· Shame,Dementia,communication

The first night I spent with Aunt Mary, we visited her favorite restaurant, Poppy’s, for dinner. She knew exactly what she wanted without looking at the menu and recognized the staff by face. The waitress knew Aunt Mary and even spent time asking how her grandchildren were doing. They had a lovely conversation as we waited for our meal and it was inspiring to see her have a pleasant conversation with an old friend.

The day had been long and frustrating for both of us as we spent hours touring assisted living facilities to help relocate her to a more appropriate setting, giving her the help that she was needing.

A nice glass of wine, friendly conversation and delicious pasta dish was exactly what we needed to end a stressful day.

The next day, we were back at it again, touring, walking, asking questions, taking notes and getting overwhelmed by the choices.

I could tell that Aunt Mary was wearing thin around noon and I knew it was time for a well-deserved break and lunch. The only place nearby was a local diner, so we decided to give it a try.

Immediately I saw a different Aunt Mary from last night. She held the elaborate menu in her hands, flipping through the pages and looking increasingly more confused. At one point I looked up from the page of sandwiches to see her place the menu on the table in front of her, close her eyes and shake her head in frustration.

When the waiter brought us our water and bread basket, he read off the specials for the day. I listened intently but noticed Aunt Mary flipping through the menu trying to find the descriptions of what he was explaining. I knew that the “specials” were not on the menu, but she did not.

A few minutes later he returned to take our order. Aunt Mary looked across the table with downtrodden eyes, so I took that as my cue to order first. The waiter then looked across the table for her choice. She looked up at him, mouth slightly open as if dumbfounded by the question.

Again he prompted her to make an order. In the 10 seconds that she stared straight at him, unsure how to answer, he became increasingly irritated.

“Ma’am, what is your order?” he asked in a curt and judgmental tone. He rolled his eyes and jutted one hip, obviously annoyed with her inability to answer

Aunt Mary looked over to me and then back at him. She lifted the menu, flipped through the pages. The waiter then addressed me, “Is she going to order or what? Doesn’t she know how to talk?”

At this, Aunt Mary placed the menu down, turned her face away from him and looked out of the window with tears welling up in her eyes.

“Aunt Mary,” I began, “last night you ordered the spaghetti with meatballs and loved it. Would you like to try that again? I see it on page 5 and it looks delicious.”

Aunt Mary nodded her head in agreement but never turned to look at either of us.

We ate in silence as I reflected on what had just happened, considering how the memory lapse and confusion at an overwhelming menu made her freeze up. Even more upsetting to me was how the waiter treated her. As if she wasn’t frustrated enough already!

I knew at that moment that we had wandered too far from the comfort zone that allowed her moments of success. In the car, I crossed off the remaining list of facilities we were going to visit. They were too far from what she had grown to know and love. We needed to focus on places that felt like home, as close to home as possible.

When I would come back to visit in the following weeks, I wanted to make sure I could take her to Poppy’s, have her order her favorite meal, talk to the staff that had watched over her all these years and supported her increasing needs.

As her disease process stripped away more and more of her abilities, it was even more important that she be provided opportunities to find happiness, seek joy and feel “normal” and “able”. The probability of her not finding the right words was increasing and it was essential that she be surrounded by people that understood and had the patience and love for her, regardless.

Not everyone understands how to manage a situation that is uncomfortable. We often want to fill the silence with the sound of our own voices in order to fill the void. The reality, however, is that we are often unaware of how our anxious body language and verbal intolerance affects a person who is already struggling. A person living with dementia is already self-conscious of their abilities, and lack thereof.

Our implied impatience and frustration can cause someone to become even more stuck in a spiral of shame. When I considered what it would have felt like to be talked to in that manner and treated with such irritation, it became apparent that we need to treat others the way we need to be treated. It is a perspective that is universal.

- Written by Cathy Braxton, CDCS

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