Sundowning.

Why is this happening to her?

The other day, Mom forgot how to use her walker. I think she kind of forgot how to walk entirely, to be honest. I walked into her apartment, and she was standing near the closet reaching down to pick up a towel from a laundry basket. She was unsteady, and the walker was nowhere to be found. I stopped her immediately, and went to grab her walker, which she had left by her recliner. I brought it to her, and she looked at it like a hive of wasps. It took me moving her hands to the hand grips and physically turning her hips to get her to use it to walk back to her chair. It was unsettling for me for two reasons: The first was that she was walking around without her walker at all, and the second was that she couldn’t remember how to operate the actual walker.

It’s a sign of the times I’m living in, unfortunately, as sundowning is becoming worse and worse for her. And earlier and earlier, to be honest. 

When does sundowning start to happen?

Not rhetorical…I mean during what stage of dementia? 

Sundowning is a characteristic symptom of moderately severe dementia. According to research, that is when it is the worst. As it becomes earlier and more severe, that is when you know you are in the most severe form of dementia, closing in on the worst of the deadly symptoms. 

In my situation, sundowning is hitting left and right, early and late. Honestly, if we can get fifteen minutes of lucidity with Mom during a visit, we consider it a win. 

Causes

Unknown. How’s that for frustrating information? Common research indicates that it is perhaps related to the “biological clock” with circadian rhythms of the dementia patient. But, that’s just a theory. Lovely. 

A few other things that might trigger sundowning include the following:

• Being overly tired – since dementia patients tend to have very poor sleep schedules, they can become tired at various points throughout the day.
• Unmet needs or slight pain – because they often can’t express their hunger or thirst, for example, as dementia gets worse.
• Depression – can be prevalent with dementia patients, but harder to diagnose and treat at this stage of the disease.
• Boredom – can be a huge problem at this stage, as they struggle to focus on anything for more than a few minutes.

Symptoms

The prevalent symptoms with sundowning include increased agitation and confusion. As the dementia patient falls into sundowning, the symptoms you see can and will be of different types, and with varying severity depending on a number of unknown causes. I have seen Mom go through an entire week with no sundowning symptoms at all, only to have extremely difficult symptoms with no warning the next day. One evening, I was watching television with Mom having a relaxed time with John Wayne. I walked out to get a drink in the kitchen, and she followed me yelling at me about some perceived slight. It was the fastest change of demeanor I had seen with her, and it was startling and frightening that it could happen so quickly. 

The changes you might see in your loved one may be very different from anything I have seen or read about, which is part of what makes sundowning so frustrating for the caregiver. When it’s over—later in the evening or the next morning—Mom had absolutely no recollection of what had happened, despite her having very aggressive symptoms. 

How can you lessen the symptoms?

There is a lot of research about how to lessen or manage the symptoms you are seeing with dementia. Here are just a few of the ones I’ve looked at with Mom:

• Minimize triggers – for example, we learned that watching cowboy movies with a lot of violence seemed to trigger Mom, so we switched from the cowboys to TCM (God, I love you TCM) after dinner.
• Keep evening routines – so that Mom could, hopefully, know what to expect to happen as the sun went down. Dinner was always on time, followed by getting ready for bed, followed by a little television and then lights out. We found a late evening to be deadly for sundowning, too.
• Respect sleep schedules –  we made sure the environment was conducive to getting a good night sleep—the usual bedding, the same night light, the same extra blanket at the end of the bed—so that Mom was able to anticipate her environment and relax.
• Validate and distract – your loved one needs to know that you recognize that this is difficult for them, even if they don’t seem to respond to you. Distracting them with something else sometimes worked for us, as well. Changing the channel, offering a snack, anything to change their thinking. 
• Go homeopathic – whether it is essential oils that you try, or perhaps some healing massage or touch, it might work wonders for your loved one. We definitely used scent to help keep Mom calmer with lavender in the air—and in her tea!

Best Ways To Manage Your Loved One During Sundowning

I don’t think you’re going to like this section too much, friends.

Sometimes, you just have to go through the storm until the storm is done. Even the rain must, eventually, cease. 

When everything else has failed me, the one thing that will always matter is that I was there. You will be forced to bear witness to so much in The Job as Mayor, and this is just one of those things. Nobody will ever understand just how bad it can get, but then again, you aren’t doing this for anyone else to understand.

Just stand and deliver. Your love for them is your only defense. 

Consider The Health Sciences

You’re going to reach this point, Boo Boo. No matter how much you say it won’t happen, I’m guessing it will come your way. I was adamant that I didn’t want Mom to be like a vegetable in One Flew Over the Cuckoo’s Nest. Then she threw a coffee cup at me and hit my kid. 

It took a long time—years, actually—for Mom to get to the point that I couldn’t handle her symptoms anymore. It will be the shortest and longest period of your life as a caretaker, watching the snowball fly down the dementia mountain.

And you’ll have to decide…

Should I medicate her?

The agitation and inexplicable fears became too much for us to manage and “talk through”, so, yeah, we decided to get some anti-agitation medication for Mom. This was while she was still at home with us, and we were trying diligently to keep her happy and safe in our home as long as we possibly could. When—okay, Boo Boo, IF—you reach this point, start slow. Low dosage is definitely the way to start, and you might have to try several different medications until you find something that works for you. It will be fine.

What about herbal remedies?

This is completely not my thing, but it was suggested to me by more than one friend, so I thought it was important to share it with you as well. While I have no objection to trying anything that works, make sure you run everything by your primary care physician, since even some herbal supplements might interact with prescribed medications negatively. In my opinion, whatever you find that works is a win for you, so try everything! 

Keep Calm, Boo Boo

Big Brother Bob was here June of 2021 to cover for me while I went on vacation. Mom had a terrible week, and ended up extremely agitated and upset. It was probably harder on Big Brother Bob than it was on Mom. When I got home and Big Brother Bob shared what had happened—-always love him for not calling me on vacation—I finally realized just how bad things had gotten, and how much I had been handling and coping with. 

It was a very stark, naked reminder of what we as caregivers see as “normal” that could bring regular people to their knees. I cried with Big Brother Bob that day, thanking him for taking on this Herculean task, and apologizing for putting him in a position I hadn’t realized was so difficult. 

This about broke me. I finally saw the truth of what I was dealing with against the demon dementia. It wasn’t long after that visit that I started looking at a long-term facility for Mom. It was the right decision for her—and for me—and I have no regrets.

You just need to know how bad sundowning can get.

Buckle up, buttercup.

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about sundowning!

Hey, since you’re here! You may as well check out things to avoid talking about, here, or if you’ve read that, check out how to talk to your siblings, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

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Resources:

https://www.aarp.org/caregiving/health/info-2017/ways-to-manage-sundown-syndrome.html

https://www.nia.nih.gov/health/tips-coping-sundowning

https://www.bu.edu/alzresearch/files/2010/03/alzheimers_caregiving_tips_sundowning.pdf