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.<\/p>\n
When we entered the airport terminal in Newark, she looked around and, alarmed by the crowds and confusion, said, \u201cI didn\u2019t know it was going to be like this!\u201d I assured her it was OK; I\u2019d stay right beside her. But her anxiety rose again after we were seated in the plane.<\/p>\n
\u201cWhen are we leaving?\u201d she asked.<\/p>\n
\u201cWe need to wait till everyone\u2019s onboard,\u201d I replied.<\/p>\n
Two minutes later, \u201cWhen are we leaving?\u201d<\/p>\n
\u201cWhen everyone\u2019s here.\u201d<\/p>\n
Again and again, until\u2014a long 15 minutes after we boarded\u2014they closed the door.<\/p>\n
The plane, of course, didn\u2019t immediately start moving, and my mother was at the end of her rope. \u201cThis is ridiculous! If we had driven, we would be there by now!\u201d she announced.<\/p>\n
At the time, I attributed my mother\u2019s behavior to her \u201cconfusion.\u201d There was a lot about Alzheimer\u2019s that I didn\u2019t yet understand, including the surprisingly far-reaching and troubling effects of memory loss. It\u2019s important to understand because once we comprehend the real consequences of the damage Alzheimer\u2019s causes, we are less likely to blame people with Alzheimer\u2019s for their behavior. We are more<\/em> likely to look for the ways we can support them.<\/p>\n Yes, people living with Alzheimer\u2019s 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\u2019t get stored.<\/p>\n Keeping track of small events is how we measure the passage of time. While we waited to take off, I<\/em> 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.<\/p>\n Without the ability to recall the immediate past, the person living with Alzheimer\u2019s lacks the tools to stay anchored in time.<\/p>\n This is one of the reasons it becomes unsafe to leave people with Alzheimer\u2019s alone. You may tell them you\u2019ll be back in an hour, but ten minutes after you leave, it may feel to them as though you\u2019ve 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\u2019s time to find someone to keep them company when you go out.<\/p>\n 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\u2019t make sense of unfamiliar surroundings.<\/p>\n 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 \u201cWhen are we going home?\u201d Saddest to tell, the day after we returned home, she didn\u2019t remember the trip or seeing her brother at all.<\/p>\n This degree of memory loss and subsequent disorientation doesn\u2019t happen all at once, of course. By the time of our trip to Maine, my mother had shown symptoms of Alzheimer\u2019s for more than six years.<\/p>\n A lucky few with Alzheimer\u2019s 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.<\/p>\n However, many people in the middle of Alzheimer\u2019s are more often adrift in time and place. Their world seems unpredictable and unfamiliar, and anxiety is an undercurrent in their lives.<\/p>\n One way they try to cope is to seek that one bit of information they think will make them feel secure. They ask \u201cWhat time do we go?\u201d or \u201cWhere is Henry?\u201d or anything else that could help anchor them. But five minutes later, they forget they asked, anxiety returns, and they ask again.<\/p>\n It is one of the behaviors that, understandably, most exasperates caregivers. It\u2019s very hard not to blurt out, \u201cI just told you that!\u201d We have more patience, of course, if we stop expecting that the question will stay answered.<\/p>\n How do people with Alzheimer\u2019s experience their own repetitions?<\/p>\n One man told social worker and author Lisa Snyder, \u201cI don\u2019t do it deliberately. It\u2019s just that each time, it\u2019s like a new idea.\u201d<\/p>\n That captures perfectly how innocently he asks each time.<\/p>\n 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\u2019s.<\/p>\n 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, \u201cWhere is Henry?\u201d they can consistently say, \u201cGo look at the board.\u201d Even those with failing memories will eventually be able to remind themselves<\/em> 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.<\/p>\n Old habits can be put to valuable use, and new ones added, in setting a daily routine. People with Alzheimer\u2019s 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\u2019s unfolding helps orient them and adds to their security.<\/p>\n Yes, Alzheimer\u2019s is a dreadful and frightening disease. It takes courage to face up to what it does to people\u2019s 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.<\/p>\n There is no cure, yet, for Alzheimer\u2019s. But there is a treatment, one that reduces the pain of loneliness, anxiety and insecurity. That treatment is us.<\/p>\n","protected":false},"excerpt":{"rendered":" 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.<\/p>\n