This is the second in a series of three posts.
1st post in this series: Robin Hood Redux: MLRC Care Conference 2015: About
3rd post in this series: Robin Hood Redux: MLRC Care Conference 2015: Workshops
80% of long-term-care services in the USA are provided by (often unpaid) family caregivers. Many in this population do not have access to the latest and greatest conference presentations due to barriers financial, geographical, physical, or otherwise. As part of my spiritual practice, social justice activism, and personal healing, after conferences, I write an edited summary of my best experiences and learnings for people who did not attend. Let there be light!
Moving forward with a listening heart,
vision, inquiry, and action,
Note: Please e-mail me with any questions or clarifications. Thank you.
Conference Morning Take-Aways
Networking Breakfast Before the Conference Start (8:00am):
Enjoyed a light breakfast (yogurt) from the continental breakfast table. Saw and greeted fellow members of the MLRC and conference sponsor tables, including Linda Ungerleider, a respite-worker trainer (through the REST program; visit www.restprogram.org), and Linda Bohmbach, VP of Sales & Marketing for Home Healthsmith (visit http://homehealthsmith.com).
Conference Welcome (9:00am)
Amy Nazaire, MLRC Project Director, welcomed everyone.
Elin Howe, Commissioner, MA Department of Developmental Services, gave opening remarks, including:
- Family caregivers provide 80% of long-term-care services.
- Of these caregivers, 89% report they receive no respite.
- Respite allows family caregivers to: work outside the home, attend to household tasks, and enjoy a break from the constant demands of caregiving.
- 9,000 or 1/3 of the Developmentally Disabled served by MA state are over age 50.
Sue Thompson, from the same state office, shared:
- Options Counselors, available through local Councils on Aging, offer free community-based support.
- 10,000 people turn 65 every day in MA
- Life expectancy in the USA is 78 years. In MA it is 80.7 years.
- If you live to 65, you are expected to live another 20 years.
- There are an estimated 800,000 caregivers in MA.
- More respite options are needed!
- It is the 50th Anniversary of the Older Americans Act.
- Accessible, affodable, flexible respite is what everyone needs!
- May is Older Americans Month in MA (Sue read Gov. Charles Baker proclamation)
Plenary Panel: Community Caregivers Making Respite Happen! (9:15am)
Panel Members: Charles (Chuck) Felix, Helena Liedtke, Beth Soltzberg, Lenard Zohn.
Chuck Felix, VP, Adams Agricultural Fair, spoke about finding a role at the Adams Agricultural Fair for his son with a disability, “We know what he can do… let him do it. We’ll find him something to do.”
In terms of including more people with disability in the context of your community, you can ask, “What would you like to do? What are you able to do?”
Chuck also had these wise words,”The more they are out in the public, the more support they’ll get, the more they’ll be able to take care of themselves.”
Beth Soltzberg, Manager of the Alzheimer’s & Related Diseases Family Support Program at the Jewish Family and Children’s Services in Waltham, MA, and coordinator of the Percolator Network (cafe organizers) and Memory Cafe Directory in MA (visit the online directory), shared, “A Memory Cafe is like a coffee break in the 36-hour day.” She also made these points:
- 1 in 9 Americans over age 65 is living with a form of dementia. (source: Alzheimer’s Disease Facts & Figures, 2015)
- The Memory Cafe helps to
1. reduce social isolation for people with dementia and care partners
2. spark renewed connections for people with dementia and care partners
3. give people a sense of personhood
4. engage and challenge people of varied cognitive abilities
5. reawaken awareness of each others’ humanity
There are currently eight Memory Cafes and counting in Massachusetts (Marymac Missions is one of the sites currently piloting a Memory Cafe at our home in Topsfield, MA, USA – please email or call me for information).
Lenard Zohn, founder of Autism Eats (visit http://autismeats.org), shared some of the challenges of parenting an autistic child and the journey that led to the founding of Autism Eats. Autism Eats provides autism-friendly non-judgmental environments for family dining, socializing and connecting with others who share similar joys and challenges. Visit their website for information on the next dinner (in Massachusetts). Lenard is currently working towards growing the organization nationally.
Helena Liedtke, founder and President of Space2Thrive.org (visit: http://space2thrive.org) shared the story of learning her daughter had Spinal Muscular Atrophy, and the journey towards building inclusive play spaces. Visit her website to learn more.
Keynote Speaker: Rita Schiano, “Managing Caregiver Stress Through Resilience” (10:30am)
Some of Rita’s tips for resilience included:
1. Have an attitude of resilient optimism (the glass is 1/2 full and 1/2 empty… what can I learn from this?)
2. Be flexible in your thinking, think creatively.
3. Make realistic plans, take action, make it happen.
4. Connect with others, seek social support, join a support group.
5. Discover your joy, and train yourself to prioritize and practice your joy.
Rita’s closing remarks encouraged family caregivers, “Everyday, do something to bring yourself back into balance.”