It happened more than ten years ago, but the moment stays with her.
Sara Stewart spoke at the dining table with her mother, Barbara Cole, 86 at the time, in Bar Harbor, Maine. Stewart, then 59, a lawyer, released one of her extensive visits outside the state.
Two or three years earlier, Cole had started showing disturbing signs of dementia, probably from a series of small strokes. “I didn’t want to pull her out of her house,” said Stewart.
So with a squadron of helpers-a housekeeper, ordinary family visitors, a vigilant neighbor and a meal delivery service-stayed in the house that she and her deceased husband had built 30 years earlier.
She was to manage it and she usually seemed cheerful and talkative. But this conversation in 2014 took a different turn.
“She said to me:” Now, where do we know each other from? Was it from school? “” Her daughter and firstborn remembered. “I felt that I had been kicked.”
Stewart remembers that he thought: “In the natural course of things you should die for me. But you were never supposed to forget who I am.” Later alone, she weeped.
People with advancing dementia regularly do not recognize to recognize beloved spouses, partners, children and brothers and sisters. By the time Stewart and her youngest brother Cole moved to a memory care facility a year later, she had almost completely lost the ability to remember their names or their relationship with her.
“It is quite universal in the later stages of the disease, said Alison Lynn, director of social work at the Penn Memory Center, who has led support groups for dementia caregivers for ten years.
She has heard many variations of this report, described a moment with sadness, anger, frustration, relief or a combination thereof.
These care providers “see a lot of losses, reverse milestones, and this is one of those benchmarks, a fundamental shift” in a close relationship, she said. “It can throw people in an existential crisis.”
It is difficult to determine what people with dementia – a category that includes Alzheimer’s disease and many other cognitive disorders – know or feel. “We have no way to ask the person or look at an MRI,” Lynn noted. “It’s all deductive.”
But researchers start investigating how family members react when a loved one no longer seems to know them. A qualitative study that was recently published in the Dementia magazine analyzed in-depth interviews with adult children who took care of mothers with dementia who, at least once, did not recognize them.
“It is very destabilizing,” says Kristie Wood, a clinical research psychologist at the University of Colorado Anschutz Medical Campus and co-author of the study. “Recognition confirms identity, and when it is gone, people feel that they have lost part of themselves.”
Although they understood that not -recognition was not a rejection, but a symptom of their mothers’ disease, she added that some adult children were blamed.
“They doubted their role.” Wasn’t I important enough to remember? “Wood said. They can withdraw or visit less often.
Pauline -Baas, the family therapist who developed the theory of “ambiguous loss” decades ago, points out that the physical absence can entail – such as when a soldier is lacking in action – or psychological absence, including non -recognition due to dementia.
Society has no way to recognize the transition when “a person is physically present but psychologically absent,” Boss said. There is “no death certificate, no ritual where friends and neighbors sit with you and comfort you.”
“People feel guilty when they mourn someone who is still alive,” she went on. “But although it is not the same as a verified death, it is a real loss and it just keeps coming.”
Not -Recognition takes different forms. Some family members report that although a loved one with dementia can no longer collect a name or an exact relationship, they still seem happy to see them.
“She stopped knowing who I was in the narrative sense that I was her daughter Janet,” said Janet Keller, 69, an actress in Port Townsend, Washington, in an e -mail about her deceased mother, the diagnosis of Alzheimer’s. “But she always knew that I was someone with whom she liked and wanted to laugh and hold hand.”
The comfort caregivers to still feel a sense of connection. But one of the respondents in the dementia study reported that her mother felt like a stranger and that the relationship no longer yielded emotional reward.
“I might as well visit the postman,” she told the interviewer.
Larry Levine, 67, a retired health care manager in Rockville, Maryland, saw his husband’s ability to recognize him unpredictably.
He and Arthur Windreich, a few for 43 years, were married when Washington, DC, legalized the same -sex marriage in 2010. The following year, Windreich was diagnosed by Alzheimer’s in the early start.
Levine became his caregiver until his death at 70, at the end of 2023.
“His condition zigzaged himself,” said Levine. Windreich had moved to a memory care unit. “One day he would call me” the nice man who comes to visit, “said Levine. “The next day he would call me by name.”
Even in his last years when, like many dementia patients, Windreich was largely non -verbal, “there was some recognition,” his husband said. “Sometimes you could see it in his eyes, this sparkle instead of the empty expression he usually wore.”
At other times, however, there was “no effect at all.” Levine often left the facility in tears.
He sought help from his therapist and his sisters and recently joined a support group for LGBTQ+ Dementia care providers, although his husband died. Support groups, personal or online, “are medicines for the caregiver,” said Boss. “It is important not to stay isolated.”
Lynn encourages participants in her groups to also find personal rituals to mark the loss of recognition and other reverse milestones. “Maybe they start a candle. Maybe they say a prayer,” she said.
Someone who would sit Shiva, part of the Jewish mourning ritual, can collect a small group of friends or family to recall memories and share stories, although the loved one did not die with dementia.
“It can be very validated to let someone else participate,” Lynn said. “It says,” I see the pain you are going through. “
Occasionally the fog of dementia seems to be briefly lifted.
Researchers from Penn and elsewhere have pointed to a surprising phenomenon called ‘paradoxical lucidity’. Someone with serious dementia, after having not been communicative for months or years, suddenly regains alertness and can come up with a name, say a few suitable words, joke, make eye contact or sing along with a radio.
Although common, these episodes generally only last seconds and do not mark a real change in the deterioration of the person. Efforts to recreate the experiences fail.
“It’s a blip,” said Lynn. But caregivers often respond with shock and joy; Some interpret the episode as proof that, despite deepening of dementia, they are not really forgotten.
Stewart came a few months before her mother died. She was in her mother’s apartment when a nurse asked her to get through the hallway.
“When I left the room, my mother called my name,” she said. Although Cole usually seemed looking forward to her: “She didn’t have my name as long as I could remember.”
It didn’t happen anymore, but it didn’t matter. “It was great,” said Stewart.
|
|
