My mother’s brain was trying to speak to me, but I did not know how to listen. Like most dementia caregivers, I was lost in an ocean of terrifying facts and little understanding of what was really going on with her. Fifteen years later, and armed with insights into the neuroscience of dementia, I look back and I can see with great clarity what caused my mother to act in the ways she did, and what I missed during my interactions with her. Guilt surges its head of course, and I wish I had another chance at doing it right. I also realize the pain I feel can be put to good use. Here, for those of you currently involved in caring for a loved one with dementia, are some examples of situations I encountered with my mom, and of how I responded then, and would respond now based on what I learned.
“Don’t rush me.”
I used to get so impatient with my mom. It would take her forever to get things done, like the one time we had to catch a train, and she could not seem to make up her mind about what to pack. I can still picture her sitting on the floor in front of her open suitcase, clothes scattered around her, and becoming more and more anxious as I reminded her of the clock ticking. I thought, “What is wrong with her?” This was before any other more dramatic signs surfaced of her dementia. Now I would look at her behavior and immediately think executive function, the brain’s ability to initiate and carry out common tasks. That part of my mom’s brain was no longer working properly and she needed help. Instead of rushing her, I could have said, “First, let’s pack a few sweaters.” and given her the option to pick one from two at a time. Giving her a place to start, breaking down the task into simple steps, and limiting the number of choices, these are the things my mom’s brain was asking for.
“There is a stain on the credenza.”
My mom used to call me in a panic. “I don’t know what’s going on, someone’s been messing with the furniture. There is a stain on the top of the credenza and it won’t come off.” I imagined her standing over the credenza in her dimly lit dining room. All my efforts to calm her down and reassure her that the stain must have been there before were fruitless and she would only get more ramped up. What I did not know is the fact that dementia can affect one’s ability to interpret things visually. When that brain function is affected, there are some simple strategies that caregivers can take such as eliminating clutter and providing adequate lighting. If I had known, I would have arranged for someone to install more lights in my mom’s dining room, and I would have instructed her to turn the lights on. The shadows from the dim lighting would have disappeared, and so would have the ‘stain’ on her credenza.
“They are coming after me.”
One of the most distressing episodes occurred over Christmas, after my mom had flown in to visit from France where she lived with my brother and his family. We had just moved into a new home, and there was lots of activity, people coming and going throughout the day. My brother had warned me that mom had not been doing well. She had been seeing things that were not there, and appeared more and more preoccupied. I thought I would cheer her up by hosting a lot of dinners and parties. I also encouraged the children to bring all their friends at the house. My mother had enjoyed visitors during her previous times and I assumed this time would be no different. My mother did ok for a few days, until one night when she started hearing and seeing intruders all over the house. I told her there was no one to be feared. She tried to go out to call my brother and I ended up having to guard the door all night so she would not leave the house and get lost. This continued for several days and nights. Eventually I ended up having to fly her home early. This would be my mom’s last visit to the U.S. and I often thing how different things would have been, had I know. See, whenever the dementia brain is prone to hallucinations, it needs to be treated with great caution. In particular, one should minimize changes in routine. Excessive noise and activity are to be avoided. Watching TV can also trigger hallucinations. During my mother’s visit, I had subscribed to a French TV channel, thinking that it would help her feel more at home. She showed little interest, often choosing to leave the room whenever I put the TV on. This in brain’s language means sensory overload.
I shared those few stories with you in the hope that you will get inspired to maybe start listening to your loved one’s brain. It will help you better understand and relate to the person in your care. To find out more about ways that the dementia brain ‘speaks’, go to the University California San Francisco Memory and Aging Center’s website.