Hello, anyone who still checks this site. I think unfortunately it won't be long before we won't be meeting here anymore at Joan's. Where would be the best place to keep looking for old friends' comments and updates? And if anyone sees this who is in touch with Joan, could you let us know if possible how she is doing and also give us some notice if the site is going to be taken down?
I always look to Charlotte to let us know what's going on. I have a few email addresses and can add more at your request. However, I need to warn everyone that I'm approaching 90, and perhaps a younger person would be better.
At alzconnected.org there are a number of message boards. The one for spouses and caregivers is somewhat like this group. There are more people there and sometimes there’s a judgmental person or someone takes offense easily. But for the most part they are nice and helpful like this group. A number of us joined there last time we thought this board would disappear. Some of us used the same name. We even started a sub group.
For awhile I was checking on both sites. But gradually just forgot to check the other one. This group is so much like a small manageable family for me.
Maybe we should look into a private Facebook group.
Thanks, Myrtle. And if everybody decides to go to Facebook, let me know. I'm not on it--tried it for a while and hated it--but I could get back on if need be.
Elizabeth, I have the same feelings about Facebook. I don't know why it makse me uncomfortable, but it does. I also have negative feelings buying something on line. I make a mistake, try to undo it, am unsuccessful and end up with the wrong colour in a size too small. No returns, of course.
I too am a non-facebook person. Only stay on it because that's what my hairdresser uses as a website. I would not be comfortable posting discussions from this board on Facebook. I never have figured out who sees what so never post anything. I read something recently that people scream about privacy and government in their lives yet on social media they post the most private happenings in their life and get mad if no one reads it :) One of my art groups went from discussion list to Facebook - and it just doesn't work, I guess maybe most of us are older and not comfortable putting our private life out there.
Changing the subject, has anyone done any investigation into using CBD oil for AZ patients? I can't give you any specific information but there are many pages online that go into depth with the different problems it works for and "preventing" AZ is one of them. I was thinking more along the lines of keeping them on a even keel. Smooth out some of those roller coaster days.
I know several people who use it for pain with good results, and for nerve pain. After reading the positive input in AARP this month, I talked to my doctor and she said she has a number of patients who use it and gave me the OK to try it and see if it would help with my insomnia. I've found the amount you have to take for a sedating effect would make it way too expensive for me to use it. But when I read all the information about people who use it for anxiety and have good results, plus my sister has been taking it for awhile as she was having problems with anxiety, high blood pressure, general feelings of being over anxious. She said it didn't happen overnight but one day she realized how good she was feeling and started checking and her blood pressure was much lower, her heart rate lower etc. I think she only uses it twice a week now.
I see the doctor again in November, as will dh, for lab work. Think I'll talk to her about it. It isn't cheap, but they might not have to take a large dose to achieve ---I don't know what. Less anxiety? Right now dh is in his anger mood. He can go from zero to raging inferno in a nano second without me even knowing what I did or said. Fortunately he isn't physical, and he usually forgets it before long. However, my life would be a lot better if I didn't have to deal with this. Oh, I mentioned to my granddaughter last week that dealing with him on something was like playing "Who's on First" She had no idea what I was talking about so sent her a youtube video and when I watched it I thought that was a very good comparison of our day, LOL.
The boards have been quiet. If people are looking for me, you might want to check my book blog, which I'm re-starting after a fairly long hiatus. (Yeah--wonder why.) There isn't much there yet except for a pretty masthead and an out-of-date photo, but I'm getting my act together, and you'll be able to find me and communicate with me there, even if Joan's site goes down. Of course the discussions will be about books, not Alzheimers! lol I use an earlier version of my name, so don't mind posting it here. elizabethknowles.net That should get you there.
Elizabeth, have you read the Goldfinch? I had lunch with girlfriends yesterday and was trying to describe it. For me it is about PTSD although it’s not really “about” that. It’s about surviving I guess. I tried describing the story line, but to me, the story line is almost irrelevant. It’s the emotions throughout that are the point.
The movie reviews were awful. Even by people who loved the book. (My guess is they do not have PTSD experience.) So I almost didn’t go. Boy am I glad I went. I want Pippa’s bedroom at Hobie’s house. Several times a week I reach for the book, still on my shelf, because I’m missing Hobie’s house, and shop and Hobie’s way of saying so much with so few words. I went to the movie by myself. Couldn’t bear to share it. Held Jim’s necklace the whole time. The movie gave me the same feeling I had while reading the book. It doesn’t solve anything. But it is nice to be with characters who get it. Favorite scene: when Boris tells Theo “the Goldfinch is safe.” SAFE. I’d like to feel safe again. Maybe someday.
Just ordered Goldfinch (the paperback) on my Amazon Prime--it will arrive tomorrow. Thanks, bhv. I see that I can see the movie on my Amazon Prime video--should I read the book first, or watch the movie first?
Regarding CBD oil. Finding a good quality is the big problem. Also, they say there has to be a small amount of THC in it to work. Unless you live in a state that has legalized marijuana you might have trouble getting one. The best is word of mouth - if you know someone that uses it with good results, then try what they use. I have tried it in both a creme and oral oil. The creme worked well but then the pot store stopped selling that brand. Wasn't about to pay $50+ for a brand not knowing how it works. I tried CBD oil for both me and the dog but it was a cheaper brand that I see no positive results. I wanted it for pain. The dog seems to break out with the skin condition more after visiting Art so thought it might help.
I just checked Joan's FB page. She hasn't posted anything that I can see (not a friend so can't see every thing) since Aug 29th when she was recovering from something serious in August.
I don't come here often because it was hard to concentrate on Wolf's writings. I actually could today! Aw the journey! Since I am still a 'living widow' my journey is different, but it still involves grief and trying to move forward while he still lives. My neighbors just pulled out for a week. Every time they take off I cry because of the trips we will never do again. Any trips will be just me.
Elizabeth - read the book first! They say you can enjoy the movie on its own, and that’s probably true, but for me, it was kind of like if you listen to a recording of an orchestra and then go see them in person, bringing the music to life. The book also explains much more about Pippa and music. You play harp and piano. You will love the way it talks about the music! Oh yes, I think I need to read the book again real soon.
when it comes to books made into movies I usually will favor the book. The movies can't put all the thoughts and feelings into it like a book has. My first was the book "Love Story' which I loved. I was so disappointed in the movie.
DH and I have recently come up against something I haven't heard much about, maybe because of the time period involved. We are about halfway through the seventeenth year since diagnosis, and now it seems that both of us are just running out of steam. All the ways there are to cope with this situation (IMHO) just quit working after this length of time. And we're both older and in increasingly poor health, and so very sad that it's getting harder to get out of bed and start another day of this. DH is still pretty much aware of every little decline, and even his perpetual optimism is gone now. We're both trying to cope with the idea that it only gets worse (and worse, and worse) from here.
I thought about counseling, but most of the counselors I've seen have absolutely no idea what this is like. I'm so overwhelmed now that if they started to come up with the usual platitudes, I think I'd smack them with something. Their first thought is placement, like that solves every problem and there shouldn't be any emotional fallout from your spouse not coming home again, ever. DH has been in enough nursing homes now for respite, and I have seen so much bad care there, that I fear for his life when he is finally placed. Counselors also recommend antidepressants, which I can't take. I wish I could! But I have such a bad reaction to them that a psychiatrist finally told me I should never take them again, because it would just be too dangerous.
It seems like there should be a statute of limitations on this terrible, terrible disease. While I am aware that there is some "normal life" going on in the outside world, here in our home it just seems like a never-ending nightmare. With no possible improvement in the situation, and no end to it, it's hard to gird ourselves up to continue.
When you have a job that is sucking the life out of you, you can quit. When you are in a marriage that is making you very unhappy, you can get a divorce. When you have a friend or a family member who has hurt you deeply, you can choose not to be around that person. But this situation we're in as spouses of people with dementia... There's no way to get out of this.
I guess this is my "journey somewhere else". I just wish that when it started I had booked my return passage. Right now I feel like I'm at the equivalent point of the person who said they found themselves laying in a fetal position on the floor of the basement and screaming. You feel like there's no lower that you can possibly go, but even while you are laying there, you know you are wrong. Lower is yet to come.
I really fear losing the support from these message boards. What is unspeakable to the rest of the world is part of our everyday lives. Without being able to share what is happening with someone who understands--really, truly understands--this would be unendurable.
Jan, have you considered moving into a facility like Marsh and Joan were in? You would have people nearby if you needed help, even if he needs to move into placement he would be right there where you could still be there for him but have some time to yourself. I don't know your finances but may be something to consider. I know I was exhausted after 11 years. Your husband reminds me of my FIL - very slow progression, 25 years for him. He lived 9 years after my MIL died from a heart attack.
I am going to look into yahoo groups. You can make them closed, have different subject threads - unlike FB where you loose post in the mix of others.
Jan K, sounds like you are on the same path we are. I've accepted this will be my life but would be nice to quit when you get enough. I understand all those feelings. I'm preparing for winter too - by myself :) It just continues to get worse. I'm going to lunch and a movie Thursday with a friend, Downtown Abby. I know nothing about it but am so excited to get out and lose myself in something. Think the last movie I saw was Avatar.
We have friends who are on a trip we took about 15 years ago and when I mentioned it to him, he has no memories of any of our life. I talked to my sister who was widowed fairly young and asked if she had those feelings. all the memories you make with your husband, then when he can no longer share them, you are left alone. She said that's exactly how she feels, still every day, even though she has now remarried. Told dh it made me feel lonely that all those trips we took and fun we had - that no one but us shared - and now I'm the only one with the memories.
My friend who moved to AR - her dh is on his death bed with AZ. He was in a place just 5 minutes away and she went every day and had lunch and spent time with him. But he got so combative, kicked the nurses, they made him leave and he is now in a place 2 hours away. The only way she can see him is if someone from her church takes her. But she said he doesn't recognize her anymore anyway. Hard to believe that sweet, gentle man is the same one. So I have three close friends, all about the same age in the same boat. One has Lewes Bodies (?) and is getting worse very fast. The other is another AZ. I told dh today I am so glad we got our estate papers all completed because one day, something is going to happen to one of us. He says yes, but has no idea what I'm talking about. It's get up every day, put one foot in front of the other and try and make it through the day. There is a term for women who are divorced and then the ex-husband dies, I think it's a Grass Widow?? There should be a term for those of us who are essentially widows, but still married. I'll take care of him as long as I can but this sure wasn't the way I expected to spend my golden years.
My husband always told people he had Alzheimer's Disease, laughed about, as a way to explain why he repeated things or forgot. I thought going through this with so many other family members he knew the future. He may have been was not concentrating on until I went to place him - then his attitude changed.
At the movie today, I caught myself a few times wanting to lean over and make a comment about it like when it was us, then had to realize I was there alone. But, I loved the movie and glad I went.
Good for you Charlotte. I got the laundry room floor about half done today, that is hard work. I'd like to get it finished tomorrow but want to get out worse, LOL. Dh always says he has a little memory problem. My robot vac, which I got 5 yrs ago when I broke my shoulder has lost it's sense of time. I schedule it to run about 7:30 am every day, but now it runs whenever it feels like it. It just came on:) I'll let it run since dh is not in here. There are dog toys in the floor and it's pushing them around but I'm too tired to pick them up right now.
This is a rough time for me, he is going downhill but it's not in the way that would be noticeable to anyone if you didn't know him well. Lets the dogs in and out 50 times a day because he doesn't remember he just did it. Swears I go places - when I've not left the house. Isn't even able to feed the dogs anymore. Wants me right here with him, but not talk because it interrupts the tv. I ask him to unload the dw and he does, but doesn't know where anything goes or what the items are so unloads it onto the counter. He loves to get the mail, and opens everything. He threw away so much stuff I have to be vigilant and remind him to let me see it before he throws anything away. I order a lot from Amazon and it's like christmas for him when the packages come. Drives me crazy, what's this - why did we get this.......but won't hand it over to me.
We've had record heat again this summer and I feel it's going to be a hard winter. Every week they warn of major rainstorms, and we never see any. I've almost give-up trying to keep anything alive. So much to do to get ready for winter -- I guess there is something to be said for not being able to worry about anything :)
Even though I have friends who are going through the same thing, I would never discuss his problems with them like I have on this board. I assume the others feel the same way - it's like there is a line we don't cross when it comes to the personal things we go through. Maybe that's why I don't attend a group since I'd never tell anyone the things my husband does or doesn't do, I would feel like I was betraying him with people who know him.
robot vacuums - every time I hear or see one I think of that video where a guy called the police because there was a prowler in the bathroom. Police arrived, guns pulled as they open the bathroom door only to find the robot vacuum in there hitting the walls!!!
I wouldn't want a robot vacuum due to the cats. Occasionally they don't make it to the litter box and robots and poop don't mix. Oakridge, is it possible to use your robot vac on command and ignore the scheduled vacuuming?
Leannah has been hitting staff every 1 or 2 weeks. So an increase in medications. I was asked tonight by her nurse if CBD oil or gummies would be OK. I wrote back yes, just tell me what to buy and from whom.
Progression has been faster the past 2 months. I've had to replace all her clothing (she didn't fit) and just bought special shoes for her because she is pronating in one foot. Her walking is steadier with the shoes but she is still in danger of falling backwards. We all feel that we are seeing FTD progression and not medication side effects.
Hi Paul, in all the years I've had my vac, I've only had one accident like that and it was recently. Didn't make a mess on the floor, picked it up but sure did stink when I cleaned it. Took it all apart and cleaned the inside but swear I can still smell it :) I always thought it was a toy till I got one - I hope I never have to go back to manual 100%.
Re CBD -- I'd try the gummies first (spell check always changes it to dummies) they come fruit flavored, and you get a larger dose of cbd. I'm not sure if I should post the company info here. If you get the oil, get the flavored - otherwise she probably wouldn't take it and you have to hold it under your tongue for a minimum of 60 seconds. But - my recommendation is to talk to someone who knows about dosing - there is a ton of info online but really hard to compare and make a good choice. Oh, they now have it in capsules to make it easier to take. Not tried them so can't say. Can't honestly say they do enough to make a difference for me when you compare the cost of it. But if the nurses recommended it, they should have an idea of what form and what dose.
Just talked to a friend in CA - where THC is legal, went to a marijanua shop there and got lots of good info for her husband who is in constant pain even with pain medication. Sure wish I had more good advice -- didn't realize how much this is taking out of me till I got out today for a few hours.
Paul I forgot to mention, if you are just buying the CBD products, check out Groupon.com. I got $15 off the jar of gummies I bought. You do get email from them but I just delete it.
Just heard from an RN yesterday that if you have a hot drink about half hour before taking the sublingual you get more into the system faster. No personal experience with that.
Hi elizabeth and Charlotte, I just heard back from Joan in response to your question about advance notice if this site is going to be taken down. She said that when she shuts down the website she will give at least a month's notice.
My wife is in a facility so they will be giving her the gummies I bought her. Since my original post I have trained my Mac to know the word "gummies."
As to robot vacs, I've read of people who had incredible amounts of damage to their floors (**** spread everywhere) but the manufacturer replaced the vac for free un warrantee. I know one of my cats would be terrified of it, the other may show some interest (he is interested in the squirrels outdoors but shows no interested when right next to a baby bunny).
Thanks for the note about Groupon.com. I would never have thought of looking there. I will look there next month when I need to resupply.
I've changed my profile to include my contact information. I'm doing that as an offer to make available to you continued support should you feel that need to arise such as if this site does close down. There is no need to reply, but you might jot it down and then you have that option. Charlotte has her facebook connection but I didn't hear you say you also have other sources of support.
If you do choose to do so make sure you mention you are oakridge from here.
I'm not single or widowed - I'm solo. Single implies available and widowed implies a state of loss. Solo is clear. My outlook and my status are in harmony. I've been all the states now: single, married, widowed, and other.
I would prefer to be twenty now with the energy and openness that come with that, but, I've used up most of the time I get already where life doesn't provide any do overs. My sister and I argued yesterday that I should be throwing my hat in the ring with Ms. Professor over there in Halifax. She won't listen that I've been a bit nuts there but don't really want the prize. She admitted when she goes shopping and sees a nice looking woman that might be suitable for her brother, she always looks for a wedding ring. That made me gag and not in a good way.
While I'm writing this, I'm also writing to my high school friend in Halifax comparing my changing state with her changing state in relationships. She reminded me when we first started talking in June I told her I was coming out of a horrific period and looking around. I'm comparing that to her not being in a relationship when we first started writing but perhaps being in one now. The fellow she visited in Ontario is now coming out to visit her. When our state changes we tend to be in the 'now' and don't think about our state.
That's what's happening to me. I used to be there and visit here; now I live here and visit there. How that happened exactly I don't know but it has. I've exchanged the problems and tribulations of that for the problems and tribulations of this.
I would prefer to be absorbed by wonderous things, but the truth is I just went out a week ago and bought myself new clothes for the first time since Alzheimer's really hit. I must own fourty Lands End sports shirts and casual dress shirts. They're timeless and in great shape because I never wore them because I never went anywhere. I wore t-shirts and I wore them out. Frayed collars, little holes, cracking logos. I now own a shopping bag full of Denver Hayes t-shirts in every colour of the rainbow and need to permanently retire over a dozen shirts that have served me well and are part of my memories. Not exactly riveting stuff but the stuff of my actual life.
I used to ask a lot of questions. Will I ever feel OK or normal. What will happen to me. Can I live by myself and not feel lonely. What will I be doing. Those types of questions are gone because I'm over here now and it's up to me to have a decent day and figure the things on my mind out. I don't have to remind myself of that - it's already the way it is when I wake up and when I go to sleep.
I don't wonder where the years went because I remember where the years went, and I don't wonder about Dianne because I remember what happened to Dianne. That reminds me of what the first friend who lost his wife to cancer told me. He would wake up sometimes and reach over for her, realize she wasn't there, and it hit him all over again. I considered that terrifying. I couldn't imagine being so insulated from reality. That never happened to me for which I'm thankful.
Besides my sister, I have one regular friend where we talk on the phone every few days. His father is 99 and in a home. His father's television started acting up some two weeks ago and we talked at least four times about what that could be before my friend had a TV repair man visit him and he fixed it pushing some buttons on the remote. Two days ago my friend called to tell me he was going to Cleveland on the weekend to watch an NFL game, and then said "I don't think I've told you the story of my father's television".
Well yes you did sparky, and even though I'm not zipping off to Cleveland, I can remember what did and didn't happen just a few weeks ago. It's a strange world and it always has been ever since I can remember. I never could tell why life wasn't more sensible than the wildly chaotic variations I encountered and still believe it isn't life that's wonky - it's the stories people believe.
Good luck to all of us. The last thing I want is to see people suffer - myself included. I've learned the value of a helping hand and where I can I will - especially where it comes to figuring out my own road. I'm not the only friend I have along this journey; but, I'm the only friend I live with and that, I've learned, is more than enough.
Nice to hear from you Wolf, I miss your wandering journeys :) I will make note of your contact info. I am managing, it feels like everyone I know has moved on to a different place now. Several have died, some placed either in alf or nh, either way I'm in a different place. My biggest problem is to stay connected to the outside world, it's too easy to just withdraw and get bogged down in care taking. Our youngest son is coming back in another week for a visit. Surprise since he was just here in July, but will be good to see him again. I plan to work on my art through the winter, has had to take a backseat for too long. Closed my business the end of last year, and no interest in getting into sales but just enjoy the process of creating. I can lose myself for days, my piano is downstairs so hard to spend much time with it but my studio is upstairs, has just been boxed up, will have my son help get those things unpacked while he is here.
Life is what it is so must make the most of the time we have. I'll leave my e-mail in the profile if anyone cares to make note of it.
I noticed on your profile your wife had early onset. I had never really thought about that till recently. Both my Mother and Sister would have qualified as early onset due to their age but I don't remember anyone ever mentioning that term back then. Makes me feel a little better about myself, I'm long past the age to qualify for that, LOL.
I play Words with Friends. I use to only play with my Facebook friends but now to get more games I accept from people I don't know. The only problem is because they are not on Facebook I can't find out about them. I am now playing with the third guy trying to hit on me. The other two when I told them I had no interest in other than playing the game with them so, they disappeared. This latest guy says he is a pediatrician working with the UN but on leave in Wisconsin. He kept asking me questions about me, wanting a picture, etc. I turn it back on him - lol. I have commented on the rare conditions my two grandchildren have and I don't think he knows what they are. For a doctor he is not too good at the game! I always talk as if hb is home - don't want them to know I am alone. I did tell him the other day my husband was put on hospice and he stopped asking personal questions. Maybe someday I will flirt with the guys (online only) but for now not ready.
I know of no clearly defined difference between AD and EOAD. I had the top geriatric specialist in this region take Dianne on early and she was clear that EOAD starts well before you're 65 and it generally moves along faster than AD. She told me in 2008 that EOAD generally took an average of 8 - 12 years from when it first set in. That turned out to be right in our case.
If you can lose yourself in your art then you have something important. That isn't probably how it appears now and that's supported by what you said about your studio. I'm similar in that I can also get lost in my arts and I also have the master bedroom set out as my studio. I haven't painted in a few years now but I'm spending time developing writing. What I'm saying is that even though I lost access to that immersion for some time, it's still here welcoming me to lose myself in something. There's an easel and half finished canvas right over there if I wander over.
Like all things in the reclamation of afterwards, that relationship had some fiery and complicated moments but it's all here again and feels accessible. It's also been tempered into a broader range mostly earned through pain. That truth can eat you up but it can also expand your outlook and channel out into expanded expression.
If your son helps you open up the studio there will be less of a barrier when that time you open to it comes.
Hi Wolf, I wandered around this site for a while, wondering where the old "Journeys . . . " thread went. How did you do that? You must have access to the secret codes.
I guess I missed part of the story about the prof from Halifax. I was rooting for your friendship because you might get to live in Nova Scotia, which is so beautiful. That's where we spent our honeymoon. We drove up Portland, ME, and took a ferry boat. Seems long ago and far away.
Hi Myrtle. This is that Journey's site. I got the impression recently that people wanted somewhere to just chat so I changed this and put up something more generic and open for them.
I agree that Nova Scotia is a warm and welcoming place in every way except weather. Their summer is noticeably shorter than ours over here in southern Ontario and our summer lasts about two weeks.
You're right about moving from Ontario to Halifax, but you've got the wrong guy. In fact Mr X is in Halifax as we speak visiting her now after she spent a week with him in Ontario a month ago. Allow me to explain by getting way too personal.
If you love sex don't marry a gynecologist, and if you love unguarded sincerity don't marry a psychiatrist. Let's start with my wedding ring she (as the maid of honor) had. It ended up in the sewer in front of the church. Even my sister remembers that because she was one of the bridesmaids. According to the professor, it slipped off her finger and was found in time for the ceremony. Then where's my ring?
Then there's the disputed dalliance. In my memory a few weeks before the wedding she called me wanting to talk. In her memory I called her wanting to see her. In my memory I drove over and we ended up on the lakeshore kissing in the car. In her memory she was "confused and curious" about my call and we talked. In our correspondence given that wide gap, I apologized for my abysmal behavior and she didn't reply to that point. Even Dianne knew that story because I confessed it to her a couple of years later. As I told my sister recounting this story, I would like to know who was kissing me back that night. As for Dianne, I also forgave her dalliances.
When this person popped up on Classmates, I became Wile Coyote springing into the scene with veil and bouquet saying "I do". Except she doesn't and just wanted to talk. I accepted that in the same way a herd of yappy dogs accept getting into the car to leave the dog walk. I'm all better now. All I had to do was accept that I was nuts - which I was, am, and have no intention of changing.
She's nice. I always did like her. And we have great discussions about all kinds of things about ourselves, politics, and a wide variety of topics. That has helped me in my journey of coming around to being more real about everything including myself. That's a work in progress; but, I passed the milestone of knowing this is not a door I want to go through and what I was dealing with mostly was being both stuck in high school and facing my own feelings about women now. That's about it.
> Then there's the disputed dalliance. In my memory a few weeks before the wedding she called me wanting to talk. In her memory I called her wanting to see her. In my memory I drove over and we ended up on the lakeshore kissing in the car. In her memory she was "confused and curious" about my call and we talked. <
I reconnected with a dear college friend recently. I mentioned that we had made out a couple of times back in college. She laughed and apologized and said that she had no memory of it.
My sister and I don't agree on numerous things about our memories at home either. Sometimes the versions are really different. It's just the way it is that knowingly or not, we mostly write our own narrative. In other words, we remember and forget things as we do - and it's that which becomes the truth as we know it. That's actually fairly freeing for anyone who can understand that things are as good as they can get when we're just being ourselves.
Charlotte, In regard to your post of October 8, I belong to a work-related Yahoo group, and the moderator just notified us that Yahoo was closing all its groups at the end of October. So if this site closes, a Yahoo group will not be an option.