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    • CommentAuthorthomp360
    • CommentTimeOct 8th 2017
     
    I guess the times that I am loneliest for my wife who has the disease and I don't know how long she has to live creates two upsetting problems for me. One is that I am in "limbo" as she has no more mental cognition at all, has not recognized anyone for months and is no longer here mentally. She is still here physically, is fed and does eat, but I have no idea how long this situation will last and I don't know how to react. Waiting, always waiting, but with no hope. Second is that the hardest parts of the day are getting up, facing another day without her after forty five years of marriage. It's the empty pillow next to me that upsets me as much as anything. thomp360
    • CommentAuthorbhv
    • CommentTimeOct 8th 2017
     
    The waiting with no hope gets me too. I was at a Care Pathways class at the Office on Aging and they said one thing you have to pay attention to is Never Lose Hope. I almost fell.off my chair laughing out loud. They offered the most absurd things to be hopeful for I finally agreed to disagree with them.
    Yesterday.was our 35th anniversary. The pillow next to me is not physically empty. I kept saying "happy anniversary to me" as I was cleaning the poop in the bathroom. Still not figuring out how it is physically possible to get poop in some of those places.... but never mind.
  1.  
    I know it’s hard for you ! It is a horrendous situation! It’s hard to see the light at end of tunnel! Just try to get out away from it for awhile! Take care of yourself !!
  2.  
    Dear Thomp360

    I spent two years with my dear wife in the same situation as yours and I found that
    What helped me the most was keeping myself busy every minute of the day and the
    way I did that was by writing stories about her and our life together (67 years)
    • CommentAuthorRodstar43
    • CommentTimeOct 8th 2017
     
    Hi Thomp360,
    First, your not alone or unusual with those feellings. My wiife of 55 years marriage still knows me but, enjoy the limbo. It could get worse. During one week in mid September, we found out my wife also has Parkinson's and an agressive rare cancer - angiosarcoma. Which comes first. I am trying to avoid feeling guilty for just wanting it to be over. Fortunately, my wife forgets the situation. For me, it just goes on and on.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 8th 2017
     
    Rodstar43 - there are many here who admit they wish their spouse would get cancer or die of a heart attack vs going the distance with this diesease.

    Lonely - oh yes. Even with him here, we can't discuss anything cause he has no opinion or thoughts on a subject. I feel less alone the days he is gone to day care than when he is home. I visit less and less with people in the park (we live in an RV park) because I don't have anything to talk about.
  3.  
    Yes, the waiting with no hope. Being lonely, exhausted...wanting it to end...but wait! No!...because if it ends it means they have died. We have all been there. Just enjoy whatever small moments of peace or relaxation you can create for yourself--for me it was simply a hot cup of coffee on the screened porch in the morning--five minutes maybe--before it all started all over again. Or I should say...continued...because he had me up day and night, especially the last four months. And so few people "get it." You will hear the stupidest platitudes even from people who should know better. You have to just grit your teeth and try not to give them a big punch upside the head.
    • CommentAuthorbobbie
    • CommentTimeOct 9th 2017
     
    grit your teeth and hope they don't break. People can't understand, and its hard to understand even with the different stages. My DH is in the anger stage. But one good thing about it-----when we have a good day, it is so nice and I know it.
    He is so reasonable---with no reason.After 60 years of him telling me how it is REALLY done, I'm having such a hard time not believing him. He was always the decision maker, and I have been happy with it like that. I never applied for this new job. hugs to you all.
    • CommentAuthorthomp360
    • CommentTimeOct 9th 2017
     
    Thank you for your comments. It is truly the waiting. And the people who say "It may be a blessing in disguise." I t will be very well disguised is the platitude I hear most often. I now I'm being selfish. She is not here at all mentally-but she is here physically. When that is gone I am so scared and fearful that all will be lost. I have been writing stories. And my kids, 35 year old son and 30 year old daughter and their spouses, tell me to do things get active. But I find that almost impossible to do. My heart is on my sleeve and they think I'm too gloomy; "If you can't change it, don't worry about it they say." I can't do that. I just worry all the time. They at least have someone whose shoulder they can cry on-I have that empty pillow.thomp360
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 9th 2017 edited
     
    That is why we have this site because it is different with a spouse. I went through this dementia with grandma, aunts, mother, father-in-law, sister-in-law, and now husband. It is so different. My father-in-law went over 20 years, his younger sister died after 9. We are now 9 1/2 years and no end in site. You get emotionally and physically drained.
    • CommentAuthorbobbie
    • CommentTimeOct 9th 2017
     
    If you can't change it, don't worry about it. I've heard that from my kids. It is sure easier to say than to do.
    • CommentAuthormyrtle*
    • CommentTimeOct 9th 2017 edited
     
    Hi thomp360. Yes, loneliness stalks us all. One of the hard things about being an Alzheimer's spouse is the isolation. It seems like nobody understands. I found that expressing myself here helped with that because I knew someone was here and listening to me. Like you, I have no patience with platitudes and you won't find a lot of them here. We are a tough bunch. Welcome to this site. I hope you feel free to post often.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 9th 2017
     
    I would be lost and more lonely without my computer and the internet.
    • CommentAuthorRodstar43
    • CommentTimeOct 9th 2017
     
    myrtle*, you sure know how to hit the isolated nail on the head. Thanks for getting it right.
  4.  
    If somebody had said to me, "It may be a blessing in disguise" I would cheerfully boot them into the next county. Good Lord. And that one about "If you can't change it, don't worry about it." Oh yeah, right. Just try having a spouse with Alzheimers and not worrying about it. Like, what is with these people?

    And being told to do something, to be active. Just how are you supposed to do that when you are exhausted and tied down with taking care of your spouse? I was lucky to get a 20-minute walk once in a while when the aide was there. It was hard enough to get out to the grocery store, bank, and post office, much less trying to get out to do something enjoyable. People simply have no idea.
    • CommentAuthorRodstar43
    • CommentTimeOct 10th 2017
     
    Elizabeth*, you got those feelings desribed rIght. Also, well said!!!
    • CommentAuthorthomp360
    • CommentTimeOct 10th 2017
     
    Thank you Elizabeth for your support. My kids don't seem to understand my pain. I do understand they too, and their spouses are in pain. But it does irk me when they tell me not to worry about it. My wife is i a memory care facility, on hospice care, and I don't know what is going to happen or how long. Truly, how can I not worry? thomp360
  5.  
    Over and over again ....... I read here about how upset we get when
    a family member or one of our best friends says the wrong words to us.
    ...... I well remember because it happened to me. But after thinking
    it over, I realized that they were doing their very best to say the right
    words about a horrible situation when there really are no right words.
  6.  
    This discussion has got me thinking about how important words are to all of us.
    But what else have we oldies got ?
    Someone said, "Many a heart is broken by words left unspoken"

    I just love these words to Beth Midler's song "The Rose"

    Some say love it is a river
    That drowns the tender reed
    Some say love it is a razor
    That leaves your soul to bleed

    Some say love it is a hunger
    An endless aching need
    I say love it is a flower
    And you it's only seed

    It's the heart afraid of breaking
    That never learns to dance
    It's the dream afraid of waking that never takes the chance
    It's the one who won't be taken
    Who cannot seem to give
    And the soul afraid of dying that never learns to live

    When the night has been too lonely
    And the road has been too long
    And you think that love is only
    For the lucky and the strong
    Just remember in the winter far beneath the bitter snows
    Lies the seed
    That with the sun's love
    In the spring
    Becomes the rose
    • CommentAuthorRodstar43
    • CommentTimeOct 10th 2017
     
    Thank you Georgestreit, there are no good words, from anyone here on earth.
    • CommentAuthorbobbie
    • CommentTimeOct 11th 2017
     
    My first thought on reading the heading was "oh, I'm not lonely". I'm not so much, during the day and at night I don't think I called it loneliness. I call it, not really wanting to fix supper, nothing on tv. I want to watch----alone. Its time to go to bed, but I'm not really sleepy----maybe if I get up and eat a little now it will help me go to
    sleep. I don't really want to knit/crochet right now, I'll just sit here and pet the cat. I injust wish he were sitting/lying here silently beside me. I've decided that
    is loneliness.
    The song is sad, but true.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 11th 2017
     
    bobbie - also a great description of depression.
    • CommentAuthorbobbie
    • CommentTimeOct 11th 2017
     
    it is. Don't you think a mate with alz. nearly always guarantees depression? I'm only an anti-depression rx---guess it helps.
    • CommentAuthorRodstar43
    • CommentTimeOct 11th 2017
     
    bobbie, I think your right about the depression. Sooner or later it may get you. I used to blame my depression only on the chronic pain I have suffered. As I think about it, my depression really increased when my DW started down the ALZ road. Hum, a coincidence? Humor, joy left little by little until I am at a level above rock bottom for which I have determined to desend no more. Maybe the anti-depression drugs help. Maybe the counseling helped. Maybe my faith in the almighty has pulled me through - so far.
    So, don't kid yourself, Mr. depressed is out there. Get all the help that is available. You'll need it!!!
  7.  
    Yes, I believe antidepressants can help. DH (dear husband for newbys) had been on one for a couple years, but I finally went to my doctor and said I thought the wrong person was on the antidepressant. He had me in tears 3 times a day. She prescribed something and after 3 tries, got the one that really worked.
    • CommentAuthorbobbie
    • CommentTime7 days ago
     
    Mary, I guess that is what I should try---another one. He is so unhappy and it is all my fault. Who knew I was so powerful?
    • CommentAuthorRodstar43
    • CommentTime6 days ago
     
    Don't let yourself be pinned down with one antidepressant bobbie. Force them to expeiment. I have even let them give me 4 antidepressants at one time. You are in a battle and use as many weapons as you can get (insurance wise). One might help. By helping yourself you are helping him.
    • CommentAuthorMim
    • CommentTime6 days ago
     
    rodstar, my husband also has bladder cancer now....I feel it's kind of a race to see which one "wins" (bad terminology, I know). We (kids & I) have determined no treatment for that, no more surgery (torture for him afterward), no more cystoscopies for at least another six months (to see how far it has gone). There is just no logic to all of that at this point.
    Dan's pillow has been empty for me for a while now...I had to move to the other bedroom quite a while ago. Just couldn't take it, plus the inhuman snoring!
    What is the "blessing in disguise" supposed to be? I've read somewhere "Lord, please give me a blessing that isn't in disguise"! :)

    My only hope is in Heaven now...I'm almost 76, with cancer myself (second round), my husband obviously is nearing the end of his earthly life. We are both believers, if you will, & our only hope now is in our eternal life in Heaven with our Heavenly Father. I know many don't believe in that, just telling where we stand. Of course, I'm not sure that Dan remembers that, at this point, but I know he did & it still will hold true for him when the time comes.
    • CommentAuthorRodstar43
    • CommentTime6 days ago
     
    Mim, which one wins i understand. my DW, is it AD, or angisarcoma cancer, or parkinsons?
    It makes u numb. what is in the final chapter and how many pages are the last chapter.
    Either way it is a lonely ride.
  8.  
    I am here, Rodstar and Mim. Hope it makes it a little less lonely. Thoughts and prayers for you both today.
    • CommentAuthormyrtle*
    • CommentTime5 days ago
     
    Rodstar and Mim, I'm here, too. I'm rooting for you both to survive and to find life to be worthwhile after Alzheimer's.
    • CommentAuthorbhv
    • CommentTime5 days ago
     
    Mim...... it pains me that all I can offer are virtual hugs. I am grateful.for your friendship.
    • CommentAuthorRona
    • CommentTime5 days ago
     
    I have a hard enough time just dealing with Alzheimer's let alone the added ailments you and your spouses are enduring. Hang in there Rodstar and min we are all here with you. Sending a big hug to both of you.
    • CommentAuthorRodstar43
    • CommentTime5 days ago
     
    You know it is, there is a story worse than yours. If I feel too sorry for self I reread Job in O.T. Now there was a guy with problems.
    • CommentAuthorbobbie
    • CommentTime5 days ago
     
    can we all be together in one big hug.

    Just when I feel like I am at the end of the rope, a knot appears to hang on to. I'm so sorry for all of us having to go thru this, and so sorry for our Loved ones having to go
    thru this. I am a Christian also,and at this point death would be a release.
    • CommentAuthorRodstar43
    • CommentTime5 days ago edited
     
    bobbie, you got the release part right. How many days will there be of this not knowing the "When" of this AD road. My worst fear is somthing cuts my life short and I will no be there for DW. So, I hang on to that knot very tightly. I know I will recover when the time comes. My concern is with the 24 hour day to day keeping sane enough to carry out what I swore to do over 55 years ago. Very HARD duty as a military person would say. In my 23+ years inthe Air Force and a First Sergeant at that, nothing was a hard as this caretaker duty. Even graduate school does not compare to what you Ladies and Gentlemen are doing. Just keep going!!!!!!!
    • CommentAuthorbobbie
    • CommentTime4 days ago
     
    I was thinking, as the care givers, we have the mental, physical and financial stress of handling all of this. I wonder if I have enough of any/all of these to make it thru.
    One day at a time. But some days I just want to argue I want to be right not always in agreement, like we are told to do. If I do disagree, he comes back with,
    "that's right call me a liar". 10 years ago I would said "I guess I am" and not "oh I must have misunderstood what you meant/said".
    • CommentAuthorRodstar43
    • CommentTime2 days ago
     
    bobbie, I have had those same thoughts and and agreed to being a lier, guess I am.
    seems it comes on when I am defending the kids. eeeerrrrrrrrrrr!!!!!!!!!
    and I know it at time but I can't help myself.
    • CommentAuthorthomp360
    • CommentTime2 days ago
     
    One of my friends who just visited me said something interesting-different from many of my other friends and family who have in a way given upon me for not going beyond the loneliness and as they say "getting out there" away from the loneliness. He said it may be easy for them to say that, but not only are you lonely, you "are all in pieces" right now. Putting those pieces together, leaving the lonliness will be very hard for me. I wish that everyone I know understood that. thomp360
    • CommentAuthormyrtle*
    • CommentTime2 days ago
     
    Hi thomp, I think it's unrealistic to expect others to understand the fear, loneliness, and just plan misery of an Alzheimer's spouse. Friends and family just don't have the experience to appreciate what goes through our minds. Not to mention that they lack the skills to be helpful to us. Even though my father had Alzheimer's and I saw first-hand how horrible it was, until my husband got it, I had no idea of how much a spouse could suffer. That's why I think a local support group can be helpful.
  9.  
    Well said, myrtle*. Most spouses walk that lonesome valley by themselves just because that is the way it goes down with AD.

    I found it was more helpful to try not to overthink the reasons and actions of others because I had no control over that. I only had control over what went on in my own head.
    • CommentAuthorRodstar43
    • CommentTime2 days ago edited
     
    well said marche, don't overthink what your going through, if you do it hurts you and degrades your care for your AD lovved one. So shut your self do down if yod OD on youmess, ruv do something else.