An Empathetic Peek Inside the Mind With Dementia

Do you have a hot button? An event, a chance comment, something you hate doing because it pulls a negative trigger inside you?

For me, it’s anything that makes me feel stupid.

As a little girl,  I often missed things. We would drive in the country and my parents would point out cows or horses in a field, but I’d miss them. At school, I was a barely average student. I drifted away into my own fantasy world and didn’t follow instructions. My parents wondered if I had a learning disability.

I didn’t.

I couldn’t see. Glasses weren’t common among children in those days, and no one picked up on it.  I didn’t know  my foggy world wasn’t what everyone else saw. When I received my first pair of glasses in grade three (amid torrents of tears because no one wore glasses and I knew I would be laughed at) the world suddenly became clear and I understood. I saw the cows and horses.

It left its mark, though. Whenever I’m in a situation where I feel I’m being judged as dumb, stupid, not quite “with it,” I’m that little girl again. I want to yell, “I’m smart, I just don’t understand this thing you find obvious!”

It’s given me a special empathy for people with dementia. They struggle with a world which appears foggy. One man described it as having a well-ordered cabinet in which you keep all your information. One day you open one of the drawers and it’s empty. Another drawer is switched in position. A third has all the cards put in a different order. The worst part is, the cabinet is different every time you open it. You might find all the drawers in order, and you sigh with relief. But as time goes on, they are scrambled more and more. Why do those with dementia withdraw, get angry, look confused and say things that don’t seem to make sense sometimes? It’s all about the drawers.

Here’s a scenario from my life. On a trip to the local drug store, I pick up several items I needed and head to the checkout. I want a packet of stamps, which I knew could be obtained at the cash register. While I place my items on the desk, the cashier begins to fire questions at me. Do I want a bag? Do I have the store’s points card? How would I like to pay? Every time I opened my mouth to ask for stamps, she fired another question. Finally I blurted out, “I need stamps!” She looked startled, and pulls them out of the drawer. Her look as she checked me out clearly said “crazy lady in aisle one.”

Another scenario. I ventured into a certain much-beloved-by-others coffee shop. I’d never been before, but was with a group of people from work who frequented the place. I stared at the board behind the counter, and had no idea what to order. The sizes, the combination of drinks–everything was in a language I didn’t understand. What happened to medium and large? The young man behind the counter began firing questions at me, and I backed away in bewilderment. With obvious impatience, he asked me again what I wanted, so I ordered what one of my co-workers was having. Lemonade. I don’t like lemonade. It cost a fortune and tasted sour, but it made him stop asking me questions.

Is this what it’s like to have dementia?

Do well-meaning questions come across like rapid-fire bullets when your mind can’t process the information quickly enough?

Does it sometimes seem like people are speaking a language you haven’t learned?

Do you feel intimidated and forced into making choices you don’t want, because you don’t understand? Does that make you angry?

Today, I invite you to experience empathy, and to enter into the world of the person with dementia as much as you are able. Understand how frustrating and confusing the world can be. Allow yourself to shrink in shame when you don’t comprehend. Feel the tears prick your eyes when you realize you’ve made a mistake. Or perhaps you hide behind bravado, insisting the fault was someone else’s.

With even the tiniest particle of understanding, perhaps we can temper the way we respond.

Slow down.

Smile.

Give the gift of respect.

Listen.

One more scenario. I don’t do my own taxes. I don’t have a good relationship with numbers, and I find the whole process frightening. However, I gave myself the “You can do this” talk and phoned the tax preparation people. The lady on the other end of the phone sounded rushed. She took my name without listening and missed the second part. Then she wanted my social insurance number, which I had to dig for. Who knew they would need that to make an appointment? Sounding frustrated, she gave me a date and time next day.

Armed with my file folders, paperwork and sticky notes, I headed over to the office, only to find the door locked. They closed an hour before my supposed appointment. Maybe between her accent and rapid-fire words, I heard it wrong. I’m sure it was my mistake, not hers. The experience left me feeling frustrated and angry. If she’d just slowed her tone, or repeated the appointment time once, this could have been avoided.

I’ll take the experiences in these scenarios, and use them to help me enter into the world of people with dementia. I’ll remember the confusion, the frustration and the judgement, and I will be different. I will listen. Smile. Slow down. Respect.

Hmmm. Good principles to offer all my relationships, don’t you think?

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