Dementia + Sundowning

ladybugfruitJune 7, 2009

Great thread on dementia and I relate to many of you in dealing with the in's and out's of it. However, ( and please pardon me if I missed it), but I didn't see anyone have additional problems with sundowning. My gramma has been in this place once before a few years ago when she was in a nursing home for rehab. Basically, she gets more agitated as the evening wears on and now she is not sleeping at night more than maybe an hour. She is not sleeping more than a few hours during the day either. I know the drill with sundowning as far as what we as caregivers can do ( lighting, music etc) and nothing is working. She was recently put on ambien to help her sleep...nothing. Trazadone was next up to 100mg and still it is getting worse. She was put on Seraquel a few years ago with success but at the time, physicians were not fully aware of the dangers that went with it with the elderly with dementia. It now has a black box warning in regards to that. Of course I will be speaking with the doc again tomorrow, but was wondering if anyone else out that has dealt with this and if so, what worked for you? We have also tried mealtonin as many eldery lose the ability to produce their own as they age. That didn't touch her either.

HELP! She is on hospice so we are not doing super aggressive, but as the same time, we need to get her some sleep. It's such a vicious cycle since the not getting enough sleep is making the dementia worse.

Thanks all.


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LBF - My MIL suffers with sundowning, but so far it has not been unmanageable...however, we had a very bad episode of anxiety take place today (early in the day). I placed a call to her doc to let her know that we need some advice on better coping skills, or possibly different meds. I will be interested to see what others here have to say regarding your question, since the sundowning & the anxiety seem so closely linked......

    Bookmark   June 10, 2009 at 10:06PM
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telly2, one thing that has worked to help my gramma with anxiety when the sundowning gets bad is ativan. If your doc has not already suggested that, it does help some when they get really agitated.

    Bookmark   June 11, 2009 at 9:32AM
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About 2 months ago, when she last had episodes of anxiety, her doc did prescribe Ativan. This time was much worse, and the doc prescribed .25 mg of Xanax. I think I read on another forum that Xanax was not the best thing to use in elderly people w/dementia, but it sure did the trick.
Problem is, as I stated in the other thread re:dementia, she thinks meds are the greatest thing since sliced bread, and takes them eagerly. For example, tonight she asked for a Xanax to help her sleep, and I discouraged it. Once she knows that something's available, she's very focused on it. It makes me terribly uncomfortable; I don't want her to suffer, but she's constantly wanting to take something in addition to her daily "maintenance" meds (coumadin, risperidone, atenolol, diovan, fluoxetine, namenda). She keeps a bottle of Tylenol Arthritis formula and Tylenol PM in her room, and whenever we're out shopping, she wants to buy extra bottles of them to add to her arsenal...

    Bookmark   June 12, 2009 at 12:23AM
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Please let us know what the doc says about your gramma's sundowning......

    Bookmark   June 12, 2009 at 12:32AM
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Hi, this is my first time on this forum. From the posts I have read, I know I will benefit from it and have a chance to laugh as I read my about life in someone else's story.

I am the primary caregiver for my dad and mom, who are 87 and 85, respectively. Both suffer with dementia. My dad, however, presents the symptoms of sundowner syndrome and possibly early stages of alzheimer's. I have never known Dad to sleep for more than five or six hours before being ready to take on another day. Dad lost about 95% of his vision upon waking about a month after having a stroke five years ago. I guess within the last couple of years, Dad has had to sleep with a light so that he can get his bearings if he awakens during the night. Mom would complain and complain and complain (like your mom) about Dad getting up all through the night, and he would have no recollection of it. That would be the topic of the day-long argument. My mom likes to retire around 8:00 or 8:30 pm. and Dad still likes to wait until the 10:00 o'clock news is off. Mom forces Dad to go to bed when she's ready, and he has to comply because his sense of direction is lacking.

Well, my sister (who is as restless as Dad)moved in with them for about six months. There were several occasions when Dad would get up, dress himself (often his clothes were on backward/shoes on the wrong feet), and start walking out of the door in the middle of the night. Because of his inability to see and having gone to bed so early, Dad would think it was time to get up. So, she would have to direct him back to his room and try to convince Dad to redress in his pajamas. Sometimes the only way he would go back to bed is if she would call me to come and talk to him.

After my sister moved out, I moved in with them. Big mistake for my sake(I'll explain later), but I was able to understand the needs of both my parents a lot more. My dad and I have been great friends for as long as I can remember. (Mind you, I respected him as my dad, but experienced the love of my gentle giant.)During the night, my Dad continued to get up and insist on getting dressed to go outside or to work. To get someone to assist him with his clothing, Dad would also bang on the walls, windows, and/or bedposts to get our attention. We would be up two or three times per night...arguing! I would tell Dad he needed to go back to bed. He would tell me, "I'm not going back to bed, and you can't make me." Dad would get angry with me and would adamantly state that it was daytime and he needed to get up. Sometimes, Dad would even ransack his room. Usually, an hour or two had passed since he'd gone to bed. After a few words between us, he would lie down and, then, start having a conversation with himself about how badly I'd treated him. His discourse would often include, "I can't believe my own daughter would treat me that way." His "monologues" were audible, whether I was trying to sleep on the floor in the next room or on the couch in the living room. Then, he would usually go to sleep around 6:00 am and try to sleep until noon. When he arose, I would tell him about our argument, and, poor Pops had no recollection of it.

I asked his doctor if it were okay to give Dad an over-the-counter sleep aid. He gladly gave me permission. Dad slept peacefully for about two nights, but the cycle of usually three consecutive nights of being up all night began again. Actually, he became more hostile when he took the sleep aid. By the way, I also tried keeping him up until at least 11:00 pm, but to no avail. Not letting him sleep in didn't stop him from staying up all night.

Even changing his diet, i.e. replacing his glass of tea for dinner with water and eliminating dessert didn't help. So, while I stayed there, I had to be aware of the timing of his cycles and the patterns that would lead up to the sleepless nights. I finally had to move out for my own sake. Because I was not sleeping/resting at night and had to provide care for Dad all day with no downtime, I began to suffer with seizures and was at high risk of having a stroke.

Hope this was not too long. I just want you to know you are not alone!

    Bookmark   June 12, 2009 at 1:56AM
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Abyte...thanks for the reminder that there are others out there dealing with the sundownners. Sounds VERY familiar. My gramma is really bad about getting up and getting dressed and trying to go down to breakfast at 2am and then wants to get back in her nightie and then start all over again an hour later. She fixates alot. For her, it's about snakes in the house or now where my gramps is ( he passed away a few weeks ago). She tends to "see" all of the dead relatives. The last time she was this bad, it was maybe 6 months after mom had died and gramma kept calling me by my mother's name. That was hard.
Thankfully, she seems to be coming out of this cycle and calming down a bit. She has been sleeping better at night and not as anxious. No meds change to account for it, but it's just been within the last 6 months that I have realized that it tends to cycle. Hopefully, she will stay calmer. My sweet girl has gone through enough that I hate it when she is so anxious.

    Bookmark   June 12, 2009 at 9:53PM
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I read an interesting article in the NY Times about all-night care for those suffering with dementia. Too bad more programs like this don't exist...

Here is a link that might be useful: NY Times: All-night Care for Dementia's Restless Minds

    Bookmark   June 13, 2009 at 8:26PM
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"I read an interesting article in the NY Times about all-night care for those suffering with dementia. Too bad more programs like this don't exist..."

Your right, it is an excellent article. I hope elder care facilities will take notice and start providing evening programs (7pm to 7 am) so caregivers can get some much needed rest.

    Bookmark   June 15, 2009 at 8:04AM
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I was very lucky when my husband had Alzheimer's, he only lost his temper twice in the 4 years he was at home. He loved me so much and he trusted me completely so he did what I told him to do without question. I wish my mom was that way. She fights every thing we ask her to do.

    Bookmark   June 15, 2009 at 9:11PM
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First time here. I'm caring for my almost 89 yr. old mom while my sister (her caretaker in FL.) is traveling. I live in NC and mom has been staying with me here for the last 2 wks. I have been able to get a complete pic. of how bad she is now. Her dementia is frustrating for her and us. She's not totally "gone"... has quite a bit of lucid moments. I'd say within the next 6 months to a yr., she'll be totally gone mentally. I didn't know the term 'sundowning'. Didn't know her night time fears had a name. Once 3 p.m. comes around, she wants to start locking dorrs, windows and closing shades because 'the night is coming'. Wow, it's absolutely incredible. If we're out and about, she starts to get hysterical because we have to get home before sunset. My sister is her caretaker in Miami, and with me being in NC, it's difficult for me to help alleviate my sisters stress. She can't go anywhere after 3 p.m. My sister won't find anyone to care for mom for a few hrs. because mom doesn't put up with anyone else. It's all very frustrating! Anyway, just wanted to let you all know I'm glad I checked out this forum. Total enlightenment on the night time fear stuff.

    Bookmark   June 30, 2009 at 7:40PM
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