George is very stubborn just hates to shave, hates going any place and never wants to shower...Yes I am sure it has to do with his condition with dementia..I have some thing I got from the hospital called cleansing foam washes body and hair with out going into the shower and it works real good..from CONVATEC aloe vesta..he will let me do this without fussing..you just have to do what you can as long as he don;t get upset..some times he get anxiety attact for no reason at all so I have to be very careful... The hospital took George off the Aricept bercause he was losing weight and being so tired...not wanting to get up to eat or nothing so he is not taking any thing for his dementia..unless he gets bad and I have to call his Dr. for some other medicine for his dementia...he is eating good has gain 2 pounds, walks without walker so he is improving...
I live in Orlando Fl. who else lives in Fl.? I live in a mobil home community that just might have a good support group in the park. I will know more after it after the meeting Thursday evening... I might be able to go shopping for an hour ...but I just hate leaving him for fear of falls...I would not forgive myself if that happen...
Thanks for answering me I love this site...just what I need to talk to people like you all keep it up I need you..JOY
I get my husband into the shower maybe once a week if I'm lucky, and always because we are going somewhere, like a doctor or something. shaving, most of the time, I have to do, because he lets it go so long he gets impatient that the hair won't come off. The razor gets all clogged, and needs to be cleaned but he doesn't do that. He's been on exelon for about 9 months, but has not much appetite and has lost about 30 lbs in the last 2 yrs. I make him thick shakes with ice cream, instant breakfast fruit, anything I can think of to put in it, and he loves them. I'd rather he ate food, but any port in a storm, right. He used to be so meticulous about himself and his clothing, now I have to lay out his clothes, and if I don't he will wear closthes inappropriate to the season. Like a sweater when it's 80 degrees out. Someone once said, cheer up, it could be worse, so I cheered up, and sure enough, it got worse. Well, It's not going to get better.
Isen't there any thing that don't keep them from losing weight? I have tried these shakes too I have boost, ensure, make my own he says not now I am not hungry. that is when he was on those medicines...he is not all that bad...today I am going to coach him into walking with me just around the house by himself with me walking with him. and the therapist said to try him standing back to the wall and stretch his back and do it 2 times a day.In stead of asking him to do it I will just say come with me..we will do the walking and stretch..I have to catch him while he is going to the bathroom by himself...kind of tricky..well lets see if he will do it..Now he said he will take a shower by himself..I will be there to see if I can help with that so he don't fall.. I always put out his clothes and he is good to follow...I am thinking when he goes to his Physical Therpist out of the home he will give me a hard time...HMMM let you know...JOY
I don't know if my husband has started losing weight, he has started not being hungry, especially at lunch. But my understanding is that there is nothing that will stop any of it. The disease (and its medications) make them not so hungry and later the disease actually keeps them from digesting what they do eat.
"Someone once said, cheer up, it could be worse, so I cheered up, and sure enough, it got worse."
Oh dear, I must need more sleep. That just totally cracked me up.
Joy, thanks for the tip about the Convatec aloe vesta. My husband isn't that bad yet, but then, I was just laughing, wasn't I ...
One of the first symptoms I noticed that made me worry there was something really wrong was my husband losing 45 pounds in a few months. He insisted he was dieting. (Yeah? I hadn't changed what I was cooking, and I hadn't noticed any change in how much of it he was eating.) He was under severe stress, so I thought maybe he had clinical depression. Of course, it turned out to be AD. But when we got rid of (temporarily, durn it) the source of the worst stress, his symptoms improved and he put most of the weight back on. (No change in what he was eating, as far as I could tell.) Now, it's coming off again, a tiny little bit at a time, even though I work at stuffing him like a Thanksgiving turkey.
Weight loss is part of the disease. It is one of the indicators that is used to tell how they are doing. The facility where my husband is typically feeds them 3 times a day and has an morning snack, afternoon snack and will give many of the residents that aren't eating well an evening snack. I have heard 2 things that can cause the weight loss (besides the medication). One is the disease - this often happens. The other is disease related in that they are working so hard to keep things together that they use a lot more calories. My husband will get a sandwich to go along with his lunch and dinner and he will eat his whole meal plus the sandwich.
Hello again...I went on the internet to find out more what I can do without drugs to get him out of this slump if anything. ..In the vitamin/herb section I found some thing called Ginseng complex....look it up what can you lose..I did talk to the Dr. and she said it was OK for me to give to him...I will start today and keep taking his blood pressure ..see what value this will give him...just hope it will not hurt....
George stayed in bed all morning ...I know he got up early in the morning and I know he did have a resless night..of course when he does then I do... I decided to buy a good juicer...I can give all of us some veggy & fruit juice all in one...George just don't eat veggies so I am sure it will help..now to get him to drink it...HMMMMMM....all I can do is try...JOY
My husband and I both like V-8 (room temperature is best, I think). And they've been advertising new V-8 juices that contain both fruits and veggies but taste like the fruit. Haven't tried those yet, though.
Morning Sunshyne....I did order the juicer...can't wait for it to arrive...I went to the store yesterday and bought some fresh fruit and veggy...among other stuff..also bought the GINGENG COMPLEX gave it to him yesterday...
He really wan not himself yesterday so I will keep giving this to him to see if any changes made ..He really loves to sleep..for 2/3 days he was doing so well with getting up and eating and gaining weight..but yesterday was a bad day...HMMMM.
I heard about the V-8 with fruit sounds good to me..keep me posted OK...JOY
My DH got up from his nap yesterday and came out to the kitchen to talk. He said to me, " I really don't know anything about you , who's your mother and father?"... We've been married for 31 years and he's asking who my pareents are. Also asked me if I had siblings. Didn't know my mom had died, so I laughingly said Did you think she just stopped visiting? LOL. then last night he was asking me if I had photos of my father. I wouldn't dare ask him if he knew who I was, what if he didn't? I don't know if I could deal with that. At 9 last night I got up to take the dog out, and he said he had just taken him out. I answered (which I shouldn't have, but sometimes I forget) Honey that was at 4 o'clock, it's 9 now. Well, he got really mad at me for saying that. Fortunately when I got back from walking the dog, he had forgotten he was mad. It is so hard to watch everything you say for fear that it will upset him. Oh well, I know it's the disease but it's just so maddening. We have dealt with mental illness since we were married, because his son is bipolar, and I was able to say to him, he's not doing it on purpose, he's ill. It's much harder to say that constantly to yourself about the person you've always relied on. very hard.
When my husband asked me where [Starling] was, I nearly freaked.
I know how you feel about having to watch every word. I still forget not to start conversations about things that I've just observed. Between his needing his hearing aids (which he hasn't worn in months) and the disease trying to talk about anything is frustrating. But it is so hard to break the habit of sharing little things during the day.
And it hurts.
And I never know what will make him sad, depressed or angry. Which is its own frustating.
My husband is stage mid-late 6 i think. the Alz meds helped him mostly in the mid stages then seemed to have less effect so we took him off after many yrs. that was in jan and now june hes doing so much better, able to walk better and not aggressive at all and cooperates a ton better like bathing etc. i was a super advocate of the AD meds and afraid to take him off but he started with side effects that could only be from them so neuro said no more. i also give vit B12 complex and it helps a lot with giving him his appetite back. hes gaining some lbs back he lost several when sick with uti's. at some point i think less is better -mine also had no appetite while on namenda. centrum silver and B12 vit every other day for us. divvi
Divvi, what were the side effects that were happening when you stopped the meds, and which meds did you stop. My DH is on Exelon, I can't tell if it's helping, and he doesn't eat much and has lost weight. His B12 was above where it should be because he was taking Foltex (Folic Acid in pres dose) so that was stopped. he's not agressive , but he does get irritable, and is just not with it. I wonder if we've used up the usefulness of the meds.
I think we all would like to know from people who have already done it. When do you stop giving the dementia meds? What happens when you stop the meds? And who's idea was it to stop?
In our case we were on aricept for several yrs early stages, a rash develped after several yr we linked to aricept. then we went to reminyl/became- razadyne which caused him to throw up yellow goop;i know sorry, but it was bad. did you know its made from dafodil somethig or other? thats why i think his vomit was yellow..always was neuros idea to take him off and see how he did. and we didnt wean at that point off meds it was immediate, no more vomiting. then we added namenda by itself and he took that for several yrs. seems he develops intolerance to the drugs over time, and neuro said this is common. best to take them off if any side effects interfer with his daily life. he was having lots of runny diarahhea and was not very alert and seemed to be drugged most of the day when we decided to stop. i know each is a difference case but in ours its been wonderful for him to be off all of those meds..hes soooo much more himself and eating by himself and walking and laughing and can actually answer a question which before he seemed out of it. giving b12 complex and centrum silver and his blood pressure and prilosec for acid reflux and bladder med is all hes on at this point. hes gaining and eating me out of house and home and seems in much better spirits. no aggitation and cooperates for baths much better as well and just seems overall in better health without them. i wouldnt recommend stopping without consulting your drs but i wish i had done it earlier, as i was always afraid of how we would decline faster etc and lose abilities faster if i took him off..i do think at some point they lose effectivness- i think hes mid-late stage 6 and holding his own so far. divvi
I guess we all live and learn...the only drug George is taking is 1/2 coreg...1 a day ...for his heart...his blood pressure is still low but I think it is because he hates to get out of his easy chair..the Physical Therapist had her last day yesterday..she wants George to walk outside every day even if it is 10 minutes so I will walk with him every day..George has all his appetite back infact he gain back his 6 pounds he lost when he was in hospital..He still gets confused and he does ask me stuff and I just repeat answering them..I don't mind..I also got an adjustable bath chair..he got into the shower and cleaned up washed his hair and I did help but he washed by himself...I am giving him GINSENG and stopped the GINKO because he was getting buises and he takes 81mg aspirin I can't give him both...guess we have to take one day at a time...JOY
I know I was part of a discussion on stopping meds...someone wanted to know about stopping it for their grandmother, I think.
Anyway, we went no meds when the incontinence started. I'm not sorry we stopped them, and I am positive my LO will thank me when I meet her in heaven. It wasn't what the neurologist wanted, but he's not in a NH with Ad, is he?
We haven't had any bad problems as a result of the stopping. We were beyond helping what the medication was supposed to help.
It's our 41st anniversary today. First one ever spent visiting each other, and not together.
Happy Anniversary T. So sad though that you guys are not together for #41 ( Dee and I had our 41st on May 6th )... we are still together but again your situation remindes us all of what our futures may bring,,, how sad.... Yes I agree that at a stage in this journey what differance can the meds make other then for comfort.... Hang in there my friend.......... Dan
Yes, Happy Anniversary "T" !!! I also am very sad that you two could not be together. But, this journey has not been easy on anyone. We all just do the best we can under the circumstances.
My DH is in a NH, so, we brought him home for our 25th Anniversary on 4/21 of this year. He was just smiling, etc, but, I do not really believe that he understood what was happening, but, I did !! It is so sad for everyone involved.
I also have started taking my DH off some of his meds and everyone is commenting on how he seems so much more alert than he did. I believe that some of the meds make them feel tired most of the time. When my DH was put on some of the stronger meds, I know that he did need them at the time, but, a year later, he has entered another stage and seems to not need them any longer. Luckily, the doctor is willing to work with me on taking him off of them slowly. So far, we have had no problems with slowly taking him off of them. We are doing it one med at a time. He is now totally dependent and in a wheelchair, so, I believe he no longer needs most of them.
I have read somewhere that when you take a dementia patient off the dementia medications that they regress to the point they would have been in had they never taken the medications. Frankly if they are already at Stage 7, I see no reason not to let that happen.
Is that what those of you who are in the process of removing the medications are seeing?
Are you just removing the dementia medications, or are you removing others as well? My husband is also on a blood thinner, cholesterol medication, high blood pressure medication, and possibly others as well. He takes a handful in the morning and I'm not sure what all of them are for anymore. Are you removing those medications as well?
we only removed the dementia meds due to side effects and hes doing MUCH better and more alert. still taking the blood pressure as he would stroke within days his goes so high, and his prilosec for acide reflux,and bladder med for keeping the urine flowing, and a 50mg daily antiobiotic for uti..maybe if need be we will start weaning these as well, for now hes pretty good like this. divvi
Divvi, as a retired nurse, my advice is that your husband stay on the prostate medication (Flomax?) and the low-dose antibiotic for urinary tact infection. My husband is 88, and I find that these old boys need all the help they can get. And, as you know, a urinary tract infection can worsen the confusion of dementia.
Mary thanks for the advice. he was on flomax and bp dropped dramatically 96/48..again side effects from flomax so uro put him on uroxatral now (different brand) and its working nicely and not affecting the BP. i know what you mean, mine has enlarged prostate and without that med it would have him with uti in no time flat, backedup urine flow etc without the antiobiotics its to the ER asap, so far so good with the daily dose, . its very challenging to keep him healthy. not only uti causes confusion, ours goes danger zone sepsis to kidneys overnite it seems with very little warnings, and that is life threatening. we learn alot with all this caregiving! divvi
When my DH gets to Stage 7 I think I would cut out all medications, unless they were for comfort. At that point, wouldn't it be better to die of a heart attack or stroke?
To go back toTrisinger's post, I would like to wish you "happy anniversary", but maybe should qualify it with "as happy as possible given the circumstances". My thoughts are with you. In another 2 weeks we will be celebrating our 54th anniversary. I'm not sure DW understands, so we won't do much - maybe I'll get her some flowers since she likes them.
Trsinger and Marsh and Dan and Kay Kay and Starling(I think I remember she is celebrating 47th anniversary) - I wish each of you "Happy Anniversary" as well. We can still celebrate the fact that we are alive and still sharing our lives with our spouses, remembering the love and wonderful memories that we can from our marriages for both of us! In August my DH and I will celebrate 47 years together. I don't think he will understand, but I'll prepare his favorite meal for him and open a bottle of his favorite wine, and he'll enjoy it and know it is a special day.
It has been 47 years, but Memorial Day Weekend was another anniversary. We met during that weekend 48 years ago. Our wedding anniversary is in February. And yes, it was bittersweet. Try to enjoy your day Mary.
frand (and Starling and Mary) ... the potential problem with stopping meds to protect against things like stroke or heart attack is that a stroke or heart attack can result in even worse disablement and suffering, without causing death. Depending on the patient, these could be considered "comfort" meds. For example, when my first husband was dying of cancer, I agreed to radiation therapy, NOT to prolong life -- that was absolutely the last thing I wanted -- but to shrink the tumors in his liver that were causing extreme pain, blocking the bile duct and causing projectile vomiting, etc.
When the time comes, I think you would need to talk with your LO's doctors and hospice, to determine which meds will simply prolong life, and which are likely to prevent additional suffering.
Of course, I intend to use the knowledge and wisdom I have and listen to the doctors - but I would never do anything to prolong life in Stage 7, for sure. Thankfully, Hospice is a wonderful asset to have. I helped a friend when her Mother died and I remember how many times her Mom was about to die and my friend did everything she could to keep that heart beating - they had issues not resolved and it was very painful to watch.
Frand, I hear what you are saying. When my sister was dying of pancreatic cancer my older sister and I could not have viewed things more differently. And there was only the two of us to decide things. My sister had suffered horribly and at that time pancreatic cancer was a death sentence..period! Nevertheless, my older sister insisted she be treated for everything and I mean everything. Considering she was already in such agony... I simply could not understand taking any action that would prolong her life even briefly. Experiences like those shape us all.. Although my heart breaks when I see how my husband is in decline , I believe that I will find the strength to let him go when the time comes. He would want me to help him through to the end.
Basically when the time comes, I want to be educated, but I expect to lean on Hospice.
Like a couple of you I had the experience of making the tough decision in the days before Hospice. My sister and I decided to let our mother die in peace and without pain by not taking heroic efforts. Our brother wasn't present when we made the decision, but fought with us about it. A few months later my sister-in-law died at the Hospice House (very early version of it) and he forced them to resuscitate her at least once that last week, and gave them hell because she died anyway.
Oh, to explain my situation, we went no meds on those meds that attempted to slow progression. We still give what she needs if she is agitated, like risperdal, or if she can't get good sleep, like depakote. The ironic thing is that she is as healthy as a horse, except for the biggie. I know so many people have all sorts of health issues, but if she didn't have AD, she wouldn't have any health issues.
It may not be up to us in a bit, anyway, because she is refusing meds, and we can't get her to take them.
I woke up yesterday and thought "Happy Anniversary. Is it really? Happy?" And I thought somre more about it and decided, "Yes. We are both alive and I can still see her and kiss her. It's Happy Anniversary."
And thank you all for your well wishes! When you have friends who care, you can handle the rest. yhc
Guess what I do a lot of repeating myself..LOL... Our 26 Anniversary is tomarrow...Hope he shaves..lol...I will fix a nice steak dinner...make a cake...our favorite thing to do is watch a movie on our dvr...Got to buy some more wine... Yesterday he was in a better mood alert and eating good..Maybe because his son was home doing chores and he did watch him while I went out folk dancing..boy I needed that...If any one of you every needs to get some stress relieve go dancing when you can..I have danced for 25 years and I am 71 years old.. Every one I have talked to said you have got to take care of yourself..stress is a killer...it will cause cancer and many other things.. God is always there for all of us..JOY
My husband was removed from all dementia meds early on, they all gave him severs diarhea and he seemed to fall a lot. I didn't notice any improvement during the 15 months he took meds and I didn't notice any regression when he stopped them. The side affects went away until he became incontinent because of the AD, but the falls have lessened considerably.
I was once put on a drug when I was in the hospital. I was having all of these weird symptoms. When I got home I read the side effects list and realized that I was having all of them from dry mouth to heart palpitations. Literally freaked my doctor when I reported all of the side effects I'd had. He asked was I still taking the drug and I told him no. The heart palpitations really scared both of us, but they stopped as soon as I stopped.
Drugs and side effects are weird. And the dementia drugs are weird too. The first one they put my husband on had no noticeable effect. The second one did, and since it is frequently the combo that does the trick he is still on both of them.
My husb takes Exelon & Namenda and has since diag in 2004; he has declined SO much since then, but initially, they did seem to 'help' him. I asked our neurologist abt stopping the meds @ our last visit (Jan '08) and he said he would not recommend & that he had seen patients severely decline after stopping. Maybe it was just too soon and if he cont's to decline further, he would say "ok"?? Not sure. This is so so hard to think about & decide what to do. You want them to be as "good as they can", but you just wonder "what" will work & really be best for them, and for us...very hard.
We had a party for our 30th anniversary last year (2007). He wasn't sure why we were having the party but he had a good time. This year, #31, we just had a quiet dinner at home. As for the meds, he's been on for quite a long time, first Aricept, then Aricept and namenda (bad side effects) now Exelon. and the common assumption is that the person will regress to where they would have been without the meds. this is what happened several years ago when I stopped the Aricept. I agree that when he becomes incontinent, we don't treat the disease anymore. At that stage, obviously, the meds are no longer working.
I have started keeping a bowl of healthy snack foods on the kitchen counter. He will go and freely get things out of there and it has helped the weight regulate some compared to what it was. One of our favorites is the Nature Valley Yogurt granola bars. They really taste good and not like cardboard!! Was also reminded at our support group to be sure they stay hydrated as they can get kidney infections easily as they forget to drink. And if there is a confusion with fever to have them checked soon!!
Morning all...I did read all post...some days I am busy and can't post I guess you all know that... I put down some crackers and peanut butter in packages just to snack, peanuts too and I found out about GATORADE it has ELECTROLYTES it sure does quencher your thirst...George like it too..he don't drink much but I keep pushing him to drink.. I also put out chocolate covered raisons ..I need to buy more..I am out..because he eats them...GOOD.. JOY