On Tuesday, I woke up with a start. I checked my phone and saw that it was 11am! I immediately panicked because I slept through my alarm and did not take 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 back yard to see if 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 just woke 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 did wake up on time. I had already taken my son to school. I came home, took a shower, and then I took a nap.
After I remembered where my son was and that I had just woken up from a nap, I was still shaking. I was disoriented and scared. The experience of loosing 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. This is often the experience people with dementia have. 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 they are lost. I was lucky because when my brain finally oriented to space and time, I understood that what had happened was not real. People with dementia often cannot reorient. Actually, attempting to reorient them and tell them what is “real” only increases 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 acknowledged my fear of loosing my son and helped me find him. Maybe the “finding” meant a phone call to my child, or being told that he is not here, but we can write him a letter together. If you really know the person, there are many things you can try to safely be part of their world and meet their needs. Now, if I would have had dementia and had 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 would have 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 not wonder that these things happen with people with dementia all the time.
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 do 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 come 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 dementia.
If you ever get the chance to take the Virtual Dementia Tour, I encourage you to do so. It is a great way for you to know what your loved one might be going through.