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I've been following this thread but hesitated to join in because my husband doesn't have dementia he does have depression, crippling arthritis, hypoglaucemia and a really bad balance problem just name a few of his problems. I also am a newlywed of almost one year. My hubby was my high school sweetheart and we were fortunate to reunite after 40 yrs. I went into this marriage with my eyes wide open because I love this man of mine. just because his body has been unkind to him over the years, doesnt mean his heart isnt still as sweet as it was long ago. Some days a real challenge with the balance problem. He falls a lot so I'm nervous about that. The last fall was on marble flooring and he ended up in ICUS with 25 stitches and a brainbleed. Still, we don't have it near as bad as most of you all do. I admire and respect all on this thread. I give you a big salute for keeping it together as we'll as you do. Thanks for sharing your experiences and knowledge. We all know life can change in the blink of an eye. I just try to do one day at a time and make my husbands days as good as possible. Blessings to all!
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Leslieann51, you are so very lucky to have family and love ones that you could go to, I know that we will have to move in the near future to be near his family, I have no family of my own, and hate leaving my home that I bought with tlc on my own some ten yrs ago, however I know things will be better. And as luck has hit, for his surgery on the 14th, his daughter who is a RN and in charge of all nurses within a hospital in ILL is going to be here for it, me feeling much better about all that is going on and not being alone for this, will be a big help.

Brandywine1949, you hang in there, as we all do, I know will do great...and we will all be here with each other for anything needed, sure do know that this site has sure helped me...reading stories...hugs given and received....don't know what I would do without it!!!
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New wife, I am taking care of my husband who has something, I think it is pre dementia or dementia. Also he has aspergers syndrome and attention deficit disorder. So I understand where you are coming from. He had depression but got better, but while he depression, he was mean and nasty. Also my mother has AD so I have a lot on my plate. Mom is in the NH.
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Wow! Can't tell you how truly helpful this website is! Been so busy with my job, commuting, being a caretaker for my husband (of 32 yrs.) that I literally haven't had time to read any of these wonderful discussions in probably a month! Let me start by saying that my heart goes out to all of you, as although all of our stories are "unique", we all share something in common: dealing with the dailey struggles of care-taking for a spouse with Demention/Alzheimers. I will be 62 next month, my husband just turned 73. He was probably diagnose with Dementia (I'm guessing) 5 or 6 yrs. ago, while we were living in the mtns. of N.C. (in a log cabin in a very remote area with no family around) I am (and have been for many many years) a full-time flight attendant. I've been based in "Philly" for the past 6 yrs. and commuting from there to Charlotte, N.C. and then an hr. & 45 min. drive home to the mtns. Ted, (my husband) is also an insulin dependent diabetic and on numerous other medications. When he was diagnosed with the dementia, our N.C. Dr. of 23 yrs. put him on Aracept. He hid this from me very well, and used humor frequently to mask his confusion/memory loss. being gone 3 to 6 days at a time, I guess I didn't realize the severity of the disease and brushed it off as "normal" forgetfulness that we all suffer from! (looking back, I blame myself for being in denial!) About a year and a half ago, he seemed to get progressively worse. He could no longer handle the finances, which he'd been doing for years since he was "retired" and I was gone working full-time. (He was forced in to an early retirement when he lost his 26-yr. flying career, as a pilot when Pan-Am filed bankruptcy in '91.) He dumped all the bills and financial responsibilities in my lap and he seemed to be getting more & more forgetful & confused. I kept all of this from our kids (grown son & daughter in Miami) because (like my mother before me) I don't like to worry or burden the kids and always try to "handle" everything myself! (as so many of us do!) When I finally told the kids they went from being angry at me to "jumping on board" and (especially our daughter) learning everything she could about this illness! He was progressing to the point of not remembering his meds or insulin and there were many episodes (when i was out of town) where I went into a panic mode when I could not reach him only to find out later that he'd not taken his insulin (or at least i assumed) and his blood sugar was up in the 400 range! March (a year ago) the kids intervened (I was on the verge of a nervous breakdown, suffering constantly with depression and horrible anxiety attacks and constantly getting sick) yet still continuing to commute & fly full-time. April of last year our son flew up to N.C., "rescued" his dad and flew him back to Miami with him. Our daughter rapidly found us a rental apt. in a retirement community and the kids shared the responsibility of caring for their dad while I managed somehow (with the help of some incredible friends!) to pack up everything that i could squeeze into my little SUV (including our cat & dog) and Memorial weekend drove the 14 hrs. to Miami, crying the whole way! (loved our peaceful little town in the mtns. and swore we'd NEVER move back to S. Florida!) The commute from "Philly" to Miami is a lot more difficult, but I now know that this is the best place to be for both him & I. His short term memory is completely gone, but he is able to live alone when I'm out of town and is doing remarkedly better since moving to Fl. He's surrounded by love: our daughter, son-in-law, son, daughter-in-law and 5 grandsons and because of them is socially more active than he's been in yrs. and as stressful as my life and job are, I can leave town a little less stressed knowing that if I need the kids all I have to do is call and they'll be there in a heartbeat. Is the situation perfect? Hell no!!! I wouldn't wish this horrific disease on anyone, but for now, he's in a "good place". For the most part he's mellow, "happy-go-lucky", funny and doesn't have a care in the world. Everytime I come home from a trip, no matter how exhausted i am i make it an effort to take him out and do fun things. (Even if he forgets it that nite or the next day, I want to make as many good memories as I can while he still remembers me/us.) I know things will get worse, but for now I just have to keep on working, keep on praying and try to take "One day at a time". Please forgive me for babbling on for so long and God Bless all of you during your struggles! Thanks for letting me vent!
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Both Brooklyngirl and SWOMBO are so right. I am glad you are exercising...I try to walk every day. I don't like the gym, but it's good for some people, especially the camaraderie. I'd like to take some Tai Chi classes or something, but $$ are tight so I won't be doing that. I have a DVD I can use, but a class is more fun. I also agree that if we could get our spouses to exercise, they'd be better off, but it's nearly impossible. Once they get in the habit of NOT trying, it's really, really hard to get them going. If anyone has any suggestions, I know we'd all welcome them. I used to live next door to a woman who cared for her 95+ yr- old Mother. She took her for a walk everyday through our little development until her Mom absolutely couldn't do it. I'm sure it was good for both of them. Her Mom used to sing whenever she saw my husband and me..."It's a long way to Tipparary..." My husband used to chime in...it was funny and I think that poor old woman knew we cared even though she had NO idea who we were. Each time we saw her, we were new to her which was fine. Keep up the good work! don't give up!
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Brooklyngirl, your post really struck a chord with me, as I have been experiencing a lot of anger because of my inability to do anything concrete to restore our lifestyle to a more even keel. We deal with the mobility issues too, and a lot of my anger centers there, as I blame my husband's adamant refusal to exercise for his deteriorating condition. I myself go to the gym 5-6 times a week, and definitely benefit from the physical exercise, as well as the camaraderie of kindred souls I've met there. After tormenting myself for far too long over things which I cannot control, I made a resolution at the beginning of this year to better manage my attitude, which is about the only thing I can control. And it is working. You get what you give, and I'm finding that my more positive attitude has thus far fostered a less stressful atmosphere at home, while restoring some of my inner peace, as well.
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I've been married over 30 years and I am taking care of my husband who has diabetes, end stage renal failure, congestive heart failure and mobility problems. My heart goes out to the new wife. The worst part of the all the illness is the mobility issues I have no idea what we will do when he is unable to walk he is a big guy and I find taking care of his needs now exhausting. He has stated more than he is not going into a nursing home. I do have family and friends who will do anything and always offer support the problem is this situation will not get any better and I hesitate to ask as often as I would like for fear of burning them out as I know I am.
I wonder if any one experiences anger I find myself very angry at times. Angry at him angry at the diseases angry because we are not living the life I thought we would as empty nesters and retirees. Going any where with him takes almost military precision how far a walk is it from the car to the wherever we are going -even with the handicap permit we have problems, are there stairs- he can't climb them- do the chairs have arms -he finds it difficult to stand up from an armless chair- on and on it goes. I know this is more difficult for him than me and I so wish I could fix the problems but I can't.
I was reading something recently about exercise being one of the best things a care giver can do for themselves. I used to go to the gym 3x a week as hubby got worse I went less until I finally stopped going at all. I'm thinking it's about time to start back although I did exercise yesterday shoveling that foot of snow we got!
Anyway I'm glad to have found this board I feel better already. Wish everyone well and I will check back in soon.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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 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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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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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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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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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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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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