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    • CommentAuthorAdmin
    • CommentTimeJun 11th 2012
     
    Good afternoon everyone,

    I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am sad and I am feeling sorry for myself. I wish I it weren't so, but it is. Please read the blog and post comments here. How have you overcome the feelings I write about in the blog?

    joang
  1.  
    Thank you, Joan. You said what I have been thinking this morning after the PT was here. I have lost him. He is just the shell of the man he used to be. I have handled things pretty well up until now - but I think I'm just so tired - as you are - of the constant questions, no memories past 30 seconds, if that, and other things. I'm just tired, tired tired -
  2.  
    Oh yes, Joan. I have those same feelings and I don't really think we can overcome them. We just have to resign ourselves to them. I just keep saying to myself that it could be much worse (and I know it probably will be). Last week I had an appointment with our attorney to get some things changed. Come to find out his wife is suffering from dementia caused by massive stroke but he is hurting like all of us. He and I agreed that it seems to be the lack of conversation that really affects us. We can't talk about anything, personal, political or even everyday stuff. Only valid question I can ask is, "are you hungry, do you want to eat?"
  3.  
    To all
    I can relate to this blog very well. I know how Joan feels and why she feels as she does. If I live to be 100 I do not believe that I will ever again go through anything as difficult as I went through as the phases of AZ took my wife. Prior we had been everything to each other. As the AZ started slowly at first then as it progressed time just seem to slip away and almost overnight like she went into a fast decline and passed. Every emotion Joan mentions in her blog is a very accurate account of this path. Now the journey is over for my wife but I still have to try to put myself back together and start a new life at 71 and that is not the time to start over. I am not sure I even have what it will take to begin a new life with someone else. As time passes I still do not know where this new journey will take me. God bless all who come here for support and just try cause you are doing the best you can with what you have to work with. I wish I could tell you it will get better but I cannot define what better is. sorry
    Bruce D *
  4.  
    I don't know. I've been assembling a scrapbook of photos of Jeff. Looking back it's amazing to remember how he was in each year of the most recent decade and think "wow...he was relatively intact in [2007 or whenever.]"

    Now I'm past the point when I was sitting there thinking those exact same sort of thoughts. It goes so fast and slow. Depends on how you look at it.
    • CommentAuthorMachonnold
    • CommentTimeJun 11th 2012
     
    I wrote this journal entry May 31, 2012. I shared it with some ALZ Spouse friends and a few "regular" friends....I just swing from one emotion to another. Boy, has this hit home.....here is what I wrote......"There are things I miss a lot about the past. Old friends, familiar surroundings, my parents and grandmother’s cooking. I crave being able to sit in my parents living room and watch The Cooking Channel with my Dad, my mother’s piano playing, crawling into bed in the morning with my Nana and lying there while she listens to me talk but sometimes what I just miss most are their hugs and being able to physically touch them. But they are gone and it is “forever different.” This is what I miss with Carl right now. I miss crawling into bed at night have having him envelope me in his bear hug that at one time would just dwarf me. I miss his kisses, I miss the closeness of making love with him, the tickle of his mustache on the back of my neck, and I miss his presence.
    Our age difference was becoming more and more apparent as time passed. Having never been a high energy sort of person, Carl often worked circles around me. I seemed as old as he was or more so sometimes. But in the last 10 years the inevitability of aging has caught up. The feel of his thin hands, his boney shoulders and his eyes….oh yes, his eyes that give me the “nobody’s home” look sometimes; they all make me feel like I am living with a foreigner. We have now approached the “forever different.”
    I don’t want to stop loving him and I won’t, but I really want, in my childish way to have my old Carl back, I miss our past. I resent what has happened to him and our life. And I am so lonely for his companionship. We had a close marriage, we have been great friends and laughed and loved through so much the last 30 years.
    The Alzheimer’s diagnosis has widened our age gap, so much so that it is like living with and caring for my grandfather. I hate it. I hate Alzheimer’s, and I often hate my day-to-day limbo life. There, I have said it, admitted it on paper, the counselors all say that is supposed to make me feel better…so far…not yet.
    Oh well, today, I will just take another deep breath and remind myself that my mother didn’t raise a sissy, pick myself up and go on… The “Finding Maggie Project” will move forward with new experiences, new friends, and new interests. God willing, Carl and I will both make it through this with our love and good memories intact. And eventually the horror of being an Alzheimer’s spouse will fad and the “forever different” will become the normal, if I can make it that long….."
    He has been having hallucinations the last couple of days, continuing to argue with that he is fine and we are all the ones who won't let him do anything, His short term memory is about 10 seconds but if it is sometime i want him to forget...nope, he remember it all. I feel like I can't win and I am so tired.
    • CommentAuthorCharlotte
    • CommentTimeJun 11th 2012
     
    I have had to face the reality more than ever the last couple weeks that we are no longer a couple to mingle with other couples. When the lady that hurt me badly last year sort of apologized for the treatment of me and my sister the weekend the managers were gone, she admitted the truth of last year. They have become quick friends with a new workamper couple that are parked next to us. I told her I hope she doesn't hurt them like she did us, but they probably won't because the new workamper husband will do things with this ladies husband where Art would not. She said that was the reason last year they ended it with us because he husband did not like her having a friendship that he was not involved in. Reality hit me. There have been two get togethers of the workampers and we have gone to none because Art does not want to.

    I see the isolation even more now, I feel it more, it hurts more. Thank goodness for the people I meet when they check-in that I can chat with or walk around the park and chat with. There is one workamper couple that we visit for short visitsb- they are in their 80s and have a dear friend with AD, so they get it. When Art walks around and they are out they will chat. Sadly, the friend Art was looking forward to being with when we returned - Art does not want to go see him.

    I get so tired of sitting at my computer while he watches TV. He isn't even doing his work searches all the time like he use to. Maybe he is bored too. I did check to see if he was finding the words and he is doing that. Guess we are transitioning into another phase of life and this disease. We have been married 41 years and most of those were just us - not a lot of outside friends. Seems if we did make friends with a couple we ended up being hurt terribly by them. Even though it was just the two of us it was a lot different than now. Today I had him put the ladder golf together and we played that. I am also doing more reading cause I am bored playing games.
    • CommentAuthorFayeBay*
    • CommentTimeJun 12th 2012
     
    If I were to post my feelings here, my post would read almost word for word like Bruce's. Although I would never wish this on anyone it has helped me to see my feelings are normal.
  5.  
    Joan, you have covered all the bases...I am living your life and you mine in so many ways.

    I intend to send, with your ok of course, this essay to our 3 girls, my brother, and my step kids step dad who is a great guy but I don't think he really gets some of this and if he reads this and sees himself even a little bit it may help him.

    Yesterday was our 35th anniversary and until my brother's flowers arrived to celebrate the day he had no idea what day month or even year it is...so I was all alone with our anniversary with no one to share it with sitting right in the same room.
    • CommentAuthorFayeBay*
    • CommentTimeJun 12th 2012
     
    While thinking about this I would like to add my reaction to Acy becoming a little boy. Acy and I were never blessed with children. It always troubled him to think one of us would some day be alone. When he first started behaving like a little boy I would think, I'm to old for a first child now. But as time went on we adjusted and accepted our new roles in life. I learned to love this little boy that was in my care. When he died I lost both husband and child. I miss them both.
    • CommentAuthorAdmin
    • CommentTimeJun 12th 2012
     
    Mimi,

    Yes, of course you may send it. Whenever someone wishes to send one of my blogs, I just ask that my name and website are noted.

    joang
    • CommentAuthorSherizeee
    • CommentTimeJun 12th 2012
     
    Joan- I am so right there with you, and I am soooooooo tired of trying to explain this to any one else. I feel trapped in a very dark black hole
    • CommentAuthorCharlotte
    • CommentTimeJun 12th 2012
     
    FAyeBay - even some of us with children end up alone too. (((hugs)))) for you as you continue to adjust to your new life.
    • CommentAuthorJan K
    • CommentTimeJun 13th 2012
     
    Sherizeee – I, too, am really tired of trying to explain this to anybody else. Lately it seems like it's just not worth the effort to try any more.

    The loss of conversation does seem to be what is doing me in. In prison, their worst punishment is solitary confinement. That's just about what this is like. We're in the house 24 hours a day, but there's nobody to talk to. No one to share the little things with, or to talk to when something major happens, either. It's hard when you get bad news and you look at your "other half" and know there's no point in even trying to talk to them about it. So you deal with it like you deal with everything else now—alone.

    I think about those vows "in sickness and in health". This seems like so much more than "sickness". It's really does seem more like dealing with a death, because the person is already gone in just about every way that counts.

    I was thinking the other day that it would be nice if they had bereavement support groups for caregivers. Not support groups about how to be a caregiver, but groups dealing with the emotional pain and grief of living through this whole process. Maybe that sounds too extreme, but I sure think it would help me at this point.
  6.  
    Jan-our hospice actually does have such a group. The hospice chaplain was also a big help to me. Many is the time she wound up with a soggy shoulder.
    • CommentAuthorAdmin
    • CommentTimeJun 13th 2012
     
    Jan K,

    Oh, how I agree with you about the support groups on dealing with the emotional pain. That is the main reason I started this website. In my support group, all they talked about were caregiving tips - how to get them to shower; how to get them to stop wandering; how to not argue with them; how to not ask them if they remember, and on and on and on. No one would talk about how they FELT about losing their best friend, their marriage, their sex lives. I wanted to scream, so I started this website instead.

    joang
    • CommentAuthorxox
    • CommentTimeJun 13th 2012
     
    In my support group, which I am missing tonight for the first time in 3 years, we largely talk about our feelings. People ask practical question, which may be anything from helping in the shower to dealing with the lawsuit started by the step-children, but it is more about emotional connections and venting and crying than anything else. Maybe this is because we don't have any formal presentations, it is just for the people there to talk with each other. Of course we have a moderator to give advice and make sure that no one dominates the meeting.
    • CommentAuthorLFL
    • CommentTimeJun 13th 2012
     
    Thank you FayeBay for summing up our situation. we too never had children and now I am caring for my first child who happens to be my husband. I am mourning the loss of my husband "as I knew him" and will definitely miss and mourn the loss of my first child even though this journey has been difficult.

    What's a wife?
    •  
      CommentAuthorJudithKB*
    • CommentTimeJun 13th 2012
     
    Jan ...you just hit the nail on the head for me. For the past two years (except 4 hours every Wed. morning for the past 5 mos. when the cleaning lady stays with my dh) I have not been out of my home without my dh.
    And, my dh sleeps an average of 17 hours a day. I am a prisoner in my own home. Now...I know why I am so
    depressed...I have been in solitary confinement. Tuesday I checked him into a beautiful memory unit in an ALF
    for two weeks. I am in heaven being home alone right now. I have taken a couple of small naps during the day and went to the store without having to check my watch to make sure I got back within the time frame the cleaning lady could stay and/or I didn't have to have my dh with me and constantly be checking to see if he was behind me.....what a relief.... I love my dh very much...but, honestly right now I can't say I miss him at all.

    I am loving this freedom....out of prison now for two weeks.
    • CommentAuthorSherizeee
    • CommentTimeJun 13th 2012
     
    When my dh was on Namenda he slept like that, when I took him off he became much more lucid.
    • CommentAuthorCharlotte
    • CommentTimeJun 13th 2012
     
    JudithKB - good to hear you are resting and enjoying your respite.

    Sherizee - my husband had the tiredness, exhaustion, and vision changes from Namenda so he went off it.
    •  
      CommentAuthorJudithKB*
    • CommentTimeJun 13th 2012
     
    My dh has been on Namenda for at least 5 years. He is on Raysdine (sp?) too. I think I will ask the neuro the next time if I could take him off those drugs. I don't think they are working any more. The last time I asked him about a year ago...his answer was No No No.
    • CommentAuthorabby* 6/12
    • CommentTimeJun 13th 2012
     
    In 2006 I started to think, "but he is the one suffering, not me". In 2008 that became more frequent and by 2010 it became just about constant. By the beginning of this year, realizing he could no longer read, converse, watch tv (yes, we had the debates and discussions too), I started to accept that he was gone. No, not accept, I began a new level of resignation.

    I've received cards and messages: "now he is in a better place". It is too early for that to click for me. But I am thinking, I've been frustrated, sad, angry, and confused. Have I been suffering all this time? I've vented here about being a phony, smiling at him and speaking sweetly when I really wanted to be driving away as fast as I could, screaming all the way.
    •  
      CommentAuthorNikki
    • CommentTimeJun 13th 2012 edited
     
    Dear sweet Abby, I hesitate to respond because I know you must still be so raw. But then I do want you to know I read your post and I want to offer you some support. In my opinion only Abby, I do not believe you ever reached that place of total acceptance so many of us talk about.

    You have seemed to fight that, and called it resignation. And I do get that, as that is what I was before I reached the place I am now. Perhaps that kind of acceptance can only come in the late/end stage? Maybe I am the only one who has found this peace whilst still in the trenches of this hell?

    For what its worth, because I don’t think you ever reached a place of peace, a place where you completely loved your spouse for who they are now, enjoyed your time with them and were able to find reasons to smile through the tears... So I would say yes Abby, I think you suffered throughout your entire journey….

    I only hope your suffering will end soon and that you will find peace knowing you did not only the best that you could, but that you did exceptionally well in am impossible situation.
    I continue to hold you in my prayers ((Abby))
    •  
      CommentAuthorNikki
    • CommentTimeJun 13th 2012
     
    Fayebay, LFL, having lost our only child and suffering numerous miscarriages, I completely understand what you are saying.
  7.  
    my heart is wrenching seeing your post Abby, but, selfishly I am so glad to see you. If I may, I want to say I love you too, and that I also see what Nikki is saying. And as you were going through all this, who ever had a clue that your husband was going to go so soon, and doctors certainly saying otherwise.

    God bless you Abby, to get all guilt out of your system, and to heal your sore heart.

    Oh how I wish we could just BE together now, and hug and cry. I know some say that if they get with people, they don't want to talk about AD. But, if I was with you guys, we would talk, and then we would move on the other things , because ONLY WE KNOW , ONLY OUR HEARTBREAK is for the loss of a mate to losing their minds and themselves. Only we can truly comfort each other.

    Dado and I have only been together for 11 years, it seems so minuscule compared to most of you here. Joan I am so sad for you missing your Sid, each and every day.
  8.  
    JudithKB in response to your note above, I am so very happy for you that your respite is up and running, and so very proud of you too. I hope you enjoy every moment, renew, refresh, rejoice even a little. It is not often any one of us here gets to feel moments of rest and happiness. It is fleeting, enjoy it, and hope that one day there will be more of it. And of course , that your DH is adjusting well.
    •  
      CommentAuthorShannon*
    • CommentTimeJun 15th 2012
     
    Joan, you expressed that so well. I so miss "what was" and how my DH used to be. We just put him in a nursing home and people ask me if I miss him. I miss the "old Terry" and I miss having a warm body around, but I don't really miss what he had become... what makes me the saddest is when I am somewhere or doing something and it reminds me of all great times we had at one point...
    • CommentAuthorms. magic
    • CommentTimeJun 16th 2012
     
    This paragraph from Joan's blog brought tears to my eyes, because it says it all:

    "The loneliness and sorrow I feel cannot be imagined by anyone but an Alzheimer Spouse who is experiencing the same. I have no husband to talk to; only a cogitively impaired man-child to tend to. I have no husband to share passion; only a man who clings to me like a child. There is no longer a marriage with playfulness, intimacy, partnership, or conversation. There is only me in the caregiver role all day every day."

    Last weekend DH and I drove to Orlando to meet my college roommate and her husband.
    While it was good to see them, it was very hard too.
    I saw all the things in their relationship that I no longer have with my husband, the things that Joan mentioned - the playfulness, the partnership, the conversation.
    I heard about all their recent accomplishments and projects, their many visits to their kids/grandkids, their vacations, celebrations, plans for the future ...
    Wow ... I realized I had little to contribute.
    I go to work 5 days a week, then come home and care for DH.
    On weekends I care for DH.
    I am afraid to make plans - didn't even know for sure if we'd make it to Orlando, due to DH's health issues.

    On Sunday night when we got home, I fell into deep despair.
    I hated myself for being so envious of them ... but I was.

    I think they had a clue, at least a little one, when they saw my frustration at having to take DH to the bathroom several times. Like a little child.
    And they saw the changes in him - and they were very kind and tried to include him in the conversation.

    Funny: When I tell my mom or sisters about this experience, this feeling of envy for others who have "normal" relationships, they try to tell me "oh, you don't know what goes on behind closed doors, they're probably miserable."
    My mom and sisters just don't get it.
    DH and I were never miserable in our marriage ... I don't expect my college roommate and husband are in theirs. [They celebrate 40 years in the fall.]
    I know they want me to feel better ... but saying that others are miserable doesn't accomplish that.
    • CommentAuthorCharlotte
    • CommentTimeJun 18th 2012
     
    yesterday as we were changing shifts, the girl leaving asked me why I wasn't coming to the get togethers. She is 29. I tried to explain to her, again, that hb can't follow multiple conversations, for him it is like being in a room of people speaking a foreign language with an occasional English word. She said something about just me coming. I told her I would not be comfortable, I am not single but yet we are not a couple. She said yes we are. I told her yes we are married, but we do not have a marriage anymore, Alzheimer took that away. She didn't get it which at 29 does not surprise me. Her husband is 51, hangs out with people his age which she calls older folks, and thinks she knows what it is like. Oh well. I went to my nieces wedding 2 1/2 years ago alone - it was horrible. I won't go alone to a group gathering unless it is something like the women only like we did last year.
    •  
      CommentAuthormary75*
    • CommentTimeJun 18th 2012
     
    Charlotte, I look at your photo and read your warm and interesting posts and wonder why you don't go to these gatherings if for no other reason than for the sake of other people there? You would be an asset to so many. If I went to such a gathering, I would make a beeline towards you because of your smile. I think that campers might get bored with each other's company and welcome a chance to talk to you. Don't think of yourself as half of a couple, with the other one missing, but as an alive, vibrant one all on your own.
    • CommentAuthorCharlotte
    • CommentTimeJun 18th 2012
     
    We do walk around the park in the evening talking to the campers. The gatherings are of the Workampers, not those staying in the park. The other night we started out around 7 and got home around 11 - were talking with tenters, then a couple that stays monthly that I had not met (stayed there chatting with them for probably 2 hours), then chatted with a few others that were still sitting outside enjoying fires and the warm evening. I enjoying visiting with the guest because I am the type to not talk about me but ask questions about them, usually their RV travels. My fellow workampers, the younger one anyone, love to talk about themselves. I would rather one on one with them.

    I don't like to share with others too much - been burned too many times. That is why I loved counseling - the client spills their guts not me.