It is hard to tell what stage my husband is in. I am going to say around beginnings of stage 6. But not always, as we all know some really good days and some really bad days. On bad days seems like really into stage 6. He has in the past gotten up and not been able to find the bathroom and urinated in the garden tub and sink. this does not happen all the time. Maybe 5 times in a year. He over the years has gotten up and started out of the bedroom. I put a night light in the bathroom and that helped for awhile. He has gotten up 4 times in the past week at night. He has been really out of it and not remembered any of it. Then his mother was taken to the emergency room yesterday. We were sitting in the ER waiting room and there were maybe 5 other people in the room at the time. He looked at the area where no one was sitting and said who are all these people. I said what people. Then I thought he is seeing things. I pointed to the people at the other end who had gotten up to leave and asked if he meant those people. I said we are in a waiting room and people will come and go. He seemed fine with this. He talks to himself a lot. I don't know if he is talking to people or himself. The other night he got up and I asked what he was doing,he was in closet. I was still in the bed. He said well you are in here. I said no I am talking to you from the bed. I don't know if he is seeing things or not. And can they have sundowning sometimes but not all the time? Can it come and go? Are we on the beginning of really bad times?
I also need advice on his medicine. I let him fill his weekly container and I check it after. I go up everyday to make sure he has taken it. He has missed days before and when I tell him he moves it to an empty day and says that he did take it. He has taken 2 days in one day twice this week before I could realize it. He gets angry when I talk to him about it. He will not let me help him with it, by getting it for him daily. They tell me the aricept is not working anymore, but to still give it to him or he could slide down as if he never had taken it. So I am not worried if he misses a day. I am worried if he takes to much, because he became very sick when they increased him to the 23mg aricept. How do you all deal with the medicine issue?
Needless to say, I am very tired. I have not slept well in over 5 years. I sleep very lightly so as to hear him if he gets up. I do get so quiet time when his family takes him for a day. Now I am afraid for him to go to his moms. I don't know if she has problems if he would call 911. She is 83 years old. She does enjoy him coming over. I have also had some time where they took him for a couple of days, his mom and his sister. But we all know one day at home wipes out all that rest.
jackiem, After my DH took my pills twice I never let him take his pills unless I gave them to him. We both have the weekly containers and even putting his name on his didn't help so I put his by his coffee cup so he would see it each morning. I would still check to make sure he had taken them. When he started sleeping longer I would take his pills into him at 8.00 each morning and give him the evening ones at 8.00. He sometimes would turn the wrong way to go to the bathroom or his bedroom so I would have to turn him and point him in the right direction. I don't know if he saw things that weren't there but he couldn't see anything that was right in front of him. He has now been placed and has gone from ALF to a geripsych facility, He has been there one week and I was told they are usually there for a week to ten days. I am hoping they get his meds adjusted so he can go back to the ALF. I am sorry I can't be of more help to you but someone will check in and be able to help you more than I. Good luck and God Bless.
Hi Jackie--given the other symptoms you are describing, I'd say it is absolutely time for you to take over the dispensing of his meds. I hope that can be done without hurting his feelings, but he sounds like he's easily to the point of goofing it up badly, even if he seems to get it right often.
Staging is very hard, and largely unnecessary, but it seems to me that once they start rolling into the symptoms of stage 6, things sort of snowball.
JackieM29 The one thing for sure with AD is that each patient is unique. I think if you go to the Fischer Scale of Evaluating Stages of AD you'll see everything you've mentioned is typical of one phase of another. No one fits perfectly into a stage. You will find some comfort in the fact that what you are encountering is just normal progession of this horrible disease (the site link is below)
I would suggest that it is critical that you take control of his medications, it's important that they be taken on schedule each day. I understand the difficulties that you face trying to do so. Your DH is no differenet than most of us, we want to keep control of our lives. AD doesn't change that, so now the question is how to gain control of his meds. The way I did was to communicate with reassuring not directive words . I found that my tone of voice, loving and caring rather than direct orders won the day generated the understanding reassurance I was not a threat to to DWs independance. You have to present DH with the illusion of control like asking him to show you how to fill the pill box. Ask him where he keeps it. Tell him you want to know when he takes his meds so that you can be of more help to him, perhaps by getting the water or whatever. The last thing you want is a debate or confrontation over this which will make him more fearful of loss of indepenance.
Regarding the Aricept 23, I don't think I've seen anyone on this site say that it was anything more than a marketing scheme to fight off the generics. I'm not aware of anyone saying the higher dose was a benefit vs the side effects encountered.
Hallucinations are quite common with AD patients The experts general rule of thumb is, if the hallucination doesn't bother them and get them upset don't you get upset about it. If they are reacting try to distract them, assure them you are there for him. The one thing you can't do is get into a debate about the reality of the hallucination. Just go with the flow it's all part of AD. I hope these tips are of some help. You must be exhusted and now facing the loss of the time with his mom. Know you''re not alone. http://www.alzinfo.org/clinical-stages-of-alzheimers
Jackie, youe husband sounds like he is about same stage as mine. Yes, sundowning is worse some day than others. I definitely do not let my husband take care of his medicines. In fact, I make sure he has swallowed them all, they can be crafty about fooling you.He also gets up at night but doesn't remember it.I have hime 24/7.No help,he refuses to be with anyone but me but me.My only time away from him is if I am in the hospital.He really has trouble finding his way around the house in the evening.I give 10mg. aricept in the AM and 10 in the PM. seems to work better that way. Also 50mg. seroquel and melatonin an hour before bedtime. Good luck in finding what works for you.
At one time I would fill one of those weekly med trays that had compartments for morning, noon, evening and night. My husband would take out the noon meds and put them in his shirt pocket to take during the week day. Needless to say the situation progressed to that no longer being possible.
It got to the point that I would bring him meds morning, after lunch, and late evening. If I said something like "here are your meds" he would likely respond that he just took them, or that I was wrong, etc.
He loved orange juice so I amended this by bringing him the meds and a fresh glass. I would say to him "YOU ASKED me to bring your meds so here they are with some fresh orange juice". There was rarely any discussion but if there was I would say that I would stand aside and look out the window and he would comply. After the meds were taken I always made a point of smiling and saying "Thank You".
I agree with marty about the aricept dosage. My husband had more delusions than hallucinations and one of the most difficult lessons for me to learn was to never reason with him about them.
When my dh had delusions and hallucinations I just agreed with him like I was experiencing the same thing. Didn't happen very often...the worse was when the men in the garage were coming into beat him up. I went to the door from the house leading to the garage and yelled at the "men to get out of our garage NOW"I My dh got such a look of relief on his face and I told him I had chased them out of the garage and no need to be afraid....I would take care of it.
Also, my dh had done very little sundowning...mostly because he has been sleeping most all day every day for months, but the few times he did...I gave him one half of an ativan...and it calmed him right down and of course made him sleepy...but that was nothing new.
Jackie, I think you've answered your own questions...your husband is not reliable and cannot be trusted to take his medicines appropriately. There are several ways to get him to take them. Some use applesauce, some pudding, some like the orange juice or favorite beverage (for DH it is diet coke) but in any case you need to manage his meds now. Paul's suggestion that you tell him your helping him is a good one. I tell DH his meds keep him strong and are responsible for his excellent health (no other conditions/illnesses except FTD). That always ensures he will take them with no problems.
This may sound terrible. But, once my dh got to where his memory was really bad and I had to get control of some things that he had always been in control of I knew it would result in an argument. It happened time and time again. Then...like a light went off in my head. I realized he could not remember from from one day to the next...so it did no good to keep telling him he could or could not do something.
So...the best way I found to take control of these things was to firmly...nice does not work when they can't remember...at least not with my dh....I said....."OK if you don't do such and such then you will have to be placed in an assisted living because I can't take care of you any longer and I can't be responsible for your behavior. (especially meds.) That statement always seemed to work and it wasn't very long and he began to accept the fact that I was now in charge and he fell in line with that fact.
I think we forget that telling them they can or cannot do such and such doesn't register and can't be remember. In my book it is best to be firm in the beginning and get it over with. Example: My dh always got the mail and opened it...then he began throwing it away before I saw it. I had late bills. There are just a number of things like that you have to get control of.
I have to dole out my husband's meds breakfast, dinner and bedtime, and his aide dispenses the noontime pills. It used to be that I hid the box with the meds where he could not get them, but now he has no interest in getting them and taking them on his own.
I also have to closely monitor his shots - or he would be giving himself his MS shot (which is 3X a week) instead of his insulin (daily). He often takes out the wrong equipment - the lancets for his blood sugar testing when he really needs the needle for his insulin. Everything has to be monitored.
Meds are very important and you need to find a way to take that duty over from him. I make a big show of dispensing a week's worth of meds each Saturday, placing the pills into the boxes. I tell him it is very complicated, and I keep a spreadsheet to check off each med. He is impressed and says he is glad I do it!!! [I try to make it seem more complicated than it is!]
I guess I was lucky? My dh asked me over a year ago to help with his meds. He has pills four times day. Just tonight he asked what all those were for at supper time. I always tell him his az meds are for his memory. We do have an up to date list in each of our wallets because he goes to different doctors for other things than az and of course they always want to know all the meds he takes. He no longer remembers where the bathroom is even in our bedroom and it is right there through a doorway. Even a bathroom by the utility room which is near where he sits he can't seem to remember. Terrible disease!!!!
I guess i was lucky, before they let DH out of the hospital this last time the evaluated his ability to do all those tasks in occupational therapy, then they told he was no longer going to be able to do those things , showed him the errors in the " follow the directions on the medicine bottle test"and he has not handled his meds since. I have to laugh though because on one trip to the doctor , the doctor asked him do you know meds you take Robert? And he said yes. So the doctor said ok what are they, DH replied in all seriousness "what ever my wife gives me." LOL
Guess I am really lucky,I have always taken care of giving my husband his meds,as I said before I have to be sure he has swallowed them(just like his Mother did before him)Rught now my biggest problem is he has trouble finding bathroom but we lived in same mobilehome for 45 yrs. and last fall built a new home so that is a lot of the problem.I am going to get direction signs like they use instores and try that to help.Also,because he was away from home a lot I always handled all finances and decisions,he was happy with that as long as he had quite a bit ofspending money in his pocket.Now even, he never asks me anything about money,just assumes we have enough to live on.(I worry about that)my biggest worry is that since we live where ther is no public trahsportation and almost all the people in my area drive a horse and buggy,what do I do for transportation since DH doesn't drive any longer.There are Amish taxis but they tell me they are not supposed to drive 'ENGLISH"But I'm sure something will turn up.