very, very sensitive issue, I am all ears! The OT gal tried to go over it with him yesterday, and even gave him an example of what happened to her and she doesn't have any medical conditions that the guy who is suing her can hang his hat on. He hit her...and he was riding his bike! It's a long story, but I cannot believe her insurance company hasn't lowered the boom on this guy. He has a local attorney who is very diligent about getting people what they are due, but in this case, I think he is on the wrong side.
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to SWOMBO and others. Trying to explain the condition to strangers when your spouse does something weird or embarrassing can be akward. I priinted up some cards that simply say "my husband has dementia, please exscuse his behavior" and another that says " my husband has dementia, please be patient with him, he may not understand what you are saying or what he is doing" I simply hand this to people and they read it and most say thank you. This way you do not have to do any explaining and possibly embarrass your spouse.
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to SWOMBO and others. Trying to explain the condition to strangers when your spouse does something weird or embarrassing can be akward. I priinted up some cards that simply say "my husband has dementia, please exscuse his behavior" and another that says " my husband has dementia, please be patient with him, he may not understand what you are saying or what he is doing" I simply hand this to people and they read it and most say thank you. This way you do not have to do any explaining and possibly embarrass your spouse.
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The idea of printing cardas explaining in very fiw words a wondefull idea. It solves the problem of embarrasing our dear one, to us and to theothers present. I will think about
Thank you and a hug to all
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The idea of printing cards explaining the situation in very few words is a wondeful idea. It solves the problem of embarrasing our dear one, us and the others present. I will think about and implemented
Thank you and a hug to all
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NewWifeCarg I want to tell you something that might help you. My Grandfather spent his entire Marriage to my Grandmother who was completely social phobic, looking out for her and protecting her. This was an illness he was hiding or covered up as I know it got worse as years passed. As a youngster I didn't understand why she was like this but I understood Grandma was that way. When she was taken ill by a stroke he tried his hardest to care for her and knew he was no able, I think he feared something would happen to him and then what?? So he place my Gma in a NH ... I know this broke his heart, but I clearly remember him sliding her wedding band off of her finger, in fear it would be stolen at the NH. At that very moment I knew he wasn't giving up he was doing what needed to be done for her out of his LOVE, because his love was deep. So my earlier comment about throwing in the towel... I did not mean to say if you don't do the actual care giving day to day, you've given up. It's doing what's best for both of you is all that matters. Do what you feel needs to be done!!!
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It seems like every time I log onto this site, I learn something that helps ease the stress, sadness etc. Thanks to all of you . It's nice to know we are not
in this situation alone. God Bless everyone of you.
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We all have moments when we think or say things we don't mean. It is the stress. That was a beautiful story of your Grandfather and Grandmother. We are all here learning from each other. I had a melt down moment this week when my spouse wanted to make the coffee and put the lid on top of the grounds and not the pot two times this week. All over the floor and counter.
Then I pause and think how he was always there for me for all those years.
I will try to be there for him. But I am human. God Bless.
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I try this again....for some reason I am not able to answer here to anyone. so if have to will do it one by one...the cards are great idea, yesterday he and I were getting his tests for his upcoming surgery and he kept asking same questions over and over again, thank goodness when he began telling a story of his childhood when she asked him about medication, which the story had nothing to do with it, I had already explained to her about his issues and being a nurse...she was wonderful. To bad I can't give out cards to others on the internet that are beginning to wonder why he does some and says some strange things
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Dear wuvsicecream you are absolutly right, and of course, every situation is diferent in many aspects. And I a talking about the enviroment, the surroundings of the couple. And not only of the variations of the disease.
I am very clearly aware of the posibilityof placing her in a NH.
But what troubles me more is to think of my dear wife alone in a strange enviroment. No matter how far away mentally might be.
The angst is mine. I am decided to delay as much as posible that moment. The main problem to me and I believe for must of us in this situation is to balance our lifes in the best posible manner.
And my main terror is to die first: Who and how will she be?
I am taking all the posible legal measures that I can imagine, but...
Hugs for all and best wishes and luck
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Dear friends (I feel I caqn call you that way, because we have similar problems) Yesterday we went to our doctor for a yearly check-up (I was lying to may wife, the main purpose was to check on her status.
He examined her, hear my answers, and told me that he is sure of an Helzaimer´s case, still moderate, but without doudts. So... I am full into an other dimention, one that I was afraid to be in, my mind was inssisting in more paltable solutions. There are not, the monster is present.
Last night I sent a message to our family and close friends telling this. The answers have being marvelous, fullfilling and full of love.
For the first time since the beguinning, 3 year ago, reading those answers I have being able to cry. Now I feel better, don´t feel so lonely. I have friends and family comprehending the situation.
I acompany the toughts of P. Boss, I am very clearly aware of being into an ambiguous loss, and that is a long waystill to go. As we all are here.
Great hug to all
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Gonzalez38, I am so sorry for the diagnosis that confirmed your fears. I wish it weren't so. Hugs to you, my friend.

Usually having a diagnosis -- having something you can name that is wrong -- is a kind of relief. Now you have something specific you can say to your family. Now you have something you can look up online and learn about. And in a strange way that does make the situation a little bit less stressful. At least it did for me and I hope it does for you.
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Feeling lonely? I had to up-grade my cable tv programing, made a lunch date, and bought myself a new pair of slippers. Sometimes doing the little things can fill a void - without costing us too much money and without becoming hoarders or spenders or getting into some other kind of trouble! ha ha Once the weather lets up I'll be outside taking a walk, planting new flowers, and painting. I cannot be away from home for any period of time right now, but once I get help inside the house it will free me for other activities where I can carry on an adult conversation. . .
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I'm glad wuvsicecream understands what her Grandfather had to do....decisions to put someone in a NH is among the most difficult decisions any of us may ever face. I hope and pray I never have to do that, but I will do what is best for my husband. Keep the faith, everyone. We are all in this together!
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Thank you for the support. Yes now I have a name to pronounce, an evil to signal. And also now I am more able to see the future.
Also for the first time since I could perceived the problem I had being able to cry. I don´t know if is a sort of relieve to know what is happening. All my life I detested to be in limbo, allways was able and capable of climbing or fighting or running. And now I know what I am against, and also know that my main concern is to be as able as posible. Nothing ought to happen to me of what is depending on me. Because she depends on me. And will depend more and more.
For a long, long time to came. So I have to be a strong and healthy as posible, or both will drown.
I am taking again some activities like drawing, restoring, writing, and swimming.
At least those are in my inmediate çist of "To do" Oh, and I bought a flute, a single one. I never played any instrument, outside a claxon or a buzzing door bell, so I imagine trhat the mental effort to learn would be interesting, no matter the results. Jajajaja
Hugs to all
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Gonzalez 38. Good for you! Learning the flute will help you concentrate on something besides illness. I do have the same concerns for my husband. What if something happened to me but then I think, he would be taken care of in a nursing home. Not what I prefer or he would prefer but then his children would have to step up which they have never done. They would have to advocate for him or my daughters would take him near them. So WE ALL must take care of ourselves. We deserve that much. God Bless
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