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Dementia: Where Things Feel Right

April 26, 2018

CAREGIVERS_WORKING_WITH_DEMENTIA.jpg“I’m not going!” Suddenly, Carl was unwilling to move from his seat. The Augustana Care Open Circle Adult Day Services staff was baffled. He generally followed the routine with ease and went to his usual chair in the next room. “I am staying right here.” “They want me to go.” Suddenly the staff realized that someone had said, “Let’s go to Kentucky for the Derby” as a way to introduce the following program on the Kentucky Derby.  

In my dream last night, I was putting old movie projectors in my car and they weren’t all going to fit. I had just left an ancient household, filled with mementos and Christmas decorations. Off to my left there was a table set for a family, but no one was there. That could be like the world of dementia where everything is unpredictable. In that world you could be suddenly heading for Kentucky. My dream turned into a bit of a nightmare, a struggle with the car and too many things. When I awoke and found this task wasn’t real, I could flip over, readjust my pillows and wonder where the next dreamscape will lead. In dementia it isn’t that easy. We search for places where things feel right.

Sometimes focus is the answer. I see it in art pages, puzzles and projects when members concentrate on the color and shape. Sometimes music is the answer. It is comfortable in the familiar song where the words come without thinking. They emerge in the right order, without stress. The sound is pleasant and brings back a memory of feeling.

Other times laughter is the answer. A shared moment of memory, a bad joke, or a little bit of foolishness goes a long way in lightening the journey. I always remember a stressful incident when I was trying to re-direct a client so she wouldn’t stumble into an unpleasant situation. “Phyllis, let’s go over here and sit down, this way Phyllis.” She responded, “I’ll sit but I’ll never be Phyllis.” It was the perfect retort because, in my stress, I was calling her by the wrong name. We collapsed on the sofa in laughter, with tears streaming down our faces. In that circumstance laughter overcame memory loss and we still relive the moment whenever I look at her and say “Phyllis”.

Often, routine is the answer. I notice it the most as we go to the lunchroom. Everyone knows where that is and they walk with confidence. Some members want to run, as it is also about getting the right place to sit, commonly referred to as “my chair.”  The challenge, besides the chairs, is routine without boredom. Our days are structured the same but the content varies. This is counter intuitive. I seek out different locals and experiences. Early in my time at Augustana Care Open Circle at Apple Valley I thought one day that it would be fun to have lunch in the large dining room upstairs. Very few were comfortable with the change. “Where’s my wife?” and other anxiety surrounding the idea that their families and care partners would not be able to find them. The caring staff at Augustana Care Open Circle Adult Day Services understands the confusion and anxiety that goes along with change for some members, so until we know someone very well we are careful with field trips. One staff person recalls a member having a breakdown that could only be described as complete panic, on a peaceful drive around the lake. She didn’t know where she was and her usual guide, her husband, was not beside her. Reassurance, familiar names, familiar themes and quiet conversation refocused the member to the inside of the bus, rather than the unfamiliar landscape outside the window.

Sometimes it’s a friend that makes the difference. In the dementia world we should widen our definition of friend to human connection. I’m reminded of a flight from Denver one summer when as we pulled out over the mountains we hit an air pocket and the airplane dropped suddenly. When we leveled out I found I was holding the hand of the woman next to me. A long wait, a delayed plane, a traumatic event on the news makes us reach out. The members of Augustana Care Open Circle often experience this spontaneous friendship. It is probably the most beautiful thing that happens with dementia. The fact that you smile or show kindness, brings a hug or a kiss or the gentle feeling of a hand slipping into yours.  That is the place that feels right with or without dementia, one human hand reaching for another.

Augustana Care Open Circle Adult Day Services provides respite care for caregivers while helping people with changing physical, cognitive, and/or social abilities to enjoy fulfilling lives. We offer three convenient locations throughout the Minneapolis and St. Paul metro area. Each of our locations offer programs, recreation, personal care, respite and social connections to individuals with memory loss or other emotional and physical needs. Contact one of our centers to learn more about how Augustana Care Open Circle can support care partners to find balance and meaning in a life touched by memory loss or other diagnosis.

Patty_Crawford.jpgThe author, Patty Crawford, is the Center Manager at Augustana Care Open Circle of Apple Valley. She has been a part of Augustana Care for 41 years. Patty is also a sought after public speaker on subjects of aging. She weaves her insight and research into meaningful presentations. Patty is a Master of Leadership graduate from Augsburg University.