On Tuesday, I woke up with a start. I checked my phone and saw that it was 11 am. I immediately panicked because I thought I’d slept through my alarm and had not taken my son to school. I called for my son to come into my room, but he did not come in. I called again, with no response. I got annoyed because I figured he must be in his room with his headphones on. I went into his room, and it was empty. I yelled louder for my son, but he did not respond.
I then got anxious and went into the living room, but saw no one there. Then, I started screaming for my son. I had no idea where he was. I checked every room again and looked in the backyard to see whether he was out there playing. I could not find my son anywhere! My whole body was shaking. I was shrieking my son’s name, and I had no idea what to do. I was about to cry when I put my head in my hands and noticed my hair was wet.
My mind started racing. I had just woken up, so why was my hair wet? What was going on? Where was my son? Then I had a flash of a memory from the morning. I had woken up on time. I had already taken my son to school. I had come home, taken a shower, and taken a nap.
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After I remembered where my son was, I was still shaking. I was disoriented and scared. The experience of losing my son was real for me, in the moment that it happened. For a few hours afterwards, I was still a bit shaky and anxious.
As I was standing there, shaking, trying to calm myself down, I immediately thought of my mom. People with dementia often have the same experience. They become disoriented to space and time and may believe something is happening that really is not. We may get frustrated by their behavior and upset if they come out of a room shrieking the name of a loved one who is not in the house and insisting that the person is lost. I was lucky because, when my brain had finally oriented to space and time, I understood that what had happened was not real. People with dementia often cannot reorient. In fact, attempting to reorient them and tell them what is “real” only increases their agitation and makes the problem worse.
We need to meet our loved ones with dementia where they are and enter into their reality. If I had dementia, it would have been best if my care partner had acknowledged my fear of losing my son and had helped me to find him. Maybe the “finding” meant a phone call to my child, or being told that he is not here but that we can write him a letter together. If you really know the person, there are many things you can do to safely be part of their world and meet their needs.
Now, if I had had dementia and no care partner at home with me, for sure I would have gone running out of my house in my robe to find my son. If someone had put locks on my doors to prevent me from wandering, I would kicked through the wooden door or broken the glass in the windows to get out and find my child. It is no wonder that these things happen to people with dementia all the time.
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Far too often, we get frustrated with people with dementia because it is too hard for us to understand how a person with dementia feels. Behaviors become annoying to us because we forget to imagine what it might be like to have dementia. However, I believe we all have had experiences that give us a tiny bit of insight into what living with dementia is like — experiences like the one I had this week, or maybe the time we came out of the mall into the parking lot and had no clue where our car was, or the day we left the pot on the stove too long, and it boiled over.
When we have a hard time understanding the behavior of a person with dementia, we should try to remember these times when we got a glimpse into what it might be like to live with it.
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This article first appeared on the author’s blog, RevKatieNorris.com, and is reprinted by permission.
[Headline image: The image features an elderly light-skinned person with short gray hair and a receding hairline. The person is wearing a light-blue patterned button-down shirt and looks somewhat sad and contemplative.]