“I started to notice, in the winter especially, that around 5 o’clock, he would change,” says Pauline of her husband, Paul, who was diagnosed with dementia 17 years ago.
“We could be sitting in the living room quietly, and all of a sudden he would announce, ‘Well, it’s almost 10 o’clock. I have to go home.”’
Pauline and Paul Martin have been married for 68 years. They met at a church dance in England when she was 15 and he was 13. (“It was Tuesday the 29th of November, 1938, just before seven, and I saw this tall, tall boy walk in the door and, well, I’m telling you a bolt just went through us both,” Pauline says.)
“And so when he told me ‘it’s time to go home,’ his mind was right back to when we were teenagers,” says 92-year-old Pauline from her condominium in White Rock, B.C.
In his highly distressed and agitated state, Paul, a retired navy plane navigator, was fulfilling a war-era mission of sorts.
His childhood village was about a three-mile bike ride from Pauline’s. But the war meant curfews—Paul had to be in his home, the apartment above the tire shop his parents owned, by 10 pm. No exceptions, even for this courtship with the love of his life.
“No way could I convince him that we were already home,” says Pauline of those nights in their living room. “He would get almost violent, telling me “I’ve got to go home! My parents are wondering where I am!” Pauline decided quickly never to argue. She would instead pull on her coat and head with Paul into the night.
“I can’t tell you how many times we walked around White Rock trying to find his father’s tire shop,” says Pauline. Eventually, when they were both tired, she would say, “maybe we’ve taken the wrong way and we should go back again.” Paul would usually agree, they would go back to their living room, and Paul would fall asleep around one in the morning.
But there were times Paul refused to let Pauline walk with him. On those nights, Pauline followed her husband.
“I stayed about 50 yards behind him and he would turn around and say ‘go home, stop following me!’ Eventually he got tired, propped himself against a lamppost…we’d walked about four blocks. So I casually went to pass him and he looked at me and said ‘What are you doing here?’ I said, ‘I’m on my way home, would you like to come with me?’”
“I took his hand and we walked home and he said, ‘Do you know all the time we’ve been together, there’s been this old woman following me…’ Then he looked around and said ‘I can’t see her now, though. Do you know she used to be in an asylum….?’ ”
There’s humor in Pauline’s story, and she’ll laugh when she shares it, but she will cry too. She took care of Paul for 15 years (he recently moved to a nursing home) and “sundowning was one of the hardest parts of the disease,” she says.
What is sundowning?
Sundowning is an oddly cute expression used to describe a difficult phase of Alzheimer’s disease.
For about 20 percent of Alzheimer’s patients, there is a point in the day, often late afternoon to early evening, when their symptoms become more acute. “People may be confused about where they are or what’s happening to them. They may become more resistive, angry, belligerent,” says Dr. Joel Sadavoy, Director and Founder of the CARERS program at Mount Sinai Hospital in Toronto.
Overall agitation intensifies; and sometimes even docile people become violent. “From my experience, it’s impossible to know how long it will last, but it is time limited,” says Dr. Sadavoy. “It’s usually a few hours.”
Sundowning symptoms peak during the middle stages of the disease and, in a cruel irony, ease as the disease gets worse. Paul’s symptoms disappeared after about 18 months, around the time his ability to speak started to decline.
The most accurate way to talk about sundowning is that we don’t really know what’s happening.
When it comes to what causes sundowning, we don’t have answers, but we do have theories.
• Dementia attacks the part of the brain that controls our circadian rhythm, the internal clock. That means the systems that keep us sleeping at night and active during the day are compromised.
• Darkness reduces sensory stimulation. That means your charge is getting less input from her environment—fewer sounds, fewer visual clues to what’s happening around her. That can cause disorientation and intense frustration. Sundowning is her way of trying to cope.
• Shadows in dim light can add to disorientation and confusion, causing people to imagine they are seeing things that aren’t there. What they are conjuring could cause them to become agitated, angry or scared.
• By the end of the day, people with sundowner’s syndrome may be overly tired, physically or emotionally.
In the end though, “The most accurate way to talk about sundowning is that we don’t really know what’s happening,” says Dr. Sadavoy.
What can you do about sundowning?
“People told me it helped if you kept the blinds down and the lights on,” says Pauline, “but I didn’t find that worked.”
Some people living with Alzheimer’s do benefit when they are shielded from the change in light outside. Full spectrum lights (the kind often used by gardeners to grow seedlings) also help some people.
“Effective management [of sundowning] is always interpersonal,” says Dr. Sadavoy. “That means reducing the demands on someone who is agitated. Reassuring them that you, the caregiver, are there and that everything is under control. Try to distract and redirect their attention to anything they might enjoy, music for example.” Why does that work?
“When you focus on reducing demands, what you’re doing is reducing pressure on the brain to respond to the environment,” says Dr. Sadavoy.
“For example: Not asking them to independently undertake a task, like a shower or having supper, or going for a walk,” he explains. “Sometimes those can be helpful, if they’re diverting tactics, but sometimes the usual activities that someone has been involved in don’t work at this time. So caregivers should be shielding them from that, and be prepared to step in and take over. That’s reassuring and calming to the patient.”
You should also make sure to clear out dangers in the house. “If wandering or leaving is part of the symptom package, then take steps to ensure doorways are properly secured at those times; making sure the agitated person doesn’t attempt to cook, smoke, or drink,” says Dr. Sadavoy.
Are there drugs for sundowning?
“Sometimes the caregiver can be in an impossible situation,” says Dr. Sadavoy. “For some people, it gets to be a really overwhelming time and interpersonal strategies may not be sufficient.”
There are prescriptions available, but this should be the option of last resort. “If there’s a degree of agitation that’s uncontrolled and can’t be managed, and where there’s obvious distress as a result, sometimes the only way to the help the person is with medication—not to drug people, but to give them a rest from their upset,” says Dr. Sadavoy. “But you try everything else first.”
Anti-psychotic drugs are the class most commonly prescribed for sundowning. They are effective, but they carry risks. “Medications should be used in a judicious and well-thought-out fashion in concert with a physician who knows about this,” says Dr. Sadavoy.
For Pauline, sundowning may have been the toughest part of her job as Paul’s caregiver, but she was on a mission too: “to continue the loving relationship we had,” she says. “Because this is still the person that I love, no matter what.”
Jasmine Miller is a Toronto-based writer and editor.
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