Up and down. Up and down. That seems to be the progression of AD, as it takes my emotions along on the roller coaster ride. That is the topic of today's Blog, and I'd like to hear your opinion. Am I the only one who can't handle all this inconsistency? Am I the only one who HAS all this inconsistency?
Hi Joan, We have the up and down as well. A week ago, Gord went for most of the day not knowing me. He seemed to really like me, thankfully, but he didn't know that we were married. This went on for most of the day. One minute, I knew that he didn't know me and the next, I wasn't sure. I think that by evening we were back to being married. For the past week, he has been great. I know that I am back to thinking that perhaps this will all go away. I find it very hard to deal with. I just wait to see what question or statement will come out next. Will it be a perfectly normal statement or will it be a question that will just floor me. I just never know and am having great discussions with myself on how to handle it.
Joan, I just read your blog. I am backwards today. You have stated our situation and my feelings exactly. We have a good day and my heart sings....I think that maybe Gord is getting the Ebixa instead of a placebo. The things that were so hard to deal with in the early years are easy to deal with now. It is good to know that we are not alone.
Joan, your words once again echo my feelings completely. Some days we drift along as though everything were normal, usually when the routine is constant, we are on our own, working outside or watching T.V. It's when I get questions such as " where were you during the war" that I am jolted back into our reality or when he doesn't have a clue what day it is even when we have discussed the evening before that the next day is market day or we are talking about a relative and he can't remember the son's name. It is a roller coaster and I never liked roller coaster rides even as a kid!
Lately we have been on this roller coaster, but we seem to be on the downward spiral. I love real roller coasters, not too happy with this one. I'm tired to the anger and the yelling. I think I have a migraine almost everyday from the stress. It's amazing to me how most of the time he can't remember most things, but then obsesses about other things. Why does he remember those things--just to drive me insane? Recently he's had to sign his name to some legal documents; he's forgotten how to spell his middle name and put two r's in row on our last name. It's so sad. I'm already tired of this and we have a long way to go. Not a good sign.
Carol, I have kept a daily log of Gord's condition for the past year. I recently read it and found to my surprise that what seemed to be a forever downward spiral had turned upward and has basically remained at a pretty good level for several months. I am just worried that the bad months coincided with the winter months. Hopefully, not. Maybe you are due for an upward trend. I hope so.
Carol, how I can relate to your words! The obsessive thing is a function of AD as I have discovered and it can drive you mad! We had the same thing with the signature. It was so sad to see a man struggling with signing a name to a document. He became very depressed about that and then practised writing his name for days. This is especially hard since he is at a stage where he still remembers how competent he used to be. I do my best now now to avoid those situations as I do all the financial stuff and anything requiring a signature. You are right. It's so very sad.
We went to the Memory Clinic today where Gord is in a study for Ebixa. I was so happy that things have gone so well for several weeks. Around 4PM, Gord began crying...he hadn't heard that his mom and dad had died until long after they were gone. In reality, we missed his dad's passing by minutes, helped plan the funeral with his mom and of course attended the funeral. We were with his mom when she died. They died 17 and 5 years ago. After his shower, he asked where everybody else had gone. Then he said he had to go home. He is still insisting that he doesn't live here. It is just so frightening the way they can turn.
I can feel the roller coaster ride like many of you. I have NEVER liked coasters of any sort and this AD is no exception! I can relate to the daily forgetfulness and short term mostly gone...then when I least expect it he gets obsessive about some little thing and he REMEMBERS when I least expect it. I too have lots of headaches. Somedays, I just want to go far, far away. Then reality brings me back to one day at a time. I did not know that obsessive behavior went with AD. My husband was diagnosed with OCD years ago when he had a back operation and it affected his ability to urinate. It's a long story, but the Urologist sent him to a Psychiatrist and the OCD behavior was diagnosed. Through the years before AD it manifested itself in his hoarding and his workaholic behavior. Now he can't work and he does not remember where anything is, so he really doesn't hoard stuff. But he does become obsessive about other things now. This disease (as I live it daily) seems so unpredictable. I have been really sad today. Not for any particular reason, just sad. I get so tired of being so nice all the time and keeping the house running and all the errands and making sure EVERYTHING gets taken care of. He doesn't want me out of his sight. And those same stories over and over and over. I am so worn out constantly being on task, I feel like a machine that needs oiled. Sorry folks, I just needed to vent.
Amen to the last two comments! People just don't get what we go through on a day to day basis. I'm right along with you Jayne when you say I'm tired of being patient and kind all the time. I do pretty good most of the time responding to him in a kind way, but last night I just lost it. Then cryed myself to sleep over the guilt.
We all "lose it" - don't beat yourself up about it.
Odd thing about people not understanding and not recognizing that anything is wrong with our spouses. I have been complaining for 2 years that no one could see what was wrong with Sid. Well, now they are seeing it, and I'm just as miserable. Somehow, other people's acknowledgement is telling me that the disease is progressing.
We haven't been here in SF since January, and now that we are here, my son and daughter-in-law say his confusion is obvious. My cousin back home said the same thing to me last week.
Then, all of a sudden, he will remember something perfectly. I, too, hate roller coasters. Haven't been on a real one since I was 14 years old, and I'm not happy to be on this one. It's wreaking havoc with my mental and physical health.
Some days a roller coaster couldn't keep up with all the emotions we go through. Yesterday morning was the first time in over a year that I yelled at my husband. It wasn't his fault he couldn't understand what I wanted him to do so I just did it myself which made him feel worse. As I was leaving for work I quickly had to devert him to something else and make everything ok before I left. All day I felt so guilty knowing in my mind that he didn't even remember but my heart wouldn't let me forget. Like you Joan I haven't rode a roller coaster in many years, loved the thrill of them but this one it sometimes makes my heart stop.
Well here is my ride , it is now 3:00 am I cant sleep as I took a nap late afternoon..I don't sleep well anymore because Larry tosses so much anyhow..The thing is I was playing a game on the computer a bout an hour ago and the dog wanted out I let the dog out put the dog back on the bed so as not to wake hubby up...Then all of a sudden the bedroom door is slamming he is telling the dog FINE I will put you out !!! I said he just came in from out side. Larry gets well the only way to explain it is snappy, about SO SORRY to disturb your computer game....He is dreaming more and I really am beginning to think he needs haldol or something he says he dreams that I am mean to him that I wont let him up....Has anyone else ever dealt with this? Renee
Hi Renee, When we first started this road in 2003, Gord was on Aricept for a year. During the year, the dreams got worse and worse. He would sit with his head in his hands and cry that he was going crazy. Stopping Aricept seemed to stop the terrible dreams and other than one morning this past week, he has not been bothered by them since.
My husband is in his 4th year of the diagnosis. I knew at least 3 years before the Dx that something was wrong. Medication has helped to stabilize the disease but the constant roller coaster ride is having its affect on me. My husband likes the attention he gets because he isn't able to do things like before. He introduces me as his nurse. If I tell him his jobs around the house, he may or may not do them. He might vacuum two weeks later. I don't know if he is forgetting or is just controlling that he does these jobs on his time. I don't know what his schedule is because it is ever changing. He might be 'normal' for a week or two and then a sudden change moves him to where he needs assistance remembering appointments and his jobs. I then begin helping him only to have him yell at me a week later for not letting him do anything himself. He acts out yelling at me and calling me names. I cry and think really bad thoughts about myself. I don't want to go on medication simply because he has a disease but I don't know how much longer I can tolerate the ups and downs of this disease. He is on the phone a lot calling everyone he knows. How do I learn to tolerate his outbursts and ever changing schedule that is driving me to tears every day.
Welcome zbusybee3. Sorry you had to join us but this is a great place for support and education (none of us really wanted).
I am fortunate that so far my husband has been on a steady slow slide -none of the swings you describe. I do know as far as doing things - dishes vacuuming, etc. - I don't ask. If I do sometimes he will, more often not. Once in a while he will do the dishes. After my shoulder surgery in October there were many things I couldn't do. When I would ask him it was about 50/50 he would help. I find if I don't expect him to do anything, then there is no let down. The only thing he will do without being asked is fold his clothes and put them away.
I am on a low dose of Wellbutrin. I had to do it for stress. If I forget to take it later in the day I will notice my lack of patience, understanding, able to deal with it or whatever you want to call it. So, I do need a low dose. If you need to survive this disease, then there is nothing wrong.
As for my husband he has been on a low dose of sertraline for a few years now. I try skipping a day with him and notice a difference - he is more antsy.
You might have to talk to the doctor about something to mellow/even his moods out. Which AD drug is he on? Does he have other medical issues besides AD? My husband is perfectly healthy except for his brain.
I also think that your husband sounds like he needs medication adjustment. The key to managing the Alzheimer behaviors is the medication, although it's an art not a science, and you'll probably go through a lot of trial and error trying to work with the MD to get a medication regimen that works.(For a while, at least.)
zbusybee3, I recommend simply having low expectations for his participation. The changes in his cleaning can reflect that while there is an overall decline you can see short-term improvements and declines as the brain struggles to recover and have more losses. Don't be concerned so much about his intentions because then you might see this as something you can fix or he can control.
Hi zbusybee3 and welcome to this site. I agree with paulc about not expecting having you husband to do his jobs around the house or to behave consistently. This is a very hard stage of the disease because he is capable of doing things adequately sometimes but neither of you can predict when. When you say your husband is on medications to stabilize the disease, are you taking about Aricept/Namenda or are you taking about mood stabilizers? If it is the former, you might want to look into getting something like Ativan for him to take as needed. If you also would benefit from medication, I don't see what's wrong with that.
Before AD hit, my husband was mechanically adept and handy around the house, including domestic chores. But that turned into a deficit as the disease progressed because he would screw everything up. Understandably, he became frustrated. Over the years I survived by psychologically distancing myself from my role as wife and taking on the role of manager. I did not let my husband know this, though. I tried to always act calm and cheerful and to avoid making him feel inadequate. Our relationship completely changed from being a two-way street to being one-way. I expected little or nothing from him because he could not give it. As I lowered my expectations, things became easier.