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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@raebaby

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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Yes, I have even told them that. We just "celebrated"
Our 59th but have been together more than 60. Long story. Sorry for your loss, I know when it happens, when I finally lose her for good, the grief will be stronger than the relief. She is my soulmate.

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You need that break! Some residential facilities offer respite care, where you can leave your loved one for a week to have some time for yourself. ( I don't know how costly that is but maybe your wife's children could pitch in.) And I've never looked into it but I know that Road Scholars has a "scholarship" program for caregivers.

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The issue isn't really the cost of respite care, the problem is she goes into panic mode at even the thought of being apart from me or even having someone else in the house. To the extent of tachycardia or dysphasia episodes. And no one can even say the "A" word or she freaks out(Alzheimer's).
Some have even suggested I might consider precipitating a crisis just to get some movement. She was hospitalized last year for 4 days due to a blood clot and pneumonia. I spent a lot of time at the hospital but felt an unusual sense of freedom for a few days.

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"sick of it." I've had that thought often, and this is a fairly new challenge for my husband and me. I think what bothers me the most is that he doesn't really know me, married for 57 years and thinks of me as a helpful caretaker. Looking at family picture albums, he was surprised to see me there. I think of him like a balloon that is floating totally unattached to me or to his home; so all the time and effort I put into his care is without emotional compensation or appreciation. That gets tiresome and mentally exhausting. We walk to a bench a block away after dinner. Neighbors stop by there on their nightly dog walks to chat a bit. It is a nice time to pet dogs and socialize. We both enjoy it.

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I get so irritable at the end of the day; I can’t stand myself. My husband is so bonded with me I don’t know how to get even a mini vacation but I’m gonna try one. My friend’s daughter and her roommate are my caregivers and I’m going to try to arrange with them to stay with him in my apartment over a weekend while I go to visit a friend. I don’t know how to approach this with him but if I don’t just dive in and do it, it won’t happen. Any advice would be greatly appreciated. Thanks.

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@chris20

Yes, I have even told them that. We just "celebrated"
Our 59th but have been together more than 60. Long story. Sorry for your loss, I know when it happens, when I finally lose her for good, the grief will be stronger than the relief. She is my soulmate.

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You said it perfectly...."the grief will be stronger than the relief". Repetition of the same things day in and day out, like looking for the remote, or asking several times where we're going when in the car and the like, CAN be irritating, but it's just part of my day and I love him with my entire being. And I wonder what i'll do when he finally leaves this life...so yes, grief WILL be stronger.
Big hugs to you

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Sorry for all that you're going through. It sounds tough. It's ok to get frustrated and you'll find little things to help that can make a big difference, or even just a tad better.

My Mom gets sundowners as well. I have found it's OK to lie. When her dog died, I broke the news to her and she grieved. The next day, she asked about her dog. She grieved again. After three times, I told her that the dog was fine and she never asked again.

Several books and articles suggest going along with them or lying when necessary, but I'm no pro. I've just found that it's easier on both of us to go along with whatever is in their head.

"Are my parents ok?" She asked, I said yes even though they passed away years ago. She said ok and was fine.

Sometimes her worries seem to arise after a bad dream.

Although Mom is in assisted living now, I have been her caregiver for several years before she went in. I did everything wrong and everything to make things worse. We fought and cried. It's much better now but she is a lot worse. I'd trade a few tears to have her 'back'.

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When I cared for my Mom, it was all day every day and I never left her alone for 5 years. I accepted that it controlled my schedule but when it finally affected my sleep, we hired a caregiver service to be with her at night, then all day for her last 6 months. I was still there to monitor the care, visit with my Mom, answer questions, love her. My stress level went down. But all thru this, I didn't take any of her actions personally. She had a disease that she had no control over, nor did I. Keeping myself peaceful helped her stay peaceful. I didn't disagree with what she said, nor try to correct her - I just accepted it as her truth. I made myself smile instead of frown when she repeated yet again, and thought of how it must have been important to her for it still to be at the top of her mind. Several years later I faced the same thing with my mother-in-law, who also lived with us. Her symptoms were different, such as talking to the "nice lady" who lived behind the window, which was a mirror in reality. I found ways to do things without arguing. Several years later, when she stopped eating (age 99,) I didn't 't force her. It was her time and she remained at peace. I realized that if they didn't want to do something, was it really that important? Even things like doctor's appointments, etc. If I didn't try to convince/force them to so something, it would usually turn out fine. "let's go for a ride!" worked better than "we have to go [somewhere.]". Long explanations never worked because they couldn't remember the beginning of the sentence. So get out a QTip and keep it handy because it means "Quit Taking it Personally." Treat them the way you would like to be treated.

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Thank you, much wisdom here and skillful communication.

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I learned with my cousin, not correct her thinking, just go along. Her cat was adopted by loving family (lie). She told me she was enjoying Florida (lie, in memory care in Bronx NY). I discovered if I told the truth, she didn't get it, and would ask over and over and over AND OVER, making me crazy.

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