Help! I'm so frustrated I don't know what to do. DH probably in stage 6 with Lewy Body Dementia. Over the past year he has bee sleeping longer and longer each night. First 12 hrs, now 15 or 16 hrs. It's 5pm now and I've spent the day watching him sleep, get up to use the bathroom and back to bed. We've checked his meds and the doctors don't think it's that. He's on Excelon, Namenda, a BP pill, celexa (same dose for years). It's driving me crazy. Should I force him up or is this just the disease. I've quit my job to stay home and here I am, watching him sleep. His spirits are good, not angry, just smiles and says he's tired and wants to sleep. I wonder how long he'd sleep if I let him. I know sleep disfunction is part of LBD. Is that what it is? Thanks for any input. Nancy
I was concerned about the all day sleeping also. I talked to his neurologist and he said it is just a phase of the disease and "normal". He will sleep most of the time for a few days and then he gets back on a regular schedule.
DW sleeps through the night (except when I wake her up to go to the bathroom) and would stay in bed well into the morning if I didn't get her up. She does this even after 3-4 cups of coffee (NOT decaf) with dinner. Then if nothing is going on during the day, she will sit in her recliner chair and go to sleep. I usually try to wake her up when she starts snoring. Several months ago she would start agitating to go to bed around 7:30 or 8:00, but now she willingly stays up until I go to bed at 10 or 10:30. I think part of it is that she is bored because there is nothing she can do to entertain herself.
Since I never agreed to go on "Strike" writing this is OK
Marsh, I think this is a major problem. What can we do? They can only watch so much TV--living in an apartment, there are only so many halls to walk--bingo twice a month isn't a lot of help. What is there for them to do but sit and sleep?
As soon as you get used to them sleeping most of the day, they'll change: they will be active, not necessarily agitated, all day long, and THEN you have to find tasks to distract them. Remember, they're regressing; for a toddler, sleep is maybe 16 hours out of 24.
Lori, I can't think of anything (we also live in an apartment) so I try to take her to things here that I think she would enjoy - decorating Christmas cookies, decorating the Christmas tree, etc. She doesn't like Bingo. Also, I have her go to Adult Day Care three times a week where they have her doing various things, such as jig-saw puzzles.
We're on our way out for our nightly 10 minute power walk. Since we both have good knees, we do both staircases to the third floor at a good clip and walk all the halls twice--at a pace fast enough to get us breathing heavy. We've also started doing this at a more leisurely pace in the afternoon--more apt to see people in the hall to stop and talk to.
We can't do that because DW is having trouble walking. Last year we took walks on trails through the woods. Now I have trouble getting her to the elevator and she resists doing stairs (which means I don't get much exercise.)
My DH also sleeps a lot some days. Other days he paces from one end of the house to the other. It drives me nuts after a couple of hours. But I can't make him sit down. All this courtesy of Alzheimer's
Same with mine...either sleeping all day or wandering around the house picking things up and moving them or breaking them! And no medication that we've tried so far has had any effect on it...except the ones that put him out so I couldn't do anything with him.
FLgirl, his doctor told me that the only way to calm him down and keep him from pacing and checking everything out is to up his dose of meds. But this would make him like a zombie and that I do not want. So I am trying not to get too annoyed when he paces for hours at a time.
<<Last year we took walks on trails through the woods. Now I have trouble getting her to the elevator and she resists doing stairs (which means I don't get much exercise.) >>
Marsh, why don't you and I (and anyone else who would like to join us) make a pact to get out and walk some for exercise every day -- I've always found it easier to stick to resolutions if I have a partner in crime. I'm also behind on my exercise since Frances is no longer able to walk with me, so today I went out by myself, just before dark, and spent about 40 minutes making several circuits around the periphery of our five acres, picking up a few dead palm fronds and dragging them to the pile in the process. One huge flight of white ibises, in a vee formation, flew over heading southeast toward their roosting place on an island nearby, and then another smaller flight so low that I could hear the swooshing sound made by their wings. A brief, but nice break from caregiving. (Sorry, divvi!)
Mary75, Lori2, we're on the coast in East Central Florida -- a small fishing village called Grant, about half way between Melvourne and Vero Beach -- and it's sunny and in the mid-60s outside now, although a weak cold front is forecast to bring showers and somewhat cooler weather later today. My walk last evening was in shirtsleeves, and we've even been enjoying quite a bit of barefoot weather recently -- no opportunities yet to burn any of the load of free firewood that someone brought us recently!
Gourdchipper your place sounds lovely and relaxing. we all could use some exericise to keep up our stamina these days! good for you-i have a workout gym downstairs and i go to the landing and look down at it every so often..sigh...boring by yourself!! divvi
<<good for you-i have a workout gym downstairs and i go to the landing and look down at it every so often..sigh...boring by yourself!! divvi >>
And I've got a treadmill out on the porch that I can see from my computer chair here, but it never gets used either -- too boring! Is there anyplace you could walk with Marsh and me (assuming he agrees to walk)?
They sleep. It is just the way it is. At this point my husband mostly just takes cat naps, but the last few days his naps have been longer. He just finished one that lasted about an hour. He does some pacing in the early evening but generally settles down again half an hour after supper. He sleeps through the night.
I know how lucky I am that someone at his stage in the disease is mostly have a pretty good quality of life. I know enough from being here to be grateful. We seem to be in a long plateau without many changes. Last year at this time the changes gave me whiplash.
I'm mostly walking inside the house. I have a pedometer and I try to get at least 5000 steps. Doesn't sound like much in a world were we are told to do 10,000 a day, but I've also upped my physical therapy type exercises lately. And I agree, we all need to try to get some exercise that doesn't involve running after our LO.
Gourdchipper, let's agree to walk every Mon, Wed, and Fri mornings from 9:30 to 10:30. That's when I leave DW at day care and go to the YMCA for exercise - 20 minutes on the Arc Trainer, and 30 minutes on the treadmill. Any of you gals are welcome to join us. I had a Nordic Trac in our home, but never used it. Interesting that I will drive 16 miles each way to exercise at the Y, but won't use the equipment in my own home!!!
I don't walk outside much in the winter - too much snow and ice, and too cold. Not as bad as Lori2, but I hear their REALLY cold weather is headed our way.
marsh-I also bought a Nordic Trac. A co-worker much younger than I got hers a week earlier. We were both in good shape. Found the Trac very difficult to balance on. Able to increase work time by only a minute or two at a time. Only good thing about it is that we were able to increase the hill slant for better cardio workout. Here in Florida everything is flat. We are having a severe cold snap-supposed to drop into the 40°s tonight. My knee fracture is 6 days old and I'm already going nuts-want to walk outside. Medical opinion requested-if the patellar fracture isn't complete how long is recovery. Due for x ray tomorrow.
My husband is sleeping 16-18 hours a day. I have been through the check the meds steps. Some were lowered. He is now more alert when he is awake but still sleeping 16-18 hours a day. This seems to be a "normal" part of the disease that some of them go through. I asked some of the aids and nurses at the facility he is at and they also said that some of them do start sleeping a lot.
My problem with all that sleep is trying to be there when he is awake around work hours. I have also found that meal time and just after is when he seems to be more "alert" and that is when I will sometimes get a good sentance. (The moments that we live for.)
OK, marsh, I'll try to match your 50 minutes on MWF, but I'll have to do mine walking outside late afternoons after our son is here to watch after Frances.
I am glad I found this thread. DH usually would go back to bed for an hour or two in the morning and again in the afternoon. Yesterday he slept more than he was awake between his bed and his recliner. He went to bed about 6.00 last night and is still there at 7.00 this morning. I don't want him walking because he has fallen twice in the past couple of weeks with the last one meaning a trip to the ER and getting stitches over his left eyebrow. I am guessing he is getting worse with the AZ and wonder if I should call his neuro. His next appointment is September.
This has to be part of the disease since so many of us are seeing this. MY DH is sleeping longer. My goodness if I was in bed that long I would be stiff as the floor! He goes back about 8 ( it is still light out too) and gets a good 10 to 12 hours. On the one hand it gives me some needed quiet time in the morning to do this, read the paper and now maybe start a walking program which I need to do just for me. But I digress. After he eats and takes his meds in the morning, he will sit at the table and nod off..says he isn't sleeping just " checking his eyelids for pinholes". But later he will go in and watch tv and he is heavily into WWII. He has always liked to watch aviation ( he was a jet jockey in the USMC) and war stuff..any of the wars..Civil, WWI WWII,Korea, Viet Nam. The Gulf wars were not "his " wars they are mine ( I was in during Desert Shield/Storm). Lately it is WW II and he does not recall that he saw this same thing earlier in the day let alone the day before.My big problem is keeping him from ordering the DVDs again..he has sets dups as a matter of fact. So I am working on telling him what he sees is his and it is an ad..I know a sweet little lie for now ( or do we call them fiblets).
well i guess i might just as well give my two cents worth on sleeping. when i asked our pcp about dw sleeping 16 hours a day he asked if it was a problem and i said not for me and he said then let her sleep. so now she sleeps most of the day and all of the night. no exercise for either of us as she won't sleep unless i at least lay down with her for a while. i can't sleep that much so a lot of the night i am up doing whatever just because I can. She is on namenda,ativan and lexapro along with Bp med and thryoid med and her downward spiral is very slow progression. When she is awake she converses and plays games on the computer to stay busy. She still loves to go in the car but refuses to get out and go into any store. The paranoia of being alone only seems to affect her when we are home alone and i go out of her sight. Then she gets paniicky and either follwos me or questions where i am and what i am doing. I just kind a let it go but it is getting tougher. There i said it so now what?
Ah, Mimi, that history channel. We are still in a long stretch of it, but they've gotten off onto antique pickers now. Can't get History International on his upstairs TV. My husband NEVER liked to watch war films before.
Bruce, good to hear from you. I agree with your pcp: let them sleep. I LOVE it when dh sleeps. However, I have really given up going to bed early just to help him get to sleep. I find that neither of us sleeps well then, certainly not me. So I help him get to bed about 9 pm, tell him I have to call my Mom (usually true) and will come to bed later. He goes to sleep right away and sleeps the clock round if he gets the chance.
DH got up about 8.00 this morning and seemed to be more "with it" than he was yesterday. He went back to bed about 12.30pm and slept for almost 2 hours, so far he is okay but is now sleeping again at 5.30pm. I will wake him up in a while so he can eat. I was concerned about him sleeping so much yesterday which is why I was glad to fine this thread and learn it was part of AD and not unusual.
My DH must be the only one here who never sleeps, except at night! He goes to be around 7:00; will wake up when I get in bed around 10:30 or so; then goes right back to sleep, and we are both awake at 6 a.m. Have our coffee in bed. He never naps during the day!
Art only sleeps at night too. He goes to bed around 10pm, sometimes is still awake at midnight when I go to bed but is usually asleep. He sleeps until 9 or 10am.
One other thing I am noticing about the later sleeping is that he seems to be sleeping deeper than before. Once upon a time if I opened the window he would wake, now no so much. Or if for some reason I got up a couple of times he would ask " are you alright?" Or just getting up earlier than he, he would ask the time and I'd tell him it's too early for him to get up i'll be up by 6 or maybe earlier sometimes. I wake up when it gets light.
Anyone else notice that in addition to sleeping longer it is a deeper sleep too?
Yes, yesterday we had an appointment at 9 and to get there takes about 30 minutes. So I got DH up at 7:30 since he could not eat before this stress test. We needed to leave at 8:30. He was ready on time but it took a bit of doing to get him awake..he normally gets up about >>>>> past 8 now but no later than the half hour.
Yes, I have also noticed the sleep being to a deeper degree. Last week my dh was in bed more than out. He would eat at my direction, go to bed, get up, eat and go back to bed. he is getting tired more and taking less interest in things he was doing just a few days before. this sleeping and overall "not being with it" look and actions lasted three days. he was better for two days and it happened again for 2 days. now he is awake more but any more interested in things he was two weeks ago. I am seeing a very bad change.
Sleeping off and on all during the day has become a 'new' trend here as well. It started a few weeks ago and I thought it was possibly caused by medications even though DH had been on the same medications WITHOUT the sleepiness for months. It seems he just sleeps or is in a sort of 'stupor', then he gets up goes outside, takes the dog for a walk or just walks around outside for a few minutes and when he sits back down..its not long before he's 'sleeping' again. If he goes out to sit on the porch he may sleep out there as well. I don't know if he's just bored and sleeps..or if he is having some vascular issues or if its the progression of the disease. Its alarming in a way because it seemed that he progressed from being very active and able to work in the garden at the beginning of May..to unable to do more than walk out and look at it and maybe pick a squash or two. He can't pull weeds or do much without being out of breath or too hot. He had cardiac ultrasound test recently and I should get the result this week. Just not sure..but lots more sleeping going on here too .
Judy, if you haven't, read that article I mentioned here a few days ago from the New York Times about pacemakers and their implications... Everyone, remember that if you don't want to know the answer to a question, don't ask it (as in, might he need a pacemaker/bypass surgery/etc)
Judy, as the disease progresses it is perfectly normal for our LO's to sleep more and more. Mary's husband sleeps 14-16 hours a day. Think of babies. They basically eat and sleep. This disease takes them backward to the infant-like stages. I just thought it made my husband feel better...and he wasn't afraid or angry or confused when he was asleep.
I can appreciate the sleepiness thing too. While it is a bit of a worry, if my DH seems ok in other respects, I let him rest. When he is snoozing, he is peaceful and not going to get into mischief or troubles. My DH does have afib but I doubt there would be any pacemaker or defib implants in his future..too much risk. He is on BP meds and I do think BP might have something to do with sleepiness if it gets a bit on the low side. That is one thing we have to keep an eye on.
namenda did that to hb so took him off. Will be interesting to see what the neuro says on Monday about that move. but would rather have him alert and walking than exhausted with the littlest exercise and brain fog.
no, i cut it back down to 1 a day, then half, then quit. He is much better off it than on. He has more energy (can walk 50 ft without being exhausted), his brain is clearer (still not much short term but can do his word searches again) and his vision has cleared up. Research says 2% suffer these severe side effects.
Charlotte...may I ask how long was your DH on Namenda? My DH is also doing more daytime sleeping and is complaining about his vision. I ask the neuro last week if I could take him off the drug because I didn't think it was doing anything good for him. He said NO NO NO...that he would get much worse very fast. I question that statement and just really wonder if it is doing him any good. I also question whether I want him to get worse faster or slower? That may sound terrible, but it is what I wonder.
My DW is on Namenda and Exelon and also sleeps most of the day and also sleeps through the night. I’ve stopped giving her Namenda in the morning several days ago and have noticed no difference so far. Why do we give them these drugs if it makes them worse? She has been on these two drugs for several years and I don’t know if I should stop giving them or not.
By the time he got to full dosage he was having the side effects. I left him at full dosage for 4 weeks because the neuro said to give it a chance, then messed around with only 1/2 dosage in morning, full at night. then only giving at night, then 1/2 pill at night and still he felt tired and brain fog. After a total of 8 weeks he was off it. Within 2 days the 'brain fog' had cleared up, he could do his word searches and he wasn't needing to rest when he walked the 50 feet to and from the shop. He would rather have quality now and have the disease go faster than quantity. We didn't know about the vision changes until last month when he put his new glasses on and they were clear. That is when I googled namenda read that vision changes were a side effect. I am wondering if part of the brain fog he had were the vision changes too.
I felt bad cause I worked hard to get it. I had read how the two together aricept or galantamine which hb is on with namenda have good results. the VA would not cover it until he was moderate cause that is what FDA as rated it, so she put him to moderate.
My hb seems to be one that if he is going to have side effects, they will show up quickly. When he was put on a statin for cholesterol by the third day he couldn't remember who he had spent the day with or what jobs he had done that day. (we were managing an RV park at the time and he was training the new assistant manager) I spent the night researching and threw them away the next morning after telling him. His doctor denied it could cause memory loss but we knew different. As with namenda, 2% of the people will have the severe reactions to statins.
I agree with the dilemma of faster or slower. If it means quality life and a shorter life, then I will go for that. We have talked about that for years not just since AD. But when he went on Namenda we also discussed it and he hated being tired and not being able to think clearly. And yes he likes that things are clearer with his new glasses now. Yes, he has brain fog from the disease but he says it is different than how he felt on the drug. I would really like to get him into the IvIg study but he doesn't like going through the questions. If I pushed it he would. but then again where he reacts to drugs, would he react to that and be worse off? That was my fear with the BAP study.
My husband (first diagnosed 10 years ago) has been on Namenda for years. He has also become increasingly tired and sleepy, sleeping or resting 23 hours out of 24. It never occurred to me that this could be tied to Namenda. Thank you so much for your stories re going off Namenda. I think I will try it. His quality of life can't get much worse.