I am interested in how much sleep other's spouses seem to need. My husband is taking 50 mg. of Seroquel daily, but even before the Seroquel he started sleeping a lot during the day. He gets up at a decent time (around 9:00am) and stays awake for about two hours. If we have a Dr. apt. or errands to run he manages to stay awake, but is exhausted when we get home. On a typical day at home, I wake him up for lunch and some conversation, TV news or weather (he doesn't read the newspaper or anything anymore). After lunch he is back to sleep, sometimes for the whole afternoon. I wake him up for dinner and the same thing. Eat, some conversation and/or TV and back to sleep. I mentioned this to the Dr. when he first started on Seroquel and the Dr. said cut it back to the 50mg. She (the Dr.) had him built up to 100 mg. per day. I have even skipped the Seroquel to see if he would stay awake and he still sleeps. I asked him why he sleeps so much. He says "It's to escape."
He also roams around the house at night when I am asleep. He does not go outside (yet), but he eats whatever he finds in the refrigerator when he roams at night.
Is this part of Stage 6 AD? Although this gives me more time to do what I need to do, I am concerned. He was a workoholic all his life.
My husband got by on 4-5 hours of sleep a night. He now gets 7-8 hours and will have a nap in the afternoon or morning. He says the drugs wear him out and typically he gets tired within one hour of taking them. He to was also a workoholic and would typically work 60-70 hours a week. He now does everything at a slower pace.
I've been wondering about this also. Sid, too, was a workaholic his whole life. He was like the energizer bunny - never stopped. Like Trish's husband - 60-70 hours+ a week. My thought was that he just wore himself out, and the diabetes is ravaging his body. But maybe it is also the AD. He does one thing in the house - like make a salad, and he seems worn out. He spends most of his time in front of the TV, which I attributed to boredom - he doesn't really have a lot that he can do to keep busy. joang
I've wondered about the tv-watching being a symptom of boredom too, but I have another theory--I'm sure that living life with an impaired brain which makes every small action that much harder must be somewhat exhausting at times. It probably takes more recharging time. Jeff has always used tv as a way to vegetate/recharge, and I suppose, like a worn down battery, he takes longer to recharge nowadays.
Jayne: My dh was on serorquel for a short time and did sleep a lot and seem to be in a fog when he was not asleep. He was put on resperdal and was better. His doctor cut it down to .5mg this spring as he was bent over and shuffling when he walked(a side effect). As for sleep, he sometimes gets up in the middle of the night and roams around and eats what he can find. Of course I have to get up also, so no more sleep. He was up at 5 am today. I think sleep paterns change in stage 6, where I think he is right now and maybe your husband also. He rarely sleeps during the day, but watches tv a lot (or at least it is on). As for me, I stay sleepy most of the time. Sometimes have to nap in the afternoon. So far he does not go out of the house (only on the deck), but am thinking I might need to secure the front door now. Have your taken care of the locks yet? Something else to take care of!! It is hard to function when you do not have enough sleep. I don't know how he does it, with the amount of sleep he gets these days. Darlene
Bill takes 25mg of seroquel in the morning and 150mg in the evening. He wakes up around 8am and takes his med. He is back to sleep in the chair sometimes before he finishes a cup of coffee. Some days he is only awake long enough to eat and then back to sleep. If we have to go some where, he manages to stay awake. Our tv is seldom on anymore because he has no idea what he's watching. He use to watch the same movie over and over because he had never seen it before, according to him. I'm lucky that he sleeps through the night except for a bathroom trip. Jayne does your husband take his seroquel in the morning or at night? The doctor opted for night so he would sleep . He added the morning one to keep him calmer during the day. Darlene, I put alarms on all our outside doors so he couldn't get out without me knowing. They are just cheap alarms I picked up for less than $20 for three. They come in two parts. One sticks on the door and one on the frame with two sided tape. They are loud enough that I have no trouble hearing them. They can be set for a steady blaring noise or just a single ding-dong. There is one on our bedroom door with just the ding so I know when he goes to the bathroom. For some reason he will not use the bath off the bedroom. The blaring noise will continue until the door is closed. There is one door in our house that he tries to get out. I have the alarm on it but he would go out so often I thought I would go crazy. What I did was lock the door and the dead bolt. Then I covered the dead bolt with half a tennis ball so he didn't see the lock. He would try to open the door but couldn't figure out why he couldn't. Now he has stopped trying because the door is "broken and won't open". The tennis ball is still there just in case he decides to try it again. Bill is entering stage 7 so maybe the tennis ball wouldn't fool your spouse, but it could be something to keep in mind.
I know we are talking about how much our LO sleeps, but I've noticed the way Bill lays is different. During the day when he sleeps, he will lay flat on his back and not move. At night he curls up in a fetal position. Sometimes he is curled so much that he's half way down in the bed. Has anyone else noticed this?
Thanks everyone for your response to my question. Darlene, I have not put locks on the outside doors yet. Paul participates in a local program that is facilitated out of our county and includes surrounding counties. It is called Operation Life Saver. It is designed for AD and DH patients and cargivers. He wears an ankle bracelet (willingly). In case of him wondering, the local Sheriff's Dept. would search for him with an apparatus that has an antenna and hopefully find him (quick). Their success rate is quite high. Paul has become quite used to having the ankle bracelet on and it would take some effort to remove it, besides he has never complained about wearing it. So......if he would wonder off at night, I guess I would know the next morning and set up a search team. Paul has had so much agitation in the past (reason for the Seroquel) that if he would try to open an outside door and not be able to get it open, I believe he would go crazy. I always try to be pro-active, but I have not secured the doors yet. We sleep in seperate bedrooms and most mornings he comes in and snuggles. This is always around 5:00am - 6:00am. Probably after he has wondered around the house half the night. We have a one floor plan home and no basement, so I think I would hear if he fell. I also have a string of cow bells hung on the front door knob. I know I sleep with one ear open, like when I had babies...but at this point, I do NOT get up and check on him through the night. The 60 - 70+ hour work week was routine for him through our entire marriage. He did everything with gusto. Maybe his poor body is just wore out.
I too am tired all the time, sometimes take an afternoon nap and am very grateful that I do not have to go to a job each and every day (I just retired in Jan 2007). However, we have twelve rental properties that I completely manage. I did this even when I worked, he could just not keep track of the tenants, who paid rent, who did not, what repairs needed done, etc. I have set up my own system, and he doesn't ask many questions. I just do it.
We have 4 rental properties- one is up for sale. I have had people tell me that I should sell them because it may be to much for me later on down the road. We have owned these for 20+ years. I have always managed them and my husband did 90% of the repairs. I have also worked full time even when the kids where babies. I would like to keep them since the income is helping with college costs & will pay for long term care and hopefully give me a retirement income.
In the past I would sometimes drag use my poor kids to show properties when they were little- I can't see how it would be much different dragging an AD spouse. Do you find managing them to be difficult now?
No, managing the rental properties is easier than managing my husband. We've owned the properties for 20+ years also. As far as dragging him to show a property, I tried this in the past and it did not work very well. I found myself passing a card (that explains that my husband has AD- that I bought from the Alz. assoc.) to the potential renters because he was asking all kind of questions and I had not even taken an application and done a reference check. I, too plan on keeping the properties as long as possible because they provide good additional retirement income and possibly long term care income if/when the time comes. Even though I'm getting older every day, I find managing the rentals pretty easy. I use the phone and fax and I have some very good trustworthy repairmen that are independent contractors. They don't work for me, they carry their own insurance, etc. The properties are all mortgage free thanks to my workaholic husband. This has worked out very well for me so far. Nice sharing with you.
I just read your post regarding sleep positions and seroquel dosage. Paul takes 25mg. in the morning when he wakes up and 25mg. in the eve. Sometimes I put off giving it to him until later in the eve. (if he's awake and interacting) so he won't go right back to sleep. It's interesting that you would mention sleep positions. That's what is nice about this board....I would probably never talk to the Dr. about this because it seems like such a small thing. Paul sleeps on the couch, in his bed and in his chair. He also lays on his back, with his legs spread. The other day I was watching him sleep and he looked like an overgrown baby that sleeps with arms out and legs spread. He also sleeps in fetal position in bed. He also sleeps with a stuffed dog. He also talks in his sleep constantly. Sometimes I can understand every word. It sounds like he is working and giving orders to someone...."move that truck", etc. Other times it is mumble and I can't understand a word. Tonight, I was trying to wake him to have dinner. He said "Wait till I get done laying this tile." Sometimes he screams out in his sleep and sometimes (a lot) he cries. Or at least it sounds like he is sobbing. I don't think there are any tears. I have asked him when he wakes up if he was having a bad dream and he always says "no". He does not remember what he dreamed, but then neither do I most of the time.
He also swirls his hands around in a strange way, like he's directing a choir or something. He has never sang or directed a choir in real life.
Thanks for the info about the door alarms and dead bolt. I don't think I could get by with a half of tennis ball just yet, but I don't think he could get a dead bolt unfastened. He says his hands hurt and he can't even open a bottle of soda. He may be developing arthritis in his hands.
Again.....let me say how much I appreciate this message board... these are things that only spouses understand and can share. Thanks Joan!
Wow. Good for you for managing the rentals. We had 4 (+ 1/3 ownership with a sis and bro-in-law in another.) We sold all 5 this Spring/Summer. The investment property thing was really Jeff's hobby--he'd renovated them from shells in some cases, and did maintenance as necessary. Obviously, his abilities to keep up the work have faltered to the point where I'd have to ride along to be sure he got there, be sure he got home, and be sure he could put the lock back together once he'd taken it apart to rekey it. (he couldn't--one of the many emergency skills I've had to acquire.) I couldn't give up what little writing time I have to manage properties--and they'd all started to need so much attention lately. So we're out of the business for better or worse.
Hello family, Well I have been wondering about this,,Larry says he has these dreams ALL nigt long sometimes they are dumb like pouring milk and it spilling, then sometimes he will dream horrible dreams like once he dreamt he ran over our dog and could see the blood on the windshield. He has never ran over our dog..So what happens is he gets up about every 2 hours to try and shake the dreams.. Some times he said it like his brain just wont stop thinking...He is 53 dx 3 years ago...He has changed much in the 3 years..Renee
A year or two ago Jeff was having very realistic, very disturbing dreams. I think it's just a peculiar phase of the brain process. It's not happening so much right now. (Actually, he was not on AD meds when that was occurring.)
I'm interested to see how many of you are encountering sleep problems. Dick was always a good sleeper, but now he must sleep 20 hours a day out of 24. He takes Exelon morning and night, 6mgs, and was dx about 4 years ago. he gets up at noon, only if I wake him. He naps from 3 to dinner time and goes to sleep for the night at 11pm. He has lost his appetite also, so it's like pulling teeth to get him to eat. Even his favorite foods, he'll eat half of what he used to eat, and he's never hungry. He's lost about 20 lbs since the diagnosis, but it's not really lost because I found it. (lol) Seriously, do others have the issue with appetite also? The Neurologist says sleeping is not a sign of the disease, but the GP says.. "He's 84 yrs old, he's tired, and it's probably the AD" so who knows. Thanks for listening.
I've been wondering about the tiredness also. I realize that all the medications he takes (high blood pressure; cholesterol; triglycerides; diabetes; and Alzheimer's) must combine to make him sleepy. But there's also the tiredness from any exertion. He is only 64 years old, and now one errand wears him out. The doctors are no help. There are too many of them, all with conflicting opinions. I have been told that the mental exertion to stay alert, concentrate, and "keep it together" from AD contributes to tiredness. I don't know. joang
Joan, the words in your last sentence are the exact words used by our doctor. I notice an increase in fatigue especially the day after unusual activities, especially involving conversations with several people. Physical activity does not bring the same fatigue. My husband also watches far more TV and dozes in between than he ever did before and he gets 8 to 9 hours of sleep when he used to manage on 6 or 7. Inge
I have also noticed that for a day or 2 after he's seen people socially, whether it's our kids or friends, he is even more tired. (hard to believe he could be even more tired) so it probably is trying to 'keep it together' . It has to be so hard. I know when we are with a lot of people (at a party or out to dinner) he hardly talks at all, unless he can have a 1 on 1 with the person next to him. Too much stimulation really exhausts him. He watches these old movies on TV and I'm glad, because he's seen them before, and he really gets into them. We have a million of them on tape for emergencies. he was always quite a film buff. the other thing he enjoys is big band music, and I got a satellite radio in the car so I can tune into the 40's station and it keeps him calm. but lately, he just sleeps, and doesn't even turn on the TV. I think just the effort of being awake and trying to figure out where he is exhausts him.
There's big time sleep changes in my LO too. Always boasted he only needed five hours sleep; and it was pretty much true. Now he's getting eight plus everynight. Seems like thats pretty common...
Well, here's my 2 cents worth. John's sleep patterns have changed in the last few weeks. He is now sleeping nearly 20 of every 24 hours. Months ago he quit watching TV. He couldn't follow the plot. Commercials threw him off and he would think the show was over. Whatever.... back to sleep. He now sleeps in the middle of the bed. When I come to bed, I have to wake him up and get him to move over. It sort of irritates me. That little part of you says "Now I even have to fight for a place to sleep." When he tries to move over, he only moves his feet and thinks he moved. By the time he is over, I'm wide-awake and he's irritated.He also sleeps on his back with the covers pulled-up to his chin with his hands holding the covers. He looks like the little boy that "Sees dead people" in the movie. It's rather comical to see. If I get up to use the bathroom, the whole moving over process has to start again. You have to see the humor in it.
My husband is a "sundowner" and starts to fade as soon as the sun starts to go down. He wants to go to bed starting about 8 o'clock and I have tried to stall him until 9 until recently. I had him on Seroquel, prescribed by our internist, but the first neurologist told me to take him off of it immediately, it's been known to make AD patients get violent if they take it very long. I read the warnings on it, and it said that very thing. Now I have him on Klonopin, but I can't seem to get the dosage right. If I don't give him a full dose, he wanders all over the house at night and can't find his way back to bed, but if I give him the full dose, he sleeps much too long, like up to 17 hours at a time. I would like to take him off of the Klonopin, which has no such warnings about making an AD patient violent, but it is an addictive drug and I would rather not have him on that. The Aricept which he had been taking for two years seemed to lose it's power on him after about two years, and now he is on the trial of the Exelon patch, and I honestly ca'n't remember if he wandered at night before he started the Exelon. I have taken the Klonopin for Fibromyalgia since 1993, and it makes me sleep too soundly (it's purpose) to know if he gets out of bed or wanders, so I feel I have to stay up until I know he's going to stay in bed and won't get lost and not find his way back to bed, and possibly even to outside looking for me to lead him back to bed. I keep reading about others using the Seroquel and wonder if any are having their loved ones get violent or more agitated. My husband also goes to the kitchen when he wanders and looks for something to eat, but he's also looking for me when he does that. I have heard of some bad results with Haldol, too, and would love to hear of something with no warnings that works, but isn't addictive. If anyone knows of such a thing, please let me know!
JoyceL, Where did you find such an alarm? I would love to find something like that. Our city has no system for finding people and I haven't been able to find any GPS system that would work for us, either. DH loves to walk with the dog, but now he knows he gets lost easily and I have to go looking for him after a short time, so he's quit walking unless someone walks with him. The dog would pull him home, but she's tried so hard to pull him that she's pulled out of her harness and then just stays with him, twice. Two very kind souls found him looking like he was lost and brought him home, just totally confused and not even sure this was his house after he got here because that shock of getting lost scared him so much. He was only two blocks from home, but on the side of the street he didn't normally walk on and it confused the heck out of him because he didn't recognize the houses on the other side of the street. I worry that he will get up and go looking for me at night and end up outside, and then he would really be scared and I wouldn't even know he was gone. We live near a bayou and if he went there, he could fall in, but if he went the other direction, he would be on a very busy highway, so I stay up until I feel sure he's down for the night and I'm not getting the sleep I absolutely need to get. That door alarm sounds great and I would love to get some.
Jayne, We also owned rentals, four of them, but we sold two before Hurricane Katrina took them away from the new owners. We sold the third one after the hurricane because we had renters who decided not to pay their rent and absolutely tore up the place. It was impossible to get repair people after the storm and since my husband can't do the repairs anymore, I decided we had to sell it. I might have tried a bit harder to find someone or waited until I could find someone, but the male renter refused to pay rent and he had a bunch of illegals living there to go do his work for him (he was a construction man himself, but also an alcoholic) and after I gave them too much notice that they had to move, he threatened to kill me and he carried a gun in his truck, so I took him seriously. I took it to court and it took four more months to get those people out, and they deliberately did all of the damage they could to that very nice home. I'm too old (77) to put up with all of that and take care of my husband, and I had to sell "as is" and lost about $150,000 by doing so. Now I'm getting ready to sell the last rental because the insurance rates have gone up to more than I have been getting in rent and those people can't pay more than they do now. We had planned on those rentals for extra money for our retirement, but now I've not only lost the rent, but will have a lot of trouble selling in this buyer's market. The insurance is 4 times what it used to be, so it isn't even a good investment property for someone now. Be careful and don't let yourself be caught in the crunch that we are in. If I were younger, I could probably handle it all much better, but I just can't do it now and take care of my husband and myself. I waited just a bit too long and our investments didn't turn out to be such great retirement money, after all.
I took my husband to a new doctor, a geriatric spec for a consultation (he won't go to the neurologist anymore because he told him he shouldn't drive) Anyway, he liked this new doctor and actually did pretty well on the emory test, but she kind of lead him too. He had lost almost 30 lbs and was sleeping ... oh, 18 hours off and on a day, how could he eat? anyway, she gave him homework, he is not to lose anymore weight... that's the one thing he keeps in mind and has been having ice cream drinks and some food now. I thought if he started eating again, he might stay awake.... but he's still sleeping a lot. I try to keep him stimulated, but that's almost impossible. As someone said above, he can't follow anything on TV, and the commercials knock him off... he thinks they are part of the show, and can't figure them out.... It's funny, he used to be in advertising, and the commercials were more interesting to him than the show.
Joyce L is away at her vacation house with limited Internet access until sometime in November, so you won't get an answer from her on door alarms for awhile. However, I know of a catalog that sells lots of equipment for AD patients. Since I am also away from home, I won't be able to give you the information until I return home. We're leaving tomorrow, so you won't have to wait too long.
I am going to try to put a link on my website for that catalog company. They have some great stuff.
My husband Paul takes 25mg of Seroquel twice daily. He has been on this since June 25, 2007. He was having bouts of extreme agitation BEFORE seroquel. Almost immediately after he started on Seroquel, he got very sweet and quiet. He also sleeps much more and started having tremors. He has developed in the past 60 days a lot of unsteadiness in his walking and now uses a cane and sometimes a walker. He has also developed arthritis type symptoms in his hands. He complains all the time about his hands hurting. The Primary Care Dr. had X rays done on his hands and an ultra sound (blood clots.) No blod clots, thank God, and no broken bones. He goes back to the Neurologist at the end of November. It is sometimes hard for me to figure what is AD and what is reaction from meds. Seroquel was an answer to my prayer back in June. Several months prior to starting on it, I thought for sure he was going to lose it and strike me, he got so angry. After seroquel, he is actually more quiet and meek than his normal personality. It is all very confusing and probably different people react different at different stages. I sure hope he don't go back to the very agitated state. That was worse than anything in this journey so far.
My sister took Seroquel for her mental illness, the thing is the tremors can be a side affect.....Sorry, hope you are doing alright and the thng is there are lots of stuff out there and further sometimes the good from a med out ways the bad you know what I mean..Renee
My husband has eoad. dx at 58. We are 1 yr and 8 months into it.I am getting a lot out of this web site. He must sleep 12 hrs or he doesn't have a very good day. Usually doesn't sleep during the day. We bought a recumbent excerise bike after the dx. It really makes a difference. He rides 7 miles Am and 7 miles pm. If he is so, so in the morning he almost alway improves after his bike ride. He is on Razadyne ER and that has helped. He is also on Vibe a nutritional supplement that has improved the quality of his day. Last appt. at Stanford Univ. he actually went up 2 points on the mini mental. I try to control his enviroment and expectations which also helps. He doesn't do much on his own - his starter button is gone. We will try to work together with me filling in the blanks when he gets stuck. I have taken over the woodcutting and any work that needs to be done on the roof. I am still working but taking more of my work home. Looking to quit but no replacement yet. In the Lord's timing. I am only 51 so a long way from retirement age. The Dr. has added Lewey Bodies to his diag. they mentioned the dreams that go with that diag. if that helps those with questions about the dreams.
The dreams go with the Lewey Body's Ann? I am really curious because Larry's dreams are getting way crazy. He even dreams at times that I am yelling at him the other day he was sure I was holding him in our bed and wouldn't let him up.. I told him it was a dream,.,,He has all kinds of weird dreams. Every-time he sleeps whether it is a nap or bedtime...Renee
I said on this site back in September that my wife was sleeping 8 to 10 hours per day. Now over the past few weeks she is up and down 2 or 3 times a night wanting to walk around the house. I have to watch he so she doesn't trip or fall. Her medications are the same. I try to keep her quiet not to wake the kids. As light as I sleep now I can't get a uninterupted sleep. Is this a change because she is now in the later stage of AD? I have to get some sleep at night to work and function during the day. I was thinking of asking the caregiver I hired if she could stay a night with her to let me get a full night sleep. Any other ideas? Tony
Hi Tony, My husband started to wander starting in Stage 6 of AD. First it was getting up a few times a night and then it got to be that he would start wandering at around 8PM and would wander all through the night. I too did not get much sleep as I was afraid he would get hurt. There were times he would come into the bedroom and pull all the covers off me and wander through the house with them. One night, he turned on all the faucets, luckily, I had removed the stoppers from the sinks beforehand, or we would have been flooded. I could not understand how he could wander all night long and then after a couple of hours of sleep, wander during the day also. I was totally exhausted during this period of AD.
Around the middle of this year, he started entering the later Stage 6 and some of Stage 7. He started having trouble walking and in Sept. of this year broke his hip. He is now in a wheelchair and does not try to walk. We tried physical therapy, but, he will not straighten up his legs to walk.
I believe getting a Care Giver to come in and stay overnight so you can get some sleep would be a great idea. I tried this a couple of times and my husband would wander in and out of our bedroom and still keep me awake. I finally got some locks on one of the guest bedrooms, so, I could sleep without being interrupted. Also, have you talked with her doctor about something that could be given at night to help her sleep? They finally put my husband on Trazadone and this helped alot as I gave it to him just before bedtime. He is on a low dosage and only takes it when needed. But, like all medications, some people tolerate it different than others. Kay Kay
Kay Kay This is one of the first similarites of AD encountered. My EOAD wife is now in early stage 6 by her DRs. As with other stages and issues this to will pass but as you relate exhaustion can take a toll on you.
Comment Author Penny McAdams CommentTime 1 hour ago edit delete
I go to the gym every morning at 4:30am. When I returned home at 6:00am my husband was up eating breakfast. He has always been one to sleep until 8:00am. He said that he just couldn't sleep. Is this the start of him having sleeping issue? He has been restless at night too.
Comment Author pollyp53 Comment Time 17 minutes ago edit delete
Penny,
My husband's sleep habits started changing about 4 years before diagnosis of ALzheimer's in June 2006. So probably about 2002. He wakes up very early and can't go back to sleep. I don't think he sleeps through the night either. I really believe it's connected to changes that go on in their brains.
Our oldest daughter's neurosurgeon (she passed away of brain cancer 1/1/05) said to my husband during one of her appointments that as we get older our body releases more histamines which can keep us awake more. He said take Benadryl, an anti-histamine. That will help you sleep better. I have always been afraid to give my husband Benadryl because he is on Aricept and Namenda. I would like to find out if that would effect the medicines. Probably not.
Comment Author Penny McAdams CommentTime 43 seconds ago edit delete
Polly
My Husband takes Aricept and medicine for his high blood pressure. I am just hoping that his sleeping habits don't become a problem but I know that it is something that will happen in the future. I am going to talk with his doctor next month at our next apt.
When my wife saw a new AD specialist earlier this week he changed her medicines a bit, but still in the same categories - Excelon and Namenda. Her medication list included an antihistamine. He was pleased when I told him that she was not taking it, and stressed that she should not take antihistamines because of reactions with the AD medicines.
Every time we pick up Aricept I notice it says to take at bedtime. We have never done it that way, so this time I asked the pharmacist. She said it was recommended that way because it can cause sleepiness. Do you give Aricept in the PM? If I can change my habits and remember I think I might try it that way, since my DH usually falls asleep soon after breakfast.
My husband is on Razadyne instead of Aricept, and I give it to him at 7 p.m., along with his other medications that cause sleepiness. So help me, it really doesn't seem to matter. He dozes off and on all night and dozes after his coffee in the morning as well! :)
It would be worth a try just to see if it made a difference with your husband.
Just thought I'd throw in my two cents to confuse things more. My husband was diagnosed at age 59. He is now 72. It was very slow progressing at first but the last year has been like going downhill on a rollercoaster. We tried all the Alzheimer's meds early on but they made him worse so he's not on any meds. But he has the same symptoms you guys are wondering are side effects of drugs.
He is up and down all night. He doesn't eat at night however. His appetite is about nil now. I buy ice cream sandwiches four boxes at a time. He likes them and can eat them himself without help unlike something like a sandwich, cereal or soup. He can't remember he just had one 30 minutes ago but it's about the only thing he will eat and the Hospice nurse said let him eat all he wants.
He wandered two weeks ago in the middle of the night so I called a locksmith to change our deadbolt to a key deadbolt and I keep the keys in my pocket or bedside table.
He also waves his hands at night. Last night in bed he pantomimed he was handing me something about the size of a scarf. I asked him what color it was and he said reddish. He talks all night too. I've gotten to where it is comforting to me because I know then he is "asleep".
My husband, like some of your spouses, is now sleeping 18-20 hours a day--8-10 of those are at night when he is up and down. He gets up about 8 a.m. and dresses (though today he dressed in my slacks and sweater and even though I knew he had lost 40 lbs. it still was weird that we wear the same size now). He came in the kitchen and poured a cup of coffee, sat down in his lounge chair and promptly went to sleep. It's 10:30 a.m. and he's back in bed. I often go back to bed with him when he naps because it's the only time I can catch up.
But just wanted you to know he does this and isn't on any meds. Must be an AD symptom at late stage.
I've been reading all of this because my husband who is an early Stage 5 (has some of all of the symptoms and absolutely no Stage 6 symptoms) is doing some "napping" as well. He is sleeping more than he used to before we knew he had dementia, but no where as much as your loved ones.
The Alzheimer's Society includes this as a Stage 6 symptom:
"Experience disruption of their normal sleep/waking cycle"
So, if you wanted to know what was causing this, it is a late stage symptom of dementia.
I am just amazed to read about all the "sleeps so much" posts. Would that I had that problem! My LO will NOT sleep! The other day she went for FIVE, count 'em FIVE days with no sleep. It was a nightmare (except that you have to be asleep for those...)
We are trying the depakote. i know it's not a great solution, but we have to have sleep.
When she was with me, I finally arrived at a great solution. I put the kids' baby gate across the door, about 3 feet off the floor. She would wander up to the gate at night, look over for awhile, and then shuffle back to bed or around the room until time to look out again. The nice thing is is that you can peer in and see how they are doing (unlike a closed door), and I could go under it if I needed to go in. Since there's no knob, and the door is not closed, it didn't upset her to be "penned in".
When she could still use the toilet herself, the gate went across the hallway, so she only had access to her room and the toilet. When the adult diapers went on, I baby gated her room only.
And at last I could finally sleep without worry. Real sleep....
Note the word "disruption" in the Stage 6 symptom description. I think staying awake for 5 days fits that description as well as sleeping 20 out of 24 hours. In either case it is the disease. You did great coming up with a solution that works for you so you can get some sleep, but you also might be eligible for some Home Health Aid help for the middle of the night so you can really sleep without worrying.
I don't know how you get access to that, but you could ask the doctor for a reference to the agancy that would help you.
Pulling this up to the top. My husband has been sleeping most of the time for weeks, and now has started to NOT sleep during the day. I get him to lie down, under protest, bec. he gets very tired, but he pops up again in half an hour. So far he does sleep through the night (thanks to seroquel and neurontin). I keep some old Indian cowbells (we used to use them at christmas) hung on his door so I can hear him if he tries to come out. He's slow enough I can catch him!
Rob goes to bed at 10:00 and gets up at 9:00, hes usually up four times to go to the bathroom. They have put him on a beta blocker and hes down to once at night. Hes had alot of uti's from the sitting so much and doc said he may not be emptying his bladder completely and the beta blockers help this, so far it has. He also takes about a two hour nap in the afternoon.
I bought a TV baby monitor so I could keep an eye on my Mother during late stages decline. It was a lifesaver. I put the camera on a wall and aimed it at her in the bed and the TV monitor on my bedside table. I kept a low light in her room and I could hear as well as see her. I slept much better with the assurance I knew if she was trying to get out of bed.
I have not yet used it for my husband because I have not needed it. He sleeps day and night. He takes Aricept at bedtime and Namenda bedtime and morning. Celexa at bedtime and Wellbutrin ER morning. lmohr
Until my hubby's former Dr. insisted on trying a sleep med to enhance the quality of his sleep, he was sleeping from 6-6:30-pm until 12-2am, usually straight through. Then he'd be up a short while for a snack, then back to bed until 4-5. Sometimes he'd grab an hour or so mid-morning, otherwise wait until around 12:30-1 to grab a nap until 3:30-4. Since the 'enhancer' he was reduced to yo-yoing all night --up and down every 1 1/2-2 hours, staying up 1/2 to 1 hour between. Then all day he was up and down in a slightly broader pattern. We stopped the 'enhancer'. He has still not resumed his old schedule completely, and complains sometimes that he can't sleep. This usually happens after a stressful event or day. He needs at least 1 and sometimes 2 days to resume "normal" routine sleep after a bad event or day. Seroquel made him sleep. Xprexia did nothing--like giving him water. Resperdal was wonderful for the psych part of things, but caused severe joint pain and muscle stiffness--I had him to orthopedic specialists before his Dr. told us and took him off the resperdal. He still experiences the pain side-effect. Now he's on Geodon. We're coping with the increased tremors and involuntary body movements it adds to, but everything is manageable. He is in early 6 stage. He hasn't wandered in a while because I do my best to eliminate reasons for it and try to create opportunities for him to go places which are a controlled environment but which make him feel free---i.e.- a store where he can shop around, get a coffee, watch the shoppers, and has no need to leave until our ride comes to bring us home. Back in the late 80's when he had his mental breakdown and had gone suicidal, after the first couple days with less than 2 hrs. sleep each night, I had to find a way to cope. After working out what I'd do for every possible step of dealing with his suicide if he followed through, I realized that whenever something happened, I'd deal with it, but if I was out of commission for no good reason (lack of sleep) I wouldn't be able to. That's when I started putting him in God's care---"Lord, Watch over him and keep him safe, so I can take back over in the morning ready to face a new day." I usually get 4 hours, sometimes more. He has his coffee, feeds the cats, potty's the dog, and sometimes goes back to bed, but nothing bad has happened.