Snapshots of Dementia: Sunrise, Sunset, Sundowning
As I’ve said before, Tom and I are the typical opposites who attract. We realized early on in our marriage that even our sleep patterns differed. I could remain alert late at night but took a while to feel like talking in the morning. He needed an earlier bedtime but arose, fully recharged, no matter how early the alarm clock rang.
All that changed, however, with the arrival of our first child—and then our second ten months later. I’ve often said that mothers have to be both night owls and early birds. Once again, my parenting experience has served me well, as I now need alertness at many times of the day. That’s especially true because over the past several months, sundowning has played a more significant role in our lives.
In case you haven’t heard of sundowning or sundown syndrome, it refers to a set of symptoms that typically occur as daylight begins to fade, generally in older adults with one or more forms of dementia. It can involve restlessness, agitation, irritability, confusion, and more—and it often makes going to bed and staying asleep a challenge.
Tom has taken medication to help him sleep since we first began treating his dementia symptoms, so I suppose he’s shown sundowning behaviors for a while. Without the medication, he tends to wake up much more or becomes agitated, even violent, in his sleep. With the medication, he sleeps well—for the most part.
As a person living with dementia, he also requires more sleep than he used to. The activities of daily living are much more difficult for him than in the past. His broken brain has to work harder to process simple conversations and ideas. If we have an outing or appointment during the day, he almost always comes home exhausted. He still loves interacting with people, but the mental challenge wears him out.
That exhaustion was one of those dementia symptoms I noticed long before the doctors agreed with me that anything was wrong. The simplest tasks seemed to tire him, and he took naps whenever he had the opportunity—something he’d never done before. I wondered if he was aging prematurely, and in a way, I guess he was. If you look at photos of him now compared to even a few years ago, you can see the toll his disease has taken on his face. Of course, that’s nothing like the toll it has taken on his life.
Tom’s sundowning means I can’t ask him questions late in the day and expect a coherent (or any) response. His tremors worsen, so he’s more likely to spill his food and drinks. For the past month or two, whether or not we have an outing, he often takes a late-afternoon or early-evening nap and is still ready for bed as early as 8 or 9 p.m.
When he goes to bed this early, he may have a restless night, or he may sleep well. Trying to get him to take an earlier nap, as you can imagine, is about as effective as getting a cranky child to do the same. But there have been days when he’s taken naps morning, afternoon, and evening—and still gone to bed by 9 p.m.
On some occasions, his sundowning results in agitation. That usually relates to something important to him such as his online games, a favorite television show, or even his food. Before his back and leg pain increased, he went through long months of pacing the house in the afternoons and evenings (also tied to his obsessive behaviors because he was adding steps on his FitBit).
One night this week, he brought his iPad to the dinner table because his online golf game had frozen. Upset because it wasn’t working, he didn’t want to stay in his recliner, but he also didn’t want to eat dinner without finishing the game. Once or twice, he has left the house in the evening without telling me, but so far, I’ve always known about it and gone after him.
Over the last few months, sundowning has also caused us to miss several evening choir rehearsals. Sometimes he goes to bed during the time of the rehearsal and sometimes not, but trying to force him to attend would serve no purpose.
Since his confusion increases as the day goes on, he struggles more to keep up with the music in the evenings, and I foresee a day when we give up singing in the adult choir altogether. But we also have the blessing of singing in a bimonthly senior choir that ministers at nursing homes and adult care centers. Tom enjoyed working with senior adults long before we fit the category, and since this choir meets mid-morning (early mornings can also be a challenge for him), he does well.
I’ve become a much lighter sleeper in the past couple of years (similar to having a newborn and waking when they wake), so if he’s agitated at night, I don’t sleep well either. I’ve already adjusted my work schedule somewhat to match his shorter waking hours, and I may need to adjust it further.
For right now, I enjoy the quiet when he goes to bed early. And sometimes, I even write blog posts.
If someone you know is living with dementia, have you experienced sundowning? How has it manifested in your friend or loved one’s life? Feel free to share your story in the comments below or on social media. Our story matters—and so does yours.
Marti, as I read this post, I thought of our son-in-law Brett’s mother Lynn. She is in the later stages of Alzheimer’s and goes to bed very early, sleeping 9-12 hours.
Thank you for your honesty and vulnerability! You are a wonderful storyteller, particularly with this painful personal journey!
I’m so sorry I didn’t see this until now, Paula (usually I get notifications, but it missed a few). My heart hurts for Brett’s family too. I do see this as a calling, so thank you for your encouragement. So grateful for your friendship and support!