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    • CommentAuthorRodstar43
    • CommentTimeOct 5th 2017 edited
     
    seems like very few actice members these days. Are most just too busy to give some time to tis site? I miss it, where are you. I am new still exploring my feelings. Don't give up on us. youir stories are our stories. please help!!!!!
    • CommentAuthorpaulc
    • CommentTimeOct 5th 2017
     
    I suspect that we are getting fewer new users so we have an attrition problem. Are there user stats to confirm/deny this hypothesis.
    • CommentAuthorbhv
    • CommentTimeOct 5th 2017
     
    I'm here Rodstar. I am having trouble talking about current situation. Still grieving for Lindylou and kycaregiver. Don't really know how to.describe that feeling. I never felt such a.connection with people I had.never physically met. It kind of makes the daily bullshit seem so trivial.

    I have been trying to look at.DH with more empathy. Trying to understand that his constant stalking is because he doesn't understand what is happening. It is so difficult to not get mad when I turn around and bump into him cause he snuck up behind me.

    Spent yesterday with a.plumber. Turns out I am not as handy as I hoped. The pressure Reducer I replaced a few weeks ago started leaking. I didn't get the connections straight enough. But it also had.a.defectve union and you can't buy the union separately. But it turned out well. Expensive, but good result. I had two other plumbing problems he also took.care of. We had another defective union for an antisiphon valve he was replacing so he had to solder that side in. Finally no leak there. Outside vlve to fill pool. I learned a lot from him. Very nice man.
    • CommentAuthorbhv
    • CommentTimeOct 5th 2017 edited
     
    Have been meaning to ask for suggestions when he refuses to go to bed without me. Ha ha, just had to edit this to say (for Wolf) I.am now talking about DH - NOT THE PLUMBER!
    DH keeps coming downstairs all angry and upset cause he doesn't have anything he is supposed to have up there and no one will help him. So two nights I went up with him amd lay there fuming waiting for him to go to sleep. Got up to do my stuff. A few minutes later there he is again.
    Another night I kept telling him to go to bed cause I was watching shows he doesn't like and I was not changing the channel and I was not going to bed so early. Finally after.the fifth or sixth time I slammed things around, locked up the house, turned out the lights and stomped up the stairs saying are you happy now? The smilenon his face.was the most pitiful thing I.have ever seen. But then he wanted to cuddle and make out! OMG
    I think I better shut up. Rodstar, you might be kicking yourself for asking.
    BTW, don't worry about typos. We've been able to figure out what you meant and know how difficult it is to type on a tablet.and you have to do it in constant pain with your non dominant hand. I keep hitting the period or the letter n instead of space. Very annoying but we can learn to cope.
    • CommentAuthorbhv
    • CommentTimeOct 5th 2017 edited
     
    I've been supporting my sister since she lost her job about 18 months ago. That's a long incredibly sad story. But I am the only one in the family in a.position to help her. I thought her twins were on their own when one twin had a mental breakdown and is now back in Florida with her Mom (my sister) so I am effectively supporting them both. I have been helping the other twin because the mentally ill one left her in such a precarious situation financially. We have been surprised because that twin and I didn't think we had anything in common, and it turns out we are amazingly alike and are now friends. Imagine that! So while I am feeling used and abused by my sister and one twin, I have found an amazing and valuable friendship with the other twin.
    Sister turns 60 in Nov and actually made an appointment with SSA and actually went to the appointment and actually qualifies for widows benefits and they are actually better than expected so that is a relief. She will no longer be
    totally dependent on me. But her roof leaked in the hurricane.....

    And, as if that is not enough stress.... my youngest and favorite brother was just diagnosed with a rare form of lymphoma. No cure. Some treatments. Watch and wait for now. He is young and they caught it early. He is my trustee in case something happens to me. He is 10 years younger. I helped raise him. This feels like a physical pain. I am 3000 miles away. Don't know if I can travel with DH. Don't really want to move back to NY, but need to be closer to brothers.Feeling powerless. Difficulty sleeping. Angry with Al Z Heimer for trapping me here. Have to find a solution. Lots of options. In some ways that makes it more difficult to choose.
    • CommentAuthorbhv
    • CommentTimeOct 5th 2017
     
    I just had to go back and edit that post because it somehow changed the word actually to "scrum". I mean, really? No one could be expected to make sense out of that!
    • CommentAuthorRodstar43
    • CommentTimeOct 5th 2017 edited
     
    bhv, I finally got my kindle to stop helping me to write. It sure is better just to look at only my mistakes.
    I am with my DW all day long but, yet I don't talk to her any more. I answer the same questions the same way but yet I don't talk any more.
    I can lay there beside her in a stew and out of no where she wants to kuddle as you say. putting up with a mixed up atitude does not led one to feel romatic. oh well. I could still function but, do I want to. I. use the old standby, "I've go a really bad headache" which is always true but, that did not used to stop me. I have a feeling all men are not addicts, even old foggies.
    Living under these conditions will challenge the bravest of hearts.
  1.  
    I'm still here. I read the posts every day. But for me it's been three years since Larry died, and I'm not sure discussing my issues would be very helpful to those still down in the trenches going hand-to-hand with Al Z. Heimer. For me, it's a time of still trying to recover my health--get some weight off, try to get back into better shape--and trying to get back to looking nice. I'm regaining my former interest in clothes, shoes, make-up, perfume...it's very gradual...Alzheimers makes you lose all interest in things like that. And of course, being fashionable costs money. Sigh. Singing in church every week, choir rehearsals on Tuesday nights, and my Irish classes on Fridays make me want to look a little nicer than the old Alzheimers Frump style. (Leggings, Uggs, long T-shirt, hoodie.) So I've re-organized my closet and tried to do a little better on outfits. One of my friends said that it's time to stop wearing black all the time, and I know she's right. But I'm still not ready for a lot of bright colors. And of course I'm in what I call my "dog clothes" a lot. Bandit and I walk and walk. And walk. I was just thinking that what I like to do best is sing, be outside in nature, and read. But I also do the Divine Office three times a day, using an online source and a Psalter. I'm not really interested in guys--you can't have the best twice--but I'd like to be a religious in a convent or monastery. So I've made my apartment into my "monastery." A pleasant place of peace and reflection. (I don't tell anybody that, of course, because they would think I was weird.) And I write (have just been assigned three book reviews to do for Historical Novels Review), play my harp, and draw with colored pencils a little bit. I like to watch murder mystery series on TV at night for an hour or two. But I worry a lot about how the folks on this forum are doing--both the ones who are bereaved and the ones who are still dealing with the caregiving. I swear to God, I don't know which is worse--struggling to take care of them, or struggling to recover from the caregiving afterwards. I try to post something helpful if I can, and if I don't have anything helpful to contribute, I just "lurk" and don't post. But I am here on the site every day.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 5th 2017
     
    I read but don't post much because my kitty forces me to use my kindle most of the time. I hate trying to write more than a short reply with it. She seems to have radar for when I turn the computer on and wants to sit on it. She has done some really weird things with it. I have no idea which keys are causing the things. Worst was when she flipped the screen so I had to turn my laptop sideways to read it. Found a way to switch it back. Someone suggested google it - gee why didn't I think of that since I google a lot. She somehow managed to hit control, Alt and the down arrow at the same time.

    The kitten: hb calls her a dog most of the time and our dogs name. I stopped correcting him. She is taking to the leash pretty good. I only can take her out when Dakota (siberian husky) is not out cause he likes to eat kittens! I have one of those hooks you hang plants on stuck in the yard and stick the leash over it which is about 15 feet long. She will just lay and watch the birds eating - neighbor and I have bird feeders out which mine is probably another 20 feet from as far as she can go. She loves to run to the end which causes her to flip, then chase the leash back as it retracts. She still tries to sleep with her face in my face and doesn't take it too easily when I push her off. When she wants to play she will walk around crying/talking. She talks like a Siamese does!

    HB's language is getting worse. Having a horrible time remembering words and what things are called. I am getting tired of pleasantly figuring out what he is trying to say. People in the park are noticing it too. I have a couple people who have had parents with AD asking why I don't place him. I tell him he is not bad enough for Medicaid where they say their mom or dad was placed and not as bad off as him. I am coming to the conclusion it probably is easier to place a parent, especially if they are alone, than placing your spouse.

    bhv - we learn and live. You tried with the water issues and did a good job trending in the unknown as far as I am concerned. But, you have learned more so if there is a next time, you will know. But sometimes it is less stressful to pay someone to do it. Sorry about your brother. How hard would it be to sell you home if you decided to move? Do homes sell fast around there? If you decide, probably soon would be better. You might have to medicate him some to keep him calm and hire movers to move you. As for him not sleeping, does he take anything for sleep? If not, have you tried melatonin? Might ask his doctor for something to help him sleep. I consider moving to where it is not so cold during the winter and hot during the summer but that would mean the rainy west side of the Cascades and finding new doctors - mostly for me since if I moved it would be where there is a VA clinic. Once he is placed, there will be no moving.

    Thank goodness my husband could not figure out about sex early on. Plus, ER started when he was around 50. I did get him to ask the doctor who gave him viagra which didn't work and he refused to go back. As for cuddling we haven't in so many years. Part of the blame is I didn't want to for fear he would want sex even though he couldn't perform, the other he never was a cuddly person. He does give me a kiss when he leaves for day care but that is the extent of our kissing.
    • CommentAuthorbhv
    • CommentTimeOct 5th 2017
     
    Elizabeth, please.keep lurking. I am always so grateful when you chime in with your particular, invaluable expertise. Even when it is not my question I get something from your insights.
    I love hearing about Bandit. And am glad for the progress you are making getting yourself back. I use colors to help manage or reinforce my emotions for the day. If I am angry I wear my black tshirt. If I feel belligerant I will wear RED. Blue is for feeling just blue, sometimes calm. Pink if I am going out with Patty to try to make myself feel.cheerful.

    I've been working for the last 18 months clean up the property, fix broken things, improve curb appeal, thinking I will have to sell sooner rather than later. Right now it's a good time to sell here. A bit more work to do though.

    My husband hasn't had any nouns in his sentences for quite some time. Now I frequently can't even find a clue. So he gets.upset and tells me how stupid I am fr not understanding what he means. We meet on the patio for a."beer" every afternoon and we used to go over our day. Fr months now I don't talk any more. He used to throw a temper tantrum if I wouldn't talk. Now he just.sits there and we both stare into space. Then he asks me what I am thinking. Really, he doesn't want to know about that. I just ask him what he is thinking. And it keeps going around like that.

    Lately when I am near people who speak in complete sentences I find myself unable to stop talking.and talking fast! I.watch.and marvel at.myself like an out of body experience and still can't get myself to.shut up. A person who.actually understands english is.such a novel.exerience.
    • CommentAuthorRona
    • CommentTimeOct 5th 2017
     
    I find I post in spurts usually when there is a change or when I am struggling with what to do. Also always try to welcome new people and to respond when I think it will help. I check in daily and follow all new posts but at times just want to be away from the dementia world.

    I try very hard to make every day a good one. not easy especially on days when I visit it usually then takes me awhile to recover, to put the dementia world in it's place. There is no quality of life left just fear and anxiety, the inability to recognize or understand anything, to eat on her own to recognize when she has to use the washroom, to communicate just nothing. I just want it to end for both our sakes but then feel guilty for such thoughts. Having said that she still recognizes me when I come I don't think who I actually am but knows she loves me and feels safe with me although always says she is afraid. So there is still a spark in there. A very difficult journey no wonder at times we just want to run away but we won't we can't they still need us.
  2.  
    I was surprised and profoundly sad when I realized how fearful my fearless husband had become. I cannot imagine the confusion in his head (although I witnessed the outward manifestations) and I think that at times he craved just being held and comforted and stroked like a hurt child. As vision becomes a problem and they cannot understand speech, I do think they still retain the comfort of tactile stimulation. I rubbed his arms and head a lot.

    Everyone is different, of course, and I had my share of melt-downs and frustrations with the bizarre behavior but it is a loving kindness to try to comfort the sick. Because they are very, very sick.

    And comfort yourselves, too. My heart breaks for you as I read these posts. I know in my mind that I walked this road but it seems like that was a person I knew at one time and not me.
  3.  
    For some reason, I'm still drawn to this website every day
    but I don't feel like I have anything to offer.

    Yesterday, I was visiting the Main Cafeteria where I'm staying now and I noticed a lady being pushed along in a wheel chair. She looked like she was about the same old age as me. She was holding a little stuffed dog in her lap and was hugging and petting it and seemed to be very fond of it.

    This brought back to me, memories of when I had my Dear Helen in the Woods Care Home. A few of the dementia patients like Helen would always have a little doll with them and it gave me the idea that Helen might like one and maybe it would have a calming effect upon her somewhat unpredictable attitude.

    At home, in a spare bedroom, Helen had a huge collection of stuffed toy dolls lying on the bed, So I chose one of her favorites .... A cute little monkey .... and brought it down to her. When I placed it in her hands. She looked it over and then tried to eat it.

    After a few more tries to get her acquainted with the little monkey doll, we just let it sit on her night stand where it served as a cute decoration. A few days later, it was missing and nobody knew what happened to it but the next day, we noticed it in the arms of Mary ...... It was easy to see that Mary had bonded with that little monkey and everywhere that Mary went, that little monkey was sure to go.

    We were all so happy to see Mary so happy, and I think the little monkey was happy too.
    • CommentAuthormyrtle*
    • CommentTimeOct 7th 2017 edited
     
    Rodstar43, Yes, we do have a problem with low participation. This has been evident for few years now. I think this is due to attrition, as paulc suggests, as well as a failure to attract new members. (Paulc - who are you asking to supply user stats to confirm or deny your hypothesis? As you know, we are on autopilot here and none of us has access to raw data.) Anyhow, I don't think it takes a statistician to see that the problem is attrition combined with few new members. (Some people have even quit, complaining about members who continue to post after their spouse dies!) Our fate is like that of the Elks or Kiwanis, or Freemasons. But it should be the opposite, for Alzheimer's Disease is not going away; in fact, with the Boomers, it should be getting a new lease on life. (Or should I say, death?) Even though I'm now a widow, I still read and post but I try to stick to topics that might interest those those who are still in the trenches, rather than getting lost in the weeds of widowhood.
    • CommentAuthorpaulc
    • CommentTimeOct 9th 2017
     
    myrtle, I'm not asking anyone to draw up stats. Just saying that without stats we can't be sure. But I think you are right about the problem.

    While dementia is getting more prevalent, this site isn't being promoted anywhere.
  4.  
    We've been keeping the message boards active long after Joan has no longer been able to manage the site. Before Sid died, she was much more pro-active in promoting the site and advocating for Alzheimer spouses. I think she lost her impetus with Sid's death and her own poor health. She has absolutely been through the wars.
  5.  
    I believe at least five new folks have come onboard in recent weeks -- rodstar, wally, mickey, yankee, and thomp. My take on why there are fewer posts now is that back in much earlier days we had some talkative folks like sunshyne reporting on hopeful new AD treatments like coconut oil (and debunking others), we had poop queen divvi plowing new ground on dealing with incontinence, we had others discovering sundowning and behavior differences between early onset and vascular dementia from late onset, others discovering and sharing the value of thereaupetic fibbing, etc. But nowadays all that helpful information is already available in the archives for new members to read and learn from, so there is less chatter about such. I can also recall spirited discussions about philosophical issues like differences between male and female caregivers and things like "If alzheimers hadn't come along, what would I be doing now?" I also think Joan's absence as a drum beater for the site is being felt. One thing I'm not seeing these days is advocacy of a viewpoint that helped me greatly -- a conviction that there was a life AFTER alzheimer's to look forward to when the long journey was ended. That conviction sustained me during the lonely and frustratinng times.
    • CommentAuthorbhv
    • CommentTimeOct 9th 2017 edited
     
    Gourdchipper --- Hi. This is just what I have been thinking. I just love Divvi's stories still.and I need them because I may have become the new poop queen. I use the search tab frequently to answer questions. So then what to post? All this year someone starts a new thread each month and we can talk about stuff that happens even if it is not a question. Can be happy or sad. Doesn't matter.
    Then Lindylou had the idea for the cottage on the lake as a place to.escape. Before that Wolf took.us.a.few times to an Italian Villa. But I felt more comfy at the cottage. So many evenings after about 15 hours of nonsense, poop, threats and other temper tantrums, and then he won't go to bed without me, I just retreated to the cottage so I wouldn't blow my gourd (lol).
    I feel like we have a band of real friends here. I find myself telling my friend Patty, well my friend Charlotte does this. Or my friend Myrtle made her shed into the most wonderful retreat.
    I have a little mental resistance to the "conviction" of an AFTER. My Aunt Connie was the only competent person in her family and two of my Uncles were relying on her to manage their affairs. Well she died of a heartattack almst to the day when both uncles became unable to manage themselves any longer. Then it fell to my noncompoop cousins who stole everything. So I am afraid there may be no AFTER. And wouldn't that just be the worst cosmic joke of them all???
    But then Wolf, or Elizabeth, or Mary, or George or Ol Don, or you Gourdchipper and others with an asterisk by their names will post something.... And when I see their names I sometimes sigh audibly thinking maybe, JUST MAYBE, there might be an AFTER for me too.
    Wolf has recently been exploring what his AFTER is turning out to be. I am so glad he writes about this because we will never go back to what we were BEFORE. This is too traumatic. So AFTER we have to find a new self. Well, since I fear there might be no AFTER, I am trying to find a self that can exist DURING. I have had it with just putting myself on hold. But this is difficult remaking yourself. Where to go, what to do.
    I thought I had a brilliant idea to go up the mountain and go apple picking. Now I don't know. They charge.3 times per pound as in the grocery store!!! For me to pick them myself??? Maybe I will.go.for a.drive up there anyway. I've been in CA for 35 years now. should do some sightseeing.
  6.  
    bhv, I'm thinking that a happy AFTER isn't something that's going to just miraculously appear when the time comes -- I think we need to help it along by starting to work the problem now, and that kind of forward-looking activity can serve to make the NOW seem less awful. I'll paste in a couple of excerpts from stuff I posted eight or nine years ago, for whatever they're worth.

    "The engineer in me understands how Frances’s AD journey must ultimately play out in the end, and my engineer is already thinking in terms of problem-solving the question of “where do we go from there?” – maybe an analogy would be the football coach who puts a team loss behind him and instead focuses on preparing for the next game. As I’ve confided on another thread, I’m already thinking in terms of my life “after” -- about which I feel no guilt: Frances and I had told each other years ago that we’d expect the other party to find a new partner if one or the other of us died. I’m not sure remarriage would be the right answer or even doable at my age, but I do know that I wouldn’t want to live out my remaining years alone, so I’m already beginning to “work the problem” of lining up a partner for “AFTER”. Someone, I think it was Starling, said that she believed that the caregivers who survive this journey best are those who are able to think in terms of “AFTER” – and I expect she’s right."

    "Despite loving my wife dearly for all the wonderful history we share, I have, in effect, been able to “write her off” insofar as being a very significant positive factor in any future enjoyment and happiness that may come my way. I now love her for what was – not what is. I find no pleasure (satisfaction maybe, but not pleasure) in the daily grind and unpleasantness and sameness and loneliness of caring for her -- but I do it because it’s the right and decent thing to do, and I couldn’t live with myself if I did less than this. I’m not afraid or ashamed to say that I’ll be glad when this journey is over – for her sake and mine – because I don’t expect she’s enjoying this journey any more than I."

    "-- on balance, I don’t guess I have too many complaints, and I don’t find myself railing at life for treating us unfairly – we’ve had a good ride, and it’s just an unfortunate roll of the dice that Frances happened to have the wrong genes or drink the wrong water or catch the wrong germs or whatever it is that brought on her AD. She’s been a real trooper through it all, and perhaps it’s humbled me some and made me a stronger person, having to deal with it. And I don’t consider that my life is over yet."

    Okay, end of quotes. So how has my AFTER actually worked out? Well, not perfectly, but not too badly for an old codger approaching 90 in a few months. Re-marriage to a dear friend only seven months after the death of my DW was entered into with a recognition of "pre-existing conditions" that have, in fact, proven to have had their thornier aspects, placing me now, seven years later, in something of a caregiving mode again, but we actually had a few pretty good years with a long RV trip out west, volunteering for an organization that provided respite time for AD caregivers, hosting reunions of family and co-workers, etc. And on a personal level I've still had time to pursue passions like writing and publishing a family memoir, writing a regular column for a retirees newsletter, and helping establish an archive at a local university preserving memories of the great company where I spent a very enjoyable career. And I'm not done yet!
    • CommentAuthormyrtle*
    • CommentTimeOct 9th 2017 edited
     
    One remedy for this is to keep posting. If you go to on this site and have a thought, just spit it out! I found that in my most desperate moments, when I felt most isolated and lonely, just reading a comment lifted my spirits. For example, some of you may remember Elizabeth*'s trip to Dublin after her husband died. I was in the midst of a horrible period with my husband, but the details of her travels helped me to survive that ordeal. Likewise, Charlotte's stories about maintaining the RV and her daily travails with her husband and dog and kitten (Charlotte, what on Earth were you thinking of when you got a kitten?) make me feel connected to others. And Wolf and Cassie, are you still here? I will try to do my share but it's kind of hard to type on a tablet right now with a fuzzy orange cat on my lap.
    .
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 9th 2017
     
    Myrtle, I have more than once wondered why. If I had known hb would not take the dog for a walks which was my hope, I would never had gotten her. I much prefer cats. The only part I don't like is the litter cleaning! She is very talkative. If I did not know any better I would think she was a Siamese! When she wants to play or go outside she sits and tells me until I do. For outside I have to make sure Dakota next door is not out. Thank goodness she has taken to the leash well. I have even taken her for a couple walks down the road behind us! She is perfectly happy laying in the grass watching the birds. Between my birdfeeder and the neighbors, there are lots of birds - finches and doves mostly, sometimes the quail show up. I have a pot with cacti in it. When we first got her she stuck her nose in one getting stuck. She took her paw batting it until it broke off falling to the ground!! I also question my thinking when she wants to lay on my neck with her nose on my nose or on my ear - neither of which I can stand. But, I love when she lays on me purring. My last cat was a year old when she adopted us, took her a year to purr but it was really soft. Took about 5 years before she got loud.
    • CommentAuthorbhv
    • CommentTimeOct 9th 2017
     
    Thanks Gourdchipper. You're an engineer too. That's why I smile whenever I see your name too. I remember some of those quotes you posted. I wasnt here 8-9 years.ago but have read a lot of your stuff in my research here. I can relate because I don't feel all lovey dovey like some. But I stay.because it is the right and decent thing to do and I believe he is better with me as his advocate. Glad you chimed in. And glad you.are.doing pretty well all things considered.
    • CommentAuthorRodstar43
    • CommentTimeOct 10th 2017
     
    I sure like gourdchippers attitude. Because of some similarities (7 years aerospace Engineer) it feels like I`m going down the same trail. I'm not mad at my current situation, it is what it is. I have only been going down this AD trail 7 years and we are at end of stage 5. Now, is the cancer going to get her first or the AD. Either way there are things to do, places to go, friendsips to make etc. I am looking forward.
    I have had a good ride, It will be good to change the ride. thanks gourdchipper!!!!!
  7.  
    My comments about the trip to Dublin are on page 51 of the Widows/Widowers thread. I've just been re-reading some of our old posts, and would really recommend to the new people that they browse around even going back several years. I've just spent a half-hour or so re-reading some of the old posts--wow--people were really helping each other. I never, never, never could have gotten through it without the help of this group--even now, some of those posts are so inspiring. Makes me humble...I just hope I can help others the way others have helped me.
    • CommentAuthorbobbie
    • CommentTimeOct 10th 2017
     
    These posts are my companion as I drink that first cup of coffee. My yellow cat is sitting beside me, trying to lay on the mouse and my hand. I know it is not misery loves
    company. But it helps me knowing thee are others out there, doing the same thing I am doing. And maybe sharing an idea that will help me.
    Please keep posting.
    • CommentAuthorMim
    • CommentTimeOct 16th 2017
     
    "We are Family" !! Just popped into my head.....sorry :)
    •  
      CommentAuthormary75*
    • CommentTimeOct 17th 2017 edited
     
    I think about you a lot, Mim. Seems like I'm travelling the road beside you. Sending you warm wishes for comfort and peace.
    • CommentAuthorRodstar43
    • CommentTimeOct 17th 2017
     
    mary75, what is ya fiction?
    •  
      CommentAuthormary75*
    • CommentTimeOct 17th 2017 edited
     
    Young Adult fiction. The typical reader used to be a 13-year-old girl, but many adults read it, too, especially librarians.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 17th 2017
     
    I enjoy reading youth fiction.
    • CommentAuthorRodstar43
    • CommentTimeOct 17th 2017
     
    Guess my reading (lost that too) used to be: historical novels-pre historical, american, middle east ect, adventure, thrillers, war, medical thrillers, forenic true crime, sci-fi, animal fiction, biographies, auto-biagraphies, westerns, Indian historical, ice age, Christian fiction, and so on. My most recent, local history, lastly; brother-in-law' career biography.
    I have read maybe 4 books in last year compared to 3 or 4 a month. Why? Maybe just lack of motivation. As I look back over last 7 years I can see a drop in reading as DW's AD advanced.
    Oh, to be "normal" again.
  8.  
    I think Mary's books open a window on a world that many younger people wouldn't recognize. (Well, I don't either, really--I was born in 1949.) But her books--at least the ones that I have read: Snow Apples and Take a Chance on Love, portray young adults during the World War II years. For myself, never having visited the western coast of Canada, they serve as travelogues, too. I think any woman born before the days of the birth control pill will empathize with some of the situations found in Snow Apples. And I've thought right along that I'd like to see Mary take the characters in Take a Chance on Love and give each one an individual book.
    • CommentAuthormyrtle*
    • CommentTimeOct 17th 2017
     
    Rodstar, I was also a voracious reader but stopped reading books as my husband got worse. Now I read just a little. Don't know why.
    • CommentAuthorRodstar43
    • CommentTimeOct 18th 2017
     
    Been thinking about my lack of reading comments. Why? Is it living with chronic pain or AD? Or both? Maybe the long term effects of chonic pain which causes lack of motivation. The "why bother" syndrome. However, in my case maybe both problems. Would reading reverse my problems, I just do not think so. Myrtle, maybe you can rationalize the reading problem.
    • CommentAuthorNicky
    • CommentTimeOct 19th 2017
     
    Just want to share my thoughts about the lack of interest in reading. I've never been an avid reader, but through the years I've enjoyed reading. I've noticed that when something in my life was not going well, when the peacefulness was gone, I've had trouble getting absorbed in a book. I just couldn't find a book that kept my interest, not even from the authors I liked. I just couldn't relax enough & "turn off" my brain & forget what was happening to allow myself to get lost in the book. One thing that has worked for me since my husband became sick is watching TV in the evening. The TV has been a good distraction & during the very difficult times has been the only distraction that would allow me to get lost & forget my problems, even if only for 5 minutes at a time - anything that would give me a break from the constant "blah" feeling. It's allowed me to get interested in what I'm watching, whether a movie, drama or sitcom. I've not become a couch potato, because I'm busy during the day, but after supper when everything seems to slow down & become quiet, the TV allows me to unwind & gives me the distraction I need to feel a bit more "normal". With the PVR & Netflix, I usually always have something I like to watch. I've always enjoyed relaxing after supper while watching TV, so I'm glad that is still working for me - I hate to admit it, but without the TV I'd be lost in the evenings...... especially since reading does not work for me right now.
    • CommentAuthorRodstar43
    • CommentTimeOct 19th 2017
     
    Even the TV is getting tiresome. I wish more folks were active on this site.. Like some TV shows some stores deserve repeating. I miss the family insights and stories.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 19th 2017
     
    Nicky - you hit it. I just can't get into books right now no matter how much I want to read it.
    • CommentAuthorRodstar43
    • CommentTimeOct 20th 2017
     
    I wonder if non spouse AD caregivers loose all these things? My list is getting longer.

    Fun
    Joy
    reading
    optimism
    music
    hobbies
    Love
    Sex

    what else?
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 21st 2017
     
    loose life - we don't have a life anymore.
    • CommentAuthorRodstar43
    • CommentTimeOct 26th 2017
     
    Charlotte, is it me, am I writing way to off beat? Seems like there are less writers. Is mos happy now or things that bad? You havee been onn here a long time, seen them come and go. Has there been so few like now before?
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 26th 2017
     
    We have had a change, no doubt. It was dropping as ones lost their spouses and had to get away from the AD world. Many have stayed and probably post more on the thread for those who have lost their spouse. then there are those who have placed their spouse so are not in the day to day 'thick of things' and probably post mostly on the thread for those who have placed. After Joan's (who started this site) husband died and she got hit with medical problems, the blogs stopped and participation slowed down to. The biggest problem is not enough new members to keep it going. I am glad to see you and other new ones now participating. We need that to be going on to keep new ones. My belief is that people would introduce themselves then we never hear from them again because little was going on. I am hoping that changes.
  9.  
    I am new to this website (yesterday) but I can already say I have found inspiration in reading some of the posts, just in knowing that what I'm feeling and thinking doesn't make me a horrible person. I was just lucky enough to stumble upon this website while doing some additional internet research on vascular dementia, but I am certainly glad that I did.

    I hope to get know all of you better and Thanks for sharing!
    • CommentAuthorbhv
    • CommentTimeOct 26th 2017
     
    Seems like now we have several newbies who are staying like Rodstar, Bobbie, easttexaskitten, nicky - she posted a.great joke yesterday. When we are new it is difficult to know what to say. We can search to find answers tomost questions. This year someone.starts.a.new thread for each month and that is usually just mundane stuff that is going on. And we can have fun at the "cottage on the lake". Even if we have no new questions.
  10.  
    bhv - you are correct. Being new to the site does make it difficult to know what to say, and it feels a bit uncomfortable to just jump into previous conversations between you guys that are already familiar with one another. But on the other hand, in just reading the posts, I have seen so many comments made by some of you that are exact comments and/or feelings that I have made/had since beginning this journey.

    And as a newbie, I will say that most of my questions or things I had doubts about have been answered by past discussions, but I look forward to future posts as well if for nothing more than support from people that are actually living it and know first hand the toll it takes on us.

    I have tried talking to my Mom but she thinks the answers are all simple and we just end up arguing about it. Thankful I found all of ya'll.
  11.  
    Welcome, eastexaskitten69. My husband died on Sept. 2, 2014, but I still drop by daily and read all the posts. I try to be helpful if I can, even though I'm not in the trenches anymore. It is a long journey, with people here able to help with the recovery process as well as the difficulties when the spouse is still alive.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 27th 2017
     
    even if you have read it in old post, often we still need to discuss it or vent. It's ok to repeat!
    • CommentAuthormyrtle*
    • CommentTimeOct 27th 2017 edited
     
    I agree with Charlotte. Just because a topic was discussed or a question was answered in the past does not mean we should not bring it up again. One of the benefits we get from this site is the opportunity to express ourselves and to hear others say what they are experiencing.

    BTW, if you find an old discussion that you think might be helpful you can renew it (or "take it to the top") just by posting a comment on it and it will jump to the top of the list of discussions.
    • CommentAuthorRodstar43
    • CommentTimeNov 1st 2017
     
    please, please bring a "old" good topic or story again. Cut, copy, past or what ever you do try to brng a topic that the current group would enjoy. I will be waiting.
    • CommentAuthorLindylou*
    • CommentTimeNov 2nd 2017
     
    Rodstar43, One of the things I did when I was newish to this page was to read backwards from when I started - then I thought I am getting to know people backwards and although that is not a bad thing I decided to read from the start of the message board and work forward in time. I have to confess I never did read a huge chunk of the middle, which, knowing this message board must be equally full of great information, much of which could be pulled "to the top" if you think it helpful for others or yourself. Also Joan's blogs are really interesting reading too and are designed to be helpful as you watch her journey.

    Me, right now, I think what can I even write? Except for one thing. I keep wondering, when did it all start? This journey. When did our gladness of having found each other veer off into this wilderness of dementia? Half of our time together ended up spent in this wilderness. If you give me a day or so I might start a message on this topic.
  12.  
    I found that I enjoyed my marriage for a long time after I suspected...and then knew...that we'd be going down Dementia Road together. In a way, it made everything more intense--I made the most of a happy relationship--because I knew it wasn't going to last forever.(He was 25 years older than I, and with that age difference it was always going to be something. I knew he would most likely go first, and I made a commitment right from the get-go to deal with his final illness whatever it might be. I hoped it wouldn't be Alzheimers, because that was the one thing I thought I couldn't handle. ) But I will say that those first years of our relationship and marriage were some of the happiest years of my life. Not everybody is fortunate enough to get a blessing and a gift like that. I was just sitting in the living room of the church rectory last night, having pizza with the choir after we sang for All Saints--and feeling warm and fuzzy, because, of course, that room was where I first met Larry. We were talking about him--so nice to be with people who knew us way back when. They were talking about him being tall and handsome, and always looking sharp. Yes, indeed. So you see, group, it isn't just me (blinded by love) who says that! lol