All Night Long–Sundown Syndrome

Remember that Lionel Richie song, “All Night Long?”

Well, sundown syndrome isn’t the same thing Lionel was singing about–but it may be what many Alzheimer’s folk are doing–

Sundown Syndrome is also called sundowning or sunsetting–is a behavior common in people with Alzheimer’s disease.

In a less drastic form, aging folk simply don’t need to sleep as much as their young counterparts–or they doze off and on all day and then feel like kicking up their heels all night.

Sundown Syndrome has some unique characteristics: Confusion, anxiety, agitation, or disorientation (common with Alzheimer’s in general)  that appear to be heightened after dusk and into the evening hours.  The episodes may last a few hours or throughout the night.

I know, my mom was a real sundowner. During the last years of her life when I was her primary caregiver. I’d wake to hear a crash, or hear her rustling in the pantry, or her calling my name or banging something over and over and over….and over. You could lose your religion (sanity/ability not to go bonkers) when incessant unnecessary banging wakes you night after night. And there’s little you can do to console them.

Here’s a poem I wrote during that time.

Mother Wanders a Dark Hall,

two, three, four in the morning

calling and calling loved ones frozen on the other side of matte and frame.  

No one answers.  

She leans against their glazed faces hung vertical on the hard wall and wonders…where has everyone gone? 

o one knows the exact cause of sundown syndrome, but contributing factors include physical and mental exhaustion (after a long day) and a shift in the internal body clock caused by the change from daylight to dark. Medication can factor in, as well as the fact that life slows down and as other people leave, go to sleep, get quiet, the agitation and paranoia Alzheimer’s folk feel is heightened by that sense of “where is everyone? Something’s changed!” 

Sundowning is draining on caregivers. (Ya think?)

I wrote in my book Mothering Mother

Wanderings

Crash! I roll over; the soft red numbers on the clock read 5:02. I fumble for my robe. In the summer, there’s already a soft light to the sky, but it’s December and the dark cold goes through me. This is my third time up. Mother stands in her apartment living room wearing a thin nightgown, not the one I put on her. She’s trembling. I don’t want to turn on the lights. I don’t want to see.“Let’s get you back into bed.”I help Mother back to bed.

She’s unsteady and I’m afraid she’ll take me down with her. Her Parkinson’s is worse at night after the medication has worn off, yet it has a way of coming and going. Just an hour ago she obviously got out of bed, walked into this room and threw down a shelf. Now, she’s the statue.Each morning I wake to the chaos of her nighttime wanderings. That’s when I have to face it.We haven’t moved more than an inch in the last few minutes.I’m used to this, but at five in the morning, it’s hard to take. I pull on her to get going.

Here are some suggestions for helping a loved one with sundown syndrome: (from US News and World Report http://health.usnews.com/usnews/health/brain/alzheimers/alz.manage.safety.htm

• Schedule your day so that the more difficult tasks are done early in the day, when the person is less likely to become agitated.
• Watch the person’s diet and eating habits. Restrict sweets and drinks with caffeine to the morning hours. Try serving the person a late afternoon snack or an early dinner. To help the person relax, try decaffeinated herbal tea or warm milk.
• Keep the house or room well lit. Close the drapes before the sun goes down, so the person doesn’t watch it become dark outside.
• If the person falls asleep on the sofa or in a chair, let him or her stay there. Don’t wake the person to go to bed.
• Try distracting the person with activities he or she enjoys. Soothing music or a favorite video may help, as well.
• Encourage the person to engage in some physical activity–such as walking, if able–during the day. This may help him or her to sleep better at night.
• Ask the doctor if there’s some medication either you–or your loved one can safely take.
• Sleep whenever you can.
• Ask for a night off at least one night a week–even if you have to go to a hotel. Get a relative to cover for you. They need to help out–and you simply have to ask for it–or accept their money and hire a qualified professional (experienced CNA)
• If it gets bad, you may have to consider a care facility–your own health may be in danger–even more than your loved one’s. They might be able to go without adequate sleep, but you can’t.

My heart goes out to you. I’ve been there. I did it. I don’t even know how I did it–or at times,why. I did it because I loved my mother, because I believed I should do it, (care for her) because I couldn’t find the help or facility I could trust, because…

I’m sure you have your own reasons for caregiving at home, and I too, am a big famly caregiving advocate. But please, don’t lose your health or your marriage over this. No one benefits. Seek help. Sundowning is really, really difficult to handle. Call your community resources–the hospital, hospice (they can guide you to your area resources), the council on aging, adult day care–all these places have a list of people who can help.

ASK and ACCEPT HELP.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon and in most bookstores

www.mothering-mother.com