Caregiver sundowning

Posted by chris20 @chris20, Jun 8 6:41am

Most caregivers for loved ones with dementia are familiar with sundowning and how things get worse toward the end of the day. We often experience what some call caregiver burnout or compassion fatigue. In my case, neither of those two terms exactly fits. I am not totally burned out, because I still function and get everything accomplished, I don't just give up. And it isn't compassion fatigue, because I still run the household and get everything done with a fairly respectable amount of energy and competence. I am not all that fatigued. Still, I am often irritable and tired of the repetition, looking for things in odd places, explaining who our children are, reciting what we had for supper, explaining for the 500th time how our beloved little dog passed away, repeating what day it is and what time it is, having no meaningful conversation, and on and on. So I think the term "caregiver sundowning" fits the most accurately. I would like to know if anyone else is experiencing this and if there are any solutions that work well.

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I can relate. We are in the stage right now where hubby recalls every last (or so it seems) instance of his childhood and I get to hear it over and over. I so appreciate my solitary times, of which I have an appreciable amount, since he is a night owl and I am a chicken. It's always been that way. We are lucky that our adult son, who is on the spectrum, lives with us and recalls things we forget. But he lacks empathy, so there's no confiding in him. I do miss not having someone to tell meaningful things (to me) to. I cope by listening to audiobooks.

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My husband who had Parkinson's was sundowning. Once i found him at 9am face down in the dirt, hypothermic. He had to go to the emergency room.
On my own, I started giving him 10 mg of melatonin at 4 pm and another dose at 9pm. He never sun downed again, except for one time when my son forgot to give him his first dose until 6pm.
I took care of him until he passed on. I spaced out during that awful time by coloring in adult coloring books with gel pens. He could be raging around me and while coloring ,it just slipped over my head. It is a sort of Zen.

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@raebaby

My husband who had Parkinson's was sundowning. Once i found him at 9am face down in the dirt, hypothermic. He had to go to the emergency room.
On my own, I started giving him 10 mg of melatonin at 4 pm and another dose at 9pm. He never sun downed again, except for one time when my son forgot to give him his first dose until 6pm.
I took care of him until he passed on. I spaced out during that awful time by coloring in adult coloring books with gel pens. He could be raging around me and while coloring ,it just slipped over my head. It is a sort of Zen.

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I understand completely. Singing and playing classic country and Gospel music tends to do that for me. Working on my old repertoire, adding some new ones, getting lost in the music. "Music is nourishment for the soul."
And a great distraction to boot.

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@raebaby

My husband who had Parkinson's was sundowning. Once i found him at 9am face down in the dirt, hypothermic. He had to go to the emergency room.
On my own, I started giving him 10 mg of melatonin at 4 pm and another dose at 9pm. He never sun downed again, except for one time when my son forgot to give him his first dose until 6pm.
I took care of him until he passed on. I spaced out during that awful time by coloring in adult coloring books with gel pens. He could be raging around me and while coloring ,it just slipped over my head. It is a sort of Zen.

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I wonder if it might help to back off on the Seroquel dosage and try the melatonin for her.

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My husband was taking Seroquel at the same time with the melatonin.
I was visiting a friend in Texas, an area where there are so many elderly people living, the local Walmart runs out of Melatoni
I'm one of them, a "normal," but I take 3 mg of melatonin every night.

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My wife has a sundowning component with her MCI. She just tends to get frantically busy and wants everyone around her to join in. I try to focus her energy on small household chores: hanging up or taking down clothes, putting up dishes (which may end up in interesting places), things she used to do every day. Also just giving her a little attention seems to help and very often a short drive in the country and petting a neighbor's horse will quiet her.
Timing of meds to set in early evening helps.

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Hi chris20! I could’ve written your post. After 4 1/2 years of sundowning, I called my stepson and told him that I needed a break. He’s coming Saturday to take care of his dad who has Lewy Body Dementia. I am going away for one week just to be alone and seek some real conversation! My normal get away is to hide myself in a book.

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@jan83404

Hi chris20! I could’ve written your post. After 4 1/2 years of sundowning, I called my stepson and told him that I needed a break. He’s coming Saturday to take care of his dad who has Lewy Body Dementia. I am going away for one week just to be alone and seek some real conversation! My normal get away is to hide myself in a book.

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Congratulations on your well deserved "vacation." I am very envious, sinful though that may be! I have been trying for over seven years to get someone to take my wife( their mom) for a week but they have adamantly declined saying they know about her separation anxiety and wouldn't want to insist and make her uncomfortable. I don't know how to get that vacation without going nuts and being sent to the looney bin. Just kidding.
Enjoy it, and good for you for making the arrangements, that certainly takes courage.

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@chris20

Congratulations on your well deserved "vacation." I am very envious, sinful though that may be! I have been trying for over seven years to get someone to take my wife( their mom) for a week but they have adamantly declined saying they know about her separation anxiety and wouldn't want to insist and make her uncomfortable. I don't know how to get that vacation without going nuts and being sent to the looney bin. Just kidding.
Enjoy it, and good for you for making the arrangements, that certainly takes courage.

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Someone does need to step in and give you a break. If you have a stroke, they will have to worry about her permanently. I know how horribly hard it is. My husband died suddenly. I was truly miserable while caring for him. We had been married for 58 years and I knew I had to stand by him.
But, I did my part and am happy now.

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@harleyshaw

My wife has a sundowning component with her MCI. She just tends to get frantically busy and wants everyone around her to join in. I try to focus her energy on small household chores: hanging up or taking down clothes, putting up dishes (which may end up in interesting places), things she used to do every day. Also just giving her a little attention seems to help and very often a short drive in the country and petting a neighbor's horse will quiet her.
Timing of meds to set in early evening helps.

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Thanks for this. I do the evening drive thing too, through a beautiful 80 acre park nearly every evening which does help a lot, and sometimes we walk there as well. I never tried giving the evening meds earlier, I will talk with the Dr about it. If her sundowning eases up, I think mine will too.

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