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 30 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.
At the Heart of Good Care March 12, 2024 - This is the last in a series of five blogs about nursing home care. My old friend Billy called me recently to ask: “What the hell is ‘person-centered care’ supposed to mean? I toured three nursing homes and each of…
Choosing a Home That Cares December 12, 2023 - Ted, now 73, was diagnosed with Alzheimer’s two years ago. His wife, Andrea, attends a caregiver support group I lead. Recently she told the group, “I know it’s early and my husband is far from needing a nursing home now,…
Transforming Nursing Homes September 7, 2023 - “The poor aides are being forced to care for 14 people each! They’re exhausted and the residents aren’t getting the care that they need. It’s hell for all,” a weeping husband in my caregivers support group told us after visiting…
When the Balance Tips May 3, 2023 - Thud! Lydia had fallen again. Every time Sylvia left the room, her sister got up to follow her. If Sylvia went to fix dinner, Lydia, who has Alzheimer’s disease and vertigo, would try to tag along but forget to use…
Why Are Nursing Homes So Depressing? January 17, 2023 - Parents beg their children, and spouses entreat each other, “Promise you’ll never put me in a nursing home!” It’s a promise hard to refuse and harder to keep. Newcomers to the Alzheimer’s caregiver support groups I lead often will make…
Bathing Demystified: Finding a Better Way June 2, 2022 - This is the third of three blogs about dementia and bathing. You’ll find part 1 here, and part 2 here. People with dementia may not be able to tell you why they don’t want to bathe. But the more you…
Bathing Demystified: What’s Going On? May 4, 2022 - This is the second of three blogs about dementia and bathing. You’ll find part 1 here and part 3 here. Resistance to bathing is common in people with dementia. But it often blindsides the family caregiver because it seems out of character for…
Bathing Demystified: The Person Comes First April 6, 2022 - This is the first of three blogs about dementia and bathing. You’ll find part 2 here, and part 3 here. I didn’t know enough. I knew that people with Alzheimer’s and other dementias are sensitive to temperature, so I heated the bathroom…
Don’t Turn Your Back October 22, 2021 - As recently as 1982, the late Robert Terry, MD, a groundbreaking neuropathologist working specifically on Alzheimer’s disease, was quoted in the Washington Post, saying: All diseases are depersonalizing to some extent. But you’re still human…But a person with a serious…
The Father: Dementia from the Inside June 17, 2021 - The Father has received much attention and won two (in my opinion well-deserved) Academy Awards. It engages viewers as no other movie about dementia has because they experience the effects of the disease the way the person living with it…
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…
