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 I wasn’t close to, and it was hard to answer. The truth was complicated.
I merely replied, “Sometimes.”
I often sensed that what people really wanted to know was, “Is it true what I hear about Alzheimer’s?”
It is true that Alzheimer’s damage eventually spreads to the area of the brain where face perception takes place. Then people with the disease begin to have trouble recognizing familiar faces and, in time, objects as well. At first it is intermittent; later it is more constant.
But this does not immediately mean they don’t know who family members are.
We identify people by many means. Wilbur has Alzheimer’s disease and often can’t distinguish people by their faces. His son, Pete, who lives in China, came home for a visit.
The father showed no sign of knowing his son until Pete spoke. Then Wilbur exclaimed, “Oh! So that’s who you are!”
Not only face and voice, but gesture and manner help us identify people. These other avenues to recognition remain open longer.
My friend, Connie, went to the nursing home to visit her husband, Robert, who had late-stage Alzheimer’s. Robert was unusual in that his verbal ability was fairly intact despite his advanced disease. The last few times Connie had visited, she suspected that Robert did not recognize her.
This time he suddenly said, “I don’t know who you are, but I like you. Let’s get married!” He paused. “But we won’t tell anyone.”
Thirty-two years before, when they married, they kept it a secret and told no one for months.
Robert did recognize Connie. He recognized her emotionally. Being with her resonated with meeting the love of his life.
The first instance of nonrecognition can come on suddenly and dramatically. One caregiver told my support group that his wife called their neighbor to report that there was a strange man (the caregiver himself) sitting in their living room. I’ve heard similar stories from others.
In the beginning, when this happens only occasionally, the best policy is to reassure the person that “we’ll get this straightened out.” Soon enough—a matter of minutes or an hour—the person will recognize the loved one again.
But when it is constant (a husband stops recognizing his wife, for example), it can imperil her sense of her own life story, which is tied so closely with his.
It can break your heart—if you let it.
Margie had a wonderful marriage to Ted—40 years, four children and sweet harmony. When Ted’s Alzheimer’s prevented him from recognizing Margie, he claimed she was not his wife. She tried to convince him she was by showing him their wedding pictures. He accepted that the pictures were indeed what she claimed, but insisted she was not his wife. Shattered, she persisted. But the more upset she got, the more agitated he got. Margie finally called their daughter to intervene.
The daughter took Ted for a walk to calm him down and then for a cup of coffee. As they sat over coffee, he said, “I know that lady loves me, but I love Margie.”
Ted’s proclamation of enduring love allowed Margie to see that there is a world of difference between not recognizing and not remembering. And distant memories remain for a long time.
Further compounding the trouble in identifying loved ones, Alzheimer’s often produces a generational jump backwards. With more recent memories slipping away, people often forget the years when they aged from 40 to 70. They sincerely believe they are still in young middle age or early adulthood. Ted’s sense of things might have been, “I’m 30. This 70-year-old woman, who says she’s my wife, can’t possibly be my Margie.”
Sometimes people will know a family member is someone they love, but because of the generational shift, a mother might reason that her daughter must be her sister, or her 80-year-old sister must be her mother. Understanding why that is happening makes it easier to allow it to be. Correcting the person only ends in an argument.
One Alzheimer’s caregiver excelled at avoiding confrontation with her husband. When he mentioned his wife, she would say, “Tell me about her.” He enjoyed talking about his wonderful wife, and, needless to say, she enjoyed hearing about herself!
As the disease progresses, people with Alzheimer’s gradually lose language and have more difficulty focusing attention. “Does she still recognize you?” becomes harder to answer. But it also loses importance.
When my mother reached that point, a few people ventured to ask, “If she doesn’t recognize you, why do you go to visit?”
It didn’t matter if she didn’t recognize me. There were compelling reasons to go.
I still recognized her. I still loved her. I felt keenly the finite time I had left to be with her.
Most of all, I went because, even though she was unresponsive much of the time, sometimes she would open her eyes and smile when she saw me. When I kissed her, she would try to kiss me back. She would make contented sounds when I stroked her cheek and eagerly lean her head on my hand.
I went because she still recognized love.
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.