1st post in this series: Robin Hood Redux: MAP Conference 2015: About
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.
Mary’s Private Notes (Edited, with Personal Commentary)
Background: Like a news reporter, I choose a small flip-style notepad to take quick notes at conferences related to caregiving and long-term-care, especially dementia-care conferences. I write with a red-ink fountain pen, to symbolize:
1. My own blood spilled as a family dementia caregiver (2007-2008).
2. My continuing sacrificial service role: by befriending my wounds, I am healing and am able to heal others (see: Nouwen, Henri. The Wounded Healer: Ministry in Contemporary Society. New York: Doubleday, 1972). I have sacrificed a corporate consulting paycheck now since 2007, for a greater good.
3. The blood past-present-future of family dementia-caregivers who unknowingly are swept-up in the fast flow of dementia-care, many unable to balance 24/7 care demands, and risk their own health.
4. The family-nature of dementia-care (80% of long-term-care services are provided by family caregivers in the USA).
5. Red is color of love in the USA, the color of risk and urgency (see now: your local emergency room signage).
6. Red in China is the color of good luck and joy… through sharing this information I hope to save lives, save marriages, save families.
These notes share truthful, practical information, and provide a candid social critique-towards-awareness-and-action/advocacy, while protecting my sources. The notes are presented in chronological order, as I met with individuals and listened to presentations throughout the day.
Conference Morning Take-Aways
Networking Breakfast Before the Conference Start (8:00am):
Enjoyed a light breakfast (yogurt) from the continental breakfast table. I sat with a VA social worker specializing in serving VA elders with dementia and their caregivers. “I have no money for coffee for caregivers. All the VA care is going to younger vets. Older vets are getting short-shrifted. The government is trying to get out of geriatrics, caregiver support and elder services. Elder services is getting more limited every year. I wish we had more of a national commitment… all this talk but no action.” This VA social worker illustrated the gaps, apparent oversights, if not neglect I experienced in 2007-8 when I journeyed with my mom, Margaret, at her end-of-life through a US healthcare system that barely noticed me, the primary caregiver, if only to ask for my signature on a form. Thankfully the US government was there to catch me and mom at our lowest – me out-of-work due to becoming her critical-care manager, supported in part by unemployment insurance, and a majority of her acute-care medical bills covered by Medicare (hopefully we won’t see the end of these government supports in my lifetime). However, the widespread healthcare system failures ongoing, resources dwindling, is what I saw with my own eyes and intuition when I founded Marymac Missions in 2010. US government priorities past-present-future would not be (and are not currently, per the VA social worker and my own listening-to-caregivers-in-the-now) able to keep up with dementia-care demands rising.
A family caregiver with a mom and brother (with downs syndrome) – both living with dementia now (mom at an assisted living facility, and brother at a group-home), joined us at the breakfast table. My heart went out to her… she was there to learn as much as she could.
Conference Welcome (9:00am)
Susan Antkowiak, Vice President of Programs and Services, Alzheimer’s Association MA/NH, welcomed 700 professionals in the sold-out large ballroom. She also spoke directly to me, “Many of you have a personal connection to this disease. You have stepped up to the plate and dedicated your life to people who really, really need you.” She had people in the audience stand up if you were: a support group leader, a member of one of MA/NH 15 Alzheimer’s Partnerships, a participant or volunteer in the Walk/Ride to End Alzheimer’s… with a majority of the room standing, she called us a “Tour de Force.” “On behalf of the countless families you touch every day, thank you, thank you, thank you!” This validation was nice to hear. Her presentation continued counting the number of helpline calls answered, consults, community education programs and participants, Alz. Association-sponsored support groups, volunteer advocates, health professionals trained, physicians collaborated with, Alzheimer’s Partnerships state-wide, Alzheimer’s researchers (10 in MA), the Walk to End Alzheimer’s, the largest in the nation, raised the most money… “Our mission is made possible by you. Everyone in the room is part of the movement.”
Jim Wessler, President and CEO of the MA/NH Chapter, spoke about this year being the 35th anniversary of the Alzheimer’s Association, and their 3-part mission: Care, Cause, and Cure. “Looking forward, we need a cure for this disease.” He urged conference-goers to learn more and sign up for TrialMatch. They are looking for volunteer advocates for the NH presidential campaigns. They are working towards having a physician training requirement for licensure. They are supporting people living with this disease, family and professional caregivers with their Power and Purpose program.
Keynote Speaker: Dr. Kenneth Doka, “Grief and Loss in Dementia”
Dr. Kenneth Doka could not have been a more perfect keynote speaker for where I am at with my grief journey now, after the loss of both of my parents (father, Joe, d.2013, cardiac failure), eight years after falling off the corporate cliff (in 2007), into the swirling pool of dementia-darkness and unexpected sparks of light, the experience that became for me like a scary not-so-fun-house/house of mirrors at a county fair… a disorienting game that disturbed my body-mind-spirit not for just the cost of a fair ride-ticket, but costs including acute-stress-disorder and post-traumatic-stress-disorder.
He helped my perspective on my relationship with my father, when my mother was ill, and the after-her-illness grief-and-loss journey. Dr. Doka spoke about dementia caregivers creating a DLR list of support people. “Doers” help with specific tasks (i.e. bringing in the mail), “Listeners” offer time and open, non-judgmental ears, and “Respite-people” provide time-off, fun activities, during which the tough topics aren’t discussed (this was my father).
My blood really boiled (and possessed my hand to draw a red river) when Dr. Doka mentioned “The Caregiver Health Effects Study.. a famous study… I’m sure you’re all familiar with it…” …the professionals at my table and nearby didn’t appear to know it… “caregiving is bad for your health!” Many in the audience nodded their heads and chuckled uncomfortably with self-awareness and years of professional experience in the field watching caregivers suffer deaths before their loved ones with dementia, due to living with their own human frailties + the unremitting stress of 24/7 dementia-care without proper respite breaks and a doable self-care program (this is the root cause of my work now, with knowledge of this “famous study” since 2010, I write, speak, train, and lead retreats from my own wounds to save the lives of dementia-caregivers).
He shared that “dementia is one of the top four burdensome diseases,” and cited studies that showed the dependent relationship between caregiver benefit experienced and grief and depression experienced after the loss – the more benefit a caregiver experiences, the more grief and depression they feel when they lose their loved one.
He suggested professional providers “break families into respite…” Modeling how to do this, he offered examples one might say to a weary caregiver, “You take a nap, I’ve got this.” Or, “Go out. I’m here.”
to be continued…