I was taking my mother to Maine to visit her brother. They had lived in New Jersey within a few blocks of each other their entire lives until, due to her dementia, she moved in with me. A month later, he and my aunt moved to Maine to be near their daughters. I knew my mother missed him, so I thought this trip would make her happy. Indeed, she was overjoyed when I told her we were going.
When we entered the airport terminal in Newark, she looked around and, alarmed by the crowds and confusion, said, “I didn’t know it was going to be like this!” I assured her it was OK; I’d stay right beside her. But her anxiety rose again after we were seated in the plane.
“When are we leaving?” she asked.
“We need to wait till everyone’s onboard,” I replied.
Two minutes later, “When are we leaving?”
“When everyone’s here.”
Again and again, until—a long 15 minutes after we boarded—they closed the door.
The plane, of course, didn’t immediately start moving, and my mother was at the end of her rope. “This is ridiculous! If we had driven, we would be there by now!” she announced.
At the time, I attributed my mother’s behavior to her “confusion.” There was a lot about Alzheimer’s that I didn’t yet understand, including the surprisingly far-reaching and troubling effects of memory loss. It’s important to understand because once we comprehend the real consequences of the damage Alzheimer’s causes, we are less likely to blame people with Alzheimer’s for their behavior. We are more likely to look for the ways we can support them.
Yes, people living with Alzheimer’s or another dementia will forget where they put their keys, their glasses and a million other things that will keep their families busy searching. Later on, they will also forget that they had breakfast an hour ago. They have limited ability to form new memories, so everyday, moment-to-moment events don’t get stored.
Keeping track of small events is how we measure the passage of time. While we waited to take off, I could tell that we had only been on the plane a short time because I could remember arriving at the departure gate, getting on the plane, and the little things I observed once we were in our seats. From all that, I had a good sense of how much time had elapsed since we boarded. But for my mother, who could remember none of it, we could have been on the plane two minutes or four hours.
Without the ability to recall the immediate past, the person living with Alzheimer’s lacks the tools to stay anchored in time.
This is one of the reasons it becomes unsafe to leave people with Alzheimer’s alone. You may tell them you’ll be back in an hour, but ten minutes after you leave, it may feel to them as though you’ve been gone three hours. They may become so worried, they go out looking for you. If you come home to find your loved one anxious about your absence, it’s time to find someone to keep them company when you go out.
In addition to orienting us in time, the ability to form new memories helps orient us to place. Without recalling the recent past, the person can’t make sense of unfamiliar surroundings.
When we were with her brother in Maine, my mother was happy, understood why we were there and showed little anxiety. But whenever we were in the motel, she would look around the room and ask where we were and why, and “When are we going home?” Saddest to tell, the day after we returned home, she didn’t remember the trip or seeing her brother at all.
This degree of memory loss and subsequent disorientation doesn’t happen all at once, of course. By the time of our trip to Maine, my mother had shown symptoms of Alzheimer’s for more than six years.
A lucky few with Alzheimer’s truly live in the moment. With the near past forgotten, the future inconceivable and the present all there is, they regain an appreciation of now, of a snowflake, a crocus, a warm breeze.
However, many people in the middle of Alzheimer’s are more often adrift in time and place. Their world seems unpredictable and unfamiliar, and anxiety is an undercurrent in their lives.
One way they try to cope is to seek that one bit of information they think will make them feel secure. They ask “What time do we go?” or “Where is Henry?” or anything else that could help anchor them. But five minutes later, they forget they asked, anxiety returns, and they ask again.
It is one of the behaviors that, understandably, most exasperates caregivers. It’s very hard not to blurt out, “I just told you that!” We have more patience, of course, if we stop expecting that the question will stay answered.
How do people with Alzheimer’s experience their own repetitions?
One man told social worker and author Lisa Snyder, “I don’t do it deliberately. It’s just that each time, it’s like a new idea.”
That captures perfectly how innocently he asks each time.
If his partner always, or almost always, answers calmly and patiently (as this man goes on to say she does), his feeling of trust and security in his partner is maintained. A relationship they can rely on, in a world that feels increasingly unpredictable, provides crucial safety to those who have Alzheimer’s.
Fortunately, people with dementia can still acquire new habits. If caregivers post a whiteboard in a prominent place, they can write the answer to that repeated question on the board. When asked, “Where is Henry?” they can consistently say, “Go look at the board.” Even those with failing memories will eventually be able to remind themselves to do that in order to find out that Henry is at work and will be at home at 5:30. This gives them some control over their own anxiety and reduces the stress on the caregiver. And that benefits them both.
Old habits can be put to valuable use, and new ones added, in setting a daily routine. People with Alzheimer’s gain a sense that they know what happens next from routine. It makes their world more predictable, and that reduces anxiety. Walking the dog comes faithfully after breakfast. Lunch comes after the letter carrier drops off the mail. After dinner we always play cards. Feeling the comfortable regularity of the day’s unfolding helps orient them and adds to their security.
Yes, Alzheimer’s is a dreadful and frightening disease. It takes courage to face up to what it does to people’s minds. But only when we really understand what our loved ones face and how that influences their behavior can we respond appropriately, helpfully and wholeheartedly.
There is no cure, yet, for Alzheimer’s. But there is a treatment, one that reduces the pain of loneliness, anxiety and insecurity. That treatment is us.
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.
