If they no longer recognize you

It happened more than a decade ago, but the moment remains with her.

Sara Stewart spoke with her mother Barbara Cole, 86, in Bar Harbor, Maine, at the Barbara Cole dining table. Ms. Stewart, then 59, a lawyer, made one of her extended visits from outside the state.

Two or three years earlier, Ms. Cole had started showing disturbing signs of dementia, probably from a number of small strokes. “I didn't want to pull her out of her house,” said Ms. Stewart.

With a season of helpers-one housekeeper, regular family visitors, a watchful neighbor and a food supply service, Ms. Cole had built in the house that she and her deceased husband had built 30 years earlier.

She made it and she usually seemed happy and talkative. But this conversation in 2014 took a different turn.

“She said to me:” Well, how do we know each other? Was it from school? “” I felt like I was kicked. “

Ms. Stewart remembers that you should die in front of me. But you should never forget who I am. “Later she cried alone.

People with progressive dementia do not recognize loved spouses, partners, children and siblings. When Ms. Stewart and her youngest brother Ms. Cole moved to a memory care facility a year later, she had almost completely lost the ability to remember her names or relationship with her.

“It is quite universal in the later phases of the disease,” said Alison Lynn, director of social work in the Penn Memory Center, who has managed support groups for dementia supervisors for a decade.

It has heard many variations of this report, a moment that was described with grief, anger, frustration, relief or a combination.

These supervisors “see many losses, reverse milestones, and this is one of these 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 know or feel with dementia – a category that includes Alzheimer's disease and many other cognitive disorders. “We have no way of asking the person or looking at an MRI,” noted Ms. Lynn. “Everything is deductive.”

However, the researchers begin to investigate how family members react when a loved one no longer knows them. A qualitative study recently published in the magazine Dementenz analyzed in -depth interviews with adult children who took care of mothers with dementia who recognized them at least once.

“It is very destabilized,” said Kristie Wood, clinical psychologist at the University of Colorado Anschutz Medical Campus and co-author of the study. “The recognition confirms identity, and when it is gone, people feel like they have lost part of themselves.”

Although you understood that the non -cognition was not a rejection, but a symptom for her mother's illness, added her, but some adult children were still responsible.

“You questioned your role.” Wasn't I important enough to remember? “, Said Dr. Wood. You can withdraw or visit less often.

Pauline boss, the family therapist, who developed the theory of “ambiguous loss” decades ago, indicates that it is physical absence – as if a soldier is missing in action – or psychological absence, including non -cognition due to dementia.

The company has no way of recognizing the transition if “a person is physically present but is psychologically absent,” said Dr. Boss. There is “no death certificate, no ritual in which friends and neighbors sit with them and comfort them.”

“People feel guilty when they mourn for someone who is still alive,” she continued. “But although it is not the same as a verified death, it is a real loss and always comes.”

Not recognition accepts different forms. Some relatives report that a beloved person with dementia can no longer call up a name or a precise relationship, but they still seem to be happy to see them.

“She stopped knowing who I was in the narrative sense that I was her daughter Janet,” said Janet Keller, 69, actress in Port Townsend, Washington, in an e -mail about her deceased mother, at which Alzheimer's was diagnosed. “But she always knew that I was someone with whom she liked and with whom she laughed and with whom she wanted to hold her hands.”

It consoles the nursing staff to still feel a feeling 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 provided an emotional reward.

“I could just as well visit the Mailman,” she told the interviewer.

Larry Levine, 67, a retired health manager in Rockville, Md.

He and Arthur Windreich, a couple for 43 years, had married same -sex marriage in 2010 in 2010. The following year, Mr. Windreich received a diagnosis of early Alzheimer's disease.

Mr. Levine became his caregiver until 70 a.m. in late 2023.

“His condition in the zigzag,” said Mr. Levine. Mr. Windreich had moved into a storage unit. “One day he would call me” the nice man who comes to visit, “said Mr. Levine.” The next day he would call me my name. “

Even in his recent years, when Mr. Windreich, how many dementia patients, was largely non -verbal, “there was a certain recognition,” said his husband. “Sometimes you could see it in his eyes, this shine instead of the empty expression that he normally wore.”

At other times “there was no influence at all.” Mr. Levine often left the facility under tears.

He searched for help with his therapist and his sisters and recently joined a self -help group for LGBT dementia supervisor, even though his husband died. Self -representative groups or online are “medicine for the caregiver,” said Dr. Boss. “It is important not to stay isolated.”

Ms. Lynn encourages the participants of her groups to find personal rituals in order to mark the loss of recognition and other reverse milestones. “Maybe they light a candle. Maybe they say a prayer,” she said.

Someone who would sit Shiva, part of the Jewish funeral ritual, could collect a small group of friends or family to remember and share stories, even though the loved one has not died of dementia.

“It can be very validating,” said Ms. Lynn. “It says: 'I see the pain you go through.'”

Every now and then the fog of dementia seems to be briefly lifting.

Researchers from Penn and elsewhere have referred to an astonishing phenomenon, which is called “paradoxical clarity”. Someone with severe dementia, after being non -communicative for months or for years, suddenly grants vigilance and can find a name, say a few suitable words, crack a joke, make eye contact or sing along with a radio.

Although these episodes often only take seconds and do not mark a real change in the decline of the person. The efforts to reproduce the experiences tend to fail.

“It's a blip,” said Ms. Lynn. But supervisors often react with shock and joy; Some interpret the episode as proof that they are not really forgotten despite the deepening of dementia.

Ms. Stewart came across such a blip a few months before her mother's death. She was in her mother's apartment when a nurse asked her to get down the hallway.

“When I left the room, my mother called my name,” she said. Although Ms. Cole usually seemed to be pleased to see her, “she hadn't used my name as long as I could remember.”

It didn't happen again, but it doesn't matter. “It was wonderful,” said Ms. Stewart.

The new age is produced by a partnership with KFF Health News.