Thomas R Stegelmann, courtesy of Flickr
Welcome to the second in an 8-part series of blog posts on The Eden Alternative Domains of Well-Being(TM). You can read more about these domains by clicking HERE!
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In 1984 I worked in an Adult Day Program that served people living with dementia, and also had a fair number of people attending who lived with Parkinson’s disease. One of the things that really jumped out at me at this time of my career was how differently our staff care partners thought about and interacted with the Elders, as opposed to how the family seemed to see them.
A woman I’ll call Helen had a beautiful smile and often struggled to get the right word out. I could usually get what she was trying to tell me by watching her gestures, and she sighed with relief when I offered the misplaced word.
Helen was always well-dressed, lipstick in place, and she carefully carried her purse on her arm. She had worked as an accountant in her career, and she enjoyed sitting behind the director’s desk. She looked completely at ease next to the large adding machine!
I loved Helen, appreciating her playful spirit, and the way she laughed when someone would dance with her. One day I had the ladies gather in a circle in the side yard and we tossed a Nerf football around. Helen placed her handbag carefully at her feet, and proceeded to have a great time with our silly game. No rules, just fun.
Helen’s family members were often tearful when they dropped Helen off at the program, and explained how hard it was for them to lose the “old Helen,” the mother and wife who had been so sharp in her work and careful in her dress. Now Helen couldn’t tell one end of a sweater from another, and needed help getting it turned right-way around.
Which identity was truly Helen?
Here is a place where we want to “embrace the power of ‘and,’” as Dr. Bill Thomas says in his book, “What are Old People for: How Elders will Save the World.”
A big part of Helen’s identity was about her past: her work, her relationships, her special skills and talents. Knowing her history helped us understand why she was so attracted to the big desk and its adding machine. AND a big part of Helen was the desire to connect she brought to the program every day: the painstaking conversation, the laughter, and the dancing.
I always honor the grieving process a family experiences when a loved one lives with dementia and the changes it brings, AND I am here to say that there is tremendous joy in seeing who the person is now, and getting to know them as they are, now.
Sometimes it felt like Helen and the other folks in the day program needed some time away from their dearest loved ones, where the sadness and frustration couldn’t help but reflect in their eyes. I believe they needed an environment where they could be accepted and loved for who they are now, and that can be easier for someone who is not a close relative or long-time friend.
We may be seen by the people around us in different ways, depending on the relationship and the context. It’s another way to understand how a care partner team can work together to both give and receive care from one another, and help us express the many facets of our identity!
How do you support identity for Elders who live with dementia? How about your own identity – are you able to do the things that connect with your innermost self, or have you pushed some part of yourself aside to cope with the challenges of caregiving? Please share your stories with our community in the comment spaces below.
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Lisa Kendall supports well-being in her work with Elders and their family care partners, as well as with professional care partners. She is an Educator and Mentor for The Eden Alternative, and has a private counseling and consulting practice in Ithaca, NY.
