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!!!!!

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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!!!!!

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.

I think about you a lot, Mim. Seems like I'm travelling the road beside you. Sending you warm wishes for comfort and peace.

Young Adult fiction. The typical reader used to be a 13-year-old girl, but many adults read it, too, especially librarians.

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.

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.

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.

Nicky - you hit it. I just can't get into books right now no matter how much I want to read it.

loose life - we don't have a life anymore.

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.

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.

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.

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.

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.