My wife has been on this roller coaster. It seems that she will have 2 or 3 good days where an outsider would not think there is anything wrong with her. Then she will have a bad day from the time she wakes up she will have difficulty with most tasks and will tire in the early afternoon and take a nap. She tells me it is like cotton in her head. She recenly had over a week of bad days and I thought that we were now dealing with a new low for a good day. She has recovered again and now it seems that we are back to having good days and bad days like before.
I do, Bob. It's crazy! What a freakin' roller coaster! The problem with my DH is that it seems like the bad days are starting to outnumber the good days. My DH is now sleeping 3 hours every day in the afternoon. I guess it's okay, but so not him! I hate this disease, and I want my hubs back!
Yes to all of the above. G "sleeps" a good part of the day and is constantly asking(yelling) me what time it is. He waits until the magic hour of 5 o'clock when we start watching the news...and he hates TV. I have given up trying to understand it. The roller coaster good day/bad day thing is constant, and one never knows what each morning will bring. As I discussed on another thread, today was the LTC evaluation day and he was extremely lucid..who would know? go with the flow.
yes, it IS one of the most infuriating things about the disease. Mine is now in the shower - at 10 am. The mood he wakes up in is usually gloomy and whiny, but once he's dressed he's usually in pretty good shape. Then after that his mood can come and go over the course of the day, sometimes very lucid and happy, sometimes not. Usually grumpy again at bedtime.
I fully understand all mentioned above! My DH seems to have regressed more in the past week or so. He is sleeping more during the day, which is probably a good thing. A lot of the time he just sits in a chair, doesn't talk, watch TV or anything. Once he liked to get out and walk a couple of times a day but he seldom does that because he said it hurts his back. Took him to doctor and they said he had severe arthritis in his back and put him on Prednisone and gave him pain medication.
The constant roller coaster of ups and downs is one of the most challenging aspects of the dementias. My DH has Lewy Body Dementia (aka Dementia with Lewy Bodies), which is noted for having more extreme highs and lows. Over the last year, my DH has had a rapid increase in the number of inactive days compared to active days. His legs (hips through feet) are very stiff as are his arms (shoulders through hands). The stiffness causes him significant pain. He is also having an increasing percentage of time where he is wobbly (he doesn't like to admit he's dizzy). His gait is becoming more stiff and halting. He fell for the first time the other day, though others have fallen where he fell. I have also noticed that he is becoming wobbly in the shower so I got a shower chair from Lowes (it has a webbed seat with a back and had holds to help him get up). It costs about $75, but worth every penny.
Back to the roller coaster. We have started trying Nuvigil to help my DH stay awake during the day time. Yesteday was awesome. He was more clear than he has been in months. Today, however, his clarity has dropped in half (compared to yesterday where he rated his lucidity a 8-10 and today which he rated 5-6). Last time we tried the Nuvigil (about 2 weeks ago), he was better for 2 days and then got markedly worse for 3 days before I took him off of the Nuvigil. I was not sure if the drop was independent of the medicine or related to him taking .5 mg of Klonopin (Clonazapam). I stopped the Klonopin for 3 days before trying him on the Nuvigil again.
Every time he gets a little better, I can't help it ... a part of me begins to hope he will be better for a while. Of course, that is SO not the case. Good/active days are just that, good/active days and bad/inactive days are just that bad/inactive days. I am just trying to keep myself from riding the roller coaster. No matter how hard I try to stay off of the roller coaster, it takes off again and there I go.
We are not alone.
May God bless and keep you in the palm of His loving hands!
I guess what I find hard to understand is the recovery. I know her brain is decaying and that explains the loss of many things. What causes her to come back. Does the brain rewire itself when it finds bad spots?
moorsb-- Rather than thinking of it as decaying, which would mean rot and be no more, think of it as a huge electrical system being attacked, causing shorts. Some come, some go, some flicker. A line goes down, but later some connections manage to reconnect--if briefly. Bottom line though, the system is failing and eventually will become non-functioning.
I was told the brain is 'electrical', and occasionally there is a spark (as in a short circuit) that reconnects something in the brain,...then it goes away. THat's very very elemental, but I can understand how that could happen.
From my CMT experience not DH's VaD--in diagnosis they test the length of time it takes for an electric stimulus to travel from the point of occurance to a set receiver. Nerve conduction. There is a known rate or rate range that this should take. Fractions of a second. Mine are so slow --- Reason I duck after the tossed ball hits me. Why it taks me 2 .5 hours to do a batch of dishes anyone else does in 15 minutes. I don't do them anymore. I have other places to spend my time,.. <lol> Everytime a message is sent to or from the brain, at every juncture with another nerve the message is passed through a tiny chemical/electrical connection. Break the connections in any way--no more message.
The best way I can understand what is happening is to think of it as a central communication center where signals from the body and within the brain are routed to the right parts of the brain and the body. It makes me think of the old telephone system where the operator would connect the 2 lines with a wire (remember Laugh In?). Sometimes the operator (the brain) connects the wrong lines or can't remember how to make the connection, but other times it connects the lines or remembers how to make the connection ... at least temporarily.
I also think that the brain works a lot like a computer with folders and subfolders and documents. I think that dementia attacks some parts of the brains' filing system so that the actual records containing memories and that enable thought processes. The dementia can break down parts of the system without losing the records, or sometimes the routing system breaks down and is then restored temporarily.
What I do know with all of my heart is that the person that is my DH, the essence of who he is, his spirit, remains present at all times, even when his eyes seem vacant or he is very lost and confused. His heart and soul remain.
This is a fascinating and enlightening discussion. Thanks, all!
That explains a lot of the memory stuff coming and going. But why, I wonder, does the regression to childishness occur so reliably with them all? I really sometimes feel that I'm getting a glimpse of what MY HUSBAND was like AS A CHILD!! rather than just generic child behavior that, if you've had kids or taught, you know how to almost reflexively deal with.
i see it clear and simple briegull as a result of being born we move forward physically developing both skills and brain activity. after we reach the height of our aging our brains start to regress backwards -with AD evidentually the move is much faster and use up whatever good cells are left at a faster clip Backwards. thus we are left in fetal position as we originally started out= since no new cells are produced and we used up what was left. nothing left, even the child like behaviours will digress backwards to earlier infancy ones. just like a time machine going backwards- anyway thats my take on it.. could be a miriad of reasons. divvi
I always think of it as tha last memories are on the top of the brain, and the oldest are on the bottom, and so as the disease progresses, the top flakes off, like when you peel from a sunburn, and more and more of the top flakes off til you are just left with .... well, whatever.
Last In First Out LIFO I was told that there is a break down in the mechanism of the brian to move short term memory into long term storage. They are placed in 2 different areas of the brain. Then they start loosing long term memory. My wife the other day did not recognize the smell of a skunk. I guess smells are stored in the brain. I guess the recollection of visual objects gets lost too. Do some have problems remembering what something is?
I have always thought the brain is busy repairing itself over nite and some days the repair job does not complete in time to start the next day and hence you have a bad day from the outset.
LIFO was a new one on me, too, but I understand it completely. Last week while visiting my husband's family in Michigan, he and his two sisters sat and talked about when they were kids, places they had lived, etc. Very detailed. We also talked at length about meeting the next day at their dad's house at 4 p.m. We all went to Applebee's to eat and when we parted ways afterward in the parking lot, I said to the sisters, see you tomorrow at 4 then. When we got in the car, my DH asked me why I was telling them I would see them tomorrow at 4. He recalled none of our conversation of a couple of hours before about meeting at his dad's house at 4 the next day.
More on FIFO, - used in stocking shelves..to keep the products date-safe. (Or whatever they call it when they want consumers to purchase the older packages FIRST. First one stocked should be the first one sold. II dig back and get the freshest box with the extended expiration date. (grin)
Nancy, I thought everyone did that. The last time I was buying something, the stock person (I don't know what to call him...) was stocking the shelf. When he saw me digging to the back, he seemed totally surprised. Do they really think we take the older stuff that's in front?
Sometimes I take the stuff from the front. Frankly if a can of stuff is going to be good for a couple of years, I don't need to go to the back of the shelf. It is extremely rare that you need to dig in the back with canned goods.
Sometimes I take the stuff from the back. Bagged lettuce always, but other things too. I'll check the milk date (one of the earliest things I can remember with a sell by date) and if it is next week, it is good enough.
Have had several good days this week! Started DH on Zoloft Monday - and he's like a whole different person! Thank God for good doctors who will listen to US!!!He has perked up, but is not agitated, frustrated, sad or any of those things that he was before the Zoloft. Wonder if it will last????......ummmmm
I guess she has moved into a new stage. It seems that the bads out number the good days now. She is just simple minded most of the time now. She can not figure out how to change the TV to DVD anymore. She is also at a lost for words more often. I guess I have to adjust my expectations of a good day now.
Excellent comment - " I guess I have to adjust my expectations of a good day now."
It's interesting how everything is relative. I live in Florida, so if the temperature goes below 80, I think it's cool. Someone in the middle of a Minnesota winter would think 79 is a heat wave. Same with our health and the health of a loved one. In the beginning of AD, a bad day meant that he/she asked the same question 5 times. A good day was when they basically acted normal. As the disease progresses, a good day is when they say something that makes sense. From a caregiver point of view, I find that sad and difficult to adjust to. But of course, we do adjust. What else can we do?
Today at the nursing home, Charlie wanted to get up from the wheel chair and walk. I let him stand and take a step or two then insisted that he either get on the bed or back in the chair because if he fell on me he would "squash me like a bug". He chuckled (for the first time in weeks). To me that was a GOOD day.
I got my old husband back yesterday! I didn't feel well at all, had gotten a flu shot, stood out in the rain and cold to get it and felt lousy all day. I usually don't tell him when I don't feel good because he always "gets" whatever I do! But I did tell him this time. Well, he was so nice all day I couldn't believe it! So good to me. Told me to lie on the couch and he'd light the gas logs in the fireplace (well, he couldn't do that -so I did). Then asked if I wanted him to make me a cappuccino. I said yes and he did! All on his own. Hasn't happened in years! He kept asking if I needed or wanted anything. I couldn't believe the pampering I was getting! But....it was the old husband - not the AD husband.
Of course, I knew it wouldn't last. This morning he's in a pretty good mood but doesn't remember the flu shot I had yesterday (which still hurts). So, guess the pampering is over. Good while it lasted though!
Vickie,myhusband went on zoloft last January,the change was unbelievable.where he was almost impossible to live with he is now happy,sleeps all night instead of rearranging my cupboards at three in the morning,no longer gets frustrated when he can't find something.I hope you have the same luck.
I'm only venting..... My DH is on Fluoxetine (prozac) and it has helped for the past 6 months or so. He mentioned the other day that he feels good, so he thinks he should stop taking it for a while. I about fainted. I think he should be taking more......His ups and downs just about send me to la la land. Saturday I asked him to go with me to Costco because I needed to purchase a lot of heavy stuff and I needed his help. I patted his knee in the car and thanked him for going with me. No comment. He can't take praise or thanks. Just shrugs it off. I tried to hurry through my list as I know he has little patience for shopping so when we got out to the car, he started loading paper products first. I asked him to please not put those in first, that I preferred the water, the boxes of canned goods etc go in first. He gave me a dirty look and continued. I just stood there and waited. He said, "what?!" I said will you take those out? I wanted the heavy things to go in first." He was so angry with me and said, "See, this is why I don't like to go shopping with you. I know how to pack a car!" He didn't speak to me the rest of the day.
I work out of the home in an executive position and I hate to shop, so I have taken to ordering most of my clothing online. When a package would be delivered he would rant and rave until I wanted to pull my hair out. So I started having them sent to my office. I have done it this way for about 2 years now. He "found" a bag in the closet yesterday and the ranting began again. Only this time, "You are hiding things from me. You are lying to me. I can't trust you. I'm hurt and I'm angry." I asked him later if we could talk about it. "NO!"
I read someone's post about missing a woman's touch. It made me cry. My DH never compliments me, never says anything good about me to others, gripes if I move the furniture or decorates the house. In fact he changes things that I put in place. His mother's things "adorn" our shelves even though I have told him it is not the way I would decorate, but I have learned to keep quiet because that is what he likes. I absolutely love to decorate and give things a "woman's touch," but he makes living with him so miserable. It feels like a prison sometimes. We have been married 9 1/2 years and most of those years he has had REM Disorder, Sleep Apnea and Dementia. While I am committed to this "marriage," it isn't really a marriage. I am weary of the ups and downs and the constant fault-finding. It is so demeaning.
This morning I kissed him goodbye, but he pretty much gave me the stony cheek. The bad days far outnumber the good days and I was thinking this morning on the way to work that I need to find an outlet for myself. I come here and realize we are all in the same boat. At least others are going through some of the same "stuff."
Loretta, I agree with you that he needs more meds, not less! (I have no experience with Prozac, but Risperidon has done wonders for us.)
Sounds like he is still functioning very well in many ways. You still regard him as a husband who has a right to make decisions, because it sounds like he has the power to enforce them and to make you feel miserable. The corner that you need to turn for your own sanity is the one where you start thinking: "he's not a man but a child, I know he's wrong but I may have to humor him until I can find a way round" Try to stop worrying about the decorating; it's "small stuff" in the large scheme of things, and you'll get your turn to decorate again, believe me, this stage will pass. But faster if you can get more meds for him, so do whatever you have to do to get them prescribed and in him. You may need to start crushing them and putting in his pudding/applesauce/ice cream, as many of us have. I think your decision to have packages sent to the office is excellent; an example of the kind of thing you have to do. He probably doesn't like your praising him (mine doesn't either) because he thinks it sounds condescending. Would it work better to act like you take it for granted that he is helping? (This works for me.)
Jeanette, Thank you for taking the time. Sometimes a person needs a little "nugget" to see them through a tough time. This is how I felt today when I ready your response.