i just wanted to let you all know that our app at the ad center did not go well yesterday. the dr was a ad specialist,very knowledgable,caring, and compassionate about ad.the patient and the caregiver. he talked to me by myself,without my dh in the room also,it was hard to hear a dr actually spell it out like that,but it wasn't like i didn't really know,it was just hard to actually hear it from a dr. he was very frank,but caring. he knew i needed the truth. he gave dh,at the rate of his progression, 12 months before total dependence. he could not get him to interact with him. he could not even repeat the 3 words,right after being repeated, the dr tried so many times,without any luck. he said he was so depressed and he wanted to know how long his speech had been affected. he also said it was unuasal for a patient to know they are getting worse and be so affected by it. he wants me to start him in a day program to get him interested and interact. i thought this was something that would be in the future,not now. i knew dh was worse and getting worse all the time,but i just didn't realize,or maybe want to realize it was this advanced. dh did not qualify for any drug trials because of no interaction.dr thought day program might help and then maybe he could qualify for one later. later may be too late. dr told me to start looking for incontience,he expects this to come soon and all ad patients have this. i will write more later. please pray for us. you all are my rock. jav
Oh, jav. It doesn't make any difference "knowing" that your husband has AD, does it? ... you're never, ever ready for what comes next. And we always end up second-guessing ourselves ... are we seeing symptoms that aren't there, are our spouses better than we think ... we're too close, and too intimately involved to be objective. It is good that you found a doctor who is experienced, one you can trust.
jav - my experiences with my husbands AD doctor was similar as far as the questions, separate discussions for each of us with the doctor and her staff. In my husband's case, they wanted him to socialize more and have a more structured schedule. I could never quite get him there. He never liked doing what everyone in the crowd was doing and he always made up his own mind on what he would do or not do.
One of the things that I found as we have been going through this process is that I did truly know him best. He also did worse around others than he did around me - this is still true. Because of that, I found it very difficult to accept that he was further along than I thought he was. I think he did better around me because he was more comfortable with me and I knew how to be around him.
Sunshyne, I agree, we are too close to the situation so it is harder to be objective and see the big picture.
jav - they tell me that my husband is very close to not being able to walk anymore and will probably stop talking soon. A part of me is curious to see how long he really can do these things as he is still making his own rules.
Knowing what is coming is good to help us prepare but only if it doesn't paralyze us from what needs to be done now.
When I was seeking other Neuro for my husband, one at a Major University Hospital told me he had no new recommendations and regarding the meds. he said his opinion was that Aricept was NOT a great drug. The best we had but not great like for some other illnesses. He was of the opinion he would discontinue the AD meds and let things go at their normal pace.
At the time, I thought that sounded good because me husband was walking around a zombie overmedicated. So, to the dismay of my local Neuro. we stopped them for a couple weeks and he became more confused, etc. so we started them again. A couple months ago we ran out of his AD meds for a few days and he became unable to navigate. Turning on the gas stove, unable to walk without assistance, fell in the bathroom, etc. It came to me about not using the AD meds (they came and we had started them the day before) had put him in a spiral downward, then back up after we started them again.
Makes you wonder it the AD meds we now have are delaying the process of dying and dragging it out longer after they become in an almost vegative state. At what point should you discontinue the AD meds like Aricept?
lmohr, what I have read, and what I believe, is that AD meds such as Aricept are "comfort care". They don't prolong life, because they don't stop the damage being relentlessly done to the brain. But they do delay the onset of the worst symptoms, by allowing what little brain is left to function more efficiently ... hopefully allowing something more gentle to take our LOs before the end stage of AD itself does. If our LOs do reach an "almost vegetative state", then I see no point in continuing the AD meds -- there are other drugs that will make them more comfortable.
Imohr I don't know if you'll get two people of the same opinion. Early on when my husband was on aricept I questioned the value of keeping him in a prolonged state of nothingness. He was non-functional and miserable. I felt the drug was increasing his agitation which we sure didn't need. When I researched the drug my thoughts were validated, Husband has FTD and aricept was the wrong drug.
Lynn initially improved on these drugs as well. When it was obvious they had outlived the hype, I still wasn't able to give up hope and kept him on them. At his doctors advice, we took him off all meds due to side effects and difficulty with his prostate and stomach pains. He did no worse without them, and his over all health improved. It is too bad, they worked great for the first year or so......
i am back and i wanted to talk some more. the dr did say that the ad drugs that we have now only treat the symptoms of ad. the ones they are working on now are for a cure. i knew the meds dh was on were only treating the symptoms and that is all any of us can hope for now,but in the future i see that we have hope for a cure and maybe a preventive. my dh was in a pretty good mood yesterday. he knew we were supposed to go somewhere special. our daughter got married yesterday. she wanted a private ceramony,so as not to upset her father. this has been a tough two days for us. i have not told my children all the dr said,i feel they will know soon enough. when they ask,i will tell. i have not even had a chance to grieve. i had to put on that happy face and then getting ready for our daughters wedding,well it was hectic and i didn't want to upset her on her special day. i feel if i don't cry soon,without worrying someone will catch me,i am going to burst. today is my birthday. for some reason i am always emotional on birthdays. i am afraid today will be the day the flood gates will open. i just don't know if i can stop. i don't want to upset dh. i set here with such a lump in my throat and hurting so bad,it's just hard to explain. it's like someone you love has died and your heart is so broken,but it doesn't stop. it just goes on and on and on.... i know you all understand this terrible empty and yet painful feeling. i'm just beyond sad,if that is possible. jav
Goodness Jav!!! I can see why you are feeling overwhelmed...... Happy Birthday! And congrats on your daughter's wedding. Is there anyone who could watch your husband so you can have some you time for YOU today? Sometimes, we just need the release crying can bring. If you can't get any alone time, perhaps you can do what I have done when I needed to cry but couldn't be alone... I would go in the bathroom, take a shower, and just let the water drown out my crying. I am so sorry you are going through so much. It is so damn hard, we all understand and are here to support you ((hug)) ~Nikki