'Caring for a spouse with dementia ' posted by judypa @ {post.created_at.to_s(:post_time)}

judypa — Mon, 13 Feb 2012 02:52:10 -0000

I just typed up replies and lost it all. I am too tired to redo it again so I will wait until tomorrow. I don't know what happened but now I can relate to other ones who have lost their replies to posts. judypa

'Caring for a spouse with dementia ' posted by SDBabs @ {post.created_at.to_s(:post_time)}

SDBabs — Sun, 12 Feb 2012 23:44:46 -0000

An article said to go to Alzheimer's.org to sign up for trials. It looks like a lot of people want to participate. Remember, someone gets the placebo, but they don't say who.

'Caring for a spouse with dementia ' posted by lindasu Oklahoma @ {post.created_at.to_s(:post_time)}

lindasu Oklahoma — Sun, 12 Feb 2012 23:35:53 -0000

I have search for the directions, or a site to sign up for the trial drug Bexarotene,, can't find one....has anyone else found it??? lindasu

'Caring for a spouse with dementia ' posted by Peggy1 @ {post.created_at.to_s(:post_time)}

Peggy1 — Sun, 12 Feb 2012 23:26:28 -0000

Sunday and the sun is going down. I think it is 29 days until daylight savings time. I really like that extra light in the evening. Maybe he won't go to bed at 6:00 like he is doing now. I did take him off of Aricept last Sunday and only one temper outbreak so maybe that was part of the problem. Rascal Flatts was wonderful. The UK game with Vandy about drove me wild. I just love my Cats. Couldn't get up to go to church today. I as up in plenty of time...I just couldn't deal with getting him showered, shaved, and dressed....too stressful. Two gals from Sunday School called to make sure we were OK. I appreciated their calls. My neighbors came for hotdogs last night and stayed until half time of UK game. Was fun to have someone to talk with about super dunks, etc. He isn't interested in UK anymore and it was his life. Hard to keep up with all of the posts. I just skim and try to get the gest. Looks like most of us are hanging in. good-night. Gonna watch the Grammy's if I don't fall asleep. peace

'Caring for a spouse with dementia ' posted by jbdsta Bettye dfw tx @ {post.created_at.to_s(:post_time)}

jbdsta Bettye dfw tx — Sun, 12 Feb 2012 20:34:33 -0000

Mary John has vascular dementia as well as what they believe to be alz as well so how much it would help him who knows... Vascular dementia has the death of pathways but i asked the question on the alz.org talk about this and one of the side effects is it allows pathways to be built from ones that have shut down... so damn right i will try it for sure no matter what the diagnosis says .... they have no way to tell you if plaque is there so what could it hurt .... also having that drug would not make you immune it only helps develop the protein necessary to wash away the plaque. You indeed should consider getting tom the drug .. it is a fact that it may help right. Love ya Bettye

'Caring for a spouse with dementia ' posted by wklnd51 @ {post.created_at.to_s(:post_time)}

wklnd51 — Sun, 12 Feb 2012 18:38:11 -0000

The coconut oil is worth a try, I still have some so may put June back on it, you can give a tablespoon by mouth, it reaLLy has no taste and is not half bad, you can use it in just about anything you want, on a salad, eggs, put in cereal. I got mine at Swanson Health Center, you can ordeer on line also, they to my mind have best prices on supplements, vitamins, etcc..Sometimes, I think June's dimentia/alz is from the pain mgt doc putting the epidural needle in her spinal nerve. She has the parkinson's fairly bad and doc is starting her on med for this, she will almost shake uncontrollably and get stiff.. Bettye, we shud all volunteer for the trials, suppose they will test to see how far along some are and will not be accepted, so like Bettye, GO FOR THE TRIALS IF POSSIBLE.I will try anything and have tried all kinds of supplements. The coconut oil started in Canada and supposedly cured his??? Lindasu, get supplement (Lecithin, Kelp, B-6 & Cider Vinegar). I get it from Swanson's listed as best weight-control formulas, but it definitely works great on constipation, which June has had a problem with her whole life, if I remember right, it is only $4.99. June has gotten so weak and wants to stiffen up, I just don't kknow yet. Char, how long has he been on Aricept, it surehelped taking June off Airicept and Namenda, she will get angry, but nothing like before. Hugs & Prayers for a good week, Love to all, Lloyd

'Caring for a spouse with dementia ' posted by Icareforhim @ {post.created_at.to_s(:post_time)}

Icareforhim — Sun, 12 Feb 2012 18:27:49 -0000

Brenda, I know you were joking when you told Bettye she would not get AZ because she had been on this drug but ??? ... We should start a question on the internet... who has taken this drug for skin cancer? Do they have dementia? It might prevent the onset...who knows. I am posting this on my facebook page.

Me first...

Bexarotene "When used in mice, the drug was successful in removing the buildup of amyloid plaque in the brain-a pathological hallmark of Alzheimer's disease-as well as reversing cognitive symptoms and memory deficits.

Mary T. I have not taken the drug and I do not have AZ. Tom T. has not taken this drug but could have AZ as well as Vascular Dementia.

'Caring for a spouse with dementia ' posted by Icareforhim @ {post.created_at.to_s(:post_time)}

Icareforhim — Sun, 12 Feb 2012 18:18:08 -0000

Love you Bettye, if Tom had AZ I would be crawling through the fence to MX to get some for him. NO passport and as we used to joke in San Diego...the hole in the fence is faster. Truly, I would find a way to get it. I don't think vascular dementia would be helped at all. NO Plaque.

I sure hope this helps some of you. Love, Mary

'Caring for a spouse with dementia ' posted by jbdsta Bettye dfw tx @ {post.created_at.to_s(:post_time)}

jbdsta Bettye dfw tx — Sun, 12 Feb 2012 17:20:56 -0000

Clydia.... i know what you are feeling... me tooooo but girlie this drug has been on the market 20yrs no government involvement to approve it.. it is approved anyone can get a script for it will the insu co pay... dont think so but who cares i will sell my car to get it or go to mx to buy it .... will it work who the hell knows.. but alz.org is working on the trial right now.. the drug companys and the gov cant stop this ball from rolling YAHOO .. are you bitter NOPE you are just trying not to have another disappointment.. lord knows that is where we live... disappointment land .... whats one more to us . can it bring them all the way back... maybe not.. the brains have shrunk but can it make them better and keep more from forming.. per the research YES I am up for YES in the smallest degree . The side effects are well documented for this drug.. when i took it i got an upset tummy and some water retention but nothing else..... take it for what it is.. a chance that their lives may get better and our lifes may as well. Lindasus guy is not that far along i could fix him for the most part... our guys who are full mid or over who knows but ya know what its a chance and when is the last time we have had a chance to just make them stable...NEVER i say run dont walk to the trials what would it hurt... go for the chance ok soap box is now put away thanks for putting up with me Bettye

'Caring for a spouse with dementia ' posted by lindasu Oklahoma @ {post.created_at.to_s(:post_time)}

lindasu Oklahoma — Sun, 12 Feb 2012 17:07:00 -0000

I bought 'Lou Ann 100% Pure Coconut Oil' at WalMart.... JohnC has been having a little problem with constipation so maybe the added oil with help him......lindasu

'Caring for a spouse with dementia ' posted by Charlotte ALIG @ {post.created_at.to_s(:post_time)}

Charlotte ALIG — Sun, 12 Feb 2012 16:53:24 -0000

Bettye, I had overlooked your post about the new drug....thought for a moment I had had a severe attack of senior moments, but went back and looked. I had not seen it before, and I had not responded either so far as I can see, but boy I am on the bandwagon now. Went back to the site and cannot find the article I sent to the group here on it... a synopsis...too much stress I guess. He is quite today at least...tomorrow we see the Dr. for the 3 month visit..Nothng gets done there, just has to show up to get his aricept..which he should not take with alcohol..anyway..he has skipped several doses already...we will see what tomorrow brings...love to all,Charlotte

'Caring for a spouse with dementia ' posted by Charlotte ALIG @ {post.created_at.to_s(:post_time)}

Charlotte ALIG — Sun, 12 Feb 2012 16:40:05 -0000

Well Clydia, I have to agree with a lot of hwat you said, but the gov is having to pay out a lot for AD patients too, and it costs more and more every day, so maybe there is a chance that the trials and useage will be sooner than if just the greed were working. The new capatilism is deep greed, way beyond control in my humble oiniion...but let's hope this time.......love, Charlotte

'Caring for a spouse with dementia ' posted by Brenda-Cape May NJ @ {post.created_at.to_s(:post_time)}

Brenda-Cape May NJ — Sun, 12 Feb 2012 16:03:18 -0000

Hey Bettye....you won't get AD cause you took the drug!!!LOL Just joking, but wouldn't it be great if it works as well on humans. It probably will not reactivate any dead cells but stimulate the one's affected by the plaque buildup. It is a bright sunny day here. Light snow on the ground, very pretty! OH, but it is bitter cold and windy so no walk today. I slept rather well with the new meds. Up three times but sble to go right back. Between the sleep and the antibiotic kicking in I feel bettter than I have in a long time. I didn't realize how bad I felt until I felt better. LOL Now I have more energy and will get of my rear end and get some things done. Wed. will be dentist, hopefully he'll pull that tooth the same day. Dom is pretty good, got him shaved...no to shower. Gonna try again today. I will not fight with him anymore as itonly seems to upset both of us with the anger lasting longer in me...he forgets right of way. Linda..enjoy your trip! Joan, funny, Dom also cuts his bread or sandwich up into little pieces and eats them with a fork. Gotta go...I'm still in my nightgown..gotta get dressed. Have a good day everyone. God Bless. Brenda

'Caring for a spouse with dementia ' posted by jbdsta Bettye dfw tx @ {post.created_at.to_s(:post_time)}

jbdsta Bettye dfw tx — Sun, 12 Feb 2012 15:32:32 -0000

joan you can buy it in any healthfood store and some grocery stores... i buy it in the hard form keep it in the refrig and use it... i think it helps a little but who knows.. couldnt hurt right ... when you ask the doc there is a prescript type called axona.. lucy sent it to me after jerry passed away you make a drink out of it and i think it does really good (oh god lucy i forgot to send you money for that.... dang gotta find your address i think my mind is not working)lots od research saying he does clear some of the fog. Lotti i sent that link out a few days ago with the video but you and brenda are the only ones who talked about it. I had that drug years ago when i had melanoma and it had very few side effects... the human testing starts in a month but i would bet the government is really going to try to keep us from getting it. I told erna to check mexico for if you can buy it over the counter worth a trip to mx for me. As i have had it i know it is not lethal ... when i pulled my paperwork i found it on the meds they gave me and there it was. I was cured of melanoma . lets get it folks what could it hurt. Erna i saw a big travel advisory for mx that did include PV be careful out there please. Well he is waking up from a really bad night... gonna feed him and try to stay out of his way Bettye

'Caring for a spouse with dementia ' posted by jmuss - Joan - Rock Hill, SC @ {post.created_at.to_s(:post_time)}

jmuss - Joan - Rock Hill, SC — Sun, 12 Feb 2012 14:53:29 -0000

Had a nice evening with friends last night. There were a few glitches - like when the host brought him a beer and Gene said, "do you expect me to drink it like that?" So they poured it in a glass... Then he proceeded to cut up the bread on his plate rather than just pick it up. Weird. We rarely go out in the evening so he was confused that it was time to get ready for bed when we got home... He stayed up to watch part of the AFA basketball game then was tired enough to go to sleep. Me too. I'm learning to roll with the punches when he turns on the light in the morning. Maybe I sense what's coming and wake up before the light comes on - either way I've been more accepting of this new trend rather than ticked off.

Where do you buy the coconut oil? I might try it. Or, since he sees the neurologist next month, I might wait to ask his opinion. Although from past comments on here I should realize y'all know more than the doctors at times about what works and what doesn't... ;-)

It's a beautiful day but was only 19 degrees when I got up - finally some winter! Plan to curl up in my recliner with a blanket and book and lounge away the day... Hope everyone has a good day. Love to you. Joan

'Caring for a spouse with dementia ' posted by Charlotte ALIG @ {post.created_at.to_s(:post_time)}

Charlotte ALIG — Sun, 12 Feb 2012 12:34:14 -0000

Can hospice be of any service to folk like Patti? Iknow there must be a doc letter that the patient seems to have less than 6 months to live in order to ger REAL hospice help, but what about cases like Patti? Lloyd, maybe a call to then might help too. I am glad you got the bed at least. Yes, Lindasue, that kind of moment makes me choke up and start to cry.....I don't smile afterward, but did at least try to remember it a long time and sort of hold it like a hug. Glad you enjoyed the fire place Babs I have a lot of wood piled up in a shed outside, but it is too large and does not fit in the furnace...I can't get him to do anything with it either..maybe this summer, I will be able to break some up...Well folks, gotta go and start dinner. We eat out main meals at lunch time here, better for digestion. In the evening one eats, usually, bread and cheese or lunch meats or spreads..Hard to get used to at first, but better to sleep on a not so full stomach...love, Charlotte

'Caring for a spouse with dementia ' posted by Charlotte ALIG @ {post.created_at.to_s(:post_time)}

Charlotte ALIG — Sun, 12 Feb 2012 11:59:22 -0000

Oh Linda, I am happy for you...a nice ride and seats, new plane, and safe arrival in a nice warm state! Heaven itself!

THERE IS SOME MORE HOPE AT LAST AND IT CAN COME MORE QUICKLY THAN THE OTHER IDEAS!!!

Folks you may have heard of another new breakthrough with AD. It is use of a FDA approved cancer drug already used on humans so it won't take too long to get on the market....I pray..

for the info go to www.case.edu

Here is a synopsis in case you can't get there to see the video... This is from Case University research dept.

"When used in mice, the drug was successful in removing the buildup of amyloid plaque in the brain-a pathological hallmark of Alzheimer's disease-as well as reversing cognitive symptoms and memory deficits.

Bexarotene even helped restore lost nesting behaviors in mice with Alzheimer's disease-within 72 hours of treatment. The drug also improved the ability of the mice to sense and respond to odors.

"This is an unprecedented finding," says Paige Cramer, PhD candidate and first author of the study. "Previously, the best existing treatment for Alzheimer's disease in mice required several months to reduce plaque in the brain."

Bexarotene has been approved for the treatment of cancer by the U.S. Food and Drug Administration for more than a decade. It has a good safety and side-effect profile, which researchers hope will help speed the transition to clinical trials of the drug.

"This is a particularly exciting and rewarding study because of the new science we have discovered and the potential promise of a therapy for Alzheimer's disease," says Case Western Reserve neuroscientist and senior author of the study Gary Landreth, PhD. "We need to be clear; the drug works quite well in mouse models of the disease. Our next objective is to ascertain if it acts similarly in humans. We are at an early state in translating this basic science discovery into a treatment."

'Caring for a spouse with dementia ' posted by Linda (Sunstar) WA State @ {post.created_at.to_s(:post_time)}

Linda (Sunstar) WA State — Sun, 12 Feb 2012 04:59:37 -0000

Hi Friends, We made it to AZ this afternoon without a hitch. I talked to the woman at the gate and explained that I needed to be seated with my husband and she put us in seats 6 E and F in the brand new 737-800. Alaska has two of them in their fleet now and they're very nice. Instead of a bulkhead there is a half curtain separating first and second class areas, so we had tons of leg room and could still put our stuff under the first class seat directly in front of us. On Alaska's Facebook page last month they announced that they were putting the new planes into service and asked people to vote on the route they'd like to see them on. I entered "SEA to PHX" and we got the plane! It's fun to be here with our daughter's family. It's warmer than home, too.

'Caring for a spouse with dementia ' posted by lindasu Oklahoma @ {post.created_at.to_s(:post_time)}

lindasu Oklahoma — Sun, 12 Feb 2012 04:39:35 -0000

Lloyd, I have bought some Lou Ann 'coconut Oil,,when I scramble the eggs I put an extra amount in the skillet, and it absorbs it pretty good,, and when I make JohnCs toast I put it on and he had not noticed the difference.. so good so far,, it said not to add too much at first or it may give you diarrhea.... so we are on our way with it,, it melts at 70 something degrees so as you can see it really just will melt in your mouth... and it has no taste...lindasu

'Caring for a spouse with dementia ' posted by SDBabs @ {post.created_at.to_s(:post_time)}

SDBabs — Sun, 12 Feb 2012 03:29:45 -0000

Had a nice fire in the fireplace all day-it felt good. Charlotte made me clean out all the old ashes so I could finally build a fire. Thanks!! Jim napped on the couch and occassionally asked if he should get some more wood, but never did. Meanwhile, I went in and out getting it. Didn't do much woman's work today-too tired from yesterday. I did get to sew a little bit, now that Jim is out of the gummi stage and into the sleeping/napping stage. Things (me) are much calmer and more relaxed, thank goodness! Finished up the tax crap and ready for Monday appointment. Jim will go-I think he has to sign; this may be the last year we have them done. It was always his idea but I have found a few obvious errors. I would rather do them myself than have to look for errors. Have a grood evening-coffee ready to go for tomorrow.

'Caring for a spouse with dementia ' posted by lindasu Oklahoma @ {post.created_at.to_s(:post_time)}

lindasu Oklahoma — Sun, 12 Feb 2012 03:19:06 -0000

Lloyd, home health people would probly give you a good suggestion, just give them a call.. cant hurt ..... I just had to tell you about today... We got up late, had breakfast, I changed the sheets and washed them.. got ready to take Mom to her friends 100th birthday party... came home and JohnC and I went to the barn and made the Throne for a little party next week... as we were building it, searching for just the right piece of wood, and the right tool,,,, my mind went back to all the times we did things like this together,, so many many times... we really do work good together... always have... moments like this will will bring a lump in your throat,, and you have to choke back a tear..... and then you will smile....lindasu.

'Caring for a spouse with dementia ' posted by jbdsta Bettye dfw tx @ {post.created_at.to_s(:post_time)}

jbdsta Bettye dfw tx — Sun, 12 Feb 2012 02:54:30 -0000

Lloyd there are slings that you can rent that can stand her up or help her get straighten out look into the medical equipment .... google it . I am so sorry you are having to deal with this. Patti needs so much right now that i know it is over whelming . prayers to you mt friend Bettye

'Caring for a spouse with dementia ' posted by judypa @ {post.created_at.to_s(:post_time)}

judypa — Sun, 12 Feb 2012 02:45:46 -0000

Lindasu - As mentioned before hub by sleeps too at least 12 hours a night - nap either in a.m. or afternoon. I can idenfity with not knowing what something is or who someone is as my hubby gets so confused. Charlotte: So sorry about Hans drinking again - a whole bottle of vodka. The booze will probably do more damage than anything else. I am sorry about the anger issues has come up again, Maybe the vodka triggers it? I can't imagine how you endure your situation. I am doing more and more of my hubby's tasks as he just can't or forgets they need to be done. I feel so guilty as I don't have any of these issues now. Don't ever apologize for venting. That's what we are here on this website for - helping one another. Mary: You definitely need more sleep than 3 hours. Don't know how you do it! I need at least 7 to function. Fortunately, hubby sleeps 12 hours so I do have "my time".

Today he did a lot of staring outside. He can't seem to follow the t.v. and struggles with readiing. When we go somewhere, he doesn't communicate with anyone but just chills out. Even if it is friends or relatives that he knows. Joan, I know just what you are saying.

Lloyd: I wish I had some suggestions to help you. I am sure that someone can offer you some advise. Keep going - day by day with June.

judypa

'Caring for a spouse with dementia ' posted by jbdsta Bettye dfw tx @ {post.created_at.to_s(:post_time)}

jbdsta Bettye dfw tx — Sun, 12 Feb 2012 02:07:20 -0000

Lloyd glad you got the bed..... you need to make it as easy on you as you can. What do you think about the new drug for alz.... wow if it works like the research said can you imagine the number of lost people that will have their lives back..... ugh tonight is bad here he is on the i need booze kick and i keep trying to re direct.. the craving comes when the blood suger is out of sight and its over 300 right now.. the infection in his foot is causing it.. he is throwing things and calling names and just being soooo crazy .. finally got his meds in him but that was hard... lets play what if.... what if they were back and had no memory of the past 10years .... what would we do... would we go back to being the wives/husbands we were or would we be so burnt out we would run away.... not sure... we have to do everything but what if we didnt could we adjust .... hmmmmm food for thought huh... dreams dreams dreams i hate valentines day ... the tv commericals with the sweet exchanges between couples.. wow wouldnt that be nice but its not to be for us. Clydia has a loving and kind man and lindasu has a sweet guy .. both of you thank your lucky stars you could be in this hell that some of us live day end and day out ...... i did think if he got the drug and it worked would i stay after all i have been through..hmmmmmmm who knows !!! Love you guys peace out

'Caring for a spouse with dementia ' posted by wklnd51 @ {post.created_at.to_s(:post_time)}

wklnd51 — Sun, 12 Feb 2012 01:16:31 -0000

Joan, I tried coconut oil on June, but never noticed any change of any kind, so stopped it, it is actually not expensive, so it is worth a try. Got a hospital bed for June this week, just can't keep lifting her, need two people, she wants to straighten out and her feet slide forward, can't get her to stand up. If anyone has any suggestions, let me know. Char, praying for you and good luck. Hugs & Prayers to all, Love, Lloyd

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