You know how frustrating and heartbreaking dementia symptoms are from the point of view of a caregiver. You know the pain of slowly seeing a loved one slip away. But what is it like for her? What is it like for a person to slowly -- or sometimes quickly -- forget almost everything she ever knew?
Dementia is ultimately a lonely condition, and you can never truly know what it’s like for your loved one. But by asking experts – and people who are themselves in the early stages of the disease – we can get some idea.
Sundowning, or sundown syndrome, affects some people who have Alzheimer's disease and dementia. People with dementia who "sundown" get confused and agitated as the sun goes down -- and sometimes through the night.
Sundowning may prevent people with dementia from sleeping well. It may also make them more likely to wander. Due to the stress it puts on caregivers, sundowning is a common cause of caregiver burnout.
“It’s devastating,” says Mary Ann Becklenberg, of Dyer, Ind., who was diagnosed with Alzheimer’s disease in 2008 at the age of 62. “I am acutely aware of all those areas in which I am not competent anymore, both small and large. Coming to terms with my own deficiencies is so hard.”
Learning something about the other side, beyond the dementia symptoms you see, could make you feel closer to your loved one. It could also make you a more understanding and effective caregiver.
Memory Loss: “Everything Became Fuzzier”
Dementia symptoms result from damage to the brain caused by disease or injury. As brain cells die, it becomes difficult or impossible to store new memories or access old ones. Sometimes dementia comes on suddenly, after a stroke or head injury. Often it comes on more slowly as the result of conditions like Alzheimer’s disease or Parkinson’s disease. Most causes of dementia cannot be reversed.
Mary Ann Becklenberg is in the early stages of Alzheimer’s disease, but her dementia symptoms have already had an enormous impact on her life. In 2006, she had to leave her position as a clinical social worker because she could no longer meet the responsibilities. “The world became much less defined than it had been,” says Becklenberg. “Everything became fuzzier.”
The diagnosis didn’t come until later. John Becklenberg says that he first knew that his wife had Alzheimer’s disease after she returned from a monthlong trip to California. “I was there with her for a week of her stay,” he says. “But when she got back, she didn’t remember that I’d been there at all.”
“That was so hard,” says Mary Ann Becklenberg, who now serves as an Alzheimer’s Association early stage adviser. “John listed all these things we did and places we went, and I didn’t remember any of them. That was when we knew.”