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    • CommentAuthorWolf
    • CommentTimeApr 20th 2017
    Myrtle, are you ok? I like writing that without the space. Nevermind. I thought it was Rosanne Rosanadna who said that. Wasn't Emily Litella the character that played with Bill Murray that they were high school sweethearts? What the heck was his name? He kept looking down her front and giving her noogies. I'm going to have to look all this up.

    Nope. You're right. I just watched her get worked up over saving Soviet Jewelry when the story was really about Soviet Jewry. Nevermind. Emily Litella it is. And I found that it's Todd & Lisa that were in those other skits where Jane Curtain was the mother.

    Speaking of Jewelry, here's the last three stanza's from the poet Robert Zimmerman talking about how it matters about older and younger:

    A self-ordained professor's tongue
    Too serious to fool
    Spouted out that liberty
    Is just equality in school
    "Equality," I spoke the word
    As if a wedding vow
    Ah, but I was so much older then
    I'm younger than that now.

    In a soldier's stance, I aimed my hand
    At the mongrel dogs who teach
    Fearing not that I'd become my enemy
    In the instant that I preach
    My existence led by confusion boats
    Mutiny from stern to bow
    Ah, but I was so much older then
    I'm younger than that now.

    Yes, my guard stood hard when abstract threats
    Too noble to neglect
    Deceived me into thinking
    I had something to protect
    Good and bad, I define these terms
    Quite clear, no doubt, somehow
    Ah, but I was so much older then
    I'm younger than that now.
    • CommentAuthormyrtle*
    • CommentTimeApr 20th 2017
    The "poet Robert Zimmerman"? You are tying to mess with my head! I actually fell for that and tried to look up the original poem that the song was based on. If I end up in an institution for the criminally insane, I will tell the state to send you the bill.

    I am OK. Probably spending too much time alone, which allows me to dwell on troubling thoughts. Went to a garden club meeting where the agenda was show and tell. One member showed us a fancy shovel. Another demonstrated a mini-chainsaw. I snuck out early. Tomorrow I'm going to a production of Cage aux Folles at our local community theatre. (This was the 1990s-era movie "Birdcage" with Robin Williams and Gene Hackman.) All the men are being played by female actors and the women are being played by male actors. My neighbor's grandson is in it. I'm taking our former home health aide as my guest.
    • CommentAuthorcassie*
    • CommentTimeApr 20th 2017 edited
    He does it on purpose, Myrtle! Wolf likes to keep us thinkng and learning and now we know who Bob Dylan really is!! I didn't, before now!
    Perhaps Lucy slept on you because you were disturbed in your sleep?
    Cats can be very intuitive and caring despite their bad press as being aloof and disdainful.
    Ps: That was so funny about the garden club, show & tell. No wonder you bolted.
    I think that I may have been tempted to do something very unseemly!
    • CommentAuthormyrtle*
    • CommentTimeApr 20th 2017
    Cassie, I think you're right. Wolf wants to challenge us. I always liked that song so I recognized it immediately but like you, I did not recognize Robert Zimmerman!

    I also agree with you about Lucy. I think she was concerned about me but being a cat, her concern was probably based on self-interest. Who would feed her if something happened to me? I still love her, though.

    As far as our town's garden club goes, when I joined many years ago, it was an unorganized bunch of hard-core gardeners. Now it's like a civic association. I went tonight because I realized I needed to get out among other people. Fortunately, I do have a different group of gardening friends, a regional group that has only a mailing list and no meetings. We take tours of each others' gardens once a week during the summer (which is not long here).
    • CommentAuthorWolf
    • CommentTimeApr 20th 2017
    Hee-hee-hee. Also known as Bob Dylan.

    Birdcage is one of my absolutely favorite movies. Nathan Lane was outrageously good too. That play is what I call a play in every way that Hamlet isn't. Although I can draw a comparison between the completely over-the-top reactions to anything in Hamlet and the shrieking reactions of the Nathan Lane character. Or the house boy.

    I defy the psychiatrists of the world to explain which of those two plays is more outrageous. Hamlet was so dark and dreary, even the actors couldn't get themselves killed fast enough. If I'd been Hamlet, I would have sold a few things to raise some coin of the realm and moved to warmer climes. Get some sun or see the sun maybe. In Cage everybody knows they're crazy and goes with it. Only way to go.

    I have no life. But it's all around me. I can't access it yet but I hope. I hope that I can keep learning to love life again and be hurt by it again. I hope that I can withstand my feelings becoming fuller. I hope that I can find my way. I hope that I die satisfied with the character I wrote and played. Hope is good like a young child skipping around and playing, but it's not belief. It wasn't hope even though that's what Morgan Freeman talked about in Shawshank Redemption; it was that he believed the note and the money in that box and it was that belief that made him find out. Hope came out of buying the ticket and getting on that bus. Hope does not create belief. Belief creates hope. I had no hope for a long time but I believed nothing was going to stop me from walking out of that valley of death. I was along way along that road before hope started showing up.
    • CommentAuthormyrtle*
    • CommentTimeApr 21st 2017
    And then there is "Forever Young,"
    by Bob Dylan

    May God's bless and keep you always
    May your wishes all come true
    May you always do for others
    And let others do for you
    May you build a ladder to the stars
    And climb on every rung
    May you stay forever young
    May you stay forever young
    May you grow up to be righteous
    May you grow up to be true
    May you always know the truth
    And see the lights surrounding you
    May you always be courageous
    Stand upright and be strong
    May you stay forever young
    May you stay forever young
    May your hands always be busy
    May your feet always be swift
    May you have a strong foundation
    When the winds of changes shift
    May your heart always be joyful
    May your song always be sung
    And may you stay forever young
    May you stay forever young
    • CommentAuthorWolf
    • CommentTimeApr 21st 2017
    Myrtle, I came in exactly 1 second after you posted. I've never seen that before.
    • CommentAuthorWolf
    • CommentTimeApr 21st 2017
    Two years ago it was just a couple of months after Dianne passed and I came out of the hair salon and noticed an optometrist across the way. My glasses got wrecked in 2011 with one nose guard completely off, the frame was bent, and there were scratches on the lens - so on an impulse I pushed myself in. Last year at this time I was shocked to get a call from them reminding me I was due for an eye exam. I had completely forgotten about them but I went and when she processed my health card it was declined because I was listed as deceased. Last week I put up a post mentioning that I'm much more aware this year and instead of being shocked by their call, I wondered where they were. Well they called finally and I go on Tuesday.

    They called while I was studying up on medieval poo. I was looking up Garderobe where castles and manors offered the latest bathroom appliances which pretty much consisted of holes that you did your business down where posh people had their own ensuite hole so they didn't have to share. The thing is that they hadn't invented cotton yet and so many people wore things made out of wool, and what they found was that fleas and moths (or anything else) didn't like the smell around the garderobe so of course that's where they stored their clothes. Garde is French for keep and robe as in clothes. That morphed into ward-robe. So basically our wardrobe is a direct descendant of the holes in castles where they did their business which smelt so horrible even the fleas left. (Hey Dianne! Look! It's not just your poo that smelt so bad even my eyes would turn into their sockets trying to get away.)

    I loved history in high school. I loved that there were millions of men in hundreds of battles and not one single time did anyone ever have to go to the bathroom. I loved that nobody can swing a twenty pound sword or a forty pound axe around hard for more than ten minutes without a break. I love that most historic uniforms are such over the top, campy outfits, flaming queens wouldn't be caught dead in them. Huge Epaulettes, gold braiding, shiny buttons, red with blue stripes, blue with yellow stripes, capes, thigh high leather boots, screamingly silly hats, ribbons, badges, and of course tight pants. The white guys were 'discovering' and 'colonizing' and 'liberating' while not-white guys were heathen primitives who's cultures weren't worth mentioning. Yes sir, I loved history.

    What do these words have in common? Anger, awe, bag, band, birth, cake, club, crook, egg, fog, guest, husband, knot, law, leather, mistake, odd, ombudsman. outlaw, raise, same, scale, score, skin, skirt, steak, trust, want, window, and wrong. They're some of the 2,000 old norse Viking words in the English language. You can thank them for Wodensday and Thorsday to name two more.

    The thing about this re-used space dust is that it not only really gets around, it loves to have a good time. Anyone that doesn't think this is a silly place hasn't really looked at fish on a coral reef - God with neon spray painting cans gone wild (hey look! lime green and lemon yellow stripes!). People stretch their lips until they can get dinner plates in them. Peacocks. Zebra's (really?). Parrots with a larger vocabulary and better diction than the majority of people AND they like imitating people.

    Listen. A big star exploded a really long time ago and some of that dust got in our mixing bowl and became part of what's here. It took time to make this planet and for life to form and become what it is today. And what the product of all that energy, and time, and work can do is amazing. For instance motorcycle man across the street is easily six foot seven and weighs 250 lbs, most of it in the shoulders and chest. And what he did was teach his Grey parrot to imitate Cary Grant. "Judy, Judy, Judy" he says in that recognizable accent while motorcycle man is glowing in the blue light of an arc welder with frankenstein dark goggles on, welding together a motorized bicycle he's building in his garage. Why? Because space dust likes doing stuff.

    I've laughed so hard and I've had adventures I can't even tell anyone about. I've loved so much and I've felt such indescribable pain. I've been scared out of my wits and I've felt like I have everything at my finger tips. I used to get frustrated that I can't take such a shoddy and haphazard reality as this too seriously. I'm starting to understand that that was me. Life is very real but that's not the same thing as serious. It's not life I get balled up by; it's me in life I get balled up by.

    I can't take that too seriously either. Because I notice pretty much everybody gets balled up by being alive long enough. "Look! Fish that fly!" It points out with glee. "Good. Good." I say looking through the TV guide. There's got to be something on. Oh look, Caitlin Jenner or Punjabi hockey.
    • CommentAuthormyrtle*
    • CommentTimeApr 22nd 2017
    Wolf, The song is lovely in Joan Baez's clear voice. And thanks for updating us on your scholarly research findings.

    I met the stonemason at the cemetery this morning to talk about the inscription. When I was there, the line from the song, "Danny Boy," came to mind, "You'll come and find the place where I am lying And kneel and say an Ave there for me." So I silently said an Ave there for my husband, and then said it in French, since that was his first language. On the way home, I drove by a terrific garden center, and of course I had to stop. It turns out they were serving free popcorn and hot dogs. He had told me that his first English words (at age 4) were "OK" and "hot dog." So naturally I had a hot dog in his honor.
    • CommentAuthorcassie*
    • CommentTimeApr 22nd 2017
    Myrtle, I love the hot dog story.
    It took me a while to be satisfied with my husbands' inscription but when it was right, I knew and you will too.
    • CommentTimeApr 22nd 2017
    Yes, I loved the story, too. I had inscribed on my husband's plaque, "He made us laugh." It was true, even on his last day. What a great gift and talent he had.
    • CommentAuthorWolf
    • CommentTimeApr 22nd 2017
    I know the prayer by memory still. Ave Maria was also my parents' wedding song. My sister was there at their wedding. Sort of.

    I liked your stories too. New things and new memories. I'm still not happy though, I don't know whether I mentioned that. I blame Dianne. Well I blame her parents. I've made a mental note that the next time around I need to get extensive blood work done on them before marrying. If there is such a thing. I suppose in earlier centuries Alzheimer's would have been seen as devil possession or punishment for wickedness you would have committed if you hadn't been punished like that before you did. I'm not sure how that worked but it wasn't by getting blood work done.

    I think I mentioned that her tribe decided to leave me on this side of the river. I'm sure it not because Dianne bears the spectre of Alzheimers (lightning bolts! and thunder!), and that they're terrified of seeing it's mark like something coming out of a coal cellar. The poor dears. I wonder what's on TV? Oh look, it's that movie with Dustin Hoffman, Meet The Fockers.

    I'm kind of sorry they left. I have a lot of material I'd like to try. I could look somewhat disturbed and say "that's exactly what Dianne did" and quickly add "I'm sure that doesn't mean anything." Too much?? When I just typed that my mind showed a car slowing down and dumping a body out on the side of the road before speeding off. That's my mind making a joke about how welcome I would be. Oh well.

    There isn't going to be any stone with me but if there was I would like it to say what my early report cards still say forever frozen in amber thanks to my mother giving me them later in life, "could do better" they all said. If I could etch my own stone I would have it say "Try not to worry too much. There's no point. Here lies what's his name. He had a pretty good time for the five minutes called life." No names no dates. I'm just kidding. My tomb stone would say "Am I late??" Still no names or dates.
    "Wolf Krause--A Good Man"
    Back on the other page, Wolf and Cassie, thank you for your compliments. They made me smile and even wonder if I might I have second career calling. I used to be an ADHD rabbit sort, but the upside of AD is that I morphed into a turtle and now make up life at my slow pace as I go. That is why it took me so long to post on this thread. Actually I did write a very witty and erudite response (ha!) and a misplaced keystroke wiped it into dark matter. File that under "karma."

    Wolf, your browser history must be fascinating. If you ever commit a crime it will take the police years to figure out the where and the why of your computer history. Curiosity is the most underrated human trait, and yet it is the most valuable. Judging by your words on paper profile that we know, it would be safe to say that you have curiosity (and a memory to go with it in spades (that is a contract bridge term, BTW, not that I play bridge)).

    Cassie, It isn't like I am dashing off over the hill, but, sure, I will gladly wait up. This turtle shell is turning out to be a wonderful thing.
    • CommentAuthormyrtle*
    • CommentTimeApr 24th 2017 edited
    Actually, I think George once described Wolf as "a great man and a great Canadian." I think that would be a good epitaph for anyone.

    marche, Your posts are always insightful.

    Yesterday, I went to another play at an different community theatre: "Jacques Brel Is Alive and Well and Living in Paris." I went with two other widows and we had brunch beforehand. Even though I had coffee and no cocktail, I had a hard time staying awake during the play. I was so glad when it was over. Thinking about the play on Friday, I realize that although I appreciated the complexity of the work and the skill of the performers, I didn't laugh, as my friends had. I'm now asking myself why I am doing these things. Maybe because if I don't accept these invitations, people will stop asking me to go to things. And everyone says I have to get out of the house more. What's a hermit to do?

    P.S. Thinking about this more, I realize that I have not really laughed much in a long time. I've probably been kind of distracted and uninterested in things for years. But since I haven't been to many events, I just didn't notice it. I do enjoy getting together with people, though, so I guess I should continue to accept their invitations.
    • CommentAuthorcassie*
    • CommentTimeApr 24th 2017 edited
    One day soon Myrtle, the noise of your laughter will surprise you with its return.
    Keep going out with your friends while you enjoy their compay but you are allowed to decline an invitation some times, they won't forget about you.
    I chose to remain a hermit but have no regrets.
    Here is how relearning how to laugh happened to me. When Mary Tyler Moore died, I noticed that Netflix was running the old Dick Van Dyke shows that I watched every week as a kid and teenager. After watching the Chuckles the Clown episode that is so laughingly infectious (or would that be infectiously laughable?), I started watching other episodes too.

    Whether it was the history of growing up that I shared with the series, the amazing cast, the impeccable timing, or the truly first class writing, I found myself laughing and binge-watching the first season or two. Most importantly, I was laughing to myself. Out loud. My daughter came over and I had her watch the "snoopy Mary and the inflatable raft" episode. We laughed through the whole thing and she declared that it was one of the funniest skits she had ever seen.

    And just like that, I could laugh again. Oh, yes, it takes quality humor and short bytes (22 min episodes), Then I remembered the comedy shows that we watched as newlyweds - Cheers and Bob Newhart and reruns of Andy Griffith. And I remembered how much humor meant in our marriage and how my husband could imitate Barney Fife, and how he worked to be a happy, funny person. It was all sort of a epiphany to me that I needed to laugh again. For him and for me.
    Here is a wonderful short interview with Cheryl Sandberg on grieving. I think she is doing a wonderful thing by opening up the conversation on grieving.
    I'm sticking around, my friends. You are my friends, all black and white and read all over, and I love checking in and seeing what you have to say. So here's to you: Wolf, Cassie, Elizabeth, Myrtle, Charlotte, Mim, et al. You are such an important part of my history and AD is such a life-changing part of my history that I cannot shut the door and walk away.

    We all respond differently to life situations, which I readily acknowledge, and I want to be heard that I am not ready to close the door. In fact, I don't think I can ever close the door on AD. The profundity of it is staggering and left me staggering. It also left me sentimental about those who walked the walk at the time and those who now come after.

    So for now and here, join me in carrying on.
    • CommentAuthorcassie*
    • CommentTimeApr 26th 2017
    Hello Marche, I am staying too! I just love that word, "profundity" and think that is what we are," profundity personified! "
    Oh dear what a twat I am, sorry but couldn't help it.
    And all your words above, are wise and wonderful as usual.
    Hope that you never run out!
    • CommentAuthorWolf
    • CommentTimeApr 27th 2017
    First there was the fact that she signed in several times but didn't say anything when people were asking about her. More importantly there is such a different 'voice' it sounds like a different person. This was the person who started more threads screaming than anyone else. Then there is the perspective shift where now she only came here to help others and can't anymore. Widows just visit she says except she got years of help from them here (along with active caregivers).

    Now it's the grand announcement where she already said this last time. Her new friends are dementia widows where she's going and away from the dementia world she can't be part of anymore. Pardon??? They're dementia widows.

    It isn't the weird reactions which is nothing new. It's the tonal shift and massive swing in viewpoint. I suspect being dominated by him for so long and to such an extent is a very hard thing to adjust away from and she needs to find a way to do that now that his ability is slipping away.

    And finally there are all the close outs before the events. Still an active caregiver where Kevan is going to be depending on her more in this future than ever before, but now that he's losing his ghastly grip, she is leaving except visits as needed.

    I never detected a shred of warmth anywhere and I don't now either. This time she forgot to kick Myrtle when she's down and insult the widows. I guess everybody slips up somewhere.

    I don't need to hurt her and her likelihood of looking somewhere here that isn't about her is nearly zero. Good luck and I mean that sincerely. I'm not buying this goodbye anyway.

    I don't know what Joan will do. I don't know what's best for her. I'm still part of keeping her work going where it couldn't be clearer to me that I'm right in what I've been saying about the blind spot of calling recovery 'widowhood'. That has helped me too obviously because I'm still recovering from being an alzheimerspouse.
    • CommentTimeApr 27th 2017
    I agree with Wolf's analysis and thank him for his courage.
    Do we ever recover from being an Alzheimer spouse?

    I will try to answer for myself. I don't think I ever will. I feel forever changed and damaged, deeply. I am forging on as we all do but the scars are there. My husband died just over a year ago and daily I have a couple or many flashbacks to horrid times. The fear of him for so long. I am not frightened with the flasbbacks although will be glad when they leave. And I fully understand having them, a PTSD sort of thing. As an RN, I don't understand how the word "disorder" is part of that phrase as to me what happens after our degree of trauma is a perfectly natural phenomena.
    Ditto what mary75* said. I became weary of the repetition of problems and rationalization of offered advice. Sometimes it takes a man (Wolf) to call what we hens were too chicken to say.

    To katherinenecs*, no we never recover to the state we were in before. But I am trying to embrace this experience as something that has given me the chance to grow and especially grow more thoughtful, caring, and empathetic. At the same time I've grown more impatient with people who take up my time with superficial twaddle.

    I don't want this experience to define who I am, but to become part of how I came to be who I am.

    There are many horrors in life and one need only watch some of the Holocaust documentaries to understand that we are not unique in experiencing sorrow, fear, sadness, loss of hope and love. I do not feel that I have a right to rage against my lot in life (at this point). I owe it to the powers that be, others around me, and myself to incorporate the experience in my life, not as a victim, but as a tool to continue to smooth the rough edges and unawareness I had before. Some days are better than others.
    Thank you sincerely Marche*. I agree with everything you wrote. Very helpful and again sincere gratitude.

    I am finding my way, slowly. I have lived my life in my head (have a PhD to prove it :-)) and now am exploring living in my heart with creativity - e.g., taking oil painting classes. We students are having a community show early May. OMG!! SO outside my comfort zone and I paint like a pre-schooler and it feels great to push myself.

    And I am offering a monthly free Journaling for Health group at the community health center. Dementia is part of me and like you wrote, I don't want it to define me. It did for too many years.

    We do soldier on and as an RN I am consistently in awe of the human spirit and resilience to carry on.
    • CommentAuthorWolf
    • CommentTimeApr 27th 2017
    Yet the Holocaust stands out as to how systematically inhumane we can treat human beings.

    I shouldn't get my panties in a knot like that. It reminds me of a brunch I attended a few years ago where the several dozen people in the room where agreeing how open minded they were. "Which is why we have some many minority friends" I commented looking around at the pasty white room.

    It isn't when everything's going along that we learn much. It's when the tolerated get uppity and irritating that we learn what we really think. Or not if we don't see it that way. I've seen enough purple dumpy trolls do absolutely amazing things to know the package means squat.

    I'll never know what made that man check himself in so early. I suspect that I do but I don't know. Whatever else every road out of here is hard and I hope that she makes this transition. They're not easy as we know.
    • CommentAuthorBev*
    • CommentTimeApr 27th 2017
    Mary, I agree with you about Wolf. I wrote something in the other post about how I feel. Yes, I'm a widow now, but I think we all still have ways in which we can help. We are the ones who have lived it all the way through, from the beginning of the horror of dementia to the very end. We are the ones who can help. I don't know why anyone thinks this site has become only for those who are widows and widowers. I don't find that to be true. Yes, I agree the site isn't as active as it used to be, but there are many reasons for that.

    I will try to be as active as I can to help someone in the throes of the disease with their loved ones. As I've said previously today, but not in so many words, you can run but you can never get away from dementia. It will be with us forever, because it has changed our lives in so many ways. I know I can feel happy in a moment and then, out of the blue, like the other day while I was driving, Easter Sunday I believe, driving to my daughter's house on the highway, I saw a Massachusetts license plate and it brought back memories of our trips to Boston and the Cape and Nantucket. Then the tears come when you realize you are never going on a trip with him again. I hadn't been on a trip with him the whole time he was sick, but in that instant I finally realized it. I'm glad you all will be here as long as you can. I will be too.
    And here we are having a nice visit. (wink)
    • CommentAuthorWolf
    • CommentTimeApr 27th 2017 edited
    Just having some fun.
    Alrighty then. The wind seems to have blown in a bit of an identity crisis. Becoming obsolete is nothing new, but realizing it is.
    I've been thinking things over, and have more or less just decided to live and let live. This Alzheimers and post-Alzheimers process damages us and changes us in so many ways--we probably all are going to react a little differently as time goes by. I feel like I am trying to embrace the changes and the new world I live in now, and I am trying to make something out of my life, while still being there for others if I possibly can. I'm not going to leave this site, as it has been a godsend and saved my life--if I have anything much to contribute these days, (and I probably don't--ha,ha)--I will continue to chime in.

    I can't find Wolf's posting about being an immigrant and not hearing his own accent. I was really aware of my American accent those first few days in Dublin, and it seemed like every single person I talked to had an Irish accent. lol By the end of the eleven days, I thought the Irish sounded perfectly normal, but I was still well-aware of my own accent.

    Since I've gone about as far as I can go with my French (nowhere--ergggg)...I've gone back online to brush up on my Swedish. That's a language I really can speak, due to my babysitting and housework jobs in Stockholm when I was a student. It's fun to work on, and it's all coming back to me. My Swedish is a little more colloquial of course--the kids taught me how to say "poo", "Go to Hell", "You look like a witch", etc. All the important vocabulary.

    Still get a blue, nostalgic feeling here and there. It just seems like everybody is gone away--the family has just evaporated--and here I am, the last of the Mohicans. I try not to embrace this feeling too much. Watching a light entertaining DVD or reading a paperback mystery helps a lot. I've become a lot more reflective, but don't want to just be moping. For all you Catholics out there, I find that praying one or two of the Divine Offices every day is very nice--very Zen--like the Benedictines do. They're online, so you don't have to struggle with the Christian Prayer book so much. I'm going to try to get back to NY tomorrow, and if not, then the next day. (Keeping an eye on the weather--don't want to deal with too much rain on the interstates.) Then I need to come back down to the Heartland the end of May for my stepdad's memorial service on June 2. (Which would have been my mother's 90th birthday...sigh.)

    Well, have a good day, everyone. Wish we were closer--we could all sit on my porch and have a cup of tea.
    I don't plan to go anywhere. I still read all the new entries every day though I don't post very often. I'm not great with words and normally I just agree with what someone else has already said. My goal is to stay healthy and active.. I did lose 30 pounds since Ron died and have kept it off. I had a big birthday last Monday (80 years old), and my friends say I don't look or act that old. I still go to Curves 3 days a week and bowl twice a week when I'm home. Now I'm trying to catch up with the yard work.

    Yes, I miss the old Ron but its been so many years since he was the "old Ron" that I can hardly remember him when he was well. He wouldn't want to travel as much as I do anyway.

    If a subject comes up where my input would help I will chime in.
    • CommentAuthorLindylou*
    • CommentTimeApr 28th 2017
    Not a widow, but feel compelled to join this conversation. Nearly a year and a half ago I joined this website after spending a week or so browsing through it. It looked to be a place where I could be myself and share myself, through this horrendous ordeal known as AD. Decided to level that I was gay so I’d know right away if I’d be accepted. I was.

    One thing I know about this website is that we are all needy. We come here for support, for comfort, to vent, to share progress, to admit failure. Some folks may be needier than others. Some folks may need help for a while and then need to escape one way or another, just to try to get away from the overwhelmingness of this disease. Some in the course of typing words may not realize that their words are causing pain in others.

    I’d like to suggest an approach to feeling hurt: Say “Ouch, that hurt. Maybe you didn’t mean to, but that is what I felt”. And then, if you feel inclined, say why.

    I guess I’m saying this because I’d personally hate to be talked about in a negative way behind my back. Or maybe not behind my back. Personally I’d rather you just say “Ouch”. And then explain why.

    You all are my support group you know. I love you all. I need you. These next four, (eight, twelve, sixteen?) weeks are going to be some of the hardest I’ve lived through.

    • CommentAuthorFiona68
    • CommentTimeApr 28th 2017
    Lindylou, thanks for your suggestion. It's honest, simple, and kind. And we all need so much of that. I just want you to know that I admire your kindness, compassion, and strength.

    Sending you thoughts and prayers as you go through this next stage with your partner.
    • CommentAuthormyrtle*
    • CommentTimeApr 28th 2017 edited
    Lindylou, I feel the same way. I have gotten into trouble several times here due to my direct way of speaking and have not hesitated to apologize, or clarify what I meant, or alternatively, to defend a comment. But I am uncomfortable talking about others behind their backs. I figure we have one thing that binds us together: our experience as dementia spouses. Talking about that requires trust, which is paramount. As marche wisely notes, we all have differing abilities to express ourselves in writing. And let's face it, we might not all have been friends in the non-virtual world. But you are all my friends here and I wish you the best, which sometimes means only survival. Very sad and serious stuff.
    It is late and I probably should think about this more but I do want to say that it seemed as if the widows and widowers were being trivialized by being referred to as "visiting." That is just plain wrong. I found it offensive to have someone else declare what my motive was for staying on the site.

    I continued to come here not just for friendship but also because I "thought" I was helping. Guess I missed on that. An inference about moving on and new better friends stung as well as if we widows and widowers are yesterday's smelly fish wrapper.

    If I never posted this and just disappeared, I doubt that anyone would ask where I was. Such is the fate of the marginalized with dead spouses. Are we perceived as not being part of the crowd because we are no longer suffering enough?

    I may feel differently in the morning, but for now it's time to break camp and marshall my resources elsewhere.
    • CommentAuthormyrtle*
    • CommentTimeApr 28th 2017
    Marche, If you disappeared after this post, I would ask where you were. And I hope that if I just disappeared, you would ask where I was. I have some things to say about who posts but it is too late to do that tonight, especially in my time zone. Talk to you tomorrow. You are my dear friend.
    • CommentAuthorLindylou*
    • CommentTimeApr 29th 2017
    Marche, don't ever feel that I in anyway meant to trivialize what you do here, or to hurt your feelings at all. In just two discussions that I checked in on this morning I saw you saying kind supportive things to one participant and a necessary helpful point of view to another. The wisdom of this whole group holds us up, keeps us from becoming unglued. I count you as a friend.

    Well, I'm off the widow/widower page now, hoping I did not upset apple carts. I love (and need) you, my friends.
    • CommentAuthormyrtle*
    • CommentTimeApr 29th 2017 edited
    Good morning, marche and other fellow turtles.

    Since we tend to worry when someone leaves without saying goodbye, it is thoughtful of them to let us know they are going. (Coco and others did that and I don't think anyone took offense.) But no apologies or reasons are necessary and complaints that the site or its members are inadequate are not well-received, especially by those of us who are bereaved. Maybe because my shell has grown thick, I get annoyed by such comments, rather than feeling hurt: Hey! Don't blame us for being the ones who comment the most! The problem is not that widows ARE posting. It is that others are NOT posting.

    As far as why we are not getting more new members, I have no idea. I can only say that I stay here because I feel I am part of this community and I get a lot of comfort from being with my friends as I trudge up this hill.
    • CommentAuthorWolf
    • CommentTimeApr 29th 2017
    The comment is directed at me since I am the person who posted what it was about. I won't change anything but I will explain:

    It was never an available option to put up the ouch there because to do so would have created conflict that everyone would have intensely hated no matter how polite I was about it. To do nothing would be to leave Myrtle abandoned where she never said anything about who was older - she was being hugely supportive and was told she was mistaken and that she was a child in comparison. Her husband just passed weeks ago and that was as cruel a rebuff as it was unnecessary.

    Rather than create stress and conflict I came here and spoke to it obliquely and you can judge for yourself in the subsequent posts what that did. The comments in my second post on the topic weren't necessary at all, although I don't regret them. In my comments I spoke to the hardship facing someone who has been dominated much of their life to find an alternative reality. But I was also speaking to the framework of the choices we make, the truths within them, and the impact of those on the likely outcomes to a group who have fundamental involvement with exactly that issue.

    The probability that you would behave in such a manner is almost zero; however, if you do so I will still not challenge you on the main board because I know how much stress that creates for others and in that consideration, how almost nothing is worth such a thing. It is also against Joan's rules. I agree completely with the principle of coming to a person directly ordinarily. There is however a principle of greater good. It was possible to reach out without creating the conflict or hurting the first party. That's what I chose.

    I'm a better human being because of what you are teaching me about love. That's just true.
    • CommentAuthormyrtle*
    • CommentTimeApr 29th 2017 edited
    Oh dear. Wolf, all I can say is thank you. You are a gentleman and a scholar and you have always had my back.

    I am actually doing OK. The flashbacks to my husband's last days have gone away. I do not feel grief-stricken, but I am so spacey that it's obvious that something is not right. I don't seem to have fully processed what has happened. Sometimes it seems like I am living my previous single life and I wonder if I was really married for 26 years or if I only imagined it. Maybe it was just a dream. I think I'm afraid that if he could disappear so completely, I might, too. Has anyone had this experience?
    • CommentAuthorcassie*
    • CommentTimeApr 29th 2017 edited
    Yes Myrtle, I have.
    You are a good man, Wolf.
    • CommentAuthorcassie*
    • CommentTimeApr 29th 2017 edited
    Myrtle,it was good to read that you no longer have those dreadful flashbacks
    I hope Marche stays around too, I really like her!
    • CommentTimeApr 30th 2017 edited
    Marche, please stay. You are a valuable contributor, and it would be great loss to everyone if you left. Also, ironic to let someone, not as valued a contributor, to be the reason.
    • CommentAuthormyrtle*
    • CommentTimeApr 30th 2017 edited
    Yikes! I did not realize you intended to leave, marche, but looking back I realize that is what you meant by "break[ing] camp and marshalling my resources elsewhere." Please don't do that. I agree that your leaving would be a really incongruous result of all this.
    Ditto to what Myrtle and Mary75 said!
    Thank you all for your encouragement that I not leave. I have mulled over this situation for the past several days. There are some things that I would like to say.

    1. When the poster in question decided to leave the group, it was done (mind you, as I perceived it) with a few choice judgment bombs lobbed on the way out the door. These included inferences that younger and older spouses could not relate to each other, that some forms of dementia trump other forms of dementia in severity, that length of time dealing with the afflicted spouse determined degree of suffering, that widows and widowers were just hanging around visiting, and finally that we were all a bunch of sniveling, depressive morons for sticking around with the same old depressive crowd in the first place. It almost seemed like a new board game had been invented (Pick a card from the Chance pile. Oh, your husband has Pick’s Disease! Bummer. Advance 4 spaces instead of the usual 2)

    2. What I do not understand is why this seemed to not bother others. Finally and thankfully there was validation with Wolf’s post. Meanwhile, the outpouring of attention and fawning over the insulting histrionic seemed disingenuously placating.

    3. Consequently, the subject was obliquely referred to in a delicate way on our widow/widower discussion thread. This was mostly as a means of acknowledging what we were feeling (or so I thought). I was glad for the validation because one of the downsides of being a survivor is a skepticism of my own emotions.

    4. But then, the most curious thing happened: we observers became the unfeeling, gossiping cads who needed a serious scolding and finger-wagging lesson about playing nice together. There was no mention of the judgment bombs that were lobbed in the first place.

    Now for some of my opinions:
    A. Wolf was very astute in observing that letting this play out on the main board was a bad idea and why it would not have worked.

    B. Wolf was also very kind (chivalrous is a bit too medieval, but still an apt word) in pointing out that insulting myrtle (and the rest of us by inference) was rude.

    C. The grand exit announcement of the original thread bore no similarity to Coco’s leave taking. Coco was one of the most helpful, empathetic, gutsy, tireless, problem-solving people to ever post on this site. There were no inferred put-downs in her farewell only well wishes to us all, and a hint as to where she might be heading with the rest of her life. She cared too deeply about those of us who remained.

    D. Before I became a widow I did post on the widow/widower thread a few times until I quickly realized that I did not belong there. Since I am now on the other side, I can confidently say that widows and widowers share a wisdom that only comes of having seen through the whole course of the disease. Granted, the thread can be read by anyone, but posting should be only by the surviving spouses.

    So there. Get your wet noodles out and smack me, but know that I am as entitled to my opinions as __ is. I am not shooting from the hip, either, as I have been carefully writing this response for three days.

    As for staying. I truly don’t know. Life is short and if my experiences can be of benefit I am more than willing to share how I managed to make it through. BUT I have no time to waste being treated like a five-year-old and apologizing for someone else’s insensitive remarks.

    I do enjoy the camaraderie here and believe that some of us have an understanding of each other borne from our years-long profile of words. I still feel hesitant to let my unguarded sense of humor run free because perceptions vary and humor is the most misunderstood communication (IMO). Nevertheless, we understand each other in ways in which there are few opportunities in the real world. This is a highly rarified group by its very definition that gives us a commonality and sense of belonging.

    Now I am going to take a big breath, peel my heart off my sleeve and put it in a safer place. Fire away. Dialogue is the only way to understanding.
    • CommentAuthorWolf
    • CommentTimeMay 1st 2017
    I would like very much if you stayed Marsha.
    Yes, marche, don't let one rather situational thing from one forum-leaver cause you to leave, too. I wish you would stay. I don't want to twist anybody's arm if they really want to go--I fully support Coco's reasons for leaving, and she couldn't have phrased it better or more gracefully. But please don't leave for negative reasons, dear marche, unless it is really, really better for your well-being that you take a break from us.
    • CommentAuthormyrtle*
    • CommentTimeMay 1st 2017 edited
    Wolf and marche, This is rather embarrassing and I had hoped not to have to explain it but now that we are in the thick of this subject, it’s probably best that I do. It may also useful to show how vulnerable we all are and how easy it is to misunderstand each other.

    The third-party comment to which you both originally reacted did not really sting me. Since I had been on the receiving end of similar comments before, it was more like an irritation, and I just sighed. When I later read Wolf’s April 19 comment on this thread, I did not realize he was talking to me or what he was talking about. And then I read the follow-up comments on April 20. I did not fully understand them but it occurred to me that I was the person the two of you were talking about, and I was mortified. I could not figure out what I had said that was so bad. Nevertheless, I posted an apology to all whom I had offended. Later, I read Wolf’s “Robert Zimmerman” post and all of a sudden “light dawned on Marblehead” (as one of my grade-school teachers used to say). So, hoping that no one had read my apology, I went back and deleted it. But just in case anyone had seen it, I replaced it with a jokey comment saying, "Never mind." But still, I remembered what it had felt like when I thought you were talking about me. And so even after I knew I was not the subject, I felt sympathy.

    You are probably asking, “How could anyone be so dense?” Well, keep in mind that this exchange came right after I had vented about my husband’s struggles so I was kind of an emotional mess. I also seem to have some kind of deficit when it comes to written communication. Sometimes I take people too literally and misunderstand them (and not deliberately so). My own style is so direct that it takes some people aback. I realize that now, so sometimes when I write something here, I go back and edit it to insert huggy language so a reader will not think I am mad at them.

    That’s all. I don’t want to dwell on this and you don’t need to respond but I do want you to know that I appreciate your going to bat for me.