Coco, haven't had much time to be here lately, but reading this thread sounds so much like what we were going through a year ago. Aricept just wasn't working for us after 18 months. Stopped it and started Namenda gradually and the difference in him was night and day. The uncontrollable obssessions stopped,he became calm and content and cooperative. I would definitely talk to the doctor about making a change. I feel your pain and pray for you. Your plate is very full at this moment.....deep breath!
Lloyd does not go to the bathroom on his own at all. It's like the urge is gone so I take him first thing in the morning and the last thing before he goes to bed at night and watch for him to grab his crotch the rest of the day. He doesn't take trazadone at bedtime anymore because it would make him jerky and fall in the morning. Now it is me who can't sleep and I don't want to take anything for fear of not waking up if he needs me. Coco, we all do the best we can, but sometimes my dark side surfaces when it gets to be too much. Used to be nothing would put me over the edge like him peeing on the floor. Either I have learned patience and that he just can't help it or I am just too damn tired to be aggravated. I certainly envy your hubby's family if they were able to deny Mama had AD or dementia. I'd love to take up residence in that fairy tale!!! I would wear a crown and prop my feet up and be thin again!
So many things on this thread that I want to comment on!
mary75* I agree with Coco – what a beautiful way to describe the process. I especially love the last sentence : You no longer fear it or fight it; you go with it.
Coco, My DH was put on Aricept & then a few months after Namenda was added. He has been on both for almost 6 years. The consensus here is that those medications are effective for about 3 years, but my DH didn't have a side effects so I kept him on them. A little over a year ago I ran out of the Namenda & I thought that maybe I would just take him off of it. Well within a week he became aggressive (not as bad as before he was put on Seroquel) but his personality definitely changed. SO I called my PCP & luckily he had a starter pack (you start on a low dose & build up to 10mg twice a day) & within 2 weeks he had calmed down. Again at the beginning of this year I ran out of Namenda & It took longer to get here in the mail then I thought it would & again his personality changed. Again our Dr. had a starter kit & within a week he was back to normal (his normal for this stage!) The wise people here told me that sometimes Namenda can help with aggressive behavior & obviously it is true for my DH. So it is possible that when you cut back on the Aricept he did have a reaction to that. These are such questionable drugs. Are they working? Who knows, but I truly think that they are helping my DH & like I said I am lucky that he doesn't have any side affects from them, so I will keep him on them for now.
andy, just saw your post. Sounds like Namenda also worked for you. Don't make the same mistake that I did! It's just that sometimes you wonder if the drug is working & stopping it sure made me realize that it WAS working for him.
Oh Julia! I could have written your post! How many times have I asked my DH to do something, only to have him not know what I want him to do or where I want him to go. I have learned though that I can NOT ask him to do ANYTHING. He is constantly asking me if he can help me & the last time I tried to let him I ended up yelling at him. It just isn't worth it. If I do happen to ask him to do something & I see that he can't I just go & do it myself & try my hardest NOT to get angry with him.
Coco....Your fear that you dh will have a heart attack from the medication probably should be replaced with thoughts of a heart attack being a blessing. My dh has a very bad heart condition and I am hoping that all this stress he is under will take him to heaven with a heart attack. We all don't want to lose our mates and we don't want them to suffer....a heart attack looks better and better to me all the time for his sake. This is no way to live and I know he doesn't like the way he is living now and it keeps getting worse by the day and week.
Wow Coco, I really empathize with you. And Mary I keep reading your words because they really hit me. We don't really know how long this will go on so we must cut some slack. I know in my mind that this is true but I am where Coco is at the beginning and every day brings loss and sorrow and endless adjustment and more loss. Although I knew he was not right for probably 5 years or more suddenly when you get the diagnosis and the retirement and the peeing and pooping it is like a one way boat ticket on the river styx. When it is early onset ie in the 50's there is also jeez we are sitting in dr offices like "old" people not fair. Of course I have known life is not fair but the child in me wants to kick and scream and cry about it. So I do.
Then he did have heart failure and many other complications and looks so wan. But I saw my best friends husband in the groc store last night and he looked terrible and I gave him a hug and he had been in hosp with heart failure just Saturday. (But he was buying groceries to cook dinner for his working wife) He still has his mind but is losing his life. He expressed sorrow at dying. My dh has no clue. Which is better?
I don't handle this well, but I handle it like I handle it. I am stoic or emotive depending on the day, hour or minute. I feel crazy sometimes and want to know when it will end but full of fear at times and want to hide in my room and cry but I get up and call drs. pay med bills and clean up poop and pee and cook and cleanmowlawnslaundrycarmaintenancework and I will do cuz I can't quit.
Dh is not on aricept but I did have an interesting conversation with the neuro on the phone on the interstate when he called and screamed at me that he could not prescribe it because my dh drank alcohol. I never asked him to prescribe it and had never heard of it till then. My dh hasn't had a drop to drink this year because the cardio told him it was toxic to his heart. We have a new neuro also but I just wanted to tell you Coco that you are handling it well as far as I can tell but then I am probably delusionally thinking I am ok also.
JudithKB...the thing about the heart attack, sorry I was not clear. It is ME I fear for the heart attack, when I freak out of course I am sure the blood pressure goes up and when it lasts for the whole day...
Dado is very healthy, like so many of our mates. Goes to prove that organic food, veges, coconuts, etc. cannot reverse the disease, though at least he is not "sick"
He is really changing, last night he got up when I was watching Antiques Roadshow, and said, I have to go to the meeting, then instead of waiting for me to reply, he started giggling and went back to bed. The giggle almost made me think he was laughing to cover up his fear.
The VA will not prescribe Namenda is what I heard, but I will be checking on that.
HOW NICE to see all the new posts when I got up this morning. Aloha to you all, my dear dear comrades in this world of questions, sadness and pain, and even the occasional thankfulness.
Hugs and good wishes. Another day is starting, I just made him go back to bed so I could have a few minutes with my coffee.
The VA does prescribe Namenda....but, they have to be considered Moderate-Severe. It took me months if not a year or more to get it for my dh. I would have a fit every time I took him to the VA. I told them why would I want it if he is severe...who wants to prolong that stage.
Finally they gave him another of their quiz test and he did very poorly so they gave it to us. I paid for it months before just so he would have it. With our insurance it was about $45.00 a month.
I am going to start another topic...don't want to violate the rules....bad news here.
My husband is on namenda and we get it from the VA. His geriatric psychiatrist, who handles his meds, said that if a drug is not on their formulary, they can ask for permission to prescribe it. I know that the VA doesn't usually prescribe aricept but he gets that from them too. She had to get permission toprescribe him the aricept and his antidepressant (cymbalta), but could give him namenda without approval.