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Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthorTessa
    • CommentTimeApr 17th 2008
    Until my husband started telling people about his diagnosis I told only very few people.I told my supervisor who is also a friend.One of the reasons I chose not to share at work is that frankly tears are never very far away!!! We really do well at home and most of the time I am able to be cheerful and happy for my husband. Well anyway, apparently as is always the case more people are learning about his diagnosis. Yesterday ,I was preparing to start a meeting when one of my co-workers started by telling me how sorry she was to hear about my husband and she felt so bad for us. Before she got her last word out ... tears were in my eyes... I think it is that for a few moments each day I am still able to not think about things and then when people bring it up at unexpected times it just sort of taps in to some well of sadness.
    This has happened at other times as well and I think people must think I am a basket case.I understand when people tell me how sorry they are that they mean well , and I am certainly never angry...but when will I be able to talk about things without the tears... Or is this just part of my life
    Strangely , as bad as this disease is I consider myself more fortunate than others beacause I know that others are facing even greater obstacles..
    Do others face the inability to just talk about things with out crying????
    No, I completely understand. I was just like that until about a year ago when, for some reason, it had been long enough that I became able to just
    start talking about it matter-of-factly. I guess it's really a part of my life now, that I accept along with everything else.
    • CommentAuthorfrand*
    • CommentTimeApr 17th 2008
    Laurie, we are human beings and this is a SAD disease. I doubt anyone thinks you are a basket case, as I doubt you would of others in the same siutation. If you try to repress your feelings you will be worse off. I'm guessing it will be a relief to have others know so you don't add trying to cover up to the rest of the distress. Hang in there!
    • CommentAuthorJudy
    • CommentTimeApr 17th 2008
    Oh Laurie, sometimes I think tears that can come OUT are so much better for us than the tears that can't get out.
    You are right, people want you to know they care and when this comes at times when you are not prepared, it can be a jolt.

    My husband was elected to public office during the time when we were having tests but no diagnosis. I say WE were having tests..he was not interested in having tests..but something wasn't right. He was elected for a 4 year term that was up in 2006. We got the diagnosis in 2005. Although his co-workers were told and he received a huge amount of support to finish his term.. We didn't discuss it and our family stayed in apprehensive knots the whole time.

    Now, the community is aware but we had to live with this for such a long time that it seems those 'walls' have just stayed up there. Its normal for people to ask how my husband is and my standard answer is 'relatively ok'.. And he IS relatively ok.

    Our defenses stayed up way too long, I think. It would feel better if a few tears could get out but we'd all like to feel more in control of WHERE they flow! A few deep breathings can help with regrouping when the need arises..and tissues! You are probably doing better than many of us. There is enormous support here.
    My husband is beyond any recognition of any person or thing. He is existing in an ALF. When neighbors ask about him I always thank them for the concern. I tell them that by asking they are acknowledging that he still exists as a person.
    • CommentAuthordarlene
    • CommentTimeApr 17th 2008
    Laurie, I think tears are a part of this terrible disease. My LO and I both cried and I still get tears at times when talking about him. He is now in a care facility and does not always know me. Friends want to help, but I just could not talk about things for a long time. As one friend told me; I feel so helpless and it makes me feel better when you ask me for help. So I am trying to ask for help now when I need assistance.
    I do fairly good most of the time, but there are days when the dark cloud looms over me and tears are not far from the surface.
    • CommentAuthorPennyL
    • CommentTimeApr 17th 2008
    It took me a year to even say the word Alzheimers. I would always just say that my husband had Dementia. It just sounded better some how. There are many days just talking about it makes me break down in tears. But I must say it is getting easier as the time goes on. I have my good days and then I have my bad days too.
    This is kind of related. When my mother was ill with colon cancer almost 20 years ago at the young age of 56, I ran into this at work. I "sucked it up" for a few weeks and then I finally had a private talk with each of the three supervisors at work. I asked them in their next staff meeting to ask employees not to discuss my mother with me at work and not to ask questions. I would pass on information when I could. I told the supervisors that it was hard enough to be productive without having to deal with all these comments. I asked the supervisors to appologize for me but to explaine that it was way to hard for me to deal with "I'm Sorry" and "How is your mom doing today?" comments out of 50 people each day. It worked great. I gave updates to special co-workers and the supervisors from time to time, but did not have to field these constant comments any more.

    Just a suggestion. Everyone seemed to understand and, if they didn't, oh well.
    • CommentAuthorjav*
    • CommentTimeApr 17th 2008
    how do you deal with good intentioned people asking about how your husband is? it is hard for me. i have to stop and think. sometimes it is just too much and i avoid extended family get togethers sometimes because so many people always ask. i just dont know what to say. if i say it's a good day,i have to stop and think, will it still be good when i get home? if it has been a bad day, i don't leave him. it's hard ,so many emotions to deal with. just when i think i am to tough to cry anymore,or the tears have all dried up and i just don't have anymore,boy here they come. i cry at night and when i am alone,as i am sure that is what alot of you do. i try to just act normal in front of my husband and others,as much as i can.
    • CommentAuthorSunshyne
    • CommentTimeApr 17th 2008
    My first husband died of cancer 21 years ago. I am usually very matter-of-fact when asked a question that makes me talk about him. But every now and then, without warning, here come the tears, even after all this time.

    I do pretty well discussing my second husband's AD with doctors and nurses. Most of the time, I can be factual and pleasant answering questions from friends and neighbors -- usually, people just ask how he's doing, and I say "as well as can be expected". Which is true -- he is perhaps doing better than might be expected, thank heaven.

    But sometimes, well, the tears just come.

    I expect that it's going to be that way for a long, long time.
    Sunshyne, to have had two spouses with two deadly illnesses - WOW!! You have my special prayers. I think that there are a couple more here who have previously lost a spouse in our discussion group. You are special, as are the women who still have small children at home. When I think of you all, it makes my situation not seem as bad. We're older, and have been married for 46 years and our children are grown.
    Back to the tears.... My father had cancer for 6 months before he died, and my mother aged 20 years during his battle. She would go to the bathroom and run water and cry her heart out. She cried everywhere but in front of him.
    I suspected my husband had AD a year before the official diagnosis, and I seldom have allowed the tears to flow. I can do that my shutting my mouth when I feel them coming on. I just won't talk so they won't fall. My standard response to the two questions: "How are you doing?" is "Okay" and to "How is DH doing?" I say "He has good days and bad days." I seldom give out details except during our caregiver group and here.
    • CommentAuthorSunshyne
    • CommentTimeApr 17th 2008
    Mary, when my first husband was in the hospital dying, I stayed in his room and helped the nurses care for him.

    Every day, I saw a lovely woman, beautifully groomed and smelling of wonderful perfume, going down the hall.

    One day, she stopped to talk to me. She said that the nurses had told her about my husband, and that we had only been married six years.

    She and her husband had been married for more than 50 years. He was having a series of small strokes, and could no longer recognize her, or communicate, and she didn't think he could see very well any more, if at all. However, she always dressed up before coming to visit him, because she thought that perhaps, in some way, he knew it and she wanted to look nice for him.

    She said all her friends had told her that she had no right to grieve, because she and her husband had such a long, rich life together. She wanted to know if I thought it was okay for her to mourn, since I had had such a short time with my husband. She actually seemed to be asking my permission.

    (Speaking of tears coming ... this is doing it.)

    I was floored. I told her that I thought she had every right and reason to grieve, precisely and especially because she and her beloved husband had been together for so many years. What a terrible loss.

    That was the one and only time I saw her cry, in six weeks.

    (I will NEVER understand "friends" who say things like that.)
    Me either!!! And you are right about the tears!
    • CommentAuthorPennyL
    • CommentTimeApr 17th 2008 edited
    When people ask me about my DH, I seem to do OK talking about him. But as soon they ask me how I am doing......thats when the tears start flowing. I just try to be strong and take one day at a time.
    • CommentAuthorcarewife
    • CommentTimeApr 17th 2008
    I am crying this husband has had Alzheimers since 1996. He could functiion until 2000 when I became his full time caregiver, no longer his partner in the full sense of marriage. Because of my health problems, and his functioning level I had to place him in nursing homes. I have cried all most every day since then and will probably do so as long as I grieve for the man I married and lost. We have been married for 57 yrs. and were high school sweethearts. I try not to around family and friends but never know when I will succumb. I have written a poem entitled, God's Gift of Tears, in which I believe that God has given to us the gift of tears to help us relieve our emotions in either sadness or happiness.
    • CommentAuthorPennyL
    • CommentTimeApr 17th 2008
    I would love to read your Poem "God's Gift to Tears". Would you consider sharing it with us?
    • CommentAuthorTessa
    • CommentTimeApr 17th 2008
    I have waited all day to come home and read... I knew there would responses. How wonderful to read your words. So many of you feel like I do .. I try to be happy for my husband , He has lost so much and yet he will lose much more.... I feel for now he deserves a happy face ( as much as possible) Maybe the tears I shed help make that possible. I thought that maybe by now I should be able to talk about it without tears but I am no where there yet. I am the most at ease when I post here. You are more real to me than the Most of the folks I see in a day. Its important also to talk about it when we are ready, not just when some mentions it. I do like the idea of just thanking people for there concern .It is afterall remembering my husband!!
    We are in the very early stages...I saw MCI written on my husband's chart for the first time today-always before it was just a "differential diagnosis"...but I find that the time I cry is when I am driving home from work. I have an hour commute and it is usually my fatigue that drops my defenses and I am able to cry.

    Speaking of being able to cry, I was on anti-depressants for at least 6 years prior to March of this year. My "chronic" low lying depression I believe now to have been a normal reaction to my world and marriage slowly crumbling-only I didn't know why it was. So, I thought that perhaps my sadness was due to a major depression. But starting a few months ago, I noticed that I just didn't seem to be able to physically cry, the way I seemed to need. I felt really sad about my husband's condition but felt like a dam was up. At the same time I started to come to terms with the idea that my marriage problems were not ALL because of me and realized that I had a darn good reason for being sad for the past 6 years. So I weaned myself off the medication. And, I was finally able to feel what I think is the appropriate emotions for people in the type of situation. And I feel healthy in feeling sad, angry, frustrated, guilty, because all of these emotions are NORMAL!!!!! It is rather a release, actually.

    Having said that, I do recognize the symptoms of depression and realize that I am at risk...especially as my dh's condition progresses.

    Anyway, a little off subject but this has been one of my Aha's lately.

    • CommentAuthorcarewife
    • CommentTimeApr 18th 2008
    Penny, I am looking for a copy of my poem on my computer, somehow have misplaced it....will send it when I find it. Thank you for your interest.
    • CommentAuthorTessa
    • CommentTimeApr 18th 2008
    Lordy, Kirsty... I think you said a mouthful. For so long before the real diagnosis I felt uneasy in a marriage that had become nothing more than living parallel lives except that One of us was always trying to keep the peace. After 30 years I wasn't going anywhere but I somehow felt like I had failed at things in my life. For me the diagnosis was a true aha moment.
    With much prayer it then became no longer so much about me . I think although my tears may seem to some to be a sign of depression, I think they are more of a realease as many of you mentioned.
    The truth is that due to AD we live in a frustrating, ever changing world.

    Yesterday I had started the day with a two hour dental appt. , significant discomfort, then went to work , couldn't eat because the novacaine kept me drooling all day. Just before leaving work I called my dh to check on how much milk we had so that I could stop at the grocery store. HIs "favorite" show was on
    ( whatever he is watching) so he could not leave it to look in refrigerator!!! Ah yes, when I got home and put groceries away I noticed I was sounding alittle cranky! Immediately, I felt quilty!!!!

    The truth is that it is a continual adjustent to live with AD, emotionally, physically and mentally.... and that all the adjusting is up to us..

    Peace for us all....Laurie
    I found that as the years went by the tears stop. Our journey lasted eleven years and you certainly could not spend that whole time being upset or you would end up in a mental ward.

    All the stages of grief come into play and finally acceptance occurs and you learn to roll with the punches.

    Some advice I would give all of you is to not isolate yourself from life. Find some way to connect to the "real" world and keep yourself involved in family, friends, community....whatever. I know to you in the trenches it sounds impossible....I made all the excuses myself....he doesn't want a "sitter"....he wouldn't "agree" to daycare. When things got really tough I decided that I was an important part of this caregiving equation and if I faltered the "house of cards" would fall apart. For those of us dealing with early onset, your options for help are really restricted and you might have to really search to find organizations and programs that will accept the younger participant.

    So, tears are a part of the process, let them come and move on.....people will understand and those that don't...who needs 'em.
    • CommentAuthorPennyL
    • CommentTimeApr 18th 2008
    I thought about anti-depresants but I do believe tears are a part of the process. A release in some way. Besides, I don't feel I am depressed. I feel like I am going through a mourning of the loss of my DH of what he used to be. The loss of my marriage of what it used to be. Do you think depression and mourning are the same thing?
    No, I don't think that they are. I too have mourned the loss of my husband and best friend, and am still mourning and will until his body shuts down completely. I can still enjoy the little boy that is there and we can have fun - just a different kind of life. I'm determined to provide as much fun and laughter to him for as long as he can smile.

    Depression is overwhelming and totally consuming of your emotions. Such as - you don't see the need to get dressed each day if you are not going anywhere; you don't see the need to make the bed or clean the house since no one sees it but you, you don't care about much of anything; etc. - Of course, that is putting it in the simplest words - and you can definitely have those feelings without being in a true depression! We all have those feelings at one time or another, but we get over them.

    Tears cleanse the heart and soul and are an automatic release. We shouldn't try to stop them (however, I prefer to do my crying in private - but that is just me).
    I don't think for a minute that all problems in our marriage were b/c of unknown AD. I can be a bit difficult--but don't tell anyone I said that. But I dearly loved this man, my life, our home, our family, yet I so often felt I was trying to iron things out and I just thought it was the male hormone thing and constantly adjusted to it. I feel so bad for the times I turned away from him, but I'd get angry and was never sure why. I could have been comforting him instead, but, of course, he never confided in me that anything was wrong, how would I know? But I believe he knew, oh not for many years, but the time came when he did know. I so often saw fear in his eyes, this bravest of the brave. What was he afraid of? I could never find out. Now that I know what so much of it was, I think that I really never lived my true life, so much of it was a sham. It wasn't bad, far from it, it was far and above most, but it wasn't real. Thinking of what he was, what I thought he was, if it wasn't for AD I think things would have been much different, practically glorious.
    Oh my gosh, you described my feelings so accurately and beautifully. Your statement below brought tears to my eyes because this is exactly how I have been feeling:

    "Now that I know what so much of it was, I think that I really never lived my true life, so much of it was a sham. It wasn't bad, far from it, it was far and above most, but it wasn't real. Thinking of what he was, what I thought he was, if it wasn't for AD I think things would have been much different, practically glorious. "

    I hope I haven't come across as saying that all of our problems in our marriage I now blame on ALZ. I know that is not the case as I can be quite a pill sometimes. The difference for me is that I no longer believe that if I just try harder, be better, sweeter, prettier, etc. that he will finally be happy with our marriage. I also feel so much more compassion for my sweet man, who has been living in fear for SOOOO many years.

    Laurie, your comment about being uneasy in the marriage and always being the peace-keeper...that's me!

    Is it not so wonderful to find out that you are not alone?:0)

    Love and peace,
    • CommentAuthorTessa
    • CommentTimeApr 18th 2008
    It is a revelation to me that others can and do put into words feelings that I have had but can not always voice. In an odd way getting the diagnosis has made my husband far more dear to me.
    I have always worked with individuals with disabilities and so understand that how I behave and react can change the behavior of others ... The thought that he has been afraid , confused and even lonely in his struggle for years brings me great sadness but also resolve to be there for him. For now , I see it as my job to keep him feeling safe and even happy.
    I know that eventually it won't matter so much to him whether I am there but he really is comforted by my pressence . He is in many ways like a little boy.
    I know I'll never know but it would be interesting if we could know when the disease started to really change our loved ones . When was it that they stopped being in control.
    One problem with being male is that we are not supposed to cry, and yet I feel the need frequently as my wife of 54 years slowly (or not so slowly) deteriorates. We can still have fun together, but now she is showing physical problems which I am sure are related to AD - she tires easily, can't walk very fast or far (she used to outwalk me easily), sleeps a lot during the day. Today we tried taking a walk in our woods to check on the trails, but it was obvious she couldn't go far. On the plus side, she frequently tells me that she loves me and needs me to take care of her. Also, there have been no rages, etc. that others mention.

    As someone said earlier "if you have seen one Alzheimer patient, you have seen one Alzheimer patient". There certainly are a lot of variations of this horrible disease.

    I wish I could express my feelings the way some of you do. I get a lot of comfort from reading your postings. I check in several times a day.
    • CommentAuthorfrand*
    • CommentTimeApr 18th 2008
    I hope all men can learn to cry and enjoy it! There is a lot of relief in that. I put my information about a lullaby CD in the "Does music make you sad" or whatever that is, but want to remind all who read these posts that I think you would enjoy it and I am more than happy to send them out. One of my favorites is - "Black Sheep" about an older sibling who has to babysit. It is such a beautiful piece though some of the words are "bees and butterflies a pick'in out his eyes -poor little thing cryin' 'Mammy'" as this older sister dreams of the freedom of not having to take care of her little brother. Sometimes I feel this way about AD - even though I hope I am pleasant to my DH some days I wish it wasn't my responsibility, just like that sibling babysitter.
    • CommentAuthorcarewife
    • CommentTimeApr 18th 2008 edited
    God's Gift of Tears
    God has gifted us with many precious things,
    Being able to see his wonderous creation
    Hearing and being blissfully transported by a glorious concert.
    We can use our marvelous sensitive touch
    To hold and caress a loved one,
    God has gifted us with many precious things,
    But of all the gifts he has bdstpwed.
    the greatest is His gift of tears.
    "How can this be,"? you ask,
    "They have been the result of sorrow or anger,"
    Yes, that's true.
    But they have also been a result of extreme joy,
    A symbol of our moments of blissful happiness.
    God, out of the love he has for his children
    Gave us intellect, and other attributes to enable us to live
    Our life.
    He also, knpwing our frailties, gave us a way to
    Release the physical outpouring of emotions
    In His great, all encompassing knowledge He knows that for us to become complete, We must experience all the vicisstudes of life, But., to give us the capacity to renew our emotions., He blesses us with the gift of tears.
    © Joyce Yates 2007

    • CommentAuthorPennyL
    • CommentTimeApr 19th 2008
    Thank you for sharing your poem with us. I am sure it will bless and comfort everyone who reads it.
    Have a wonderful weekend
    • CommentTimeApr 19th 2008
    I just read the blog. My father died when I was 4 years old. When I was 7 I finally figured out what that really meant and that he would never come home again. They had taken him away to the hospital and I had that memory solid in my mind, but I kept thinking he would come back. And I cried and I cried and I'm just about ready to cry now. I don't actually have good memories of him, because I don't actually have any memories except the one of him having his heart attack and the one of him being in that bed before they took him away. Just the crying.

    I haven't cried yet for my husband. I think I've mourned, but I haven't cried. I can almost cry for something that happened over 60 years ago, but not for something that is happening now.

    And isn't that interesting?