Dh is 59 this month. I would say he is stage 5-6. When he was first diagnosed going on 2 years now, he got so bad so fast, I was afraid that if he continued at that downward pace, he would be dead within the year. For the past few weeks he has leveled off and what seems strange to me is that he seems better. I don't mean all better. He is brighter, talking better and carrying out tasks better. Can this really happen? Can't be medication because I took him off the Namenda and Aricept because I blamed the changes in him on the medication. Has anyone experienced this? I know I shouldn't get my hopes up but if he would just stay at this stage, I could handle it.
Mag - how long ago did you take him off the medication? My husband had 'brain fog', exhaustion and vision changes from it. All he wanted to do is sit around. They went away when he stopped the Namenda. At least they did for a while. He is to the place where it doesn't take much to make him tired now.
Another thought is that the disease may have stopped destroying in the area it was allowing temporary rebuilding. I read where they will form new memories until the disease destroys faster than they can make them. Right now my husband makes new memories that last for a while but I know one day that will cease to be.
I agree, Charlotte. After I took DH off Aricept and Namenda - the "fog" went away, he was much clearer for several months. He is now declining again, but still doesn't have that fog to contend with.
Mag, that's where I am - if he will just stay this way, I can certainly handle it. But we don't know - from to day - it's a guessing game and a rollercoaster!
This past week I have had 2 positive changes and 2 negative. For the positive: One evening she commented to the woman getting her to bed that she did not laugh as much as the one who got her up in the morning. It's true that the one in the morning did laugh a lot. I haven't seen any other indication of memory more than a couple of minutes. Then yesterday she got up and started wandering around the apartment. I followed her and found her in the bathroom, having pulled her dress up and depends down, sitting on the toilet peeing. She has not done that in months. For the negative: twice during the past week she has become incontinent of bowels with no warning, greating a big mess. I have not had to deal with this since we adjusted her diabetes medication 1 1/2 years ago.
i dont know what it is either, but even in late stage 7 mine becomes much better after a round of antibiotics. every time after a massive dose, for at least 2wks hes so much more lucid than normal. it astounds us all, hospice workers included. he uses words that seem to have been forgotten and can link a few words together. his walking improves as well and he sleeps less. so i think maybe it has something to do with the immune system recouping and able to begin functions again and possibly like charlotte said reproduce some stem cells if thats possible. we also experienced the brain fog that some of the meds can produce. once off them they seem more cognicent for a while til like vickie says they begin the spiral down again. its a yoyo game of up/down. divvi
One of the theories going around about AD is that the initial cause is inflammation. If so, maybe for your hb the round of antibiotics cuts down the inflammation allowing the temporary improvement. Food for thought. Whatever it is - nice to hear.
The past week as been the worst ever, so I'm wondering if it is the Aricept (5mg for 1 year) and / or Respirdal, only been on Res. for a week and seems to be worse not better. Reading this thread, I'm agonizing if i should take him off the meds and see if there's any difference. Seems to be in a fog all the time, rages about little things, threatened to burn the house down, nearly put his fist through the glass sliding door...says I'm doing things behind his back. We tested and bought a new car, DD was with us, he agreed, no sooner we were home and he didn't remember a thing, says he wasn't even there. Just everything confuses him...can't talk to him. I don't want to do this anymore...can't cope with it all!
Julia: Been there and said that. "I don't want to do this anymore...can't cope with it all!" Hang in there if you can and things may be better in a week or two. We never seem to know if it is going to get a little better, level off or get worse.
My dh's neuro took him off his black box drugs about a month ago and he seemed so much better, now he seems to be going back to being paranoid. Two bad spells this week and that is what I have a difficult time coping with. You might want to take him to his dh and get him some medication for his rages. The drugs really do help and I will be calling my dh's neuro next week if he has another spell and put him back on the drugs. I know some do not want to put their spouses on these drugs, but it is for my welfare as much as his. Remember, their reasonsing button is broken so they really don't understand much or remember much.
Thanks JudithKB...trying so hard to hang in. We see his Geriatrian next week, I'll have a word with her then. Just never know from one minute to the next what he's going to be like. So true, it's more for my welfare so I can take care of him, at this rate I think I'll go down before him. I'm finding it's best to take him out to pass time, because he's so much better when out and will talk to anyone in the shops, so friendly, one would think there's nothing wrong,...but nothing is gettiong done at home!
Meg we too stopped the Namenda and my husband can now fed himself-shave -feed the dog -watch tv-smile and actually talk to me again.I dod not know if it is partly due to the meds or not,but like you while he is surely not "well" he is much better and I feel I can survive this!
I agree that the psych drugs benefit both the patient and caregiver. My husband is content when he is on the right meds; without them he would have absolutely no quality of life because he'd be angry all the time.
I stopped Aricept with my husband in April. I've also stopped Keppra and Depakote because he was completely out of it on those meds. The doctor wanted me to give him 5 Depakote sprinkles at bedtime and none the rest of the day. All that succeeded in doing was making him wet the bed every night. Not worth it. The Keppra was for seizures. He's had only 3 since April and with the Keppra he sits ariund totally out of it with his mouth hanging open drooling. I definitely want more clarity for him than that. I've tried to stop the Nmaenda, but he seems to do better with it than without it. Julia, none of us want to do this anymore. I just try to no think about it and just do it.
I stopped Aricept with my husband in April. I've also stopped Keppra and Depakote because he was completely out of it on those meds. The doctor wanted me to give him 5 Depakote sprinkles at bedtime and none the rest of the day. All that succeeded in doing was making him wet the bed every night. Not worth it. The Keppra was for seizures. He's had only 3 since April and with the Keppra he sits ariund totally out of it with his mouth hanging open drooling. I definitely want more clarity for him than that. I've tried to stop the Nmaenda, but he seems to do better with it than without it. Julia, none of us want to do this anymore. I just try to no think about it and just do it.
It just gets harder and harder Linda...one good day and 6 not so good. I don't know if the Aricept 5mg and the Respirdal is helping or not...since talking the Res, I think he may be a bit calmer, but he seems to imagine/ halluncinate more, some things he comes out with just stops me in my tracks, and I don't know what to say to him....if I say anything, he looks at me like I'm stupid. I'm very fast learning and accepting that his reason button is broken, and not press a point anymore. On good days I think, if he stays like this I can do it..I can get through this. As you say...try not to think about it and just do it
My DH has done very well (except for short-term memory) on a combination of Namenda and Seroquel. The aggression, anger and other things went away on this regimen, mostly, I think,because of the Seroquel. But I was warned that it wouldn't last forever. I can see now, a little bit, that some of his anxiety is returning. I can take that. But if the paranoia comes back and I have to deal with that, I don't know if I will be as strong as I am now. All of my stress two years ago was because of that. He is now obsessing more as well. I mentioned in another thread about the fallen leaves around our property. Even though the men told him they would clean it up, they're not doing it yet and that isn't fast enough for him! All I can do, even though I am working, or trying to work, on something much more important, is calmly tell him they'll be back to finish up and if they don't, we will get someone else to do it. Mentioning that the bank worries were more important than the leaves was something I should have said, because now he's mad at me.
My wife has never gotten back to where she had been prior to a recect decline. Some declines have been gradual, while some have been sudden and deep, which I refer to as 'falls off a cliff.' When she stabilizes, it may be for a period of days, weeks, or months until she experiences yet another decline ... and she is always worse off after each decline. She has sometimes has experienced what I refer to as an 'awakening' ... a period of a day or two when she seems to have regained some of her former enegy, language skills, clarity of thought, etc. But this 'awakening' has never lasted more than a day or two. Each time my wife does level off after a decline or fall, her cognitive and executive functioning skills are always lower than they had been before that decline or fall. Always. I have yet to see how any medication or change in medication has affected that pattern, a pattern I have now observed for several years.
I can't take this! I had sort of a time table in my head(I know, big mistake) but he was acting like he was getting worse by the day, losing weight, couldn't even get up off the couch without help, looking very gaunt and sickly. At that rate by the end of this year he would have been bedridden...but now...he is acting like he got a second wind or something. He is eating more and more active. He even walks better than he use to. Yes, he does still get pain and sore in the evening but nothing like a few months ago. I want this to be all over with, I am not able to take care of him anymore and when he acted like he was going to die any minute I thought I could manage for a short period of time but now he is acting like he could live for another 10 years and I can't stand the thought of living like this for another 10 years.
Deb, you are clearly under too much stress. I am so sorry this is so difficult for you. Is there a way you can possibly place him? It would give you the break you need, and possibly help you become closer and find some peace.
This disease is such a challenge to understand...there is no way you can pace yourself..knowing the end but unable to see the journey ahead..my DW seemed like her old self when we talked today..nothing like yesterday..and likely not like tomorrow..even when they are placed and receiving great care..the challenge continues.
tom, you really hit the nail on the head...."knowing the end but unable to see the journey ahead." Some days my DH almost seems like his old self and other days, it's really bad.
Deb, I'm feeling the same way. Just had two horrible days, sundowning all day, got angry and punched the fridge, put a dent in it....today he's like his old healthy self, he could go on for years like this. He's still too aware to place him yet, he'll hate me, and I would not be albe to live with myself for that..His birthday is in April, hanging on to see how he is then..
Nikki, I am looking into the VA home in New Mexico and called to get the application process started but I don't see how he could be bad enough to qualify yet. But I am still going to go through the process. I know that most of the amazing women here have been handling this so much better than I am and I feel very embarrassed for having these feeling but I can't seem to help it. Even while I am feeling like I do I try to not feel that way but it is just too much too much. I guess I am not strong enough!
tom, I would be the one who always wants to map out every step of the way when I go on a trip and when I can't do that I get all cagey.
Deb, I wish I knew what to say to comfort you. As I was just saying in response to Joan's blog, I strongly feel we do ourselves a severe injustice when we try to compare ourselves to others. This is your journey Deb, with your own unique set of circumstances. Your own personal and emotional pain. You just can't compare that to anyone else.
You have done all you can, for as long as can... that my friend is true strength!! You have NOTHING to feel badly or embarrassed about!!! Nothing!
I hope you are able to secure a place for your husband at the VA. It is still so difficult, but some of the stress will be lifted from your weary shoulders. I hope you will soon be able to find some peace Deb… ((hugs))