Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 23 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
Guilt: The Dark Shadow of Responsibility March 10, 2021 - A couple of years ago, at a meeting of an Alzheimer’s caregivers’ support group I lead, one topic dominated. Doris, who is caring for her mother, began: “My mother trails me around the house all day long! So, every afternoon…
How Testing Sells People with Dementia Short November 17, 2020 - Jane and Henry went to the memory center for a diagnostic workup because Jane had been having increasing problems with her memory. She underwent a battery of neuropsychological tests, and a week later they returned to meet with the diagnostic…
Pursuing the Diagnosis No One Wants to Hear September 3, 2020 - Frank told his caregivers’ support group, “I finally got my wife, Millie, to agree to see the doctor about her forgetfulness. He gave her a quiz to test her memory. Millie didn’t do so well, but the doctor said, ‘It’s…
A Patch of Clear Sky June 4, 2020 - In May 1993 my mother was in the last stage of Alzheimer’s disease. She needed to be fed by hand, so I timed my visits to the nursing home where she then lived so that I could feed her lunch.…
Do People with Dementia Lose the Right to Die? April 15, 2020 - “If I’m not me, I don’t want to be.” That’s the motto of a healthy man in his 80s who was interviewed some years ago by the New York Times. I’ll refer to him as Robert. Like many people, Robert…
When Giving In Is the Best Gift January 22, 2020 - Bill told his Alzheimer’s caregivers support group, “My wife asked, ‘When are we going to see the grandchildren? We haven’t seen them in months!’ When I told her they were just here yesterday, she got mad at me. ‘They were…
What’s behind Sundowning? Part 2 October 18, 2019 - Every afternoon at about 3:30, Jack went around closing all the curtains in his house. At first his wife opposed him. “Why are you doing that? It’s still light out!” But even if she stopped him and opened the curtains,…- What’s behind Sundowning? Part 1 September 20, 2019 - When my mother was living with me, her Alzheimer’s was fairly advanced and she had begun to be fearful after dark. One evening, she came to me, trembling. “There’s a strange woman outside, trying to get in my window!” she…
Reaching Out for Help and Where to Find It July 23, 2019 - Bill gave very attentive care to his wife, Deborah, who had Alzheimer’s disease. Their son lived a couple of hours away and came to lend a hand every few weeks. Otherwise, Bill did everything himself. When I suggested he might…
Going It Alone in a Job Much Too Big for One Person May 7, 2019 - When people develop dementia in the United States, we rely on their families to take care of them. And a family member, most often a spouse or a daughter, almost always does step up. Then, as a culture, we appear…
Dementia: The Greatest Caregiving Challenge of All February 13, 2019 - A man in one of the Alzheimer’s caregiver support groups I lead wrote the following in a note to me: We caregivers come into this job ignorant and unprepared but we accept the load thrust upon us. There is no training course but we try to do our best. 
How Much Do People with Dementia Understand? December 27, 2018 - In the small crowd at the Alzheimer’s fundraiser, I spotted Frederick, who attended one of the support groups I lead. I went over to say hello. He was with his wife, whom I had not met before.
At the Heart of Dementia: A Challenge to Truth October 11, 2018 - Alec, whose wife had Alzheimer’s disease, had heard that people in the later stages of dementia often ask for their mothers. Nevertheless, the day Hilary asked him, “Where’s my Mom?” Alec was taken aback. Because they had always been completely…
When Things Aren’t What They Seem July 20, 2018 - One day at the Alzheimer’s day program he attended, Herman suddenly got up and left the room. As he charged down the hall and out the front door, Wendy, the program’s director, ran after him calling, “Herman, stop!” She caught…
Dementia in Films: Getting It Wrong November 8, 2017 - Fiona, a woman in her 70s living with Alzheimer’s disease, announces to her husband, Grant, “We are at that stage.” She means the point at which she belongs in a nursing home. Her husband, like almost all family caregivers, finds…
Dementia in Films: Getting It Right September 14, 2017 - I loved the novel Still Alice because it was an accurate portrayal of Alzheimer’s disease. And the movie Still Alice got it right too.
What Good Are Support Groups? June 12, 2017 - This was Chester’s first time at our caregiver support group. A man in his 70s, he told us about his wife who has Alzheimer’s disease and has become anxious whenever he is out of sight.
Accepting Losses, Discovering Gains March 22, 2017 - After my mother came to live with me, I gradually took on more and more of her care. By the end of the first year I was doing what any Alzheimer’s caregiver does. I bathed her, helped her dress, handled…
Preserving Autonomy against the Odds January 27, 2017 - When the doctor diagnosed my mother with probable Alzheimer’s, he also told her, “I want you to stop driving.” He said her reflexes and judgment weren’t good enough. By that point in her disease, my mother had trouble following conversations,…
Does She Still Recognize You? November 11, 2016 - An acquaintance I ran into at the supermarket stopped me with that question. It was one I got frequently when my mother was in the later stages of Alzheimer’s. The question made me uncomfortable. It seemed intrusive coming from someone…
