Caregiver Vocabulary

Since I was old enough to hold a pencil, my love of words has been profound. But dementia forced me to learn some strange ones that I don’t like.

Let’s start with perseverate. The first time I heard it, I thought it sounded like some fancy version of a word I value: persevere. We learn early in life that we must persevere in order to overcome obstacles. Learning to ride a bike or do higher level math requires perseverance. When facing the fallout of dementia, caregivers must find the strength to persevere each day as the disease changes shape and challenges our will. People with dementia must also find the courage to persevere, especially in the early stage of the disease when they endure the slow loss of many basic skills.

But perseverating is something quite different and not nearly as positive. If a dementia patient repeats the same action over and over again without pause, they are perseverating. Many people get stuck in an activity like folding laundry or pacing without noticing that their behavior has no rational purpose. My mom will scratch at a piece of clothing with any small mark on it. She can’t stand the sight of a crumb or a food stain. It never occurs to her that she won’t succeed in removing the pattern from a table cloth. When the disease first took hold, she liked to look at her clothes all the time. She would take them out of the closet to examine the sleeves and buttons. This seemed to be motivated by fear that her shirts would turn into something she did not recognize.

A person may perseverate because they’re bored. Or they may not remember that they’ve been at that task for a long time. Often they won’t stop until they are attracted to some other activity. If you are sitting with someone who is perseverating, it can be tough to ignore their actions. My mom’s scratching often grates on the nerves, but it won’t stop unless I give her something else to do. Sometimes I ask her to hold things for me so she has another task to manage. It can be as simple as handing her a piece of paper, which is enough of a job to distract her from the other behavior.

Another word I’ve had to study is hallucination. I never gave much thought to the difference between a delusion and a hallucination but it there is an important distinction. According to the Dementia Care Central Website funded by the National Institute on Aging, hallucinations are defined as “experiences when a person smells, tastes, feels, hears, or otherwise senses something that does not exist”. They are quite convinced that what they are seeing or hearing is real.  Someone having a delusion, however, does not necessarily see or hear something that upholds their belief. A delusion is more like a fear or “false understanding” that occurs even when the person observes no evidence that their phobia is based on truth. For example, people with dementia may fear that someone is taking their money or  poisoning their food though there is nothing to suggest that these things are happening. At one point, my mom thought her bus driver was stealing from her. She would wake up in the night, unable to forget this notion and start searching for her purse.

When these difficult words start to sidetrack my relationship with my mom, it can be hard to maintain a sense of calm. Then I know I need to shift my attention to other words — like patience and understanding — which can help me see things in a different light.

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