“I feel like this whole experience has really been my father taking care of me…”
We are as a society – thankfully — becoming more aware of care partners’ struggles to provide loving care to a spouse, partner, parent, sibling, or dear friend living with dementia. But as Anne Basting writes in her new book Creative Care…, do we ever consider what it looks like to receive care with love and grace? And as we often ask at ARTZ Philadelphia, do we sufficiently recognize and honor the capacity of each person with dementia to give care and love to others?
This story celebrates a remarkable care relationship between a father and daughter that blossomed in the wake of his dementia diagnosis.
When Dick Orgass and his daughter Sarah attended their first ARTZ @ Woodmere program in early 2015, they were both reserved. Sizing up the room and the experience. They seemed inward-turned, a bit unsure of themselves and each other, though both flashed engaging smiles at the facilitator from time to time.
When they returned two months later, things were different.
Within minutes of the start of the program, Dick seemed intrigued that another new participant – Carl — had jumped into the conversation with gusto. Carl had also been quiet to begin with, but his fascination with the oversized trompe l’oeil painting in front of the group that looked like a huge crumpled sheet of paper seemed to get the better of his scientist’s yearning for close scrutiny and investigation. Dick was a scientist as well, and Carl’s full-on engagement with investigating proved infectious, drawing Dick into the process. Before long, Dick was vocally leading the group’s response to the next painting.
Over the next eight months, Dick and Sarah became regulars at all of our ARTZ @ The Museum programs and established themselves among the most energetic and enthusiastic of participants. And as they did so, they seemed to turn towards each other, to discover the joys of sharing their observations with each other and the rest of us. Sarah would recount the myriad ways in which her father had amazed and delighted her with his recall of experiences they had shared in front of particular works of art that we were viewing together, inhabiting his memory for months in some cases, even though his short-term memory was generally growing fragile and fragmented.
In the fall of 2015, Sarah and Dick moved from Philadelphia to Rochester to be closer to the support of other family members. Just before they left, Sarah wrote this about her relationship with her father:
“Funny thing is that I feel like this whole experience has really been my father taking care of me because it has connected me to so many wonderful people … and taught me more than I ever could have imagined. My father may not have the same memory he used to, but he certainly is still filled with an extensive amount of wisdom. I think he has been more of a father to me this past year than in the other 33 years of my life. So I think we both get caretaker designations in our situation.”
During the years that followed, Sarah continued to serve as an ardent advocate for Dick’s well-being as his illness took its course. She and Dick developed a penchant for dressing alike (“great minds dress alike,” as Sarah posted on her Facebook page) and delighting themselves and others with such happy coincidences that embodied their relationship’s evolution into true mutuality.
When Dick died on April 28, 2020, Sarah was by his side, as ever. We celebrate them for showing all of us what a real partnership in caring is all about.
Read more about Dick Orgass and his daughter Sarah in our previous blog post “When a Dementia Diagnosis Brings Family Closer to Each Other”