One of my husband's first symptoms after short-term memory loss, temper tantrums, and inability to speak in sentences any more, was sundowning. He would be fine until about 7 p.m. and then he would get restless. He couldn't sit still. He would stand up, sometimes walk around, sometimes just lean against the kitchen counter, then sit down again. If you asked him what was wrong, he said his legs were bothering him. After about 30 minutes of this, he would go to bed. We began having dinner at 6:30 p.m. so that he could have peace while eating. After a couple of months, he began the restlessness at 6:30, and would go to bed at 7. We moved dinner to 6 p.m. I told his doctor about this and because he has Restless Leg Syndrome as well, she increased his medication and had me give him one pill when I came home from work, and the other with his evening medicines just before he went to bed. When I say he goes to bed, don't think I mean he goes to sleep. He watches TV and reads. He dozes throughout the night, but is awake more than he sleeps. He waits for me to come to bed (10-11) before he "goes to sleep"(read dozes). He doesn't wander, thank goodness. The TV stays on through the night (low volume) and he'll watch a movie on tape or DVD. I can sleep through it. :) The sundowning is worrisome in that he is almost in a trance-like state for a few hours. By the time I go to bed, he's fine. If I don't come to bed by 11, he'll come into the den to ask me when I'm coming to bed. :) Do any of your spouses experience sundowning?
My wife seems to have changed. A year or so ago she would be ready for bed by 7:30. I would usually manage to keep her up until 9 or 9:30. Then she would sleep until 8. Now she wakes up around 6:30 (when the sun shines in her eyes), but all day she is dragging, dozing, and complaining that her "get up and go has got up and gone". At night I have to tell her that it is time to go to bed around 10. The she sleeps well until the sun comes up. And this is after 4 cups of coffee at dinner!!!
My husband gets very fidgety and "strange" in the evening. he also doesn't sleep very well and pretty much keeps the entire house awake most of the night. He then naps in his chair during the day, while my kids and I try to function throughout the day with very little sleep. This desease is as damaging to the loved ones as it is to the actual patient. I hate everything about this wretched desease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My DH paces in the evening and sometimes is ready for bed about 7:00pm. But most of the time I can talk him into waiting until 9:00pm. He doesn't watch much TV now. I think if the program is longer than 30 minutes, he just can't follow the plot. He gets bored and just wants to go the bed.
I'm guessing what is going on here is sundowning. My DH is extremely tired/exhausted and sleeps deeply once he get to sleep. These past few days he has gone to bed around 9 and gets up maybe a dozen times. He says "I don't know what to do", "I'm scared", "What should I do?". I'm not being successful at finding any way to really help him. I have put on restful classical music, made him tea, hugged him, but it just seems to have to run some course. Any of you deal with and have you found anything that helps. Today I put photos from 2008 on the computer as a slide show and he started crying. "I barely remember any of that" was the comment.
my husband has always been restless at night,never slept good, as his ad got worse so did this problem. he would get up dozens of times,go through papers,look for things,[he said he didn't know what he was looking for],do laundry,anything he could,eat anything he could find. once he got a really good smelling jar candle i had and dug some of it out with a fork and tried to eat it,he said it did't taste good,but it smelled good,after that i have to watch what is out in the kitchen. he also cannot follow a tv program more that the 30 minutes. he just gets up and walks away. he now takes trazadone 100mg and he sleeps good at night,so far things have gone well with this sleep med. he gets up very few times if any during the night now. i suppose this was sundowning,but he has been a terrible sleeper ever since we have been married[29 yrs] and says he was always restless at night. the trazadone has certainly helped him and the neurologist said it was not habit forming,which i think would be the least of his problems now. it is so hard to see our dhs crying and helpless. it is heart wrenching. jav
My husband now paces and fidgets all day long. I don't think he actually ever sits down except to eat. He puts things in strange places, opens drawers, turns on water, uses a lot of tissues...almost seems to be trying to find something to repair (he was a real handyman pre-AD). I really have to follow him or at least keep checking on what he's moved because sometimes it something I need and later can't find. He used to sit down in front of TV all night, but I don't think he sees or comprehends what's on. I can't get him to go to bed before 11 most of the time. Thankfully, once he's in bed he sleeps except for getting up once or twice to go to the bathroom.
My husband also paces. At this point he goes to bed at 9. He was going to bed at 8, but that got him up too early so I managed to convince him to watch some programs with me last Winter and they ended at 9. So 9 has become his regular bedtime. I'm not dealing with sundowning yet, but from what people here have said, once I do we are getting medications to keep him sleeping at night.
The pacing drives me nuts. So far he isn't moving everything around, but I expect that will start soon too.
The TV set is on from early morning till late at night. He isn't actually watching anything. It is just friendly noise.
I keep checking up on him because every once in a while...
my dh also has problems with shutting doors. he leaves the cabinet doors and drawers open,his truck doors open,car door open,sometimes the entry doors to the house. i used to think he was just aggravating me with the cabinet doors and drawers,and that was years ago,i look back now and know it was a sign,even then. jav
starling, i know what you mean by checking up on him,sometimes i have to check to make sure my dh is still breathing. i tend to do this often,i just did that today,he was just sleeping so long. jav
Leaving doors open, yes, my husband often leaves doors unlocked and a little ajar. I have to keep checking, especially when we go to bed. He sometimes tries to help by locking the doors when, in fact, he's unlocking them. So I also check them in the middle of the night...
Mine keeps wanting to lock everything up. Close all the shades at 4 in the afternoon in the summer. Lock every door. We haven't had a window open in this house in over a year. I do manage to open a door from time to time, and once he goes to bed if it is cool enough I open all three of them up.
I needed to create a going to bed routine. Check all three doors and all three ceiling fans before I go to bed. Even if I know I've already closed down the fans and I didn't open the doors. I needed to get into the habit of making sure they were locked as well.
Starling Lynn too likes to keep the windows shut. We have the crank windows, I have simply removed the cranks. Sneaky I know, but I love the fresh air :)
I too check Lynn all the time to make sure he is breathing. He is so quiet now on the Seroquel. It is a wonderful thing, but will take some getting use to I am thinking. He has slept a lot more over the past year and half, but now he is more alert in the day, refreshing and welcomed ~Nikki
My DH was a "pacer" at nite until about 5 mths ago until we added the 'anti-psychotic' med for aggressive stuff. Now he is "content" most nites until I say "ready for bed"...then we are off. I sometimes get him into bed & I finish up stuff around the house. He sleeps until about 5 or so & had a restroom break/clean up & then back to bed til maybe 8:30 or 9...not much dozing off during the day any longer. Much like Nikki, this is a refreshing & welcomed thing for me!
As for doors, he does leave doors open at times, but recently I walked our care-giver out as she was leaving & I went to get the mail...i came back & our front door was LOCKED! My dh had locked it!! Luckily the garage door was open so I went in that way...but, today, I added a "code entry" box to the outside of the garage door just in case that were to happen again. I've been wanting to add one anyway as it makes it easy to get into garage if I'm outside vs. going all the way thru the house to the garage & then out again...It was easy to install & is a better alternative than leaving a key outside somewhere -- i'd prob forget where I put it!
it's the same as our "inside" brinks code, so hopefully I won't be able to forget it :) I did think of that when I was "creating" a code...just decided it was easier to keep the same one inside & out!
One of the worst parts of this disease was when she had realization that she had the disease, and was also into it pretty far. She'd sit on the bed at night and cry and cry and say she didn't want this disease and how she didn't want to die and so on. It was absolutely heartbreaking. She'd finally fall asleep, exhausted. Then came the next night, and it started over all again. She'd forget that she went through it the night before, so every night was a new episode of 'finding' out about it again.
trisinger-when I was in school a million years ago AD was described as what it must be to wake up every day in a strange country and not know where to go
Wow, we had the cabinet-door-leaving-open thing, too. It never occurred to me it was a sign. It just exasperated the HECK out of me. Such a long time ago...
DW had the pacing and shuffling. Paced all over the place. She's in stage 7 and down to 74 pounds and she STILL paces all day and tries to do it all night.
When I had her home, I didn't have a full night's sleep in about 2 years because she got up so much at night. I just let it happen, I didn't know what else to do and I just figured I had to live with it.
When I was put in the hospital, DD took over her care, and couldn't keep up the pace of not sleeping at night. She eventually let her wander all she wanted, but babygated the door to her room so DW couldn't get out. DW wandered and paced, and DD slept nearby on a couch. DD said DW would come up to the baby gate and peer over, and then turn away for more pacing. It still kept DD up, but at least she felt DW was safer than if she was roaming the house at night.
DD begged the neurologist for sleeping meds, which he grudgingly prescribed. DD told him, "Look, this sleeplessness thing put my dad in the hospital, and I can't be the next one to go!"
Change doctors if you have to, to get antianxiety meds or sleeping meds. Your health is just as important...in fact, more. Take it from me...you're no good to them burnt out. yhc
Trisinger, I agree. This time in care giving is hard for me. But the most heart wrenching period was without a doubt when Lynn knew what was happening to him. Though unlike your DW, he did want to die, and begged me to help. Yes extremely hard. I still to this day can recall the haunting look in his eyes. "Hell on earth, if there ever was one." Well said.
Ann - I bought a water straw. I got it at an RV show, but I have to assume they are at hardware stores. You screw it on the tap and a four inch plastic tube (looks like a straw) hangs down. When you touch it the water comes on and removing your hand makes it stop. The directions say to turn the hot water down to half, but I just leave the hot water faucet off and the cold on about half way. Actually, I think that would be a good gift for little grandchildren, too. That's my tip - now, I'm hoping someone has figured out help with sundowning. Actually, last night was an inprovment - my DH only fussed, sat up and down in bed for 90 minutes before getting into a deep sleep. Frankly, I don't know what happened after that - I zonked out.
natsmom, I've made a bunch of copies of the house keys, and have them safety-pinned in the pockets of every pair of slacks that I own. (I'm afraid I'd forget to put them in my slacks pockets when I get dressed for the day.)
DH has always paced around the house during the late afternoon, but just recently started even after dusk and getting into mischief as well which he didnt do before. carrying expensive whatknots around to move them (dropped one too), and getting into drawers which he never did, and i found him wih a large screwdriver yesterday. he also broke a beanie bag baby of the dogs and those beads were everywhere, ugh! lucky he didnt eat any. getting into stuff is new, i call him a 'hooligan' and he laughs.:) he wont stay in bed either like before as well and i found if i let him come lay on his fav couch for a while he tires out then i can move him to bedroom. its just like a toddler i swear. havent used anything yet for sleep but if this continues may have to consult with neuro again. divvi
I saw them at an RV show - but imagine they must be in hardware stores. Perhaps if you goggle 'water straw' it would come up. A plumbing supply might have them, or some place where it is drought and they want you to save water. One thing I know - I love having this. Even if you just have greasy hands from mixing the meatloaf it is nice to not deal with making the water faucets slippery. I'll try to look around and see if I can find them and let you know...
try google - 'home automatic on/off faucet' and that came up with something like what I have. Maybe if you add 'under $15 mine will show. These are more complicated/fancy that what I have for $9.99. The ezfaucet is $60 on sale. I can't look any more - we are in to sundowning big time around here! This might be the thing to drive me crazy!
Ann - I hope you are still reading this link! If you google Touch-Free Faucet adaptor they will come up. This is not exactly like mine but www.thinkgeek.com has them for $38.99. Mine is one you have to touch and was $9.99, but if this works for you the price seems right. Let me know what you think.
My DH is just the opposite--turns off every light in the place (even if I'm reading). Makes sure all the faucets are off. Constantly checking the stove and the doors. He has been told he has dementia (but not AD). I belive he is beginning to get an understanding that something isn't right. He is a very powerful and strong man. Ex-Merchant Marine, avid hiker and loves the mountains, etc. He just can't bring himself to admit he has a problem. He says he has a better memory than I do.
I does pace in the late afternoon or evening. He's been so tired lately he hasn't been going for his walks. Our son told me to get a small friendly dog so that he could take the dog for a walk when he starts pacing. Don't know if that would work, but it might. I asked him if he'd like a little dog and he said he would if he could pick it out. He said he didn't want anyone just bringing any old mangy mutt in here to dig up the lawn.
I may have found an answer to sundowning that works here. Tonight the distress started about 5. After going from bed to chair five or six times he went to sleep in his recliner. After an hour he woke up and ate a speck of food. To avoid the stress starting up I asked him if he'd like me to read the new book we bought? After four pages he is back sound asleep. At this point he is finding the TV noise and doesn't seem to like hearing quiet music, but I'm guessing he still likes the sound of my voice - I'll let you know.
I think I am seeing sun-downing. There is no pacing, though. His eyes get glassy, he gets very hot/sometimes clamy, his joints hurt/mostly his fingers, he is so tired he practical can't move, sometimes he is agitated, however, mostly just tired. If the phone rings or people show up to visit or there is some other distraction, he can get angry. On Saturday, this was happening at 2:30 p.m. so I told him to sleep while I went to the grocery store. I was gone one hour. He went back to the bed to sleep, which is only the third time this year. He never goes to the bed to nap. After his nap, he was even worse. We had to be somewhere by 4:00 p.m. and didn't make it until 4:30 p.m. We wouldn't even have gone but it was to meet our son's family and DH really wanted to go.
Does this sound like sun-downing to you? He probably has FTD. Would this make a difference of how the sun-downing comes out in him?
Mary I am not a sundowning expert. My husband doesn't have it yet.
What I understand is that agitation starts about 4 in the afternoon and can go on all night. The patient can't settle down. If they are pacers, the pacing starts and gets worse as the evening goes on. If they normally can concentrate, they no longer can do that. If they are going to bolt and go wandering this is the period when they do it. That is how dementia patients get lost at night.
I think your husband might have just been tired that day. The fact that he took a nap, a real nap in bed, when that is not his pattern leads me to think that something else was going on. My husband has had one or two of those kinds of days. Generally I think that he might have a little cold or something else minor is going on. A day or two later he is back to his current normal.
I have not encountered the sundowning yet, but I have heard a lot about it here on this site. Just a thought, would it be possible this could be similar to "restless legs"? I have occasionally had "restless leg syndrome" and it is very dehibilitating. When I get it I have to move my legs, get up and walk, etc. They have meds for this but I forget what they are. Might be worth checking into is you haven't already.
Mary in Montana, When in doubt (or ignorant, which I often am... sigh) Google.
Yes, FTD patients can sundown. Sundowning on FTD web sites is described as "unsettled behavior evident in the late afternoon or early evening" or "worsening neuropsychiatric symptoms in the late afternoon and evening." It is also described as a sleep disorder in which the normal circadian rhythms are upset.
This article talks about FTD in general, and has a section on treatments for various symptoms.
"For agitation or psychosis, Dr. Chow advises against the use of typical neuroleptics, which can worsen motor symptoms. She said she has found the atypical antipsychotics to be useful, particularly quetiapine, which she starts at 25 mg/d and increases as needed up to 50 mg/d. Risperidone is also an option, but dosages higher than 1 mg/d may produce parkinsonism, Dr. Chow noted. Valproic acid can be a useful adjunct to the atypicals; trazodone is worth considering if sundowning is a problem. Agitation and confusion may be worsened by benzodiazepines.
"Insomnia is often refractory in patients with FTD and may be related to the involvement of serotonergic neurons in REM sleep. The effects of zolpidem and zaleplon in this population are transient at best, according to Dr. Chow, but trazodone is sometimes helpful. If the patient is receiving an atypical antipsychotic for agitation or other reasons, a bedtime dose may provide a “bonus” of improved sleep."
(Tiffany Chow, MD, is an Assistant Professor of Clinical Neurology at the University of Southern California in Los Angeles.)
I found this article interesting, from http://www.simplesite.com/MotherMary/4636232
(Have to break it into pieces, too long for one post...)
Sundowning Tips By Edyth Ann Knox
Experts say that all types of agitating behaviors are forms of communication. Your loved one is trying to tell you something even though the disease has robbed them of other ways (i.e., talking) of telling you. Perhaps your loved one is frightened or fatigued and does not know how to express it in words. Some experts believe that agitation behavior is "the inability the deal with stress."
"Sundowning" is a state of increased agitation, activity and negative behaviors, which happen late in the day through the evening hours. It used to be thought that sundowning was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with sundowning. Here are some suggestions on how to minimize the negative behaviors associated with sundowning:
1) Make sure that your Loved One is well rested: I know that this is easier said then done. It does help though if you can get your Loved One to take a nap just before their normal period of sundowning. If they cannot or will not nap, an hour quiet time (reduced stimulation and activity) will work. I used to sit Millie down in her recliner, turn off the TV, turn on some soft music and then I would sit next to her doing a quiet activity such as cross stitch or crocheting. We sat quietly for an hour and talked or just relaxed. I found that she rested much better and would even dose off if I took a nap/break with her. I was more relaxed also!
2) Limit outings and activities to the morning hours: Generally the individual with Alzheimer’s Disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the grocery store, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to allow your Loved One to wind down and relax.
3) Decrease the length and amount of stimulus: Even during the earlier part of the day the individual with Alzheimer’s Disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, and any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation cannot be avoided. When that happens, allow your Loved One to have a quiet area to retreat to.
4) Identify and minimize physical discomfort: Other types of physical discomfort can also play a part in sundowning. Hunger; being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy – even if your Loved One is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that your Loved One’s personal needs are attended to and that the climate is at a comfortable level.
5) Identify and treat medical ailments: Many ailments can contribute to sundowning and agitation. Arthritis can be one of the most common causes. An over-the-counter painkiller as recommended by your Loved One’s physician before the time of sundowning might be of great benefit. Urinary Tract Infections (UTI), flus/colds, asthma, allergies and other conditions are all medical ailments that can contribute to sundowning. It is always a good idea that when your Loved One first begins to exhibit sundowning or when sundowning becomes common to take them to the doctor to make sure that there is nothing ailing her.
6) Be observant to possible causes: Many times there are triggers to agitation leading to sundowning. One time, we bought our kids a video game so that they had something to play with. We found that the noise from the video game would set Milly off as soon as they started playing. We placed the video game in a room that was out of the way and she could not hear it and it really helped decrease the sundowning. Providing the kids with a separate private area helped both with them as well. Mirrors also became a trigger as well as a picture of Milly's daughter. Watching to see what is going on, what events are happening and who is present prior to sundowning can help reveal some causes (and solutions).
Sometimes no matter what we do sundowning will happen. If we cannot prevent it we can help lessen it or at least make it less unpleasant for our Loved Ones and those around them.
7) Provide a private "time out" space for your Loved One: Early on, we made sure that the kids and us all had private off-limits areas but it became obvious Milly had to have hers too. Milly did retreat to her room if things became too much so it became her natural private area. Her room was off limits to kids and general traffic. I was the only one who did enter there and even then I limited it to certain times. There were times that Milly had to get away from us as much as we had to get away from her, which brings me to the next step.
8) Clear the house: There were times that nothing we did would ease Milly during one of her most aggressive sundowning episodes. I would often send my husband and the kids to the movies or to some outing, turn off unneeded lights, turn off the TV/radios and either go to my quiet corner or go sit outside for a moment. I always made sure the house was safe for Milly; I never did leave her; and I was always close by. I would then change my hair by tying it up if it was down, letting it down if it was up, change my blouse and re-enter the general living area where Milly was turning up the lights in the room. Milly most often would see me as a friendly face and greet me happily.
9) Check with the doctor: If sundowning is particularly troublesome, you may need some extra help with prescription medication. Talk with the doctor to let him know of the behaviors, time of day and how your Loved One is behaving before sundowning. He may be able to help you by prescribing a medication to help ease the symptoms. Medication is a last resort and may take several attempts with different drugs and doses to find the right one that will work for your Loved One. If the medication does not help, do not become discouraged, relay the information to the doctor and he may either adjust the dosing or change the medication. Always ask the doctor to start with the smallest dose possible. Medication is only meant to take the "edge" off the behavior, it is not meant to make your Loved One dopey or groggy,
10) Keep things simple: Keep the surroundings as simple as possible. Be sure your Loved One’s walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and footstools can make it difficult for your Loved One and a become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible. Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s disease cannot understand. Complicated, noisy appliances are also frustrating to them. Avoid changing things once you have things simplified. Changes of any kind are extremely frustrating.
One of the aides in my husband's facility has an interesting if not scientific theory. Most people have worked all their lives. Around sumdown the routine from work to going home comes into play. That is the time when Bill would start looking for the car to drive home. Staff are rushing to finish up so they can go home. The life long transition from work to home no longer exists. Anxiety steps in. Just a thought.
Imohr, it is different from Restless Leg Syndrome, and my husband has RLS plus Sundowning....he's on Mirapex for the RLS (it works wonders!) but the Sundowning is another story!
Sunshyne, you came through for us again! I had read a lot of what was in that article, but there was a lot of information that I had not seen before as well. Thank you.
My husband wants to "help" me while in his agitated state, and if I can't redirect him, it usually will end up costing me money to get something repaired. The latest was the $325 for Kirby vacuum cleaner repair! <grin>
It sounds like the expression that I have seen some of you use would apply to sundowning, "if you've seen one person with sundowning you've seen one person with sundowning." I think that my DH's overwhelming fatigue keeps him from the pacing and other symptoms that you have mentioned. He does want to do things like go over bills and talk about issues during these times. He is always so adgitated that trouble starts. Sometimes, during these times, he thinks the house is a mess and vacuums. This adds to the fatigue. It generally starts around 3:00 p.m. and lasts two to three hours. I ask him how he handles this tiredness when he is working and he tells me that he just keeps at it because he can't stop and take a nap.
Mary, does he drink wine? If not, this may be a good time to start!!! When I come home from work, we hug and kiss and I pour us a glass of wine. After the wine, he'll follow me into the kitchen, so I'll give him something to nibble on while I get dinner started. I'll put in whatever DVD that he wants to see, and he'll stay in his recliner until dinner is ready. After dinner, it is very difficult to keep him occupied and out of trouble. By 8:30 - 9 he will go to bed and watch a movie in the bedroom (which gives me some free time to get things done!) This routine is about a month old. It has had variations for the last 6 months or so, and I'm certain I'll have to make adjustments as time goes on.
I don't know if this will help you or not....Good luck!