Pearls in Kyoto
Does one success pave the way for future successes? Maybe. But it takes hard work and opportunity, and perhaps a bit of luck!
In 2016 at the 4th World Parkinson’s Congress (WPC) Elaine Book and Lissa Kapust were part of the committee to introduce and organize a Care Partner’s Lounge (CPL) as an option for care partners. We built it and they came! The idea behind the CPL was that care partners (CP’s) would value time to talk to one another and learn. This happened over the course of the day in various ways: structured support groups, informal interactions sitting on comfy sofas and to listening to scheduled talks (i.e. maintaining intimacy, self care, end of life issues). For most care partners, the time at WPC was spent with the Person with Parkinson’s (PWP), time at the CPL was “time out” for themselves. The PWP could spend time in a number of other activities such as massages, Reiki and relaxation/mindfulness programs.
As a result of the success in Portland, the planning committee for the 5th WPC in Kyoto wanted to think about whether the Portland experience could be replicated in Japan? What modifications would we need to make? Would the same format work? Could we find staff in Japan who could coordinate the activities for Japanese speaking participants? Would Japanese Care Partners take time out of the busy schedule of other WPC activities to come to the CPL?
In Kyoto we added one more element: cross cultural research. So, in addition to nail biting about whether we’d have success with the CPL, there was also tension around identifying 30 care partners from around the world, willing to talk in focus groups on the last afternoon of the final day of the WPC. The plan was to gather them together for 1 hour in 3 groups answering questions that probed the experience of caregiving.
All of the planning was a bit of a guessing game, but it was exciting to be part of this bold adventure.
Our most important piece of luck was finding Mayura Ueda, a Japanese social worker who became our liaison during the months of planning and was front and center during the 3 days of the WPC! Her input was critically important in considering the content of what was offered in the CPL and in leading many of the discussions. She quickly became part of the team; eager to offer Japanese speaking WPC attendees the comfort of the CPL and the chance to talk openly and learn.
Here’s some of what we learned in the 3 days of programs offered at the CPL. We’ve broken hours of conversations into a few overarching themes. These comments come from CP’s from all around the globe:
Expressions of stress:
“Communication is the biggest barrier. Two different people have two different ways of thinking about the same thing and express themselves so differently”. “Her voice is so soft”
“Time management is very challenging; it’s hard to get things done and get going.”
“We get into fights when I want to assist him. It’s hard to know when to step back.”
“I feel like I’m on the bottom of my wife’s list. She’s not focused on me anymore.”
“It’s the future that scares me most.”
Use of humor:
“My wife sent me to an audiologist because I can’t hear her; her voice is so soft. Of course I didn’t have the hearing problem, she has a speaking problem!”
“Bad people don’t get PD!”
“The exercise for my husband paid off. He could lift the suitcase into the overhead compartment on our trip here!”
“I’m active in church. I sing in a choir.”
“ALONE TIME helps me greatly.”
“Don’t isolate yourself. Go out. Go boxing. Go dancing. Don’t put yourself in a box and close the lid!”
“I run a quilting business. Working with bright beautiful colors really helps me.”
Cultural and Country Differences:
“Specialists in PD are hard to find.”
“We don’t have Support Groups around”.
“Our culture doesn’t have a formal way to help guide one and find resources.”
“We have socialized healthcare which makes costs of care not an issue.”
“Our medical professionals are paternalistic; patients aren’t comfortable in their own health management.”
Positive aspects of the care partner role:
“I hold onto ‘an attitude of gratitude’.”
“I’m his cheerleader and I like that role.”
“PD has brought us closer together.”
“We’ve met a lot of fantastic people at the Parkinson’s Foundation.”
“Don’t pile all the problems up that may or may not come in the future.”
“The use of a wheelchair has freed up my wife who can now enjoy time in a museum.”
“Get out and learn about the resources.”
“My wife LIVES with PD. It doesn’t have to define you.”
The magic of WPC:
“We were on stage at WPC Opening Ceremony dancing with Pam Quinn. It’s uplifting!”
“I have learned so much at WPC, I hope I can slowly integrate it into our lives once we are back home to overcome the challenges.”
“My husband is usually quiet, but here at WPC he has started expressing himself!”
“We’ve been to every single WPC!”
“We could come to Japan because he is physically able!”
Clearly, the above quotes just give a taste of the WPC Care Partner Lounge experience. What the quotes can’t capture is the sense of excitement and the buzz in the lounge when care partners connected. We provided a bulletin board, offering care partners a chance to leave their “Pearls of Wisdom” of advice for others. They did this! As care partners left the CPL we offered them a glittery pearl pin; a symbol of the pearls they had learned and shared.
It was truly an awesome experience for those of us who created the Kyoto Care Partner Lounge to see so many WPC participants walking around over the 3 days of the conference proudly wearing the pearl pins (women AND men!). The magic in Kyoto helped create a bond for care partners that we hope extended well beyond the WPC’s final closing ceremony.
Lissa Kapust, LICSW presented at the Fourth World Parkinson Congress in Portland, Oregon and the Fifth World Parkinson Congress in Kyoto, Japan. She helped launch the Care Partner Lounge at the WPC 2016. She is a clinical social worker at the PD Center of Excellence at Beth Israel Deaconess Medical Center and also coordinates “WellnessWorks”, a series of exercise and education programs.
Elaine Book, MSW, RSW was a member of the WPC 2019 Program Committee and has presented at the Fourth World Parkinson Congress in Portland, Oregon and the Third World Parkinson Congress in Montreal, Canada. She is currently the Clinical Social Worker and Centre Leader for the Parkinson's Foundation Center of Excellence, the Pacific Parkinson's Research Centre at the University of British Columbia in Vancouver, Canada.
Mayura Ueda, MSW helped plan and execute the Care Partner Lounge for the 5th World Parkinson Congress in Kyoto, Japan. She is currently a clinical social worker at Ueda Clinic and Medical cooperation AOITORI-KAI in Tokyo, Japan.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®