Myra grew up listening to classical music and attending operas on the weekends with her mother. She would wait for her mother who worked long hours to return home and spend time with her. Often, they would listen to Chopin together, and her mother would tell stories of how she used to play piano as a child. As the years went by, she grew closer to her mother, becoming both her close friend and her care partner as they navigated life with her mother’s dementia diagnosis. Myra took her mother shopping, prepared meals for her, and made sure she was dressed every morning. She took her mother to doctor’s appointments, to visit family, and to museums and music venues that were a safe space for them.
Myra was there for her mother, but she did not always have the time to tend to her own needs or share experiences outside of their routine.
This story is loosely based on a story that I have heard many times, and recently, I heard this story echoed by Meg Kalafsky, my colleague who studied Psychology and Sociology, and now has discussions with care partners every week as the Program Coordinator at Penn Memory Center for the Time Out Program. After hearing about “the struggles that care partners experience while trying to care for their loved one” and “the ways in which caregiving has affected other parts of their lives (socially, emotional and physical health, career choices),” her time with care partners has been “eye opening.”
In her conversations with care partners, Meg has often heard “about the practical things, such as their loved one's current medical conditions” and “strategies that work well when their loved one becomes agitated” but she has also listened while care partners reminisced on times when everyone was in better health.
“[It] has impressed upon me how loving and strenuous caregiving is,” she said. “The thing that caregivers need most to continue being effective caregivers is weekly respite. A time to charge their own batteries and care for their own health so they can continue taking care of their loved one.”
Meg’s work in the Time Out Program has centered around matching trained college students with families to facilitate meaningful, in-home engagement through companionship that includes conversation, reading, or mobility assistance. For example, Myra’s mother could be paired with a student who enjoys playing the piano and shares a love for classical music.
In 2014, readers of the caregiverspace.org were asked to share a piece of advice or one tip for other caregivers. There were 106 responses. Some of these responses included:
“Patience. Much patience. And laughter is a close second!” – Tammy Lewis
“Take care of yourself so you can take care of others.” – Diane Croy
“It’s not ONE day at a time, start with breakfast and work your way toward lunch… just a little at a time.” – Stacey Gordon
“Humor goes a long way. So does kindness and love.” – Tammy Martin
“Don’t be too proud to accept help when needed.” – Marjorie Deuell Fox
“Create relationships with those who share similar struggles.” – Kara Davioni
“Instead of trying to bring your loved one to your side of the river, go to theirs. Try and truly understand what standing in their shoes is like. Join THEIR journey.” – Diane Marie Jurgensen
This advice echoes similar advice given by AARP, who urge care partners to take care of their own health, find kindred spirits, avoid beating themselves up, and get organized.
At ARTZ Philadelphia, through our ARTZ Cards project, we are creating decks of cards that can support, comfort, challenge and inspire people living with dementia and the people they love. These cards will contain words and images shared by fellow journeyers: brief words of encouragement, thought-provoking questions, and lessons learned. They also will contain beautiful images created by participants in our programs, whose creativity is an inspiration in itself. We are asking for your help! What is the greatest gift you could give to a fellow traveler through the ups and downs of living with dementia in just a few words? Or by asking a simple question?
We also aim to provide engaging, stimulating experiences and relief from the daily grind through Café for Care Partners, a series of programs for care partners of people living with dementia. This March, at a special Café at Woodmere Art Museum, comedian, actor and life coach Jennifer Blaine will perform her new interactive piece “Having a Good Time”, a show about the one problem we all suffer from, and ways to expand the upper limit we place on the amount of joy, flow and fun we usually experience.
For more information and to RSVP for the March 18 Café for Care Partners at Woodmere Art Museum, visit our event calendar.
To learn more about Jennifer Blane and "Having a Good Time" visit her website.